Diane L. Christopher is a lady from Buffalo, NY who lost her dear Mother to Alzheimers last year. She has written a lovely article entitled "Alzheimers Disease…….What’s It Really Like?", and has kindly given me permission to share it with you. If you look on the Menu on the left hand side, you will see a page entitled Alzheimers Disease, where I have placed her article. I’m hoping Diane will start her own website where she can publish all her writings, and much more information that she has gathered. If she does, I will let you know where to find her. If she doesn’t, I will be publishing some of her articles here as she sends them to me.

Jim and I would like to also wish you all a very Happy New Year.  I hope 2008 brings you all much love and joy.

MERRY CHRISTMAS AND HAPPY NEW YEAR

We spent two lovely days in Toronto, visiting with Jim’s family. Santa Claus dropped in to see us on his travels Christmas Eve, stopping long enough to have a game of Trouble with some of the kids, and nibble on some goodies, before he went on his merry way!

This was the first Christmas Jim and I have been able to spend with his folks, as in previous years our boys have all been home. Tomorrow we’re doing our Family Get-Together here.....with 28 of our family expected.

I managed really well today with 14 of us enjoying the Christmas Day together. I took the occasional brain break outside or in the den when I felt things were getting a little more than I could handle. My medications have sure made the world of difference for me.

Our dear Maria is home again, and little Quinn, pictured here, is overjoyed I’m sure to have her Mommy back home.

Well it is that time of year again......THE MEMORY WALK. I spent yesterday morning getting registered online. Seemed to take me longer this year to get it done properly.....and I get myself totally frustrated when I can’t seem to do it right! The harder I work at it, the more confused my brain becomes. It’s not too many years ago it would have taken me ten minutes......my goodness.....things do change eh?

If any of you would care to help find a cure for this disease, please click on the following link.

https://secure.supportthealzheimersociety.ca/ParticipantPage.aspx?PID=2055&L=2&CCID=24&GC=GTv2

Any support you can give would be much appreciated.

The projected number of people who will be diagnosed with alzheimers in the coming years is absolutely staggering. I know I’m meeting new people in chat nearly everyday, people in their forties, fifties and sixties.....diagnosed with some form of dementia. We need a cure so very badly!

Our lovely daughter in law Maria, pictured here with our son Gene, suffered a stroke this week and is in hospital recovering. She is having problems with speech and some confusion. Our prayers are definitely with Maria and Gene at this time and we wish her well on her road to recovery.

I spoke to Maria on the phone yesterday, and I could feel her frustration as she struggled to speak to me. It reminded me of how I was before my meds kicked in.....not being able to get the words together properly in my head, or completely losing track of what I was saying.

I think this was a wake-up call for all of us of how fragile our lives really are. It’s definitely time to "stop and smell the roses", enjoy each and every day, and love life!

I have been going to the chatroom daily at http://alzheimers.ning.com/chatroom.php. for nearly two years now. I have compiled a database of over 600 names of people I have met from around the world. When I get up each day, I get my coffee, check my email, and sign into the chatroom. I usually sit in the chatroom all day, only leaving to do my daily chores, and prepare meals. I listen for the DING DONG that indicates someone has entered the chatroom.

One of my friends I’ve met calls me THE GREETER. He says it’s so nice to know if he has a free moment as caregiver to his wife, that he can pop in to chat for a few minutes....that there is always someone there to chat to.

I just received a phone call from the Alzheimers Society of Ontario, asking if I would be interested in assisting with a new feature on their website. The page will be called Mary’s Blog....where people can write in comments or questions. I’m so happy to be able to assist with this project, and hopefully many people will find this a useful forum for sharing information.  The Alzheimer Society of Ontario website is http://alzheimerontario.org/english/home/default.asp?s=1

Please check it out....and I'll keep you posted when Mary's Blog is up and running!  Isn't life so fun?!!!

In talking to other people with dementia, it seems that worrying or having a strong feeling of anxiety is quite a common symptom that a lot of us are dealing with. This isn’t worrying about the future or any big thing.....this is worrying constantly about little things....things that don’t really matter. And the more we become fixated on the problem, the more confused our brains get. This confusion is accompanied by a feeling that our brains are swelling in our heads, like our head was going to explode. A friend I chat to all the time said he often has patients in the nursing home calling "Get the nurse quick....My head is swelling!" I can completely relate to that feeling. 

I’ve added a new page here on my website....DEMENTIA DRUGS. I’ve included information on the latest research showing how the use of the cholinesterase inhibitors (aricept, exelon, and razadyne) combined with memantine HCL (namenda or ebixa) help persons with dementia think more clearly and perform daily activities more easily. These drugs are not a cure and do not stop the progression of the disease, but I can surely attest to the fact that they have brought me back to near normal.

I chat daily at http://alzheimers.ning.com/chatroom.php with people from around the world, some with alzheimers, and others with vascular dementia or frontotemporal dementia. Those of us using both of these drugs are doing much better than those not on the drugs, or on just the cholinesterase inhibitor (aricept, etc.). I get so sad and frustrated when I hear about someone not on these drugs, because their doctor didn’t recommend it....or said it wouldn’t help them.....or they weren’t bad enough yet to have it. It seems to me that every one of us deserves the chance to see if it might not help clear the confusion in our brains.

I remember when I asked my doctor to please put me on the memantine HCL (ebixa) which I had heard about in the chatroom, she said she had just taken two people off it because it hadn’t made any noticeable difference, but she would try me on it. I read later it could take up to twelve months to notice any improvement. Unfortunately a lot of people are expecting immediate results. I can just say that after 1 ½ years on aricept and 16 months on ebixa, the results are fantastic.....and just keep getting better.

So if you, or anyone you know, has any form of dementia......please.......ask the doctor to try BOTH medications......life is indeed wonderful...and we all deserve the chance to embrace it to the fullest! They don’t work for everyone....but the quality of life can be so greatly improved, they are definitely worth a serious try.

We had a lovely surprise birthday party for our daughter in law Cindy this week.. I spent the day cooking the turkey and all the trimmings ......and just warmed them up when it was supper time. This worked really well, and I didn’t overload my brain.

Wednesday was our Alzheimers Society Directors meeting. Everyone was quite amazed that I arrived without my walker. Since my nightly leg cramps have mostly stopped, my balance has improved considerably....and I very seldom use my walker these days.

Today Jim and I went shopping for Christmas presents for grandkids .....we have ten grandkids and 3 foster grandkids.....so this was indeed a big event. I had my lists made up and knew what I was looking for at each store. I was having a little difficulty at Toys R Us finding what I wanted. I finally found a clerk......and my fuddled brain was able to ask for a Hannah game? "Oh, you must mean the Hannah Montana Girl Talk board game." Next I said "Ah.....Dora", and she led me to the Dora Explorer section. Thank heavens for knowledgeable sales clerks who can understand befuddled customers. My aricept and ebixa are still working well, cause I didn’t completely lose it at the store.

We had our visit to the ALS Clinic at Sunnybrook in Toronto yesterday for another EMG and nerve conduction test in my legs.  Again, there is no sign of motor neuron disease showing at this point in the tests, and Dr. Zinmann has no idea why I'm having fasciculations, spasms, leg cramps and balance problems.  I am a mystery for sure.

In order to avoid the 4 hour drive in rush hour traffic on Thursday morning, we decided to have a mini-vacation, and had a nice leisurely drive to Toronto Wednesday, arriving in time for lunch at Jim's parents house.  We enjoyed an evening at a motel not far from the hospital, and arrived at our 9:30 am appointment on Thursday well rested.  This is definitely the way to do these distant appointments for sure.  My next appointment with my neurologist for my dementia isn't until February, so I have lots of time to plan our next mini-vacation! 

HAPPY BIRTHDAY TO OUR DEAR SON GENE!  

We had an exciting weekend with various family members visiting for Jim's 60th birthday.  Everyone thoroughly admired our new apartment.....and I promise to get some pictures posted of it soon.

Nothing else much new and exciting this week.  My leg pains and cramps have started up again....but I did enjoy a couple of painfree weeks! It was great!  There have only been two nights where I had to jump right out of bed to get rid of the cramping, so it's definitely improved over what I had for the last year.  I have an appointment on Thursday for another EMG.  It would be interesting if they could find what is causing this for sure.

There were some caregivers in chat the other day discussing the medications aricept and ebixa, and how they only work for two years.  I really didn't want to hear that, and I'll be working hard to prove them wrong!!!

At my last appointment with my neurologist, I was amazed when she said I had scored 30 on the MMSE....up from a previous scoring of 26.  I was quite interested to read the following article this week.

Can You Have Dementia With an MMSE Score of 30?

(Source: AJA) - The Mini-Mental Status Exam

(MMSE) is the primary tool used by

neurologists to identify Probable Alzheimer's

Disease. Test scores range from 0 to 30 with

scores below 24 suggesting cognitive

impairment. However, it has long been

realized that those with more education may

be able to perform better on these tests and

cloak their cognitive decline.

In this article, researchers investigate

the possibility that people with perfect MMSE

scores of 30 may in fact still have

Alzheimer's disease.

Eight patients were found in the McGill

University/Jewish General Hospital Memory

Clinic database to meet the criteria of AD,

though they achieved scores of 30 on the

MMSE. Four of the eight patients were taking

cholinesterase inhibitors.

The researchers conclude that although

rare, it is possible to achieve a perfect

score of 30 on the MMSE, even if the subject

is suffering from a dementing illness.

I guess I'm one of the rare breed!

What a gorgeous Sunday morning we have.  The sun is shining...and the temperature is slowly climbing up from it's 2C (34F) overnight low.  Our pellet stove does a fine job keeping us warm and cozy.  It's neat burning pellets of wood instead of the hassles of using logs. 

We celebrated Seth's first birthday on Thursday.....and I even baked his birthday cake!  He loved the experience of squeezing the delicious chocolate butter icing through his fingers before stuffing it into his mouth!

Saw our family doctor on Wednesday.  He is referring me to an ear specialist to see if there is a reason for my ear being plugged for over a year.  He also ordered blood tests to check my thyroid.  I have been experiencing extreme sweating any time I exert myself. 

I'm getting a little concerned about how my brain is acting in certain circumstances again.  I'm experiencing the same almost frenzied activity in the stores that I used to experience before I started the medications.  Jim may have to tie me down again!! Oh dear!!!!

