What a special, special Christmas weekend this turned out to be. This is a picture of the fantastic Gift Basket that I won in the Foster Parent’s Association draw. Everyone enjoyed all the goodies out of it...and our cat will love the basket!

Friday night we had a special evening with my brother Dave from Ottawa along with his daughters and family and sister June from Guelph at the Huff’s Estate Winery Inn...... it was a fantastic place for our little gathering.

Saturday was our Family Christmas Get-together with 38 of us. What a lovely day that was, to see all the kids and grandkids from my side of the family! Our photographer son Gene did a family shot, all of us arranged on Dave’s haywagon......another moment to treasure.

Monday was a Christmas Day that will remain in our memories for a long time....with our five sons and families, and Jim’s Mom and sister Carly from Toronto and brother Doug and son Brian from Ottawa...only 27 of us. The little kids opening presents was so precious...."Oh, just what I’ve always wanted!"...ringing through the room! I think little Robert said it well...."This was the best Christmas ever!".

The food that came from every house was to die for.....and I had to sample it all, of course. My little trailer worked out so well for my quiet spot. I really hated having to go out there though...afraid I might miss something.....but when my eyes wouldn’t focus or I was having trouble making sense of words, I knew it was time! I only had two accidents...and had to change my clothes once....so that’s not bad for a fuzzy brain!

Now we’re planning on seeing how many of us can make the trip to Vancouver for next Christmas, and do it all over again! Wouldn’t that be a trip to remember!

 I've just finished My Memoirs, which I'm giving to our five sons for Christmas.  One of our daughter in laws had suggested I might do this for the boys, while I was still able to.

Traveling back in time to get it all down on paper, made me realize how our roles change over the years.  My memories of all my childhood years, all the love I felt, and how cherished I felt...I was the child. 

And then all the years of marriage and motherhood.....the joys and heartaches of being a Mom to five sons.  Being the best wife I could possibly be to first an abusive husband, second an alcholic and abusive husband, third to a lovely man who died tragically at the age of 36, and now for 26 years to my wonderful Jim.  Spending all those years struggling to keep my kids safe and loved...I was the wife and mother.

Then the year of my dear mother's illness.  Finding her sitting on the side of the bed crying because she could no longer pull her stockings on.  Cuddling her and telling her that was OK...because that's why she had me, to help her along when she needed it. Washing her bottom and spoon feeding her, all along loving her and joking with her.  Lying on the hospital bed with her....holding her in my arms.....making her feel safe and secure through her drug induced delerium.....I was the daughter.

And now, here I sit....wondering .......who am I now?  I think I see it...we're on full circle.  God gave me life and everything in between, and now I'm just completing the circle.... ending up as the child again, with the same feeling of being loved and cherished.  Isn't this quite amazing....this is Me and this is Life!

ONLY 10 SLEEPS ‘TILL CHRISTMAS

And the excitement is definitely mounting! I finally finished my crazy quilt for our year old granddaughter Quinn. I’m afraid any future grandchild will have to look to their other grandmother for such, because I don’t think this brain can handle another one.

Our two sons and families from British Columbia arrive on Thursday and then the fun begins. I plan to take my little 13 foot trailer over to son Dave’s and plunk it and myself in his driveway. I don’t want to miss a single minute of fun with the kids and grandkids! I will have my digital camera and my laptop.....and plan to make this a Christmas to remember!

To make it even more memorable....my sister June and brother David and their families are also joining us on December 23^rd. So 36 people roaming around Dave’s 8 bedroom farm house.......can’t you just feel the excitement?

The webmaster at the alzinfo.org website where I go to chat daily has asked for testimonials from some of us, telling about our life after the diagnosis of dementia and how their website has helped us. If you would like to hear my little blurb, you can click on the following:

http://www.alzinfo.org/story/anmviewer.asp?a=9&z=1

If you wait a few seconds, you’ll hear me speaking.

Now the next installment of my FTD Journal should be coming to you from inside my Bonny Boler....parked in Dave’s driveway....with my heaters running to keep me warm.....and numerous grandkids to cuddle!

This is a picture of the Dolomite Soprano walker that is being ordered in for me to try out. It has 10" wheels....it’s the one recommended for people who do lots of outdoor activities. I get to ‘test drive’ it for a week or two before we decide if this is what we want. I’m supposed to go for my usual walks at the Sandbanks, along the beach, and through the woods...as I have been doing ...and see how it works for me. My only concern is it weighs 6 pounds more than the one I’ve borrowed from the Legion, which I tend to lift up over logs and rough patches. The physiotherapist was horrified when I told her this!

In my research on walkers, I even discovered one that has ski attachments for the front wheels. Now that I would love.  It is a totally different design....and doesn’t look like the ‘old persons walker’! Unfortunately it is too new to be covered by the Ontario Assistive Devices Program which will pay for 75% of the walker. But it sure is nice to see they are now designing walkers with the ‘young at heart’ in mind!

The excitement is definitely building for our Family Gathering on December 23^rd. At last count, I think there will be 36 of us. This will include my sister June and brother Dave and their families, along with our five sons and families. Our two sons and families from British Columbia are flying home as well this year. The emails are flying regarding food and gifts and accommodation. What a special Christmas this will be for sure.

The month of November has gone so swiftly...and here we are getting ready for the Christmas Season. This is a picture of my little three foot tree I bought at Canadian Tire this week for $7.99..already decorated with lights. We just added some little pine cones collected on our walks, a few little balls, and some garland. It is perfect for our little home...and the price was sure right!

Went to see our family doctor this week. Got renewals for my prescriptions, and the paperwork to buy my new walker next week. Now I can really dress it up with bells and whistles.

He also signed the paperwork for my Disability Sticker for the car. This is very exciting....not that we’ll start using the Designated Parking Spots, but now we get really inexpensive camping at all the Provincial Parks (like $10 a night), and I never have to purchase a fishing license again. I’ll have to do a search and see what else this Sticker entitles me to. I knew there had to be some benefits that came along with the disease.

We’ve been doing a two or three mile walk daily at the SandbanksProvincialPark which is just a mile away from us. The walker works well on the beach, and Princess gets to run loose, as there is a snow fence to keep her from running into the bushes. If there are a lot of waves, we walk through the campground itself, as the noise from the waves confuses my brain. Jim is awfully good at noticing when I’m not functioning at my norm and gets us to a quiet spot.

I heard in chat yesterday that a massage with Lavender Oil helps with the leg pain of peripheral neuropathy, so Jim immediately went to town looking for Lavender Oil. None available in Picton, but he did find a tube of Lavender Relax Therapy moisture body lotion, which he massaged into my legs and feet before bed last night. Doesn’t he just spoil me? Now I must say, I didn’t wake in the night with pain......and was this just coincidence....or does it really work? We’ll keep doing it and see how it goes....and I sure do love my massage therapist.

HAPPY THANKSGIVING TO MY AMERICAN FRIENDS

In our chats this last week, all the discussion was around turkey and other goodies that were going to be enjoyed on this festive day. I was feeling so sorry for myself.... our Thanksgiving is all but a sweet memory...with no smells to go with it!

Wait....what’s to stop me from having our own Thanksgiving I said! So I now have 3 humongous turkey drumsticks, nestled in dressing, baking in the oven.... a recipe from the internet called Eva’s Savory Turkey Legs! Baking beside it is Apple Sweet Potato Casserole, also supplied to me by the internet. And to finish it all off, I will have Microwave Apple Crisp with Peppermint Candy Ice Cream. Let me tell you, Jim is really going to be wishing he wasn’t a vegetarian tonight! And yes, I will be adding pictures and recipes to My Photo Book for Jim’s future reference!

The medication domperidone is working very well for my gastroparesis. I take one before each meal, and my stomach is feeling great.....and my bottom doesn’t burp every time I take a step! And needless to say, I’m back to eating real food, and not having to worry about losing any of my fluffiness.

We had to make an emergency dental appointment yesterday. I’ve developed an infection where the two teeth were extracted three months ago. Xray shows the bone hasn’t filled itself in, and the gum was open down to the bone. I am now on clindamycin for serious bacterial infection. This is an interesting drug....you have to take two every six hours....so it means I have to set my alarm in the night to wake up and take two pills....and not lie down for 30 minutes. Fortunately this is only for one week....and it won’t stop me from enjoying my Thanksgiving Feast tonight!

Oh my goodness.....I was afraid I was going to fade away to a shadow! (Not very likely, you say? He he)

My peripheral neuropathy has now extended up to my stomach, and I have developed gastroparesis. Gastroparesis happens when nerves to the stomach are damaged or stop working. The vagus nerve controls the movement of food through the digestive tract. If the vagus nerve is damaged, the muscles of the stomach and intestines do not work normally, and the movement of food is slowed or stopped.

For some time now I’ve experienced a lot of nausea, and I’ve noticed a feeling of fullness after eating just small amounts of food, and burping food back up. And the really embarrassing part was the passing of large amounts of gas when I walked. Jim understood at home, but it was rather awkward when shopping or out visiting.

This week I’ve had terrible stomach spasms, which would last for hours. Even spending several days on a liquid or semi-liquid diet didn’t bring much relief. And my poor stomach was growling with hunger pains the whole time! Of course our family doctor is on holidays this week....so it was off to emergency yesterday. Only a three hour wait...not bad at all.

