In spite of the fact that the cost of black-market Dimebon is equal to more than one half of my income...I will probably end up purchasing it....
I’m the 24/7 caregiver for Charles. Charles received his Alzheimer's disease diagnosis late in 2005. He was enrolled in the Dimebon clinical trial and began the open label portion of the clinical trial in late February or early March of 2009.
Also see --
- The Dimebon Experience -- Sunshine's View
- The Dimebon Experience -- Marion's View
- The Dimebon Experience -- Patrice's View
In May of 2008 we attempted to enroll in the Bapineuzumab clinical trial. Charlie was rejected (probably because of poor veins and my qualms about having a port placed)...but...made it through the initial screening where he was given an MMSE and scored 21. In March of 2010 (after being on Dimebon for about a year) Charlie scored a 21 in their MMSE and scored as high as 26 in prior tests administered by them. If it is true that an average person with A/D loses 6 points a year...Charlie is obviously doing better than most.
There have been improvements in other areas.
For example: Conversation...Logic...and Empathy...an increase in his Initiative...even isolated improvement in Short Term memory which is nearly non-existent... and...a decrease in the Flatness of his Demeanor.
Here are some examples from the past week:
On recent visits to the club he has been more active in conversations and offered advice on a pool shot (He still plays a fairly good game). Even noticed that someone he enjoys the company of was in need of a beer and offered to buy them one.
In the last 4 years Charlie has developed an aversion to shaving and showering...but...This week he twice decided that is was a shave day and once opted to shower and wash his hair without any urging.
The area that we live in is going through a period of rapid growth. New buildings, traffic signals and roads springing up. Charlie constantly comments about the appearance of a red light that enables us to make a safe left turn and noticed that a right turn lane was added to the intersection. A new divided highway opened up in the last couple of months.
When I mentioned that I was confused about whether we should exit to the right or the left...He looked out the window at the buildings and was able to tell me the proper direction as well as tell me that after exiting I needed to make a right turn. I found this interesting since he basically has not driven for over a year and a half.
Charlie and I both have colds. He has remembered that I have one too...Often expresses concern...Noticed that we were running low on cough syrup and suggested that I take it instead of him and reminds me not to kiss him because my cold is so much worse than his. 4 years ago he forgot that I had surgery by the time that we arrived home.
Instead of remarking that he is out of juice or wants a cookie Charlie has started getting these things for himself as well as checking our inventory.
With the arrival of spring Charlie has religiously fed the birds and noticed that there was a bug in the hummingbird feeder. We both sit on opposite sides of the table and share entirely different views of the back deck. I instantly can tell if he is having a bad day by checking the bird food placement on the deck rail. On bad days the seed stops before I can see the birds feeding. This week was an exceptional week...We were both able to enjoy the birds.
The most obvious reason to continue to supply Dimebon to participants requesting it is that Medivation will have a longer and more complete safety and tolerabilitgy track record.
My reasons are selfish...Charlie has problems with many pills (including the 2 cholesterase inhibitors that we have tried and discontinued)...but tolerates and has appeared to thrive with Dimebon and suffered no significant loss in ADLs and remains as kind, loving, and easy to care for as every.
His vein problem will keep him from being accepted in any infusion study.
In spite of the fact that the cost of black-market Dimebon is equal to more than one-half of my income, I will probably end up purchasing it because I do not believe that there will be any single intervention or medication that will cure A/D...and...Dimebon seems to be what Charlie needs right now.
Editor note: I received this via email from a caregiver participant in the Pfizer (PFE) Medivation (MDVN) Dimebon clinical trials. I removed her name and the name of her husband intentionally.
More About the Alzheimer's Reading Room
- Test Your Self for Alzheimer's Dementia (5 Best Self Assessment Tests)
- Alzheimer's Disease Statistics
- What is Alzheimer's? What are the Eight Types of Dementia?
- Alzheimer's Dementia Caregiving -- Advice and Insight
- Does the Combination of Aricept and Namenda Help Slow the Rate of Decline in Alzheimer's Patients
- Communicating in Alzheimer's World
- Is it Really Alzheimer's or Something Else?
- 2010 Alzheimer's Disease Facts and Figures
- 60 Good Reasons to Subscribe to the Alzheimer's Reading Room
Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,400 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.
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