I received an appointment letter today from SunnybrookHospital in Toronto, saying I have an appointment November 15^th for another EMG, and then a follow up appointment with Dr. Zinnman, the head of the ALS Clinic at Sunnybrook in February. So does this mean the blood tests or the spinal tap showed something pointing towards ALS? I have no idea.....and I guess I won’t know anything until February 2008. This is so unreal....having to be in limbo for four months! There is something terribly wrong with our health care system. You would think I could have had at least a phone call after they received the results of the tests.

In the meantime I’m enjoying almost pain-free nights......the nightly cramps have all but left me.....and I’m very thankful. I’m still getting the fasciculations and spasms in the daytime...but that’s just fine.

We had a delightful visit with Jim’s family in Toronto on Saturday. I realize after visiting family like that, that my personality is slowly disappearing. I really struggle just with regular conversations.......trying to take in what is being said, and replying appropriately.

We’re now almost settled in our new apartment. It’s taking me a long time to get us organized....but it’s coming. Gone are the days when I could have a move completed in two days.

We love living next door to Dave, Cindy and the kids. I’ve been able to help out by looking after little Seth from time to time. I find I’m good for about one hour before this one year old’s activities completely frazzle my brain. I think after one hour I’m not a good care giver...cause it doesn’t register what he is up to, and my reaction time is slowed. Good thing we have Jim to look after us both!

Our dear friend Jane McLeod passed away yesterday with colon cancer. We first met dear Jane back in 2001....when we moved back to Picton, and she became our neighbour. Jane and I both had the feeling from our first meeting, that we were destined to meet, and love and enjoy each others company. We spent hours and hours playing our accordions together, or just having heart to heart talks. Everyone who met Jane loved her, and she will be sadly missed by many, many people.

Jane was very excited for us....moving into our Suite in our son’s house.....which we have now been doing for the past five days. We’ve moved everything from the storage shed...and from our summer trailer.....and we now have the ongoing task of trying to decide where everything should go. My brain gets completely boggled by times.....and I crash...but that’s OK.

In the midst of all of this, I gave an interview for an alumni magazine which the University of Toronto publishes. They wanted to do an article on how well the alzheimer’s medications are working for me. I hope this will be of help to many others.

HAPPY THANKSGIVING CANADA

We had our Thanksgiving feast at son Dave's yesterday, with 28 family and friends...and one huge, delicious turkey in attendance!  Dave and Cindy's big, old farmhouse is such a perfect spot for these family functions.....it never seems crowded, no matter how many bodies you add.  Our almost finished apartment was admired by all....and it became my quiet spot, to give my brain a rest.  Fortunately Mother Nature was on our side, providing us with excellent weather for sitting and playing outside.

I really miss being able to join in the conversations going on around me....but I find now my brain can't concentrate on what one person is saying, if there are other conversations going on around me. 

This will be a busy week for sure....the final painting of the bedrooms....and get us moved into our apartment.  Life is indeed very exciting! 

We’re just back from our day at Sunnybrook in Toronto at the ALS Research Clinic, and again, no news to report. Dr. Zinman did order some more bloodwork including the test for Lyme Disease. He also had a spinal tap done, to see if there are any indicators in the spinal fluid of what is going on with my legs. He and his associate were both quite impressed at how well I’m doing on the aricept and ebixa.

We had a two hour lunch break while waiting for the spinal tap to be done.....and Jim was able to have an hour’s nap in the van. I even dozed off and on! It had taken us four hours to get to Toronto this morning....a trip we usually do in just over two hours. It was just pure volume....with stop and go traffic a good portion of the way. Coming home at 3pm wasn’t much better.....and took 3 and a half hours....so Jim is worn right out.

Tomorrow we're off to Dave's again....to help install the hardwood floor in our new apartment.  We're getting very excited as our lovely little apartment comes together...and moving day looms ever closer!

Jim and I are feeling incredibly sad today.  Our little Princess was having such bad health problems, including terrible incontinence, that we decided it was time to put her out of her misery. Princess was only seven years old, but had been having major health problems for two years now.  She was a lovely member of our family, and we're going to miss her so much. 

Well, here I am home safe and sound after a rather uneventful flight home yesterday, except for a minor half hour delay at take-off with a flat tire! I should mention though that WESTJET is a fantastic company to fly with.  After the long, long day we all experienced last week when flying to Vancouver, WestJet has reimbursed us with the complete cost of that flight.....so I can afford to fly another day!

I had a fantastic week visiting with my kids, and a wonderful weekend visiting with Barbie and her family.  I was just so happy to finally meet Barbie who I've been chatting with for over a year now.

My brain worked beautifully the whole trip!  I noticed a few times I was having troubles following along with conversations, but on the whole, things went well.

My leg spasms and cramps remain about the same, and I now have an appointment at the ALS clinic in Toronto for October 2nd.  Hopefully they will be able to find out what is going on with me......and fix it!!!

Well here I am safely ensconed in Gene and Maria's beautiful new home, after a rather wearing day getting here.  Jim and I left home at 6am for our lovely drive to Ottawa, getting there in time for Jim to escourt me to security at 9:30.  I then located my departure gate, and wandered to the Tim Horton's for my coffee and to purchase a bottle of water for the plane.  By 10:15 I was onboard the plane waiting for our 10:45 departure..only that failed to happen.  It seems there was an electrical problem with the plane.  After an hour wait onboard, we were deboarded again, while we waited for a spare part to be flown in from Toronto.  Another long line up...to get our food vochure ..... wandering around the terminal....out through security for a much needed cigarette...back in through security, and of course had my bottle of water confiscated...and finally back on the plane at 2:45, and flew out at 3:30 for the five long hours to Vancouver.  That was a plane load of very, very tired people by the time we arrived in Vancouver!  I was oh so glad to see Maria waiting for me.   I think today will be a quiet, relaxing day while I catch my breath!

A whole week with no night cramps....it was so lovely...and I think I actually got caught up on some much needed sleep.  Alas...all good things must come to an end...and I'm back to nightly cramping and dancing!  So I might as well go back to drinking my eight cups of coffee and be happy then eh?

Packing day has finally arrived.....I've done a couple of trial runs to make sure everything will fit in my little suitcase.  I am determined to travel lightly this trip, remembering how my parents used to do their trips with backpacks!  My small suitcase sits beautifully in the basket on my walker...so I should do just fine.

I must admit....this trip and travelling on my own, for some reason, has me scared to death.  There is absolutely no justification for how I'm feeling, as my brain is working at probably 90%, thanks to aricept and ebixa.  I imagine this is just another side effect of having an impaired brain....but my positive thinking will no doubt see me through just fine! 

We decided yesterday to go on a camping trip to the RideauRiverProvincialPark, near Ottawa, Ontario. The main purpose of this trip was to scout out the OttawaAirport, where I fly out of next Wednesday on my way to visit our sons in Vancouver, and Barbie in Spanaway, Washington.

The RideauRiverProvincialPark is a lovely campground....some sites right on the RideauRiver. Our friend Jane came to visit us there, and have supper with us. The night was long and noisy....right next to the highway. Jim and I are so spoiled living in our quiet summer campground....with absolutely no noise!

We had an early start at 7:30 to head up to the airport. We were glad we did this tour of discovery....cause we got confused on one of the signs and had to turn around and go back....so I think we’ll be good on Wednesday, to get me to the airport.

My legs are still doing well....no cramping at all since I started drinking water and pineapple juice. The fasciculations and spasms don’t hurt, so that’s OK. The muscle burning comes and goes, so that’s OK too. And my head has been staying fairly unconfused. Sometimes things don’t compute...like this morning I opened my lipstick with the wrong hand...so I thought my lipstick had broken off at the other end....just silly little ‘brain’ things....but that’s OK too!

I'm am just so delighted....in my ALS forum, one man told me to drink water all day long and my leg cramps would stop....and a lady told me her trick was drinking 3 glasses of pineapple juice a day....for no cramps.  So I'm drinking water and pineapple juice...and I've had no cramps for 3 days.  My fingers are crossed that this keeps working for me for sure.  What an absolute relief to sleep through the night!  I'm still having the fasciculations and spasms....but no more "dancing around the bed" leg cramps.

Had a lovely afternoon at son Dave's yesterday with Ralph and Sandy.....and our apartment is coming along so nicely.  Very exciting!

That's a picture of our new van and we are loving it!  Yes....we changed our minds again....decided if we didn't upgrade our vehicle now, we might not have the money down the road to do so.

Dr. Black has taken me off baclofen, the medication I was taking to try to stop the nightly leg cramps, as it apparently could make my brain problems worse.  I'm up to 2400mg of gabapentin, but unfortunately, so far, this isn't helping much.  I'm still waking up about 3:30 every morning with my feet and toes turned at odd angles with the cramping.  This means jumping out of bed and doing a little dance until I get the cramps stopped.  Then I go back to bed for another half hour or so, before I have to jump out of bed again.

On a good note though, I don't feel there has been any deterioration in my brain.  I do all my tasks slow, and step by step...so no confusion.  I spend a lot of my days sitting in the chatroom at http://alzheimers.ning.com/chatroom.php, and the rest of the time doing research.

My trip out to Vancouver is just two weeks away, and I will soon have to be packing and repacking and.....repacking!

Today we went to the Alzheimers Canada office, where we were met by Mary Schulz, Senior Manager, Information, Support Services and Education. She introduced us to the rest of the staff at Alzheimers Canada. As well, we met Dave Fost and his wife, from Edmonton. Dave is the author of all the booklets and information on my Alzheimers Disease page here on my website. We had a lovely visit over lunch at the Pickle Barrel restaurant.

At 2pm we had my six month appointment with my neurologist, Dr. Black, at SunnybrookHospital. We finally emerged from that appointment at nearly six pm. There’s an old expression.....if the doctor makes you wait, it’s because he is doing the best job for everyone.....so we didn’t mind waiting in the least.

Dr. Black is now giving me a referral to the ALS Research Clinic at SunnybrookHospital, so we’ll be back up to Sunnybrook again in another month or two, to see if we can find out what is going on with my legs.

Had a marvelous two days celebrating my 63^rd birthday! On Sunday we had our annual Birthday Bash at son Dave’s. August 20^th is also our youngest son Ralph’s birthday....he was my birthday present on my 30^th birthday! What a present eh?

Yesterday Jim and I went to Kingston for Chinese Buffet and to look at 2004 Toyota Sienna Vans. We test drove one and were impressed. But I think we’re reconsidering buying one at this point. $20 thousand seems awfully steep, considering there really isn’t a thing wrong with our 98 Toyota Camry.....so guess we’ll hang onto our money for now.