I had typed out my conditions and symptoms, starting with the language presentation of FTD, then the neuropathy, down to the gastroparesis, so all the doctor had to do was read them....and I wouldn’t have to talk. I find such difficulty trying to get my thoughts collected and the right words to come out. But NO....there I was struggling away... trying to convey my thoughts to the doctor. I get so frustrated, I almost start crying. Anyways, she did prescribe Domperidone which makes the stomach muscles start working.

I had a great night....and plan to eat real food today! See, it pays to be FLUFFY....cause I didn’t fade away to a shadow!

HAPPY 41ST BIRTHDAY TO OUR SON GENE

I’ve been having increasing problems with my balance, as I mentioned previously. In fact, I now use a walker when I go for my walks around the block. The walker is a loaner from the local Legion...complete with wheels and brakes....but no whistles! He he

I’m fine in the house....I hang onto walls and furniture....and when we go shopping, I have Jim and my cane....and then shopping carts, of course.

I’ve been researching for several days now....and not coming up with the symptom of loss of balance in any of the dementias in the early stage. I was awakened bright and early at 5 this morning with the pain running up the outside of both legs again from peripheral neuropathy.....and then it dawned on me. Could this be the cause of my loss of balance? Aren’t those muscles running down the sides of the legs involved in keeping me upright?

A search of "loss of balance and peripheral neuropathy" brought up page after page of information. I feel so relieved! It’s not all in my head! (or it is..he he)

Peripheral neuropathy is a disease in which the nerves of the body are injured. There are multiple diseases that could cause neuropathies. The peripheral nerves are a group of cells that transmit information from the brain and spinal cord to the muscles and the organs of the body and they also carry information back from the skin and the organs to the brain. When the peripheral nerves are damaged the brain loses its connection with the muscles, skin, and the other organs of the body.

You may experience burning, freezing, shooting pain that may be worse at night, gradual muscular weakening, skin that is extremely sensitive to touch, and loss of balance or coordination. In extreme cases you may lose the ability to stand, walk, or hold objects in your hand.

Peripheral neuropathy can also affect the nerves that control automatic functions such as heartbeat, bladder control, or bowel function. You may experience diarrhea or constipation, incontinence, sexual impotence, and high or low blood pressure. Your skin may become dry and pale, and you may sweat excessively. You may also develop blurred vision, dizziness or fainting spells, or stomach or intestinal problems.

So, that’s O.K. then....I can deal with all of those ......and I’ll work extra hard on keeping the heartbeat one working!

Before I tell you about the Changing Melody Forum, which was excellent, I just have to tell you about the hotel. We were whisked up to the 18^th floor of this splendid hotel in an elevator that was all mirrors and gold. Since we hadn’t paid the extra $30 for a newly renovated room but stuck with the $214 room, we had just the normal 20 to 30 year old room....but....it was overlooking LakeOntario!
On the coffee table were two large bottles of water beside the ice bucket. After a three hour drive, including me, the navigator, getting us lost, the bottled water looked so inviting. However, according to the welcome tag on the bottle, if you indeed enjoyed this refreshment, your room would be charged $5.95 for each bottle. To make a local phone call was $2.00. I didn’t dare open the fridge! I did glance at the menu for room service. A piece of toast and coffee in the morning would have been $16.00. Thankfully, I had tucked a cooler into our suitcase with bread, humus and peanut butter, some apples and bananas, and cans of iced tea!

The best part of the hotel was the pool and whirlpool......at no added charge. We had two enjoyable soaks on Saturday, and Jim even did laps in the pool. It was fantastic. Sadly, I discovered that the lovely sensations to the body from the pulsating jets of water definitely aggravated my peripheral neuropathy....and I spent a lot of time in the middle of the night sitting up in a chair waiting for the pain and cramping to leave my body.

The Changing Melody Forum was excellent. Two women with EOAD gave keynote addresses, and had us in laughter and tears. Dr. Chertkow, a cognitive neurologist, gave a good presentation on the importance of early diagnosis, and Gerry McKee told us about being on the experimental drug Alzemed. He reports no side effects from this drug, and no further shrinkage of his brain for the last eighteen months since he was on it. So we’ll be eagerly awaiting the completion of testing on that drug.

After a delicious meal of soup, salads, and subs, the afternoon session consisted of presentations and discussions on the importance of staying involved in activities, both in the home and out, followed by a panel discussion on "Rising Above Misconceptions". We need to educate people that even though we’ve been diagnosed with a brain disease, we are still useful individuals, and still have much to contribute. As David Knight said in his presentation: "Live life to the fullest extent possible, accepting the newly revealed limitations and living within them - and yet, not fully accepting them and thereby remaining active in whatever is of special personal interest."

HAPPY BIRTHDAY SWEETHEART!

Jim turned 59 years old today....he’s trying to catch up to me. He said "Yep, now I’m an old FART"......I said no, he has to be at least sixty to be one of those.

We’re going to meet my sister June and her husband for dinner as they pass by on their way to Ottawa to visit their daughter Cheryl. I will be sporting my new and improved cane. I inherited two canes from my Mother, and she inherited them from her Mother......so they’re really old!

Jim was busy yesterday cleaning and sanding them, and has applied one coat of varnish to each of them. They are looking very much improved.....and after a few more coats they will definitely be pieces of art.

I’ve been having increasing problems with my balance. Living in a mobile home is great in that everything is very close to hang on to. When I’m in a store, I’m fine because I have a shopping cart to hang onto. Getting from the car to the store is a problem....and I fell against the wall of the store trying to make my way to the door the other day. Everyone probably thought I was drunk, so from now on I will definitely be using Jim or a cane.

We discovered the local Legion have various assistive devices which they loan out, so we borrowed a shower chair to use in the bathtub. This worked very well and I don’t have to lean against the wall to keep myself upright.

I did venture out to walk the dog this morning using my cane, but I have a feeling a cane isn’t going to be the answer, as I still feel very unstable. We may go back to the Legion and borrow a walker to see if I can still walk the dog. My loss of balance is on my list to speak with Dr. Black about in December.

I did some research on frontotemporal dementia and loss of balance. I was not terribly pleased to read that once balance problems are experienced, there is usually a rapid decline. I refuse to even contemplate any rapid decline in anything...except maybe my weight...at this point in my life, so we won’t even go there!

I’m very excited about our trip to Toronto this weekend for the Changing Melody Forum, and I can hardly wait to use the hot tub and pool at the Westin Harbour Castle Hotel!

Jim and I are just back from an early morning jaunt down to the shores at Salmon Point and Point Petre to view the 15 foot waves on LakeOntario. We could see them breaking off in the distance, but by the time they reached shore they were only four to six feet....still pretty impressive. The winds were so strong, I had to hang onto the car to keep my balance, while Jim took pictures.  We had to take a detour on our way back as a tree and hydro lines were down across the road we had just come up on. We went down another road, and Jim had to get out and remove several trees and branches for us to continue.

My little brother David arrived from Ottawa yesterday afternoon to visit. David and I manage to see each other at least once a year....and this was the second visit this year. We do keep in touch via email of course....but it’s just not the same as a real hug and kiss! We had a lovely afternoon together and got caught up with our families activities and did a lot of reminiscing. Now we’re in the planning stages of getting all his family up this way around the Christmas season, when our five sons and families will be here. Some of the kids haven’t seen each other for years, and haven’t met some of the newest babies from either side. Makes me think of the old days when all our families lived on one street together!

As many of you know, I’ve never been much of a housekeeper.....my motto was....my house is clean enough to be healthy and dirty enough to be happy.....and I’ve lived by my motto very well! The last couple of years I’ve struggled to keep up with the ‘clean enough to be healthy ‘ part. This could be partly due to the apathy which is a part of the disease, and partly due to the fact that I’ve got so many more exciting things to take up my time. So I just wanted you to know that I’ve just spent two days cleaning house before David arrived and if you want to visit us in our really clean house....you better do it now....cause you may not have a chance to experience this again for a long, long time!

That's not a picture of me...but it is the new laptop table Jim bought me!   I've been having increasing difficulty lifting my laptop and the cooling pad it sits on, from the side table beside me to my lap.  Over the year I have been losing strength in my upper arms and legs.  Jim found this great table at Canadian Tire for $29.99.  You can adjust the height for whatever chair you're sitting on, and when I'm not using my laptop, the table just slides to the side out of my way.  A great invention.

I decided I really needed a cell phone for when we do any traveling about, and spent several weeks researching the various plans online.  I found a very inexpensive plan with Virgin Mobile with the pay as you go plan.  So looks like it will be about $8.00 a month, depending on how much I use it.  I was really having difficulty convincing Jim we should have one, until his sister Carly agreed with me, and that seemed to be the extra leverage I needed.  I am so bad!   Jim said it can be my early Christmas present! he he

Jim and I have spent several evenings sitting in our Bonny Boler.  He brought a nice little table lamp out....so we have a very cozy little spot to sit and visit.  I think our neighbours are all envious of the fun we two have.

