Be Your Own Advocate

http://memory.ucsf.edu/ftd/overview/ftd/treatment/multiple/medications-avoid


I am leading off today with a website that lists drugs that are not good for those with FTD. Notice this statement in the lead-off paragraph:

"Cholinesterase inhibitors, such as donepezil (Aricept®), rivastigmine (Exelon®) and galantamine (Razadyne®), are prescribed for people with Alzheimer's disease. They seem to work by helping people to improve attention and working memory by increasing the amount of acetylcholine, a chemical in the brain. Unfortunately most people with frontotemporal dementia do not benefit from these medications and may even become more agitated when they are tried. Generally, cholinesterase inhibitors are not recommended for patients diagnosed with FTD."

I continue to be amazed and frustrated each time I learn that someone with FTD has been prescribed these drugs. I am pretty sure this issue relates to the problem that even physicians have no idea what FTD is! They hear "dementia" and automatically assume it is Alzheimer's or that it should be treated in the same way. It downright frightens me that there are so many with FTD who are being misdiagnosed or improperly treated.

I know I have written before about my own experience with these drugs. I was prescribed Aricept (later changed to Razadine due to horrible nightmares) and Namenda. The cost of the Namenda alone, would put me in the "donut hole" by the month of March, which meant I had to pay out of pocket for the remaining nine months. I was going broke by taking a drug that was doing no good. I weaned myself off both of the drugs and was amazed at how clearer my mind was. I describe it as "less fuzzy." I would never suggest that anyone removed themselves from the drugs on their own the way I did. It should always be discussed with a physician first to safely wean off any drug. I am very fortunate that I did not encounter a problem on my own, it was pretty darned stupid of me. I know better!

Right now, I am taking a prescription drug to, hopefully, allow me to pass a kidney stone. I am experiencing an absolutely horrible constant headache. Writing this blog entry is the first productive thing I have done in the five days I have been taking the drug. I immediately tried to find any research about the drug being harmful to those with FTD, but could not find anything. I did find that a severe headache is a fairly common side effect of the drug in general.

I would have quickly discontinued taking the drug, except that the other alternative was surgical removal under full anesthesia. While I have not found any research to confirm a link, I have read of specific instances where the person with FTD or the caregiver, observed a decline after being given anesthesia.

If this medication doesn't help me pass the stone on my own, I will insist on a sit-down conversation with the anesthesiologist prior to the day of surgery. I am thinking there should be alternative means of anesthesia available, such as a spinal block. I would, of course, not refuse anesthesia if faced with no alternative.

The first part of this entry was triggered by hearing, yesterday, of yet another person with a definitive diagnosis of FTD, not Alzheimer's, who was prescribed the drugs.  The second part, at least with my recent experience, reminded me of how, when you have a diagnosis of FTD, you must work closely with all your doctors, not just your neurologist.

In my opinion, we, who have a diagnosis of FTD, and/or our caregivers have to self-educate ourselves. This means, not only to educate yourself on FTD, but to keep up-to-date on new findings. We must be our own advocate and not be afraid to ask questions from all physicians you encounter. Insist on answers, not accept that since they are doctors, they know everything about FTD or that they know more than you do.

We learned this lesson about 8 years ago when I was diagnosed with Hodgkin's Lymphoma. My husband became my advocate. He started keeping a binder of all medical reports, lab reports, medications etc. We avoided duplicate testing by the different doctors involved with my healthcare. He actually caught a severe deficiency that needed immediate attention. Ask questions!