I’m just amazed how well I’m doing with all the various activities. At the Birthday Bash there were 14 children and 9 adults....and I was able to function just fine! My meds are working so well!

I’ve increased my gabapentin to 1800mg/day now and still at 30mg of baclofen. This seems to be controlling the cramps in my legs....and I don’t have to jump out of bed 10 times a night...and do my little dance! I’m having increasing spasms in my legs and now my arms.....which is of concern.

We go to see Dr. Black tomorrow....so will see what she has to say at this point.

I’m getting very excited about my upcoming trip to Vancouver on September 12^th. I’ll also be spending a weekend with my dear friend Barbie down near Seattle, Washington....we chat daily about what we’re going to do with our short time together! So far the plan is eat chocolates and drink Bailey’s Irish Cream!

I have just returned from a most delightful trip to Ottawa...for a surprise 60^th birthday party for my brother Dave.

I took the train on Tuesday from Belleville, arriving 3 hours later in Ottawa, where my sister June picked me up at the train station. The ViaRail train crew are marvelous with anyone with a walker, and I was helped on and off the train at both ends.

I discovered the best way to use the ‘little girl’s room’ on the train is to wait until the train stops briefly at a station. I was able to make my way there without falling on someone’s knee, perform my bathroom duties, and get back safely to my seat.

Of course I was treated ROYALLY by my family in Ottawa. The surprise birthday party was very exciting, and we all enjoyed ourselves immensely.

We even did a bit of sightseeing.....and I saw the Prime Ministers home, and a few other highlights that tourists scramble to see when visiting the capital of Canada.

The picture shown above is actually an aerial photo that my brother Dave took of Ottawa, while he and his wife Margaret were in a hot air balloon last month for her birthday.

In my quest for information on ALS, I happened upon Mike Bougher, a man in his forties, who is living with ALS.

I was so impressed with Mike’s website, I wanted to share it with you. Here is a quadraplegic who has learned how to make life a fantastic experience.

Please visit his website at http://quadbliss.com/ I hope you enjoy Mike's website as much as I did.

We had a good appointment with our family doctor yesterday. He has given me a prescription for baclofen to try to stop the leg pains at night. I’m also to increase the gabapentin in another week or so, until we get the right mixture of drugs. The leg pains are muscle groups twitching or fasciculating, followed by spasms, then followed by major cramps, similar to Charlie horses. These cramps make me have to jump quickly out of bed to get them to stop. My feet will be turned sideways or my toes will be standing straight in the air. This of course leaves my leg muscles very sore and weak for most of the day.  On days that I haven’t done much of anything, these pains start about 4am. On days where I’ve been active, this can start as early as midnight.....so it’s been a long time since I’ve had a full night’s sleep.

Dr. Seybold is still thinking ALS, or Lou Gehrig’s Disease, and I will be going for further testing. My next appointment with Dr. Black is August 22^nd. She is the head of neurology at Sunnybrook in Toronto, where they also have a large ALS research clinic, so I’m in good hands for sure.

We’re at the end of getting our house ready for it’s closing date of August 15^th. One more load of stuff to go to the storage locker and then the final cleaning. It’s really nice to be at the end of this process, and onto other interesting projects.

Seven more weeks and we’ll be moving into our lovely apartment in Dave and Cindy’s home. I can almost hear son Dave gasp when he reads seven weeks....cause he and Jordan have a lot to do before then! He he

This has been a very frustrating afternoon for sure.  A week ago we found out our house deal was final, closing on the 15th of August, which is fantastic.  So I proceeded to make my list of all the companies I had to contact to change our mailing address.  And then I spent 3 days making the changes.  This uses up a whole bunch of brain power as each company needs to verify who I am, with their various questions, my Mother's maiden name, my dog's name, my cat's name, my year of birth, and on and on and on.  I finally had completed the change to a total of 27 companies, when I got a phone call from Canada Post that there was no such address.  I had gotten the numbers wrong in my address!

So now I have spent the last 3 days again contacting all these companies and explaining I needed to change my change of address.  I am really struggling with it today, and Jim has been helping me with some of them.  

At this point, I'm not sure who I am.....and I sure don't know where I live!  

Jim and I spent a fun morning yesterday at the Alzheimer's Society fund raising  bar-b-que.  This was held in the parking lot of Giant Tiger, with all the drinks and hot dogs being provided by Giant Tiger.  Jim cooks a delicious hot dog, and is certainly well practiced!

The afternoon was spent with sons Dave and Ralph and families at Dave's.  It's such fun when we all get together.

I've decided to take advantage of WestJet's 40% off seat sale...and I'm flying to Vancouver in September to visit our sons Lane and Gene.  We're also planning, while I'm there, to drive down to Seattle, Washington, where I'm going to spend the weekend with my dear friend Barbie, who I've chatted with for the last year at http://www.alzinfo.org/community/alzheimers-chatrooms.asp

Barbie, who is 56, is on the same journey as I am.  We often refer to ourselves as twins because our symptoms are so much the same at this point. 

So the countdown is on now to September 12th, when I again fly off into the wild blue yonder!

I am so totally frustrated.  We just came back from Kingston where I underwent electrodiagnostic tests including  electomyography (EMG) and nerve conduction velocity (NCV) to try and determine what is going on with my legs.  They can find absolutely nothing at this point.  The neurologist could actually see the fasciculations (twitching) going on in my legs, arms and even my tongue.  But the testing doesn't indicate a problem.  At this point all he can say is the problem seems to be coming from my brain.  That does not help the leg pains at night!!

On a happier note the sale of our winter home is going through without a hitch....and we now have two weeks to move all our worldly possessions to a storage locker, until our son Dave has our apartment on the end of his house renovated.  We sold our mobile home fully furnished, so don't have much to move at all.  In the meantime we're living quite happily at our summer home until it get's too cold, or the campground owners, Pat and Dayton Johnson, kick us out!  Oh....if you're ever in our neck of the woods, and want a lovely cottage overlooking SouthBay on LakeOntario.....check out their website at http://www.pec.on.ca/johnsons/.  You will be given a royal welcome here for sure!

There was a discussion on the FTD message board  about how sounds seem to scare or startle persons with FTD. This has been a problem for me for the past year or so. For some reason my brain doesn’t recognize sounds, and sometimes I’m so startled, my heart pounds. Jim’s quite used to me asking worriedly "What’s that sound?"

He has changed the ring tone on the phone to play music as the ringing of the phone was startling me and I couldn’t recognize what it was. When my cell phone rings, most times the caller has to leave a message, because it takes me too long to figure out what the sound is and then answer my phone. I haven’t been able to figure out yet how to change it to music!

When Jim comes back from his bike ride, he usually rings the bell on his bike to tell me he’s back. For some reason, my brain cannot identify this, but Princess recognizes it immediately and starts barking excitedly. It takes me a couple of minutes to clue in.

On Thursday we had continuous heavy rain for about 4 hours. Living in a trailer for the summer means this is really loud. By 10am I told Jim we really had to get me out of the noise....and go and buy some heavy duty ear protectors, cause my brain felt like it was going to explode. We bought a $31 pair of ear muffs, with a decibel rating of 29. These are the kind designed to be worn when using noisy equipment. Well, they work marvelously for keeping my brain unclogged! I can even wear them when Jim wants to watch TV....and when I’ve had enough input. They seem to be working very well indeed.

It’s really amazing how many little tricks there are to making life easier for us all. Now if I could just program the microwave and bread maker so they didn’t beep at me, I’d be set!

Jim and I just had a lovely trip up to Georgian Bay, just over 200 miles away. We visited with some of Jim’s relatives, and stayed in a motel overnight. We saw so much beautiful scenery, and of course my camera remained nicely packed away in its case!

I’ve often said to Jim that I can’t seem to carry on a real conversation with people these days, and feel I’m just chattering away. That’s why I usually avoid having to speak to anyone. In my FTD support group, a speech therapist, who’s husband also has FTD was explaining this to us on the message board.

It is called ‘cocktail speech’. She says "The things that you say when using cocktail speech are more rote/automatic. They are things you can repeat off the top of your head, rather than something that requires thought. My husband is quite engaging while doing this and is not able to observe cues from the other person that they are done talking and want to move on. People with Wenick's aphasia have this symptom as well as many folks with frontal variant FTD."

This really helped me understand what is going on with me. I think at this point I’m able to present as "almost normal" to most people, because I am using the same phrases and conversations over and over again. I find if someone asks me a question, I can start off quite normally, answering the question, but then my brain loses track of where it is going, and I end up feeling like I’m rambling......and it tires my brain unbelievably.

We spent a lovely afternoon with the photographer from Alzheimers Ontario, doing the photo shoot for the new booklet that is soon to be published.  She was delighted with the pictures of Jim and I on our tandem bike, and Princess with her ears flapping in the wind, in her bike trailer.  I found it a really gruelling 3 hours, answering all her questions though.  I was very glad when it was over, and I could enjoy the quiet ride home!

I camped out at son Dave's in our Boler on Friday night...to spend the day Saturday with 3 of the sons....and get my grandkid fix.  It was lovely, and I was able to keep my head screwed on right most of the time.  Dave showed us the renovations he is making to our apartment, where we should be moving to in another month.  It's very exciting!

My neuro appointment scheduled for this week has now been changed to August 22nd, which is probably good, as we won't have the results from the EMG testing until the 25th.  Sure will be nice to find out what is going on with my legs, with all the fasciculations and spasms.  Not sure if the biking is helping or not, but we're certainly enjoying our rides.  Still working with various seat adjustments trying to get my bottom end more comfortable on the 10 mile rides! lol

Wow...very exciting news. We just got an offer on our winter mobile home. $45,000.00. We are very pleased. Looks like the closing date is August 15^th. We are selling it as a furnished unit, so there will only be boxes of our personal belongings to move to our son Dave’s apartment, where we will live until such time as the Senior’s apartment in Ottawa becomes available. We might just enjoy living with Dave and family so much, we will never want to move to Ottawa....who knows!

Now that we’re not having to spend all our free time over at the winter home doing cosmetic repairs, we will have more time for enjoying our summer here at the summer home....and do some more camping with our little Boler!

On Sunday Jim and I are meeting with the photographer from Alzheimers Ontario to do a three hour photo shoot. Alzheimers Ontario is doing up a new publication as well as putting some new pictures on their website. They want to take pictures of Jim and I on our tandem bike, with Princess in her bike trailer. This should be fun!