I'm getting very excited about the upcoming Changing Melody Forum in Toronto on November 5th.  You can read all about it at   http://www.dasninternational.org    

Our son Dave mentioned this week that the Foster Parent's Association, of which he is President, is having a yard sale this Saturday, and they're looking for donations.  That's a really bad thing to tell someone with FTD!  All of a sudden, I was on a mission....and started filling boxes with things we had accumulated over the years, and loading them in our van trailer that we use for moving stuff.  I'm sure our neighbours must have wondered if we were moving again! Then of course, we now had a completely empty cabinet sitting there in the living room, so that might as well go to the yard sale too!  Poor Jim!  He decided he really could use the cabinet in his bedroom to store stuff, so it didn't end up in the trailer. And he did retrieve a few things that had sentimental value.  The poor cats didn't even get by unscathed.  They have this two story climbing apparatus, with two little houses...which they never use!  So I moved it close to the door, to be transported to the trailer.  Well, all of a sudden, they just couldn't leave it alone!  Their prized possession was leaving?  I've relented for now....but we'll see!

We had a lovely trip to Toronto yesterday to visit Jim’s folks. Jim and his sister Carly spent the morning doing yard work, while I visited indoors with Jim’s parents. Carly had prepared a delicious vegetarian sweet potato chili, to go along with the home made bread we took.

I slept most of the way home....and after a couple of hours of unwinding....I was in bed sound asleep by 7:30pm.

Of course I woke again at 1am....tossed and turned....was up and back to bed numerous times, and finally fell back to sleep about 5am. The pressure in my head was unreal, and of course the more I worried about things the more pressure I felt.

I have that feeling of sinking in the quicksand again...I feel I’m slowly sliding away, and there’s not a thing I can do about it. Even with just five of us together I struggle to follow the conversation, and the pressure in my head builds, and my eyes feel like they’re going to pop out! Now I’m really worried about how it’s going to be at the Changing Melody Conference in Toronto in November with several hundred people!

On the bright side....Lisa, one of our daughter in laws, suggested I write my Memoirs for our sons! And I’m happy to say I got a good start on that....on the drive to Toronto yesterday. What a lovely idea....sure wish my Mom had done something like that!

Happy Friday the 13th!

Well, I can definitely see a problem down the road, which is concerning me greatly!  When I am no longer able to make my own meals, my very slender, vegetarian Sweetheart will be in charge....and I know I'm going to fade away to a mere shadow of my now 'fluffy' self

Just as an example, yesterday I decided to treat Jim and make him some toast for breakfast when I made my own.  I spread a nice little amount of peanut butter on Jim's (no jam..he doesn't eat sweets), and he started choking...too much peanut butter.  So this morning, I tried again....with just a light skimming of peanut butter....you could actually see the toast through the peanut butter!  That was better, but was still more than he would use.  So you see why I'm worrying?  I like my peanut butter and jam mixed and applied  about 1/3" thick, so each bite is a thrill!  I showed him my piece, and how delicious it looked.  His reply?  "Well, take a picture of it and put it in your Photo Book".  LOL 

We're heading off to Toronto tomorrow to visit Jim's parents and sister Carly.  I will take my camera along to take pictures of real food....for my Photo Book....in case Jim needs a reminder....sometime down the road!

 Researchers Find FTD Protein

(Source: LiveScience) - Scientists have found a
malformed protein whose unhealthy buildup inside
cells can lead to fatal paralysis and dementia.

High concentrations of a protein called TDP-43
was found in the brains and spinal cords of people
who suffered from amyotrophic lateral sclerosis
(ALS), also known as Lou Gehrig's disease, and
frontotemporal dementia (FTD).

Scientists have long suspected a link between ALS
and FTD, because patients with one disease often
develop symptoms of the other. The new finding
explains the overlap by showing the two diseases
share the same root cause.

Go to full story:
http://www.livescience.com/humanbiology/061008_als_culprit.html

HAPPY THANSGIVING CANADA! 

We’re spending Thanksgiving at our son Dave’s farm...about 40 minutes away from our place. Dave and Cindy have a big, old rambling farmhouse...with 8 bedrooms! The ideal spot for our family get-togethers.

Sons Ralph and Sandy arrived with their families....and we had a most enjoyable Sunday with them all (6 grandkids and 4 foster kids that Dave and Cindy look after).

We brought Our Bonny Boler along, and this worked out extremely well. It gave me a quiet place to wander out to, when things got overwhelming for me.

We’re doing the Family Get-together again at Christmas, and our two sons from British Columbia and their families will also be flying out to join us! I’ve got my fingers crossed we’ll be having a warm winter and we can bring our trailer along! LOL

I’m sorry to say that several times I experienced aphasia (inability to understand language) and quickly retreated to my hidey-hole! Seems like there was just more input than my brain could handle.

From the information I've received at the FTD support group, it seems likely that this aphasia will become more pronounced as the brain cells deteriorate.  They highly recommend compiling a photo book for communication when I am no longer able to understand or communicate verbally.  So I've been very busy taking photos of everything and everyone with my digital camera...and I have a file on the desktop of my laptop entitled MARY'S PHOTO BOOK.  Inside are folders with various Headings.....Home and Trailers, Family, Pets, Clothes, Food, Toy.  I'm busy putting pictures in these folders.  From what I understand, when I can no longer communicate by word, for some time I will still be able to communicate by pictures....which is great!

The fun part:  I'm taking pictures of my favorite foods, and whenever I make a special casserole I'm fond of, I plan to also include the recipe for it....so Jim will know how to make it! LOL   

Ahh....moving day....leaving our 40 foot trailer overlooking Lake Ontario....back to our 60 foot mobile overlooking East Lake (twenty minutes away)!  We've had an excellent summer but I'm ready to move home again.

I must say I'm finding it extremely hard to be organized in my moving preparations.  I'll get a box half full and then think of another chore I need to do before I forget!  My brain seems to be in it's "drunken state" most of the time.  I did find after a twenty minute nap yesterday I was much improved.

On Friday we go to Kingston (1 1/2hr away) for my EEG, so I get my favorite Chinese Buffet...LOL  It will be really nice if they find some brain activity, and not too many dead ends! he he

I've found a new support group for care givers and people with frontotemporal dementia.

http://www.ftdsupportforum.com/

I've been very busy reading messages...trying to learn more about FTD.  One interesting thing I've come upon so far, is that there seems to be two types of FTD:
Behavioural presentation of FTD
Language presentation of FTD
Now, from what I'm reading, people with behavioural presentation cannot take the medications aricept and ebixa, which I am on, as they significantly increase the aggression.  Which leads me to believe I have the language presentation of FTD.  So......does that mean I probably won't end up running madly through the neighbourhood in my altogether? 

Another interesting bit of information....caregivers are talking about photo books they compile...for when their loved one becomes mute!  The person with FTD can then look at the book and point to what they want.  The brain can still apparently recognize objects, but the person can't verbalize them.  Jim remembers when he worked with the developmentally handicapped years ago they had 'picture boards' for the clients to use.  Seems to me, in this day and age, these 'picture boards' might be something that could be downloaded on the computer....another project for me to investigate!

OK...my head is screwed on right...for now....so here's some information about frontotemporal dementia.

What is frontotemporal dementia?

The term ‘frontotemporal dementia’ covers a range of conditions, including Pick’s disease, frontal lobe degeneration and dementia associated with motor neurone disease.

Frontaltemporal dementia is an uncommon brain disorder characterised by personality change, and disordered thinking. Frontotemporal Dimentia selectively affects the frontal lobe of the brain and may extend backward to the temporal lobe.

Frontotemporal Dementia Frontal may lead to apathy or conversely disinhibition, disordered high level thinking, perseveration, and personality change. The manifestation will depend on which part of the lobe is more affected dorsolateral or orbitomedial. Many routine dementia assessments do not test the frontal lobe.

All are caused by damage to the frontal lobe and/or the temporal parts of the brain. These areas are responsible for our behaviour, emotional responses and language skills.

Who is affected?

Frontotemporal dementia is a rare form of dementia, occurring far less frequently than Alzheimer’s disease, for example. Younger people, specifically those under the age of 65, are more likely to be affected. Men and women are equally likely to develop the condition.

What are the symptoms?

Damage to the frontal and temporal lobe areas of the brain causes a variety of different symptoms. Each person will experience the condition in his or her own individual way.

Personality and behaviour change

Typically, during the initial stages of fronto-temporal dementia, memory is still intact, but the personality and behaviour of the person changes.

People with frontotemporal dementia may:

Lack insight and lose the ability to empathise with others – they may appear selfish and unfeeling

Become extrovert when they were previously introverted, or withdrawn when they were previously outgoing

Behave inappropriately – for example, making tactless comments, joking at the ‘wrong’ moments, or being rude

Lose inhibitions – for example, exhibiting sexual behaviour in public

Become aggressive

Be easily distracted

Develop routines – for example, compulsive rituals.

It is important to recognise that these symptoms have a physical cause, and cannot usually be controlled or contained by the person.

Language problems

The person with fronto-temporal dementia may experience language problems, including:

Difficulties finding the right words

A lack of spontaneous conversation

Circumlocution, or using many words with little content

A reduction in or lack of speech.

