I had volunteered for the Groundbreaking NIH-supported study expands, seeks new volunteers and felt really good about it. This project gave me a sense of meaning and purpose around the diagnosis. But the folks running it made a mistake.Actually, they've made a number of mistakes along the way, but up until today, no big deals.
They did not tell me (confirmed by my sister, who has been with me at each appointment) that I was NOT to start any new medications during the initial part of the study. They did not tell me to wait JUST 30 DAYS (which I would have gladly done). Both my sister and I heard them say I must report any changes in medications, but not that I wasn't to change or start any. YAAAAARRGGGHHH!!!
My neurologist (whom I trust) started me on generic Aricept two weeks ago. He believes early, aggressive use of this and Namenda MAY (maybe maybe maybe) slow down the progression.So I'm out of the study for now. I could begin the study again if I put off taking Namenda, and there's a chance I could start the study again later this year, but my son and I are going to Ireland to celebrate his birthday in October.
So here are the choices:
- Following my doctor's recommended medication schedule (which may, or may not, slow down the AD progression) and standing in the soft Irish rain with my son celebrating his birthday. Perhaps writing an article "Traveling with Cognitive Impairment -- So What If You End Up On the Wrong Train -- Ireland Will Love You Anyway"
- Not following my doctor's recommendations due to someone else mistake and participating in a study (for which I am only one of many volunteers) which may not even be relevant one year from now, considering other research that is underway.
Megan - you sound like a right bright bubbling bundle of fun energy - good luck wirh LMTX and please keep posting!
ReplyDeleteAll the very best!
S
Thank you S, and yes, life is definitely fun energy again now that I have great hope, I will keep the blog updated!
DeleteHi Megan,
Delete. . . this is to inspire you - a 2012 comment left by a caregiver, who's mother was on Tau Rx's drug REMBER. LMTX that you are on, is the new version of the drug, which the drug company Tau Rx believes works even better:
(1) Sudha says:
My 88 year old mother participated in the clinical trial of rember (LTMX)in Singapore around 2006 or so. As care givers we are so grateful to TauX for allowing her to be part of this amazing drug. As a result of it, her quality of life has increased tremendously. Where prior to the drug she was depressed, listless, uninterested in things she used to enjoy, like reading, cooking, now she takes an active interest in the family, gardens, she can even manage reading books on a kindle. She basically lives a fairly normal and independent life. In fact recently she was activey following the American Presidential elections on CNN and the newspapers – she is Obama’s number 1 fan (:). Her short-term recall is so much better than it used to be.She is still forgetful of course, but that is to be expected given that she is 88 years old after all but it is certainly not to the extext that it was prior to the drug. Her quality of life is so much richer as a result of this drug and for that we are forever grateful. Thank you TauX. For those out there who are consideriing putting your loved ones on the drug, I would say – Go for it- you really have nothing to lose and everything to gain- there are no side effects – at least not for my mother. At the end of the day what we want for the people we loved who are faced with this dreaded disease, is to live a full life with dignity. We took that chance with the clinincal trial and all of us in my family are extremely thankful that my mother has that – an independent life that she lives with dignity.
Keep us posted - and sending you positive thoughts!
S
Dear S,
DeleteThis is such a wonderful letter. I have great hope that my life is indeed before me!