For the past year or so I find I get really incensed over things.  I'm like a dog with a bone, working on it until I get some action.  It's paid off with my letters to Canada Post and our local Mayor....we now have new mailboxes at our winter home replacing the old rusty things that have been there since mail delivery started!

There are several others issues I've been working on.....the injustice of Heli Munroe with alzheimers being kidnapped from her home in Nova Scotia, and the government not helping to bring her back from England, as well as in Ontario, the drug Ebixa (namenda) not being one of the drugs covered by the Trillium drug plan. 

My latest quest is to try and find out why disabled persons are given substandard camping sites at the Ontario Provincial Parks. 
These parks are happy to boast that disabled persons receive half off, but they don't seem to disclose that it's half off a site that no one in their right mind would rent!

We decided to do a one night stay at SandbanksProvincialPark on Monday.  I had checked the website, and there were a number of shady sites available in the electrical section, which is what we wanted.  We packed up and drove the twenty miles there.  Our disabled sticker was displayed on our front dash, and we requested a shady site in electrical.  Hmmm...none available...only sunny sites available.  OK....a shady site in non-electrical please.  Well, we ended up in a little spot beside the highway...and beside the group camping spot.  We got our little trailer all set up....and went for a lovely ten mile bikeride.  We biked to the electrical sites....and yes, there were any number of beautiful shady sites available still....hmmmm.  By about 8pm it was clear to us we were not going to have a very enjoyable evening...with the highway noise and the noise from 90 high school kids in the group camping, so we packed up and came home for the night.

When I got home I again checked online....and there were still a number of shady spots in electrical available.  The next morning I phoned the Parks office, asking if there was a policy that if you didn't reserve ahead of time and pay the $12 reservation fee, you were given inferior sites.  He said no, definitely not, and he can't understand what happened there.  I never even thought to mention the disability sticker, cause I never dreamt a disabled person would be treated in this manner. 

Something about this disease....my brain just can't let it go....so I'll be doing letters to the Park superintendent and whoever else I can think of now!

We have been so busy getting our winter home ready to put on the market.  We've finally listed it....you can check it out at  www.mls.ca.  Type in the property number 2073951.  We actually have people coming to view it this afternoon.....wouldn't that be fantastic if this was that special person for our lovely home!

We had an enjoyable  visit with our son Sandy and his family in Bowmanville on Saturday, then on to Toronto to see Jim's folks and sister Carly.  Even with the terrific medications, aricept and ebixa, it still takes me a day to get over a visit like that.   My head is again in a fog, and it takes longer for my brain to process things.  Oh well, a day of being slow fixes things up again! 

Jim had an 8am appointment at the Toyota dealer in Cobourg on Wednesday so we decided to spend Tuesday night at Presqu’ile Provincial Park, where I would remain in the morning while he drove the 30 miles to Cobourg.

We had a lovely site overlooking LakeOntario....and had an enjoyable 6 mile bike road through the park. I spent most of the time swatting mosquitoes on Jim’s back while we rode. We spent the remainder of the day and evening in our Boler.....mosquito free! The trips to the outhouse were done very quickly.....swatting as we went!

At 5 this morning we were both wide awake...and Jim drove us over to the showers. I remembered to touch the metal sensor on the wall to get my water flowing! That was the shortest shower in history I’m sure.....the walls were lined with mosquitoes just waiting to attack all my body parts!

I spent the whole morning in my Boler playing on the computer...while Jim had the work done on the car. I had planned on doing a whole bunch of walking.....instead I sat inside watching mosquitoes trying to find me.

On our trip back home, as we came off the swing bridge over the TrentCanal, the lock opened holding the trailer onto the ball...and our little Boler came off and the tongue ran along the pavement until Jim could get us pulled onto the shoulder of the road. Fortunately we were going very slowly and no damage was done. I always wondered if those chains would actually work...and they did!

Since it takes awhile for my brain to recognize sounds, I hadn’t realized what had happened until Jim told me. Two young fellows working at the TrentCanal crossing came to our rescue and lifted the trailer back onto the ball...and Jim secured the lock with a bungie cord!

So...for our next trip....a better locking mechanism....and stronger mosquito repellant for sure!

Jim and I traveled up to Ottawa for the weekend....for a family reunion with his brothers and sister, at his brother Doug’s place.  Doug lives about half an hour out of Ottawa and has made a huge park in his back yard, complete with a small pond.  We just park our Boler trailer beside his pond....and enjoy the sights and sounds, and the visiting with the family.  Then I have my quiet spot to retreat to when my brain has had enough input from the visiting.

The next day we had a most enjoyable lunch at my sister June’s with our brother Dave and his wife also joining us.

After that Jim and I headed off to Charleston Lake Provincial Campground, where we spent the rest of the evening and this morning. It was a beautiful campground...and we really wished we had our kayaks and tandem bike with us.  We're planning on going back there next week....to really enjoy the lake!

One thing I’m noticing....I get extremely confused when in a new environment.  Even going into a strange bathroom has become a challenge!  Some bathrooms now have motion sensors to turn taps on or flush toilets. It's a real challenge to get my brain to try and figure these things out.  This morning I went to have a shower at the campground. I got my shampoo and soap placed within easy reach, hung my clean clothes so I could just dry and get into them, and undressed, folding up my dirty clothing and placing it in the basket on my walker. Then I went to have a shower.  I turned the handle up and down and around but I couldn't get the shower to work!  I was so annoyed that there wasn't an Out of Order sign there warning everyone.  I proceeded to get dressed in my clean clothes, without having a shower.  Then I went into the ladies bathroom and washed my hair under the bathroom sink tap! When I explained to Jim that my shower didn’t work, he said there is a flat metal piece on the wall that you have you run your finger over. Then I was doubly frustrated....because that’s how I had to turn the taps on in the ladies bathroom....rub my finger over the metal piece. I hope I remember next time to turn the water on first....before I get undressed!

This morning Shelagh Rogers of CBC Radio interviewed Sandy Munroe, the husband of Heli Munroe, the woman with Alzheimers who was taken from the care of her husband in Nova Scotia 18 months ago to someplace in England.  You can click on the following link to listen to the broadcast.

http://www.cbc.ca/soundslikecanada/

There has been such a response from this airing, both via email and phone calls, that Shelagh Rogers is going to have another segment tomorrow morning also.

Hopefully, with all your help, we can make a loud enough protest that the government will take action and return this poor woman home to her family.

Please take a minute and listen to the broadcast, and then email Shelagh Rogers, even if it's just a short message "Bring Heli Home".

This is the email address to voice your concerns.

http://www.cbc.ca/soundslikecanada/contactus.html

PLEASE HELP HELI!!!

Yesterday was the Alzheimer’s Tag Day in Picton. Volunteers stand at various locations in town collecting money for Alzheimers. Jim and I again did our two hour stint in front of NoFrills grocery store. It was a beautiful, hot summer day...and a very busy spot to be. Last year we collected $83, and I’m thinking we may have surpassed that this year.

Two hours of greeting people seems to be more than my brain can handle these days. The fog definitely rolls into my brain. At one time I was pointing out to Jim that my walker brakes didn’t seem to be working, as one wheel kept rolling on me. He indicated to me the brake was in the up position, and not down in the locked position. In the fog, I was trying to lock it in the wrong position. Later in the day, after sleeping for two hours, I still had the feeling that my brain "was fried", and I just wanted to cry, it’s so frustrating.

I just may have to ask a son or grandson next year if they want to fill in for Mom/Grandma at the Tag Day!!!

Back in January I mentioned in my diary about the plight of Heli Munro, a 64 year old woman with alzheimers, in Nova Scotia, who was taken from her home and whisked off to England by her brother. Heli’s husband, Sandy,  had been caring for his wife, and had her signed Power of Attorney. According to the police, Heli’s husband should have had applied for Guardianship of his wife, and then the police could have found Heli in England and returned her to her husband. Now, a year and a half later, this woman, who is now in a mental facility of some kind, has still not been returned home to her husband.

With the ongoing efforts and determination of Carole Bowlby Sifton, Heli’s friend, former co-worker, and alternate Power of Attorney, there is increased public awareness of the flaw in our system here in Canada...and elsewhere.

You can read all about this terrible tragedy at the following website:

http://www.bringhelihome.blogspot.com/

And if you would please email the following government officials and newspapers, maybe we can help get Heli back home where she belongs, with her husband, family and friends, and save others from the suffering that Heli and her family have endured for so long.

mackay.p@parl.gc.ca

McDonough.A@parl.gc.ca

letters@herald.ca
 
dleger@herald.ca

murrayscottmla@eastlink.ca

ddexter@ns.sympatico.ca

rodneym@ns.sympatico.ca

Harper.S@parl.gc.ca

Toews.V@parl.gc.ca

markparentmla@ns.aliantzinc.ca

glavinla@gov.ns.ca

Layton.J@parl.gc.ca

letters@globeandmail.com

Ignatieff.M@parl.gc.ca


Stephen Scollard, Administrator, Billingham Grange, Yorkshire, UK, sscollard@whc.co.uk

Please help Heli Munro....and force the government to change the existing laws....which make our Powers of Attorney for continuing care worthless pieces of paper!

We've been so busy renovating our house, I haven't had a chance to get back to my journal.  We did manage a trip up to Toronto on Saturday to visit Jim's folks.  Jim and I are still amazed at how well I'm doing with visiting, since being on aricept and ebixa.  My brain still gets really confused if there is more than one conversation going on at once, but that's OK.....I can just sit and smile!

We had thought our cycling 8 to 10 miles daily was keeping the nightly leg pains away, but they started up again at 4 this morning, so guess the cycling doesn't have any bearing on the muscle spasms.  We're really enjoying our daily rides though, and miss them the days other activities interfere!

Just another couple of projects at the house.... wallpapering the bathroom, laying new kitchen floor, and painting some trim outside .... then we can move to the summer trailer.  The weather is starting to warm up nicely, and we're itching to make our move.  A whole new area for me to start cycling in, and get some kayaking in as well!

In a forum I subscribe to Carole Mulliken often writes interesting information describing what’s it’s like to have dementia. I thought I’d share her latest offering with you.