Changes in eating habits

The person may overeat and/or develop a liking for sweet foods.

Later stages

The rate of progression of frontotemporal dementia varies enormously, ranging from less than two years to over ten years.

In the later stages, the damage to the brain is usually more generalised, and symptoms usually appear to be similar to those of Alzheimer’s. People affected may no longer recognise friends and family and may need nursing care.

So...very similar to alzheimers...just different symptoms to start with.....and I'll be working on trying to get over the ten year mark! he he

Just back from my long awaited appointment with Dr. Black, the head of Neurology at SunnybrookHealthScienceCenter in Toronto. If you remember, I had applied to be a candidate in the neuroimaging study being conducted at about 50 sites in Canada and the States. Today was my 3 ½ hour screening evaluation to confirm my diagnosis of alzheimers.

The good news is.....I don’t have alzheimers! Magically cured....must have been all the coffee I’ve been drinking, and all the chatting I’ve been doing online at DASNI! LOL

The bad news is......Dr. Black is quite certain it is frontotemporal dementia....and has ordered an EEG, an MRI and another series of cognitive testing, followed up with an appointment with her.

So, this would explain why I don’t feel I have a problem with my memory, and why I have so much confusion in my head....and the feeling of being drunk all the time.

I will post more information on frontotemporal dementia at a later date, when I have my head screwed on properly! he he

We got a roof rack system with bike holder and kayak stacker installed on the roof of our car...and headed out Thursday for an adventure at Adolphustown Campground. You can see a picture on Our Bonny Boler page. Got the same lovely waterfront campsite...and proceeded to set up. Discovered the thermos of hot water I had brought along in the top cupboard had tipped over, spilling it’s contents through the cupboard, and down onto the front seat and pillows. The pillows and pillow covers sat outside for a couple of hours drying, and Jim hooked up the little ceramic heater to dry out the cushion. I also managed to trip over the dog’s water dish...so got to wash my floor again! It was definitely too windy for me to adventure out in the kayak, but Jim did get to do a bike ride along some new territory...and see some new sights! Princess and I enjoyed ourselves watching a few boats going by ...and got some lovely walks in.  I had a terribly restless night...until I remembered the ear plugs.  The heater was noise was doing a number on me.  We slept in until 9:00am....very unusual for either of us.  Had an enjoyable kayak ride along the shore for about an hour, before the winds picked up....and we decided it was time to head for home.  Rain is forecast for the afternoon and most of the weekend...so we lucked out again.  Such fun! 

 We've had a busy week....getting Our Bonny Boler ready for our trip to Niagara Falls to meet up with other Boler owners, and seeing Dr. Garcia in Kingston on Thursday.

I got my prescription for Ebixa (no more free samples) ($155/month)....and after testing, was told I had no decline, so the medications are working.  She said not recognizing myself in the mirror is common in alzheimers, some get this sooner than others...and some don't experience it at all.  Still a very scary thing though.  She said the dizziness and incontinence is probably caused by caffein...and to quit drinking coffee!  Now that's really scary!!  However, an article in the Alzheimer News on Friday from the Byrd Alzheimer Institute reports caffein reduces the risk of alzheimers and improved the cognition in mice.  So I'm still drinking my coffee!  You can see the article at: 
 http://www.prnewswire.com/cgi-bin/stories.pl?ACCT=ind_focus.story&STORY=/www/story/09-13-2006/0004432105&EDATE=WED+Sep+13+2006,+11:08+AM

Friday morning we packed up and left for Niagara Falls (225 miles)...stopping at Hamilton to meet up with my sister June and husband Nick for lunch.  They were dying to see Our Bonny Boler!  We arrived at the KOA campground at Niagara Falls....only to discover our site was under water!  Jim had us moved to a less watery site, and we proceeded to set up camp.  There were 5 other couples there with their Bolers...and we spent the rest of the day visiting with them....discussing Boler adventures....and Boler renovations.  It was great to meet them and to see what changes and innovations they have come up with for their little Bolers. 

I had thought we might get some 'hot tub' therapy...but this is one huge campground...and both hot tubs were full, and the indoor pool was teaming with happy, screaming kids!  We are so spoiled with our quiet campground where we live all summer.....we realized our lot would have had at least 10 trailers on it if it was a KOA! he he  And I didn't even catch a glimpse of the Falls....we had planned to drive by them on our way home....but the traffic in Niagara Falls is unreal....and we decided to just head back to the highway. 

I washed the Boler floor at least three times....Princess doesn't have shoes to take off at the door...and there sure was a lot of mud.  Various neighbours around us didn't settle down 'till after 1am....and grandkids next to us were up at 6....so it was a very short night!  After some more visiting with our Boler friends, we packed up and headed out at 10am Saturday morning...on our way to Sandy and Sarah's at Bowmanville...to park in their driveway for the night.  Somewhere going through Toronto, it dawned on me that my brain couldn't handle any more visiting...and I just needed a quiet place to wind down.  So we phoned Sandy and Sarah and apologized...and headed on home.  I'll have to try and remember in my future planning that I have alzheimers...and plan accordingly! LOL

We left Thursday, Sept. 7th for another adventure with 'Our Bonny Boler'.  We headed up to Jim's brother Doug's place near Ottawa, Ontario.  Doug is developing his property into a small private campground with 9 hole golf.  We were invited to stay at the 'Robin Wood Campground'....and enjoyed a lovely visit with Doug and son Brian.  Our son Ralph, with wife Lisa and kids Jacob and Kyra joined us for a delicious chicken dinner that evening.  They live about 20 minutes from Doug's.  We had a lovely campsite right beside Doug's man-made pond...complete with 4 decoy ducks...and had fun in the evening howling at the wolves under a huge Harvest Moon!  You can see pictures of the campground on the page called "Our Bonny Boler". 
On Friday we decided to head on over to the ThousandIsland area and find a campground overlooking the St. Lawrence River.  We found a lovely spot at the Ivy Lea Campground...with a fantastic view of the boats going up and down the river.  However, in order to have a view, we couldn't have services....such as water and hydro....so we enjoyed our view and had candlelight for our evening preparations.  Must do something about getting the battery hook-up on the little Boler....and a new water tank! he he  Jim did enjoy a bike ride on the bike path there....but I missed chats with no wireless connection. 
We arrived home safe and sound this morning after having found a Tim Horton's at Gananoque...and have started a list of things we definitely have to have working before our next trip. 
Mr. Alzheimer's poked his head up at the Ivy Lea Campground...in that Princess and I got lost....and wandered around for some time...waiting to be rescued by Jim on his bike!  No big deal...but I've learned I'll wait to have Jim with me, instead of exploring on my own.

Just came back from our 'maiden voyage' with our Bonny Boler!  We went to AdolphustownPark....which is about one hour from here....across the ferry.  Had a lovely waterfront spot...with hydro.  (See a photo on Our Bonny Boler page).  There was no water hook up....just a hose to fill the holding tank....and we don't have one yet.  So that's our next purchase.  So we had to use a water bottle we had taken along...which isn't terribly convenient. 

Now we're busy getting ready for the remnants of Hurricane Ernesto....expecting NE galeforce winds...and high waves. North east winds here mean damaging waves....so everyone is busy pulling their docks in. 

Just put a loaf of bread in the breadmaker....doing just fine until the last cup of flour...which ended up in the sink instead of the breadpan....again!  Can't imagine what happens to my brain that this happens.  Oh well....at least I didn't pour it into the bread machine.....like I did the cup of water one day! he he

My goodness...I can't believe how long it's been since I've updated my journal! 

August 20th.....our Birthday Bash.  Ralph was my birthday present when I turned 30....and we've celebrated as a family ever since (except for one year!)  We had a great time at Dave's house....Ralph and family, Sandy and family...with Dave's family.....and a phone call from Gene...and a later call from Lane.

As usual the boys spoiled their Mom.....two folding camp chairs for our new little trailer, a Chill Mat for my laptop, some more Avon Amari (my special fragrance for the last ten years), some added pages and photos for my website, a terrarium, and three pieces of silicon bakeware.

Now, I must tell you about this silicon bakeware!  The loafpan worked beautifully in the microwave....producing a delicious meatloaf.  The muffin tins worked marvelously in the toaster oven.  BUT.....even though it says, you don't need to grease the pan......I think next time I will use my PAM.  You're supposed to be able to press the bottom of the muffin cup and the muffin will POP out!   Well, the top half of the muffin popped out....but I had to use a spoon to scrape the bottom half out.  I have a package of brownie mix to try in the cake pan....and I will be using PAM! LOL

We took Our Bonny Boler for a trial run this morning....down to PrinceEdwardPoint (10 miles away).  We had thought of having a nice little nap....but the waves were crashing so loudly on the rocks....a snooze was impossible.  So we moved down the point to the inlet and harbour where it was lovely and peaceful.  We're very pleased with our little trailer, and will carry on with our renovations as the mood hits us! 

I've had a couple of rough weeks emotionally...and we've decided I don't need the extra stress of being co-moderator at the upcoming Changing Melody Forum, or on the Americas Committee of DASNI....so I've backed off from both of these, and am trying to get myself back on an even keel, so to speak.  I'm still a Director on the DASNI Board and a Director on the Alzheimer Society Board...and that should keep me out of mischief.

I had mentioned previously that I had applied to be in involved in the Neuroimaging Research Study at SunnybrookeWomensHospital in Toronto.  I now have an appointment to see Dr. Black  on September 26th, 2006 for more interviews and testing to confirm my diagnosis, and to see if I'm a good candidate for the neuroimaging study.  I am most impressed with Dr. Black's bio:


Appointments and Affiliations:

• Senior scientist, clinical integrative biology, SRI
• Co-director, Sunnybrook site, Heart and Stroke Foundation Centre for Stroke Recovery
• Head, neurology, SHSC
• Director, cognitive neurology unit, SHSC
• Consultant neurologist, SHSC
• Medical director, northeast Toronto GTA, Regional Stroke Centre
• Senior scientist, Rotman Research Institute, Baycrest
• Professor, Medicine (Neurology), University of Toronto

Research Focus: Dementia, Alzheimer's disease, stroke recovery

Research Summary

Dr. Black has had continual peer-reviewed funding since 1986. Her research has focused on the cognitive sequelae of stroke and stroke recovery, the differential diagnosis of dementia, and the use of neuroimaging techniques to elucidate brain-behaviour relationships in stroke and dementia.

Now, with funding from the Canadian Institutes of Health Research, the Alzheimer Society of Canada and the Alzheimer Association of the United States, she is conducting a prospective study on the utility of quantitative structural and functional imaging in diagnosis and monitoring of mild cognitive impairment, Alzheimer's disease, vascular and other dementias, and on the interactions of Alzheimer's and cerebrovascular disease.

She is also doing collaborative research on sensorimotor recovery after stroke using functional magnetic resonance imaging (fMRI) and on praxis and attention in stroke and dementia. She is the principal investigator of a clinical trial on the efficacy of amphetamine with physiotherapy to facilitate motor recovery after stroke, and uses fMRI to monitor brain reorganization. She has over 150 publications and has been actively engaged in treatment trials for stroke, Alzheimer's disease and vascular dementia.

Very exciting ....and I'm looking forward to Sept. 26th!

We just brought home our new toy....a 1978 13 foot BOLER.  Isn't it just too cute?  We have major clean up to do inside....as the roof vent blew off sometime over the past six years when it was sitting in someone's field.....so mold and mildew throughout!  This should keep us busy for some time
Figure it will be a nice 'spare bedroom' when people come to visit....and eventually we might even do some down south travelling when Jim retires next year! 

This is a picture of our friend's float plane.  Muriel and Paul Thompson (Thompson's Air Service) come to our campground every couple of years to take people up for rides.  This was the year!!!  Muriel, who is still working as secretary at the Probation & Parole Office, comes and sits on my deck for the day...and we get caught up on all the latest news. This year it coincided with the arrival of my sister June and her husband Nick from Guelph....they stayed here in their motorhome for 4 days.  My brother Dave and wife Margaret also arrived Sunday for the day, from Ottawa.  We had a lovely visit... Dave, Margaret and Nick had a fantastic ride over the County....and got lots of beautiful pictures.  June got to enjoy a kayak ride with Jim...and even availed herself of his Taxi service....when your arms get tired of paddling, Jim hooks a line onto your kayak and tows you home!  He is good! LOL  Sunday happened to be the day that Pat and Dayton Johnson (the owners of our campground) put on their annual Spaghetti Dinner....so we were all fed royally....and all in all, it was a fantastic day!  I have posted pictures of Muriel, Dave and Margaret on The Whole Family photo page so you can meet them!

I've had two really rough days....my brain was completely confused and it felt like pre-medication days.  When baking bread I measured the flour and poured it into the sink instead of the bread pan....I cried one minute and laughed uproariously the next.  When I walked the dog I felt like I was going to topple over.  It was very scary.....I couldn't imagine what was happening to me.  I'm really hoping we've discovered what was causing this change.  The air conditioner was running non-stop for two days.  We turned the air conditioner off last evening....and this morning my head is fine again.  We'll have to keep experimenting, but I really think this may be it.  The next time the heat and humidity become unbearable, I think we'll use the air conditioner and I can wear ear plugs....see if that makes a difference.  So things are back to normal in LaLaLand! he he
 

I'm in week three of Ebixa (namenda in the States).  This week is supposed to be 1 pill in the morning and 1/2 pill at night.  Somewhere between last Saturday when this started, and mid week, I discovered I had reverted back to week two of 1/2 pill morning and 1/2 pill nightly.  And one night I took a full pill, instead of half...thinking I was already into the next stage.  Now, I'm wondering how many people with alzheimers are struggling with their medications like this?  I may have to write a letter to Ebixa pointing out to them the flaw in the design of their packaging.  Oh well, tomorrow is straight forward...one pill morning and one evening.....how could I possibly screw that up? he he

Jim and I had a Director's Meeting last evening with the Alzheimer Society....interesting meeting....and great food! 

Getting ready for my sister June and her sweetie Nick who are coming for a few days in their motorhome from Guelph, Ontario.  Jim shampooed the carpets yesterday, and I've got bread baking...and making my shopping list.  I am so mad at myself that I can't remember the ingredients for a simply delicious bean dip that son Gene made when here from Vancouver a few weeks ago.  I've sent a HELP email out to the kids to help me remember....see if anyone responds! he he

 

Now that I'm in week two of Ebixa (namenda), I take half a pill in the morning and half a pill at night.  I've had no problems remembering my morning pills, as I prepare a month of pills at a time including all my vitamins, putting them in the pill sleeves.  But remembering all of a sudden, that there's something to take at night as well is going to be a problem.  I mentioned to Jim that I need some kind of alarm clock to remind me....and voila.....sitting in the bottom bar of my laptop is a little clock....with alarms!  Jim has the alarm set to go off morning and night...to remind me it's pill time.  A little box pops up...which says "Pill Time", and as well an alarm sounds.....and you have to click on it to get it to stop.  It also lets me enter dates and times of my various meetings....so I'm all set.

The website to download this freebie is:

http://www.download.com/nthClock/3000-2350_4-10548081.html?tag=lst-0-6

My brother Dave's daughter, Alyssa, emailed me a lovely letter, and passed along a website with some brain exercises.  You might enjoy checking out this page.

http://www.setgame.com/set/index.html

I don't do well on the Sets, but Quiddler is quite fun.

Good luck!

As you all know, we live six months of the year in a 40 foot trailer at SouthBay, on LakeOntario.  Most of you have probably experienced a thunderstorm and torrential downpour .... and know how extremely loud that is in a trailer!  That in itself is an experience!!  Well, add to that the fact that you have alzheimers.....it then becomes a catastrophic event!

Jim was in Picton doing his cleaning jobs Sunday evening when our little part of the world seemed to explode.  The thunder and lightning was so continuous I couldn't even do my "1001, 1002" counting to see how far away it was!  Of course, having been taught well over the years, I knew I had to unplug everything in case of a lightning strike.  I got the toaster oven, water cooler and microwave unplugged fine, but the tv, satellite dish and big computer are plugged into power backups....and in my confused state, couldn't remember what to do with those!  (and I forgot to unplug the cordless phone).  So Jim has printed out and hung a large notice.. "THUNDERSTORM INSTRUCTIONS" for my personal use! he he  

Oh, and I discovered another symptom of alzheimers....I laugh almost uncontrollably when under extreme stress.....so the dog, cats and I had a really fun time!  

AND GENE FLEW INTO MY CUCKOO'S NEST....
Gene arrived from Vancouver for the weekend....and we spent a lovely day at David's yesterday, with Gene, David, Sandy & Ralph and their respective families, minus Gene's of course...as the cost of flying the whole family out here would have been unreal!  It was so good to see Gene again...only wish Lane could have joined us also from BC.

Today the sons are all in a golf tournament...and the girls and kids are spending time at the beach.

We'll see Gene again sometime tomorrow and Tuesday, before he flies back to Vancouver...to get on with his house building!  You can view his ongoing project at www.simplesite.com/construction-site

I slept off and on for six hours after our visit yesterday to get my brain back into functioning mode.....but yesterday was Day One of Ebixa (namenda) .....so a couple of more months before I'm back to almost normal....I HOPE!

I am very happy to say I am being considered for the following research:

Alzheimer's Disease Neuroimaging Initiative or ADNI is being conducted

and funded by a branch of the National Institute of Health in the USA.

Dr. Black has been asked to participate as one of a few Canadian

investigators. This study follows participants with AD, MCI and no

memory loss over a period of 2-3 years at 6 month intervals.

Participants are assessed with paper and pencil tests of cognition,

various scans and other lab tests to assess biological changes over

time. Participants are allowed to stay on the standard medications for

AD.

I will be contacted in a few weeks to set up a screening appointment in

Toronto for this study.

I am delighted to think my brain will be used for research, while I am still

using it! LOL

HAPPY CANADA DAY!

We're planning a quiet day here at our summer home, watching the activities of everyone here at the campground.  Three new trailers pulled in yesterday, two of them seasonal.  Jim was out and welcomed all the newbies!