"About being overwhelmed, if you think of a brain as being like a flashlight with a multi-celled battery, it helps. A flashlight can shine very brightly when all of its cells are charged and working. As cells lose their charges, the light gets gradually dimmer and dimmer, and the person using the flashlight sees (or understands) less and less of what is going on around him. It is the same way for me. I still have a potentially very bright mind, but as the number of neurons I can bring to a task diminishes, I can comprehend less and less of what is going on around me. You are correct in saying that we have good days and bad days. On good days, the neurons that remain communicate well with one another. On bad days, for some reason, they don't work so well together. Some researchers believe that the problem is debris clogging up the synapses.

Or, if you put our function in computer terms, my CPU cannot multi-task or co-process worth a darn any more. Too many tasks just bring me to a standstill and nothing happens. All true dementias are a result of the death of neurons. The limitations that people with dementia have are outside their control. I have not become "difficult" or "stubborn" by choice. Rather, I've lost the ability to be any other way.

I have come to realize that I often cut people off in the middle of their sentences when I have something to contribute. I do it because I know that if I wait until they are done, my own idea will have evaporated, so I have to throw it out while I still have it myself. It must seem very inconsiderate to others."

OK....off to charge my batteries some more!!!

We enjoyed a lovely Mother’s Day at son Dave’s. Sandy and his family were able to join us. Ralph and Lisa were tied up in Ottawa taking over Lisa’s new business venture, a Printwell store.

My family spoiled me as usual....I received new pants, shirt and jacket from Sandy and Sarah, and a new bike trailer from the rest of the family. Princess will be riding in style for sure...complete with a safety flag. I’ve actually biked 57 miles since May 1^st...not bad for an old girl I would think! We usually end up cycling down to SandbanksProvincialPark, and through the campgrounds there, ending up at a nice spot for a picnic lunch...or just a coffee. Our insulated water bottles that came with our new bike work really well at keeping my coffee at just the right temperature!

We’re thinking all the cycling is helping my legs.....the backs of my legs aren’t hard knots of muscles....and I seem to be having less leg spasms at night...which is a major plus. I’m still having balance problems when walking....this seems to be the muscles down the sides of the legs not working to hold me upright. That’s OK....I have my Hummer...and I’m not slowing down yet!

My camera is acting up and I haven't been able to get a decent picture of our new bike and new trailer.....so I'm adding a picture the neighbour took of the borrowed bike from my brother and the borrowed trailer from our son!

What a busy week.....I’ve hardly had any time to spend chatting with my friends at http://www.alzheimers-dementia.net/     I’m afraid they’re going to think I’ve forgotten how to get there!

We’ve been so busy getting our winter mobile home ready to go on the market. All the regular cleaning of walls, floors, etc., then yesterday I got the big idea I should paint the kitchen cabinets. Of course Jim realized this wasn’t something I could tackle by myself, so he had to put all his outside fixing-up chores on hold, to help me. Our kitchen is being transformed into "baby blue", and I’m now thinking a new counter top and maybe new flooring next. Don’t tell Jim...I have to break it to him slowly!!!

We also spent Monday at the summer trailer, as Jim takes care of the lawn for four of our neighbours there. I busied myself with cutting up and removing the rug from the living room. We had planned on staying overnight there in our little Boler, but I got chilled enough at our campfire, we decided to head back home to our warm beds.

In between all this work, we’ve managed to do a tandem ride almost daily.... taking picnic lunches for our outings. It’s been great...and I’m sure getting lots of exercise. The gabapentin seems to be working well with the leg fasciculations and spasms. I did experience two painful nights and finally resorted to my Tylenol 3. It wasn’t leg pains....but pain and burning on whatever part of my body I was lying on. This is definitely something new and I hope doesn’t reoccur too often!

I must say I’m getting increasingly apprehensive of moving to the summer trailer...and leaving my "safe haven", here at the winter home. I’m not sure why this is....is it because there will be more people there I have to interact with? I know I have increasing difficulty conversing with people, trying to focus on what they are saying. I seem to have lost the ability to interact as I used to, which is very worrisome, as I used to be such a social person. Oh well....I’m doing so well otherwise, I won’t worry about this....people will get used to a Quiet Mary!

I’ve been having such an excellent week....I sometimes wonder if there is anything wrong with me! Until I get the occasional brain glitch...that is! He he

We had a great trip up to Ottawa on Saturday....and a lovely visit with my brother Dave and his wife Margaret. Our son Ralph and the two kidlings joined us at Dave’s for lunch...and we all had a great visit.

Dave loaned us their 6 speed tandem bike.....so we could use it for the summer....while they're busy moving to their new house. Ralph also brought us son Dave’s bike trailer that he has been using for the past couple of years. Thank goodness for our van trailer...to carry all these toys in!

So Sunday we proceeded to make trips around the circle of our mobile home park....making changes to the seats and handlebars as needed....then we added the bike trailer for Princess, to the mix...and proceeded with more circles. Princess yipped the whole way.....we're not sure if this is excitement or what it is.

Monday we did a 4 mile trip down to SandbanksProvincialPark and back, without the trailer, getting used to the tandem. Tuesday we did a longer trip to the end of Sandbanks and back, so a total of 6 miles...and decided we really were going to be struggling with just 6 gears....this can be very painful on the hills.

Major decision time.....yes....we did it.....spent $1000 and bought a used tandem at the Bloomfield Bicycle Co. with 24 speeds. Of course they threw in new handlebars for me, water bottles, and pant clips. We also bought a mirror so I can see traffic from behind...and keep an eye on Princess.

So bright and early this morning we did the four miles to Sandbanks with Princess in the trailer...and had a walk on the beach. It was absolutely marvelous....and I’m anxious to go again this afternoon. Princess did some yipping along the way....but quieted right down when I told her we were going for a walk.

I have so much leg pain already...from who knows what...so I really can’t tell any difference from all the biking! At least now when the muscles are burning...there is a reason for it!  I have an appointment with the neurologist in Kingston on May 29th.  He specializes in neuromuscular diseases, so maybe we'll find out more then. 

A dear friend from our chat room, James Smith,  who is 45 years old with Early Onset Alzheimers was interviewed by RealHealth TV and has given us the links to view both he and his wife being interviewed in their home.

James
http://www.realhealth.tv/?goto=36&vid=148&vo=2

Juanita
http://www.realhealth.tv/?goto=36&vid=149&vo=3

Still talking about our wonderful week in Vancouver....and Gene and Maria’s beautiful new home, and all the good food....and the beautiful sites! It was just fantastic.

Finally got my appointment with the neurologist who specializes in neuromuscular diseases...in Kingston on May 29^th. The gabapentin is working very well with the leg pains at night, and I’m actually getting some decent sleep. It will be very interesting to find out what is going wrong with my legs for sure.

I had my first experience on a tandem bike yesterday....and it was great. Jim rented a tandem bike from the Bloomfield Bicycle Shop for us to try. Yesterday we just did about two miles....which was about all my muscles would stand. We’ll give it another go today. My balance problems walking don’t seem to be a problem on the tandem bike, which is great. Jim has made some adjustments to the handlebars which should make it less of a strain on my arms. My brother Dave in Ottawa has offered us the use of their tandem bike for the summer, so we’re driving up there on Saturday with our trailer to pick it up. Son Ralph has also offered us the use of their ‘kid trailer’ that attaches to the bike, so Princess, our Bichon, can travel with us. I think this should be a really fun summer for us all!

Day Six of the Trip

After an almost sleepless night, checking the clock to make sure I didn’t oversleep, I was up and showering at 4am, to make sure we were ready for when Gene and Maria picked us up at 6:15 to get to the airport. We arrived right on time at the airport at 7am. Since I had printed out our boarding passes, we were able to bypass the long line of people waiting to get checked in, and just proceeded to the baggage check in. And since I had my walker, we were pre-boarded.....and missed that long lineup also. There are definitely some benefits to be disabled.

We had a good flight back to Toronto, arriving back at 3:30. The shuttle back to the hotel to get our car arrived at 4:20. That’s an excellent deal....free parking for the car for the week, and free shuttle. And then the three hour drive back to our place. Makes for a very long day for sure. We did arrive back to glorious 70F weather, which was a bonus.

The last three hours my legs hurt terribly...and I was really glad to be home. I slept off and on coming home...just trying to get my head back to normal. I could never have done this trip now without my aricept and ebixa, but I’m really glad we did it. And special thanks to Gene and Maria for making it so wonderful!

Day Five of the Trip

After our delicious continental breakfast we strolled over to Gene and Maria’s bright and early at 8am and printed out our boarding passes. I love this new computerized way of travelling.

We spent the morning at Ikea’s.....haven’t been to an Ikea for years and years. We just purchased 2 cutting boards and a teddy bear, while Gene and Maria found a great entertainment center for their livingroom, and many other articles for the house. Had a great lunch again at a Mongoli Grill....so good.

Then we did a tour of the VanDussen botanical garden....55 acres of garden in downtown Vancouver. Even walked through the maze of junipers.....without getting completely lost. We’re a month too early to be able to enjoy all the beautiful flowers.

After a two hour rest at the hotel, it was back to Maria’s Mom’s for another Italian dinner.....pasta with garlic and anchovies, followed by salmon steaks, shrimp in sauce, spinach, and Caesar salad. And of course several bottles of home made wine. It was so good.

Day Four of The Trip

Another lovely night at the Holiday Inn Express....and lovely breakfast again.

Walked the five blocks to Gene’s.....for another wonderful day with our kids.

We started our morning off enjoying White Cliff Park....walking along the beach looking for some neat driftwood. Of course I had to use the washroom....and they were still winterized. We availed ourselves of Mother Nature’s Washroom...completely equipped with leaves. Then it was on to the ferry for our short ride to BowenIsland.....where we had another great meal at Captain Morgan’s Restaurant. I had a fish burger and fries...and the fish burger was actual fillets of sole.  It was lovely sitting out on the deck overlooking the harbour full of sailboats, and the mountains sitting majestically behind. We did try to hook up with a cousin of Jim’s, but guess the poor fellow was off working...while we were having such a lovely day.

After a two hour rest at the hotel, we walked back to Gene’s for an evening of eating and visiting. I’m discovering when we first go someplace I’m the bubbly, talkative person I’ve always been, but with the sound and commotions around me, I become very quiet. I don’t start up a conversation on my own...and just answer when spoken to.

Day Three of The Trip

We had a wonder sleep at the Holiday Inn Express....it is a lovely hotel...with a luxurious feeling. Complete with complimentary breakfast....fantastic service.