Ralph, our son from Ottawa, and his kidlings, Jacob (5) and Kyra (2) were here for the afternoon.  Ralph upgraded my anti-virus and did a clean up on my laptop, while Jim and I entertained the little ones.  Of course my camera forgot to make it's appearance, so no pictures!  They then left to spend the night at son Dave's (40 minutes away) .

Really can hardly wait to start my Ebixa next week.  Just three hours with our little family, and my brain went into shut down mode and I sat rooted to my chair for the rest of the day!  Oh well, better days ahead for sure!

Mark your calendars! The Murray Alzheimer Research and Education Program (MAREP) has partnered for a third year with the Alzheimer Society of Canada, the Alzheimer Society of Ontario and the Dementia Advocacy Support Network International to host A Changing Melody Forum. The forum, which will be held November 5, 2006 at the WestinHarbourCastle in Toronto, Ontario, will run in conjunction with the 28^th Alzheimer Society of Canada National Conference November 6^th to 8^th.

Building on the success of 2004 and 2005, A Changing Melody will once again provide a positive environment for persons with early stage dementia and their partners in care. The forum will encourage people to learn from one another, as well as dementia care experts, about how to actively improve their quality of life. With a theme of "Fight to Win," this unique event will focus on enhancing one’s learning and abilities.

The forum opens at 9:30 a.m. with keynote speakers Brenda Hounam and Elaine Smith, two remarkable women with dementia. Brenda and Elaine will share their insights and coping strategies, as well as provide advice on how to fight together to win. From there, the day will be a blend of guest speakers, panel discussions, question and answer periods and networking sessions.

Topics to be covered include:

empowering people with knowledge

enhancing abilities through meaningful activities

rising above misconceptions.

Conference participants and presenters are also being asked to bring something that symbolizes a meaningful activity to them, such as photography or knitting. These items will then be showcased throughout the day for everyone to enjoy.

Brochures with full program details and registration forms will be available in July by contacting MAREP, or in downloadable PDF from the MAREP website (

www.marep.uwaterloo.ca ). Online registration will also begin in late July on the MAREP website. For more information about A Changing Melody, contact Lisa Loiselle at 519-888-4567, Ext. 5040.

A videotaped copy of "A Changing Melody 2005: Taking Control of Our Lives" is now available in DVD and VHS format. For more information or to order your copy, please visit the MAREP website. Copies will also be available for purchase at this year’s forum.

We went to lunch yesterday with some friends at the Picton Harbour Inn....one being our old neighbour Jane, who we helped move to Kars, Ontario back in October.  It was great visiting with them.  I was trying to describe what it's like having alzheimers......and told them it was like being really drunk.  Funny...they seemed to understand....the brain doesn't work well....and you have to really concentrate with everything you do and say, but you have it most of the time!  I'll have to remember that analogy! 

I was hoping to start back volunteering at the Hospital Auxillary's Second Time Around Shop, but after having lunch with our friends, realized I'm not ready to do that yet.  Just an hour of being with a group of people in a busy environment left my brain quite boggled, so I'll wait until I'm on my new medication, Ebixa, before I try volunteering again. 

Tracy Mobley has started a new online group just for persons with dementia. 
http://health.groups.yahoo.com/group/dementiarescueearlyonset
It is an offshoot of her original group Dementia Rescue, which is for persons with dementia and caregivers.  Most of the people who post there are caregivers. 

Well, that was a rather busy week.  On Tuesday Jim and I attended the Alzheimer Society Annual General Meeting, where Jim and I were elected Directors and Jim was nominated also as the new Treasurer.  A very exciting evening. 

Yesterday, I attended my first teleconference meeting with the Planning Committee  of the Changing Melody Forum to be held in Toronto November 5th of this year.  That was an interesting experience...had never done teleconferencing before!  I think there was a total of 14 of us in attendance.

Doesn't look like anything planned for awhile...just the two daily chats with my friends from DASNI ...at www.alzinfo.org

Hugs!

HAPPY FATHER'S DAY

I woke up this morning with very sore legs, and renewed determination to prove to Dr. Garcia the link between alzheimer's and peripheral neuropathy.  The whole night consisted of tiny muscles on my legs, contracting and twitching.  I massaged, cooled, heated...all to no avail. 

I also remembered the times over the years that doctors "pooh poohed" me!  One of our sons was born on a guerney in the hallway, my former husband died of complications from surgery, and I just about died from penicilllin reaction....all because doctors wouldn't listen to me!  So this time a doctor is going to listen to me.....how many other alzheimer patients are suffering needlessly because the doctor has pooh poohed them!

So I'm heading off, with twitching muscles, to continue my research!

What a gorgeous Saturday...supposed to get up to 84F!
I wanted to thank Adam Lyttle for signing our guest book.  Adam has developed two websites....Sudoku Craving and Solitaire Craving... and I get an email daily from each site that there is a new one posted, for my playing pleasure!  His sites help to keep my brain exercised...and it's working well! LOL  Check them out at:

http://www.sudokucraving.com
http://www.solitairecraving.com

I've been on the full dose of Aricept now for over a week...and so far have experienced only one day of nausea.  Other people have mentioned how much weight they lost during the start up of aricept from the nausea.  My problem is when I get nauseated, I eat, to see if it clears it up! LOL  So I won't be able to proclaim any dramatic weight loss! he he

Daughter in law Lisa Yelland had emailed me about a new drug called INOSITOL (pronounced I Knows It All - very appropriate I thought).  This drug has been developed and is being tested in Toronto, and the company hopes to have it on the market in 3 years.  It apparently is a type of sugar, and stops alzheimers in its tracks, and even reverses some of the damage.  They're only testing on health individuals without alzheimers, so lovely Lisa has emailed them volunteering to be a candidate for  the testing.  YEH LISA!!! 

Wanted to pass on congratulations and big hugs to granddaughter, Jamie-Lynn, who just had her graduation from high school in Vancouver.  Uncle Lane said she did an excellent job singing  O' Canada.....and won a prize for being top of the class in Music.  You can see a picture of our beautiful granddaughter below on the Baker Family page.  Great job Jamie-Lynn.  Sure do love you!

We went to Toronto (2 1/2 hrs away) yesterday to visit Jim's folks.  Jim installed the bird feeder that our son Lane had made for his Grandpa about 8 years ago.  Jim replaced the floorboard and did some repainting.  It's a lovely log house bird feeder...which the birds flock to....along with some determined squirrels who shimmy up the steel pole!

I found the visit not quite as tiring as pre-aricept...which is a really good sign!  And since I've just started the full dose of aricept I expect better results as time goes on.   Still having a problem with having to run to the washroom every half hour....however, I'm expecting anyday for that to stop! 

Hosted chat last night and again this afternoon, and will host tonight as Shirl (AUS) is offline during her move.  Hope you'll join us in chat at:
www.alzinfo.org.

OH MY....has Jim lost his marbles....standing in the doorway of the trailer in his jammies at 7 in the morning? 

Nope...he's shooting marbles from his slingshot at a gaggle of Canada Geese down front at the docks.  He's not a terribly good shot, so none of them were in any mortal danger....but my, they do leave a terrible mess behind them if you don't discourage them! 

Had my visit with Dr. Garcia yesterday.  She was interested to hear others are being helped by taking both aricept and namenda (Ebixa in Canada), and actually gave me a three month supply to try.  I have to wait another month before starting them, as she wants me on the full dosage of aricept for a month first.  I mentioned my peripheral neuropathy, and she just said forget about it.  LynnJ in Vancouver is waiting for some research paperwork from her doctor, linking alzheimer's with peripheral neuropathy, which I will in turn pass on to Dr. Garcia.  Have to keep our doctors educated.

Another major thing Dr. Garcia said...she wants me to lose weight and start exercising!  I'm to walk 1/2 hour both morning and night, which I have started.  Five trips around the campground at a quick pace works out to 1/2 hour (as long as Princess doesn't stop to sniff too often!)  I told her I help Jim cut five lawns a week...she said that isn't exercise!  Yikes!  Tell my aching hips that one!!!

I'm starting a daily journal of everything I put in my mouth...to see where I can cut back!  Jim is going to bring our weigh scale from the winter home to weigh all my food.  I probably just eat bigger portions than I should.  I don't snack between meals, and hardly ever eat anything with sugar.  Oh well, the story of my life....LOSE WEIGHT!  Funny how it's always a skinny doctor that tells me this! he he

Jim and I spent 2 1/2 hours yesterday participating in the Alzheimer's Tag Day in Picton.  We were stationed at NoFrills...and had a lovely spot, out of the rain.  There was even a patio table and chair set sitting there, that we were able to use.  Decided not to buy the patio set though! he he

Warmly greeted everyone as they came to shop...and people were very generous.

I've noticed over the past few months extreme weakness in my upper arms and legs.  In fact, when I'm cutting grass, I have to use my body to push the lawn mower to get it rolling.  And I can't get out of my chair without pushing up with my arms.  Another big problem is the pain when I'm trying to get to sleep....my fingers and toes hurt if they are touching the bed or the blankets.  And I have ongoing muscle spasms - both day and night, and twitching!  After talking with other friends with alzheimers, it seems that peripheral neuropathy is a common disease that accompanys alzheimers. 

I did a search on peripheral neuropathy....
"Pain receptors in the skin can also become oversensitized, so that people may feel severe pain (allodynia) from stimuli that are normally painless (for example, some may experience pain from bed sheets draped lightly over the body).  Muscle weakness is the most common symptom of motor nerve damage. Other symptoms may include painful cramps and fasciculations (uncontrolled muscle twitching visible under the skin)."

So I'll be mentioning this to Dr. Garcia on June 7th.  There is no cure for peripheral neuropathy, but there are some medications that help control the symptoms.

Well, I wonder if my Aricept is starting to work!  This was just like a day from my old life!

I mowed the lawn before it got too hot, did laundry, vacuumed, bathed the dog, baked bread, swept out the Chat Shack down front, and the deck there, and started organizing the furniture in the Chat Shack.  The Chat Shack is where a bunch of us get together Saturday afternoons to play music.  There is anywhere from 6 to 24 of us...and lots of fun!

Sure hope I don't pay for all this extra energy tomorrow!

June (my sweet (older) sister) and her husband Nick arrived from Guelph, Ontario last evening in  'Winnie', their 22 foot motorhome.  We had a lovely visit last evening, and even managed a lovely sunset for them.  I introduced June to my Chat world in our DASNI chat.  She was wishing there was such a chat for families dealing with Parkinsons, which Nick has had for eight years.  This morning I actually found such a chat for June, and she is now into the world of Yahoo and groups...and chat.  She even found a Yahoo group for owners of Rialta Winnebagos.  They left again this afternoon heading for Ottawa, to visit one of their two daughters and three of their five grandchildren. 

Jim and I have been asked if we could help out on Saturday, June 3 for the Alzheimer's Tag Day.  Another 'first' for us....should be interesting!  My New Adventure is certainly taking us down new paths of discovery and experiences!

I  have just been asked by Lisa Loisella, Associate Director of Research for the Murray Alzheimer Research and Education Program (MAREP) at the University of Waterloo to join the Planning Committe for the upcoming A CHANGING MELODY FORUM.  This will be the third year this forum for people with dementia and their care partners has been presented in Toronto, Ontario.  Alzheimer's Canada, Alzheimer's Ontario and DASNI are partners in this project, and I am very excited to be involved.

The website to check this out is:
 http://www.marep.uwaterloo.ca/

I wanted to introduce you to my new doctor at St. Mary's of the LakeHospital, in Kingston, Ontario

Dr  Angeles Garcia. M.D., PhD., FRCPC (C)

Dr Garcia is an Assistant Professor in the Department of Medicine at Queen's University. She has completed specialist training in both Endocrinology and Geriatrics. She joined the Division of Geriatric Medicine at Queen's and the SERGP in August 1997. Her main clinical area of activity is in the Geriatric Outreach Assessment Team and Geriatric Medicine Clinics.

Dr Garcia has a major commitment to research. She currently holds three grants to conduct research into the role of "Subclinical Vitamin B12 Deficiency and Cognitive function in the Elderly."  She has published extensively on the topics of thyroid disease, calcitonin and thyroid cancer.

My goodness...so much news...where to start.  I got a call on May 9th from Dr. Garcia's office at St. Mary's of the LakeHospital in Kingston, that they had a cancellation on May 10th and would I be able to attend.  My heart flipflopped for sure.  So bright and early on May 10th we headed to Kingston....stopped at Kingston's China Buffet for a scrumptious meal, then on to St. Mary's of the Lake.  It is a lovely hospital with lots of activity.  Our first hour and forty five minutes were spent being interviewed by a young doctor (who's name escapes me).  He is spending a month working with Dr. Garcia before he goes to Vancouver to spend a year studying geriatrics.  We were left then for half an hour, while he conferred with Dr. Garcia.  Then she arrived, and we spent another half hour with her.  Her final diagnosis was Early Onset Alzheimers.  She said she was baffled at first because I am so aware of my condition, which is unusual with alzheimers.  So I have now begun taking the medication Aricept, which is designed to slow down the degeneration of the brain.  And she wants to see me again in two weeks.

My other great news...I was asked by Linda Jackson, Executive Director, Alzheimer's Society of Prince Edward County, if I would consider being a Director on the Board of Directors.  I didn't have to consider this for more than two seconds, I'm sure, as we feel it is so important to have people with early stage on these Boards.  Jim is also going to be a Director (cause he has to drive me to the meetings anyways), and he is an excellent Director on Boards, as we discovered when he was Director on the condo Board.  The Annual General Meeting is June 20th, and they have meetings every month.  This should be very interesting.

So....that's all my new for this posting.  We are enjoying a beautiful day at our summer trailer....had 1 1/2 inches of rain overnight...so the grass is taking off again.

http://www.enablelink.org/include/disability_organization.php?pid=&cid=&subid=&aid=1423&atype=

Jim kayaking last year....more pictures to come this year!

My goodness...I can't believe it's almost a month since I posted. We moved down to our summer home early this year.....April 20th to be exact. The weather was too beautiful not to take Dayton, the owner of the campground, up on his offer to move here early. Of course, once we got everything moved in and nicely set up, the weather changed. We had a week of rain and cold! In between the rain, Jim got out kayaking four times so far. I'm waiting for the warmer stuff!

Today was one of those beautiful days we were waiting for. In fact we sat by the campfire tonight, enjoying the sunset over the water. The trees are just starting to bud, and it won't be long before they're in their full glory.

I was nominated as Chat Moderator with DASNI. I decided to involve a few most DASNI members as Chat Hosts this year. Diane (whose blog I have a link to) and Bill have both hosted their first chats, and were excellent. I have another two scheduled to start in another week or two.

My friend Mary from Oklahoma left on her trip to Vancouver yesterday to meet up with some other DASNI friends. This was the trip I was hoping to go on to join them. Oh well, another year, I'm sure. Sure hope Mary and husband Dave are having a great time!

# posted by Mary : 5:19 PM  1 comments 

Only 25 more sleeps 'till we move to the summer trailer! This picture was taken last summer....showing off some of Jim's beautiful garden.

We had our first DASNI Board of Director's meeting last night. I have been appointed Secretary. The meeting takes place at our online chat. I figured a neat way to take minutes.....I have the chat on the big computer, and type minutes on my laptop which is sitting beside the big computer. Seemed to work well!

Don't forget you're more than welcome to come and meet a great bunch of people, some with dementia, others carepartners, and others just interested people. The website is: http://www.alzinfo.org/community/chatrooms/

# posted by Mary : 2:50 PM  0 comments 

Only 34 sleeps and the campground opens. We'll move there for the summer as soon as the nights stay above 40F.

Here's a picture of Johnson's Marina & RVPark. Our forty foot trailer sits on the front row, overlooking SouthBay, which is part of LakeOntario.


We went to see the sleep dr. to get the results from my sleep apnea test. I registered 4.5 stop breathing incidents per minute...which is borderline sleep apnea. However I only slept 3 hours...which is not long enough to get an accurate reading. So I go again in May for another sleep test.

Also got new glasses on the weekend. The optometrist lowered the prescription. I can still see just fine, but no longer have the sensitivity to light! Amazing!

# posted by Mary : 6:37 AM  0 comments 

I am so excited....I was elected to the Board of Directors of DASNI. I sure hope I can be of some assistance in achieving the goals of DASNI. I would love everyone to check out the DASNI website.... www.dasninternational.org

Jim also became a member of DASNI today. My association with DASNI has helped Jim and me so much in learning about and dealing with my dementia and we hope to spread the word to as many as we can.

# posted by Mary : 3:25 PM  0 comments 

HAPPY ST. PATRICK'S DAY
We went to Belleville today to pick up another CD with my CAT scan on it, as the other one had a flaw on it. While in Belleville Jim picked up a new mop and pail with wringer for his cleaning jobs, then took me to the Chinese Buffet! So good!

So the report on the CAT scan is:
"There are prominent bifrontal extra-axial CSF spaces most likely reflecting frontal lobe atrophy, rather than chronic hygroma: the degree of atrophy is somewhat unusual in this age group. There is no hydrocephalus or mass."

There are also 29 images of my brain. It took awhile but Jim finally figured out how to view all the images. Of course we're not sure what we're seeing, but think we've figured out where the atrophy is on the frontal lobe. Still doing research to find some normal images to compare with. Interesting stuff!

# posted by Mary : 4:10 PM  1 comments 

Had my three month check-up with our family doctor this morning. He wanted an update as to how I'm progressing/degressing since December. He copiously wrote notes as I related the various symptoms to date. He mentioned he could give me medications to address some of the confusion/anxiety problems, but he is really hesitant to do so, as he really isn't sure what my problem is....alzheimers, one of the dementias, or something else?!!? He did give us permission to view the CD of my CAT scan that we had to pick up from the xray department to take to the specialist. He is of the opinion that his patients have the right to view any and all information concerning them. So we popped the CD into the computer as soon as we got home....and nothing! It is completely blank! So tomorrow it's back to Belleville to get another CD of my CAT scan. I can't believe we might have taken this blank CD to the specialist...whenever that appointment arrives! And so life goes on! Oh yes...he is most impressed that I haven't lost my sense of humour! I'm sure that's due to DASNI!!!