We spent the day with our kids again.... touring Vancouver. We spent several hours at StanleyPark, viewing the terrible destruction from the wind storm in the fall. It is still a beautiful park though, but a shame so many old trees were lost. We also did the market place at GrenvilleIsland, Spanish Banks beaches, the Bloedel Conservatory in Queen Elizabeth Park, and experienced lunch at the Mongolie Grill. You fill your bowl full of your choice of vegetables, meats, poultry, fish, seafood and various sauces ......hand it to the cook...and he grills it. That was great fun.

More visiting with the kids and then it was time to go to Maria’s folks for an Italian dinner. These dinners are out of this world. The meal started out with delicious cabbage rolls with a side dish of pasta...and of course wine. I was pleasantly full....and shocked when I was informed that was the appetizer. Then came chicken and veal cutlets with mushroom gravy, potato wedges, brussel sprouts, carrots, more pasta, followed by tossed salad...then deserts of fruit and cake....all accompanied by various wines. I really think I would love living near Maria’s Moms, but I would be oh....so fluffy!

Day Two of THE TRIP
Well, that was indeed one long day.  Woke at my normal 6am....still with no internet to get my morning chat fix.   We left the hotel with the free shuttle service, leaving our car at the hotel for the week for free, and got checked in at the airport.  Going through the airport security scanners seems to be a big deal with the walker...and got me totally confused.  Of course Jim and I got separated, which made my confusion even greater.  When the security person assisted me over to retrieve my walker and personal items, I just took my carry on bag and walked away....leaving all Jim's personal items unattended as they were still scanning his body!  Jim caught up with me...asking if I had his stuff...NO...so back to the conveyor belt...looking for the tray with his wallet, etc.  We've learned....do not separate us in a busy environment!

The airplane flight was lovely...Jim's first...he spent the whole time looking out the window.  Fortunately the weatherman co-operated by giving us no clouds most of the trip! 

Arrived safely in Vancouver...where Gene and Lane met us at the airport!  So good to see our boys.  After checking into our lovely hotel, where I do have internet service...as well as continental breakfast...we spent the rest of the day at Gene's...viewing their new home they have just finished building...and fell into bed at 9pm...which was midnight our time!

Oh yes...the gabapentin and Tylenol3 worked well on the plane...no leg pains...and I am so thankful!

Day One of THE TRIP

After printing out our Boarding Passes online...24 hours before flight time, we left our house at ll:45am on Monday morning, heading for Toronto. Our dear neighbour Laura is spending the week at our house, looking after Princess and Angel, our dog and cat.

We arrived at our Best Western Hotel in Toronto....and got nicely settled...and spent the next 3 hours trying to get the free internet connection. The staff at the hotel know nothing, and the support staff at Telus are baffled why we don’t get the pop up screen to sign in. OK....no internet....so I will spend the rest of the evening in the hot tub.......yep...you guessed it....OUT OF SERVICE!

We did a quick trip over to see Jim’s folks, and I was able to get into my chat room for a few minutes, and explain why I wouldn’t be there for the evening. It was so good to see BB and Barbie, and I do miss my chats.

Back to the hotel....and enjoyed a sub for supper....and spent another hour on the phone with Telus support, followed by an hour soaking in the bathtub....and then bed.

Guess the gabapentin hasn’t kicked in fully yet, so the legs had a cramping good time overnight. Wanted to save the big stuff Tylenol3 with codein for the plane this morning!

We leave our car here for the week at the hotel....free....and have a free shuttle to the airport....so I guess I’ll quit complaining about no internet connection! Sigh.

Two more sleeps till we leave for Toronto, and then fly to Vancouver...and I’m so excited. Of course I have packed and re-packed several times. With our new set of luggage, it’s really hard to decide which of the five pieces I want to take.

Went to see the family doctor yesterday, and finally got some medication for the leg and arm muscle pain. I have a prescription for Tylenol 3 and Gabapentin.

I took one of each last night....and slept through the night...painfree.....first time in eight months. I am very happy, to say the least. So I will be using the Tylenol 3 as a last resort....if the gabapentin isn’t handling things.

I am also being referred to a neurologist in Peterborough who specializes in neuromuscular problems to find out what is going on. The waiting time to see this specialist is usually about six weeks, so that’s fine.

I find myself feeling very lethargic today, and this could be a side effect from the gabapentin, but we’ll see how it goes as my body gets used to it. I have started off with one 300mg dose, adding a second one today, and starting tomorrow I will take 300mg morning, noon and night. I was horrified to read....one of the side effects of gabapentin could be WEIGHT GAIN. Ahhhhh.....the story of my life!

HAPPY EASTER MONDAY

We had a perfectly lovely day at son Dave’s yesterday for our family get-together. Sandy and Ralph and families joined us....so 17 in all. It was so good to see everyone...and the little ones were all so good. Cindy and girls as usual supplied us with more food than is good for anyone to consume in a day....but that’s the fun of family get-togethers.

I did very well....thanks to my aricept and ebixa. I found at times I couldn’t concentrate on what people were saying to me, and had to ask them to repeat it....or just pretended I understood what they were saying. I have gotten very good at pretending this past year! (Oops...my secret is out!)

I really do miss being able to join in the conversations going on around me, as I used to do. I know I’m missing so much, as I’m now only able to concentrate on one voice or conversation at a time.

I also noticed after a couple of hours, I seemed to again go back to my ‘tunnel vision’...where my brain could only process what I was looking at, at the moment. So I was completely unaware of any activities around me, except what I was focusing on. I remember making my way to the bathroom, and thinking afterwards.....I have no idea who was in any of the rooms I passed through, or what they were doing. My brain was completely focused on getting to the bathroom and back again.

That’s funny...when I think about it now.....this lady charging through the house with her walker, like she was off to the races. Oh my....life is fun.

We had a lovely trip up to Ottawa on Tuesday, about 3 hours from our place, to check out some seniors apartments and visit with our son Ralph and family. My sister June is moving to Ottawa next month, and she and I think it would be lovely for us all to live back in the same city. Our little brother David also lives in Ottawa, along with two of Jim’s brothers. So this might be an option for us in the next year. It’s always nice to have lots of family near by when there are health issues on the horizon.

No word yet on when my appointment is for the EMG and other neuro-muscular testing. I’ve been experiencing some new symptoms in my upper legs and arms during the daytime now.....a soreness and burning in the muscles....the same as you experience when you do some major activity your muscles aren’t used to. This would be OK...but I don’t do anything that would be exerting these muscles. It will be nice to find out what is going on for sure.

The countdown is on for our upcoming trip to Vancouver, British Columbia, to visit our two sons Lane and Gene and their families out there.....in fact...I’m down to eleven sleeps now. I have, of course, started packing....and repacking.....as we had to buy a new set of luggage as the result of one piece breaking on our Ottawa trip. We’re OK though...this is a 5 piece set...also in burgundy..and I have already crocheted the luggage markers and installed them on each piece, for easy identification at the airport. Life is indeed exciting!

HAPPY APRIL FOOLS DAY

Amazing how knowing the right words to use when conveying our symptoms to the doctor makes such a big difference.

I’ve been trying to get the attention of my family doctor, the memory clinic doctor and my neurologist concerning the terrible leg pains I’m getting in my legs and now my arms. I have tried over the year to get them to understand we are not talking Charlie Horses here. I’ve been calling them twitches followed by spasms, which then leave my limbs very, very sore. Definitely not the right words to get any action.

I hit on the magic word... FASCICULATIONS....(Muscular twitching of contiguous groups of muscle fibers). Finally my family doctor understands what I’m talking about when I say ‘twitches’. He is now sending me for some neuro testing, including an EMG on my legs and arms.

I discovered this word when I was researching ALS (Lou Gehrig’s Disease) and dementia. I have also discovered a chat room for persons with ALS...and have chatted with a few of them...trying to determine what their beginning symptoms were.....yes.....twitching followed by spasms. So maybe we’re on the right track here...hopefully to get some pain relief.

Oh yes...and since I had that one good night’s sleep when I overdosed on the aricept, my doctor is suggesting I start taking the aricept at night again...which I will do today. He’s hoping it might let me sleep better. We’re trying to remember when I changed last May from taking it at night to taking it in the morning.....we’re thinking it was because I couldn’t sleep! Oh well.....so goes the trial and error.

OK....I seem to be having some major brain glitches here. I don’t think I’m liking this one little bit.

Yesterday...in my cofusion, I somehow took a morning dose of pills along with my supper dose of pills. I didn’t notice until after I took my bedtime pills....when of course I realized I had then had double the daily dose of aricept and three doses of ebixa (memantine) instead of the two. I don’t seem to have any ill effects from the overdose. I remember my legs and arms tingling and feeling very heavy as I fell into a deep sleep...and didn’t have leg pains all night. Now...is this maybe something we need to check into....could in fact my legs pains cease with more aricept or ebixa? I’ll be investigating that one for sure.

Also in my confusion yesterday, I managed, in my attempts to assist Cat in the administration of our new website, to block myself from getting into the chat room. I could go in as a guest, but not as myself. So I was practically in tears when I finally went to bed...not having been able to figure out how on earth to correct my mistake. Fortunately Cat was able to trick the program this morning, and get me reinstated....as myself. And I swore to Cat, I will never try to assist her in the chat room administration again.

I think as a result of all my attempts to rectify this problem last night, I managed to lose some other important files, because when I tried to download some pictures for Jim this morning from the camera, I'm getting an error message...some files cannot be found.

I’ve mentioned previously how with this disease I definitely have a one tracked mind...I can only focus on one thing at a time. Well, our son Ralph installed a new anti-virus program on my computer last evening...done remotely from his Ottawa home. That was great...and I do thank Ralph. However, now, with this new program, I get these boxes that keep popping up telling me I have new mail....and should I allow it to come to my mailbox. As well, I occasionally get a little red box....trying to tell me something...what, I have no idea...but I think if I click the wrong spot on that box....it deletes my email program. Yes, you guessed it....while busy on another website, this box has popped up...and I have clicked something that I really wish I hadn’t...because now I have no email program whatsoever.

And since Jim is away at the dentist, and Ralph seems to be busy at work....I am sitting here in tears feeling very sorry for myself indeed. I really think I need to have a nap...and start this day over for sure.

GRAND ANNOUNCEMENT!!!
I am very excited to announce that my dear friend Cat, who's Mom has early onset alzheimers, and I have started up our own website with a chat room.

There has been increasing tension in the chat room that I've been going to for the past year.  Cat and I had this lovely plan this week to start our own chatroom...and make it a support room for everyone.... a place to exchange ideas between persons with dementia and caregivers, and a place to relax with friends.