WHAT IS NORMAL FOR ME AT THIS POINT IN TIME

It’s totally foggy in my head, and everything takes a lot of effort and concentration. I’m OK as long as I am really trying hard and not at all tired. The disease affects my daily functioning. Even when I’m trying to concentrate ...pouring water into the bread machine instead of the bread pan, putting the veggies into the bottom of the steamer instead of the steaming basket, spooning the vegetables out of the steamer onto the lid instead of my plate, dumping the powdered coffee whitener into my mug of coffee instead of into the container I was trying to fill, and the list goes on.

After visiting with family when I might seem normal and mentally focused, after I leave I am totally exhausted, only able to utter single words, and completely wrung out. It may take a night’s sleep to get over it....after tossing and turning for a couple of hours before my brain shuts down.

I find that my peripheral vision shrinks if I‘m in a busy place. It’s as if my brain limits the number of sights and sounds it can cope with. So I can’t see what’s going on around me...it’s as if I have blinkers on. I call it my tunnel vision.

A noisy environment seems to reverberate in my head, and it just gets too confusing for my brain to be able to make any sense from what I hear. I feel disconnected from the world around me. Jim can tell from my ‘blank stare’ that it’s time to get me into a quiet spot.

I find it really difficult to carry on a conversation with people. Trying to concentrate on what they’re saying, and making the right responses leaves me mentally exhausted.

# posted by Mary : 11:20 AM  0 comments 

Jim was diagnosed with sleep apnea and requires a CPAP machine. During our research of sleep apnea we discovered a number of articles referring to sleep apnea and dementia. One article that sticks in my mind is about an elderly gentleman in England with frontal lobe dementia....(frontal lobe shrinkage with symptoms of confusion and anxiety). He was admitted to hospital with bronchitis, and while there the doctor picked up on the wife's mention of his snoring. A sleep test was ordered, and he indeed had sleep apnea. After three months of using the CPAP machine his confusion and anxiety disappeared. So we immediately had our doctor refer me for a sleep test, which was scheduled for March 5th. We received a phone call last night at 9:30 that they had some cancellations and would we be able to go in last night, me for my sleep test, and Jim for his second sleep using a CPAP machine.
Now the wait......to see if indeed I have sleep apnea...and if I do, if the CPAP gets rid of my confusion and anxiety! It will be about 3 weeks before I hear from the sleep specialist doctor to set up an appointment to see him, and then, if I have sleep apnea, another few weeks after that before I would go for the second sleep with the machine.
The story of my life....WAIT....and I'm a terrible waiter!

We went to our son Dave's for brunch today. He lives about 1/2 hour from us. Our son Ralph and family were also there from Ottawa. Dave and Cindy bought an 8-bedroom farm house, which David is slowly renovating, so this is the meeting place when any of our sons come to visit.
I felt nauseated all morning, and figure this was still from overdoing it on Saturday. Had a nice visit with the kids and grandkids....then home in time to host Chat.
Then back to bed for another snooze! Wow...can't believe how tired I get doing anything!
Another DASNI member has a new website... http://www.christinebryden.com/
I have read one of Christine's books....an amazing book, which describes exactly what I'm going through. I'm still trying to obtain a copy of Dancing With Dementia, which I hear from friends is even better than the first one!

What a lovely day....we drove to Bowmanville for breakfast at our son Sandy's. Sarah made some lovely muffins...and we enjoyed seeing Hunter and Kennedy, on Kennedy's first birthday. Then continued on our way to Toronto to Jim's parents. His sister Carly, and my sister June and her hubby Nick, also joined us there. We had a great visit with them all...even exchanged a few xmas gifts, since we hadn't seen my sister since October. They live in Guelph, about an hour out of Toronto.
It was a beautiful sunny day...which of course didn't help my sensitive eyes! I wore my sunglasses all day...in and out of the house!
By the time we got home at 4 in the afternoon my head felt like it would burst with the pressure inside. My conversation was non-existant...I could only manage a yes or no! I went directly to bed! After an hour's sleep, the pressure had gone, and I continued to enjoy the rest of the day. We watched some Olympic events, and I went to the 9:00 chat to visit with my friends.
I have a feeling we won't be doing this trip as often as we'd like to at this point. Maybe when I finally see the specialist in August, and get some medication, things will look up!

I've been having terrible headaches for two weeks. I finally discovered that if I wore sunglasses in the house, as well as outside, I don't get the headaches. The family doctor sent me to an eye specialist in Trenton. The outcome.....my eyes are in perfect shape. He said there's a neurological problem (something wrong with my brain! he he) and to make sure I tell my neurologist when I go to see him.

The local papers did a great job of covering the Memory Walk. Unfortunately, I can't copy the text into my blog, but Lynn Jackson is going to put it on the DASNI page under Members in the News. The website is: http://www.dasninternational.org/ if you want to read it. There was also a great picture of Princess (our Bichon) and me, but that page wasn't on the internet site, so I couldn't copy it.

I spent the morning researching our local Library website. Found the audiobook LOSING MY MIND by Thomas DeBaggio, as well as the book SHOW ME THE WAY TO GO HOME by Larry Rose are available at other libraries in Ontario, and have requested our library to obtain them for me. I am really excited. I also checked with our local CNIB to see if I would be able to obtain audiobooks through them, but it seems I have to be visually impaired to utilize their services. It doesn't seem to matter that I'm 'brain impaired'!

I also spoke with the Facilitator at our local Alzheimer's Society. There are two other EOAD women in our area and he's going to see if he can't arrange for us to all meet. That would be so great!

The Alzheimer Memory Walk was a great experience. There were only about a dozen of us there, but between us we raised over $3600. Not bad for the little Town of Picton (population 4000). We just walked the hallways of the local highschool...but it was a lovely day outside, and we scooted out now and then for a breath of fresh air. Princess (our Bichon) was even allowed to join us on our walk. My total pledges amounted to $828.00 and my thanks go out to all who supported me! I was actually interviewed by the three local newspapers, and my picture will appear this week in the three papers! There were two people who had higher pledges than myself, but the papers were interested in interviewing a newly diagnozed YOUNGer person. I emphasized the fact that the general population thinks alzheimers is an old person's disease, and we need to get them to realize that more and more young people are being diagnosed with various forms of alzheimers.

By the time we got home my head felt like mush, and I feel completely exhausted! Had a quick snooze to try and get it together for our chat tonight at www.alzinfo.org.

All in all....a great day!

I've just registered for the Memory Walk to raise money for alzheimer's research. I've emailed a sponsor sheet out to 35 friends and family. Wouldn't it be great if they could discover a cure for this terrible disease that is affecting the lives of millions of us!
The website to donate money is: https://secure.e2rm.com/registrant/LoginRegister.aspx?EventID=4158&LangPref=en-CA

If you would like to sponsor me, just type Mary McKinlay in at the bottom right of the page, where it says SPONSOR.

In Picton the walk is taking place at the local highschool on January 28th from 1pm till 3pm. You're welcome to come join us!

Jim and I went grocery shopping Saturday....I haven't done that for a few weeks, and probably won't do it again anytime soon! Something happens to the old brain when I get in a store....it goes into "fast, fast, faster" mode, and we end up practically running through the store. At one point we encountered an old neighbour, and stood chatting for a couple of minutes, but my "brain" just wanted to get out of there, and we made a hasty departure. We must look so funny with me frantically pushing the cart, with Jim hanging on for dear life! Guess I'll just let Jim do the shopping from now on. Too bad, shopping used to be one of the highlights of my day!
Still researching everything I can find. Haven't come across an explanation for the pressure I feel on top of my head, or the terrible leg cramps. My symptoms are still pointing to Frontal Temporal Degeneration.
Really enjoying my chats with other suffers twice daily at http://www.alzinfo.org
Making lots of new friends there and getting new insight into this terrible disease.

SYMPTOMS - starting about 4 years ago to varying degrees:
- confusion
... when trying to concentrate ..eg..financial tasks, meal preparation, driving, reading
... when noise is present
... when a number of people are present - shopping, visiting relatives
... confusion makes my head feel big and feel like my eyes are bugging out

- trouble concentrating on conversation in person or on phone
- lose train of thought when speaking - often mid-sentence
- a thought will pop into my head, but before I can verbalize it, it is gone

-balance problems lately

- several instances of aggression in public ... on airplane and grocery shopping - pushing my way through crowds to get where my brain wants me to go (very unlike me!)

- organizational skills seem to have deserted me about 2 years ago

- my brain won’t shut down at night...toss and turn for up to 2 hours

- argumentative.....I’m always right!

- light and noise sensitivity

- social withdrawal - don’t want to go anywhere I might have to talk to people

- loss of libido in 1999

I went to my family doctor in November of 2005 with various concerns regarding my inability to perform daily tasks properly. I told him my brain just wasn't working properly.  After numerous blood tests and a CAT scan, I was told in December I probably had ALZHEIMERS ....and what dread that brought to mind. He was referring me to a memory loss doctor in Kingston, Ontario ....with a waiting period of nine to ten months. I've since been able to get a referral to a neuologist at the Baycrest Brain Health Clinic in Toronto, and the waiting list to see him is only five to six months! The CAT scan showed abnormal frontal lobe shrinkage.