Our new website can be found at www.alzheimers-dementia.net.  This website is still under construction, as Cat is trying to fit it into her already busy life, but the chat room is up and running. 

I do hope you'll pop in for a visit when you have a chance. 

Remember I told you earlier about how happy I was I had discovered Baby Wipes? Well, no one thought to mention to me that maybe, just maybe, it wasn’t a good idea to flush these little gems down the toilet. Good thing I love camping, cause I now have a camping toilet in my bedroom! Poor Jim has spent hours and hours......using first our snake, then a rented heavy duty snake, and finally the plumber with his power snake. We lost count of the number of these nasty little wipes that they retrieved. We haven’t gotten the bill from the plumber yet either!

Now it seems that even though the plumber seems to have gotten the pipes cleared, he’s thinking the pipes have in fact settled...and we have a low spot...and that’s why our system isn’t draining well, and hasn’t done so since we bought this mobile home four years ago. So it’s looking very much like we have a major job ahead...digging down to the sewer line outside our mobile home......and replacing 45 feet of sewer line.

In the meantime.....Jim has caulked two pipes under the trailer that seemed to be parting company, and I do believe we are going to try to make do......throwing all tp and wipes in the garbage...until we have a thaw. Or....move really early to our summer trailer!

HAPPY ST. PATRICK'S DAY

Yesterday Jim and I were in the kitchen getting lunch. I opened the cupboard door to get out the soup bowls.....now I just had that one thought in my mind....get the soup bowls. So my brain didn’t register that Jim was standing beside me, bending over slightly to give the dog a treat, and I hit his poor head with the cupboard door. I felt absolutely devastated...and it just reinforced our knowledge that with this disease....the brain can only process one thing at a time. Definitely the fact that his head might be in the way didn’t register at all.

I often wonder how safe our dog is attached to my HUMMER when I take her for walks around our mobile home park here. When I’m busy navigating my walker, will it in fact register that a car is coming, and I need to lock up her extendible leash? So far, I’ve been very lucky I think.

I’ve met a lovely lady in chat who has Vascular Dementia. She and another person with dementia have now started up a new website http://www.dementiausa.com.

Carole had posted on another website the following, which I thought says it so well: The loss of brain power (brain cell death) is not about "getting grouchy, getting lazy, getting indifferent" or even personality changes. It is more about the death of areas of the brain that ordinarily allow a healthy person to be even-tempered, conscientious and industrious, loving and loyal. So no amount of chiding, threatening or pleading is going to bring back dead parts of the brain. As people with dementia, it is important to us that you remember that when we were healthy brains, we were good and loving people because that’s who our spirits still are.

Just another reminder.....the chatroom at the FisherCenter is a truly lovely place to meet other caregivers and people with dementia, and share problems and just get unstressed. Hope you’ll join us there soon..
http://www.alzinfo.org/community/alzheimers-chatrooms.asp

MAKING LIFE EASIER

When talking with my friends in chat the other day, they were mentioning that their loved ones are having more problems with carrying out everyday living tasks.

I thought I would pass along just a few things that Jim and I have discovered are working well for me, so that I can still be somewhat independent.

So far I’m managing my morning bathroom activities just fine. My earplugs sit on the counter beside the tub. The containers with liquid body soap, shampoo and conditioner are all labelled and on the tub surround shelves in the tub/shower. And my shower stool sits in the tub, all ready for me to go. I’ve discovered if I just go slow, I manage to do all the steps to get myself in, cleaned, and out again. Sometimes I get the steps mixed up...and get into the tub before I have the water running and at the right temperature....so then I just back out and start all over again. I am discovering I’m missing the last step of my morning activities...the one of brushing my teeth. Don’t know how that step is getting missed. We may have to incorporate that step in along with my pill taking reminders.

Now I’m a big coffee drinker...and Jim doesn’t drink coffee at all. So I don’t even bother perking coffee anymore...but just use instant. Well, we discovered we can pre-mix instant coffee, whitener powder and my Twin Sugar in a plastic container. So one heaping tablespoon of mixture fills my cup. Jim keeps the thermos carafe full of boiling water all the time. So when I’m wanting a coffee, I have two steps......getting a scoop of the mixture...and pouring the water.

It seems the less time I have to spend trying to accomplish a small task, the less confused my head gets. And I do enjoy those precious moments with a clear head!

We had a lovely trip up to Toronto on Sunday to visit Jim’s folks, and sister Carly. We stopped along the way to visit son Sandy, wife Sarah, and daughters Hunter and Kennedy, at Bowmanville. I’ve added a picture of my two sweeties in their jammies on the Delicate family page further down on the website here. Our son Sandy turns 36 today...HAPPY BIRTHDAY SANDY!  Jim’s family was doing fine...and we had a birthday party for Jim’s Mom, who is a young 83. It was good to see everyone again.

Over the months in chat at http://www.alzinfo.org/community/alzheimers-chatrooms.asp, a few of my caregiver friends have mentioned that when they wake their wives with alzheimers up, they seem to have more problems than if they leave them sleeping until they wake up naturally. I definitely experienced this myself on Sunday. Since we had planned on leaving at 7am to do our trip to Toronto, I had asked Jim to make sure I was awake and up at 6am, so I would have time to wash and curl my hair.

Well, he did wake me at 6am, as I asked....and I must say....it definitely took several hours for my brain to come fully awake. I felt rather like a zombie as I tried to get myself ready for the trip. I definitely had more confusion than when I wake on my own. I can’t imagine that driving for two hours with an almost mute zombie was much fun for Jim either!

I think after this, we won’t plan a definite time to leave....rather we’ll let me wake up when my brain is ready, and we’ll phone folks when we’re leaving. This should work well for us, as I’m usually an early riser anyways.

SPEAKING DIFFICULTIES

Our daughter in law Lisa was down from Ottawa on Sunday with the two grandkids as well as her brothers two kids....visiting at our son Dave’s. Dave and Cindy have two kids...as well as 3 foster kids. Jim dropped me off to visit with them all, while he went to do his office cleaning jobs. It was great to see everyone...and get caught up on all the latest happenings.

I guess I’m so used to Jim being with me and helping me along with my conversations. I found it quite a struggle by times as my brain refused to produce the appropriate words. It seems the harder I struggle to get the word I’m grasping for, the more confused I get. My head starts feeling very large, and my frustration level increases tremendously.

I can certainly understand when caregivers say their loved ones don’t speak much. The alternative is not a pleasant experience for sure. So if you see me struggling....please help!

CONFUSION

I’ve just experienced about three hours of major head confusion. It seems to have started while I was preparing lunch. Jim was watching a loud video on his computer in the living room....which is attached to the kitchen. I should have just gone and got my earplugs.... but I really didn’t realize what was happening to me.

When I’m confused like this I tend to laugh a lot...at nothing....and talk a lot....about nothing. I really hate it when I’m like this. It makes me feel stupid.

I’ve found before when the confusion hits, if I just sit quietly for an hour or so, the confusion goes away. However, Jim suggested we go shopping...and I really hate to miss out on any shopping expedition....so off we went. I hadn’t told Jim about my confusion....because I didn’t want him feeling badly about the noise....and it was my own fault for not grabbing the ear plugs.

I think I managed to behave fairly well in the stores, because Jim didn’t drag me out....so guess I had things under control.

So I’m making a mental note to myself GRAB YOUR EARPLUGS SILLY!!!

And if you notice I’m laughing or talking a lot.....stick my ear plugs in, would you please?

DECISIONS....DECISIONS.....DECISIONS

Apparently one of the things you lose when your executive functioning goes is the ability to make a decision. This has not been a big problem for me so far.....I just let Jim decide most things.

It used to take me ages to get dressed every morning. I would sit on the bed and survey the line of clothes hanging in the closet. I would take down a blouse, then put it back, take down another one and so on. The same with the slacks. Well, thanks to an idea passed on from a caregiver in chat, I no longer have to deal with this situation daily.

I have four outfits......slacks with matching tops. Each outfit is hanging on a clothes hanger. I have the four outfits at one end of the closet. So each morning I just take down one clothes hanger, usually the one at the end of the closet. So no decisions are required....and I can get dressed as fast as the best of us. If I haven’t messed up that outfit by nighttime, I can actually wear it another day....so it gets hung back up in the closet where it came from....at the outside end. And on laundry day, the same outfits get hung back in the closet on their hanger ready to go. The socks are no problem....I just grab the first pair in the drawer.....and same with undies. So I still look fairly well put together.....and in record time also.

Now...when it comes to special occasions...that’s different....then I have to sit and ponder my closet again....and get Jim to decide what on earth I’m to wear!

I just made the most fantastic discovery...and I can’t think why I haven’t tried this before! I know the thought has crossed my mind.

Yesterday in chat a CNA who works in an AD unit in Tennessee asked why people with dementia are scared of water. I tried to explain...it’s not a fear of the water...it’s the extra input to our brain from the water hitting our skin and the noise of the shower. Having a shower becomes a really big issue in our lives.....and something to be avoided.

Well...today.....experiment number 160207....he he....I wore my 33 decibel earplugs in the shower. That’s the first shower I have actually enjoyed in over a year! I even took the time to use the back scrubber on my back. It wasn’t the usual rush job just to get me in and out!

Now I do have a chair in the shower....which I’ve been using for the five months or so.... and this lets me sit away from the direct onslaught of the water...which has been helping. But the earplugs make the most difference. I am quite amazed...and delighted...and just wanted to share this exciting news with you all!!  I would have included a photo...but this is, afterall, a family website!

Now the earplugs I use are about $2.00 for a package of 12...and they are bright orange and are actually washable.  The CNA did report back that they worked very well at the nursing home, along with lowering the pressure of the water.  Just one problem...when his back was turned, the resident ate them!  So do keep an eye on them! LOL 

DO NOT SWITCH YOUR MEDS

I mentioned back in January that Dr. Black was switching me from aricept to exelon, to see if it helped with an ongoing problem I’ve been having with my bowels.

For the past month I have been taking half the dose of aricept, which is 5mg a day, as well as 1.5mg of exelon both morning and night. I have experienced mild nausea, mild depression, mild confusion, and mild dizziness.....all of which I could have handled, knowing it would probably go away.

However, yesterday was day one of the second month of switch over, with no aricept...and 3mg of exelon twice daily. I had major nausea, major confusion, major dizziness and tight muscles all morning long after only the morning dose.

By lunch time when it had finally subsided some, I decided this was just not going to happen, and emailed Dr. Black’s assistant for advice.

He got back to me by 5pm telling me to quit exelon immediately, and start back on the aricept.

I am very relieved that I will hopefully soon have my happy life back.

Well this has been a fun filled week. On Monday morning I received a phone call from the TV station in Kingston, CKWS. They had read the newspaper article from the previous week, and wanted to help me get my message out. The reporter met me later that morning at the Alzheimer Society office, and did an interview which was aired on the 6 o’clock news. Hopefully all this publicity will bring more awareness as to the benefits of support for us all.

On Wednesday we did the one and half hour trip to Kingston for my six month check-up appointment with Dr. Garcia. Unfortunately, I had us there a day early. So we called that our practice run, and did it again on Thursday.

I won’t go into much detail of the doctor appointment, other than to say she was adamant that she is correct in her diagnosis of alzheimers, and sees no reason why I’m in a frontotemporal dementia research study in Toronto. She was not terribly happy with the neurologist switching me from aricept to excelon either. I somehow left with the feeling that I was a pawn in a power play between two doctors. She wouldn’t prescribe pain medication for me, even though she now admits I do have peripheral neuropathy. She said Dr. Black can take care of that in July, which I believe is still five months down the road?

Dr. Mitch Slutzky, a geriatric psychologist, attends our chats once a month, answering questions. I had asked him about the research I had heard of, indicating marijuana was proving most beneficial in improving cognition. He was very enthusiastic about it. And yet when I mentioned this to the doctor in Kingston she wouldn’t even discuss it.

So looks like I’m on my own again...doing my own research....and finding my own ways to make my new life a truly enjoyable one! (And I may have to fire one doctor!)

FIGHTING BACK....County woman rages against dementia

are the headlines of this week’s edition of The County Gazette.

You can view the whole story at:
http://www.napaneebeaver.com/pictongazette/localnews/localnews_feb2.html

Jason Parks did a wonderful job of getting my message across from my press conference earlier this week...and I do thank him for his help.

SUPPORT HELPS SUFFERERS LEARN TO LIVE WITH DEMENTIA

written by Bruce Bell of the County Weekly News also did a great article at:

http://www.countyweeklynews.ca/webapp/sitepages/content.asp?contentid=386540&catname=Local+Features&classif=News+%2D+Local

Kathleen of the Wellington Times was also doing coverage, unfortunately they don’t have a website, so I’m unable to share their coverage with you.

I just wanted to thank all three papers for bringing this important subject to the readers attention.

I hope our Alzheimers Society phone is ringing off the hook, as people realize the tremendous benefit to be found in the support that is being offered.

I had a terrific Memory Walk on Saturday. Princess and I walked around the hallway of the highschool ONE time, and raised ONE THOUSAND AND FIVE DOLLARS. I spent the rest of the afternoon visiting with other folks, as well as the Press. Thanks again to all of you for your help.

Yesterday our local Alzheimers Society had arranged a press conference for me. We’re trying to raise awareness of how important it is for persons diagnosed with dementia to keep their brains active, and how beneficial it is to interact with others with the disease There is no early stage support group in our County, because it seems I’m the only person in early stages who might benefit from a support group. Are all the other early stage people shut up in their homes waiting to die? I cannot emphasize enough how important it is to keep your brain active. The term USE IT OR LOSE IT applies here ten fold!

The support I’ve gotten talking to other people with dementia in the chat room at www.alzinfo.org had been truly amazing. No one can truly understand what we’re going through, unless they are also experiencing it. That desperate feeling of being alone disappears once you’ve talked to others with the disease. So I’m working very hard to get that message out to everyone. We need to find some way to get those diagnosed with dementia communicating with others with the disease, whether it be online, on the phone, or a local support group. You will see an amazing difference in how this disease is affecting them. They will learn new coping skills in how to manage day to day living with dementia. They will learn how to accept our changes and still enjoy life. They will learn THERE IS LIFE AFTER DIAGNOSIS!

Here we are into week two of Exelon.

A brief introduction into exelon:

Exelon is a type of medicine called a cholinesterase (COLE-in-NEST-er-aze) inhibitor. Cholinesterase inhibitors work by increasing the amount of available acetylcholine (uh-SEE-till-COLE-leen), an important chemical in the brain that is lower in people with Alzheimer's disease. Nerve cells in the brain need acetylcholine to send messages to each other. These chemical messages help a person do things like think, remember, reason, feel, and move.

Exelon can increase the amount of acetylcholine in the brain by stopping it from being broken down. This can help the nerve cells in the brain work better and may slow the progression of Alzheimer's disease symptoms, such as memory loss.

Dr. Black is making the switch from aricept to exelon....to see if it makes any changes to my stomach problems. I would like to mention that the depression that I seemed to be experiencing last week has thankfully gone back to its corner...and life is good again. I’m still experiencing more than my normal confusion, but that’s OK too.....my Mother always said I had a screw loose.

This Saturday is My Memory Walk, raising funds for Alzheimers research.  I'm only up to $780 so far, so any of you who have forgotten you were going to help me out in this.....YOU ONLY HAVE THREE DAYS LEFT!!!

Click on this link :
https://secure.supportthealzheimersociety.ca/ParticipantPage.aspx?PID=75&L=2&CCID=21&GC=GTv2  
then click on Donate up at the right top.  
 

And I do thank all my dear friends and family for all their support!

FOR SALE.....CHEAP....ONE USED BRAIN!

Oh my...I am struggling here. I mentioned in my last posting that Dr. Black is switching me from my drug aricept to another similar drug called exelon, mainly to see if it relieves the gastro problems. So starting Saturday, I went from 10 mg of aricept down to 5 mg of aricept, and added 1.5 mg of exelon twice a day. This will take one month, at which time I will quit the aricept completely, and increase the exelon to 3mg twice a day for a month, before increasing to 4.5mg twice a day.

I am back to a confused head most of the time.....and the depression is unreal. Poor Jim has had to listen to my ranting and ravings for the last couple of days...and usually goes for a snooze to get away from me. And I used to be such a nice person!

I’ve emailed a fellow traveler from my chat group....who had mentioned all of the folks in his early stage support group in California have now switched to exelon. I’m anxiously awaiting his reply.....to see how bad this is going to get before it gets better!

I really could live with the daily diarrhea you know....I had the diaper rash under control just fine!

On a happier note.....we’re planning a trip to Toronto on Saturday to visit with Jim’s folks and sister Carly. It will be lovely to see them again.

Another interesting day at SunnybrookHospital in Toronto. We arrived for our 9:00am appointment....with time to spare.....and proceeded with the cognitive testing. I zipped through the testing so fast, that we were finished in time for the SPECT scan, and didn’t have to have more testing after. Jim had his half hour interview, giving his observations of my progress. We then had almost three hours to wait until the next appointment with first the resident doctor and then Dr. Black, finishing off at 5:30pm.

Since I’m now in a research study for FTD, our parking was paid for ($18.00), so we just sat in our car for the three hours, eating our picnic lunch, and having a snooze.

So....after all the testing and scans, etc.....it seems they have no new information for us at this time. There has been no deterioration since my September appointment. Dr. Black is switching me from aricept to exelon, to see if this makes any difference with the leg pains and stomach problems. I have another appointment with her in six months to check that out. If the exelon doesn’t seem to make a difference, then she will be sending me for more tests regarding the neuropathy.

My new Dolomite Soprano walker, with 10" wheels arrived Thursday, and we managed a quickie walk at Sandbanks to try it out. This is the granddaddy of walkers to be sure.....and I’ve appropriately called it my HUMMER. We even figured out how I can heft it over fallen trees, even though it weighs in at 21 pounds! So I can see many more enjoyable hikes through the forests at Sandbanks in the days to come .

Well this has been a very relaxing week. My ‘loaner’ walker with 10" wheels is supposed to arrive tomorrow for me to try out. That should be interesting.

We go to Toronto on Friday, for what is going to be one very long day. My cognitive testing starts at 9am, then a SPECT scan at 10:30, followed by more cognitive testing followed by a short break, then our appointment with Dr. Black at 3:30. I’m afraid my brain will be ‘tested out’ for sure! It will be very interesting to hear what Dr. Black has to tell us about the results of the EEG, MRI and SPECT scan.

The FisherCenter for Alzheimer’s Research Foundation, who provides us with our Chat Room at www.alzinfo.org is implementing their brand new website on Friday. They have now made me their Chat Room Moderator, and had me record a welcome message to everyone coming to chat. The webmaster told me yesterday that the Story that I had recorded for them as to how the chat room is helping me cope has brought in over twenty five thousand dollars so far to further alzheimer’s research. I am absolutely amazed, and very pleased.

My Memory Walk for Alzheimers is fast approaching on January 27^th. I’ve had great response from all my family and friends...and it’s so much appreciated. If any of you would like to sponsor me with a donation of even ten dollars, please email me, and I’ll send you the link to do it online. The cure for Alzheimers is just a heartbeat away, I’m so sure of it......and there’s a whole bunch of us just hanging on for dear life!  My e-mail address is marymck@kos.net.

And here we are in a brand new year....which is definitely going to be one terrific year...I can feel it in my bones.

Now I just wanted to share a couple of things with you.  

With gastroparesis, caused by the peripheral neuropathy, you tend to have very loose bowels...and even though with very careful attention, I seemed to develop what only could be called "diaper rash".

Well, after conferring with two of my daughter in laws who are in the know of such things, I purchased some Baby Wipes and a jar of baby's zinc ointment...and voila...no more diaper rash.  After suffering for several months with this....let me tell you, the relief is profound!

Another piece of extremely exciting news is about a new drug called Alzemed.  The clinical trials have just finished for this drug, and it is now being fast tracked to the FDA.  I have been chatting with a woman from New Jersey who's Mom has been on this drug for a year and a half.  Mom was diagnosed ten years ago.  She said the results are amazing.... and they are terribly pleased with the drug.  She said a number of the symptoms have disappeared, and Mom is now off on a two month vacation in Florida with her husband. I'm hoping this woman will return again to chat, so I can get more information on the symptoms that have disappeared!  So we will definitely be watching closely for any news or updates on this drug. Hopefully this drug will also be effective at clearing the protein buildup in my brain which causes FTD!

No word yet on the delivery of my new walker....with 10 inch wheels.  I just cannot believe how slow some companies are .... you would think one month was plenty of time to bring in a Dolomite Soprano walker!  I may soon have to start phoning all over Ontario to locate one myself! LOL