I went to my doctor appointment this week at the Tampa Byrd Alzheimers Institute. I love my doctor. She is very caring and very up to date on the latest studies, trials, etc. I am a very organized individual and always come to my doctors appointments with a lot of questions, and this appointment was no exception.
I told her how I was doing. We discussed the memory issues I have been having, how I am exercising as if my life depends on it, the different studies and trials that are underway etc. In my usual style, I asked her some very direct questions, and asked her for very direct answers. She was very empathetic but she gave me direct answers (that I didn’t want to hear but probably needed to). Here is what we discussed:
- I have a pacemaker with leads that is not MRI compatible (the pacemaker can be replaced with and MRI compatible one, but the leads cannot because no doctor will touch an Alzheimer’s patient), and had cancer a year ago. This precludes me from participating in any Alzheimer’s trials or studies, and she assumes any experimental medications going forward.
- In regards to the current studies/trials underway she said there is really nothing promising to look forward to other than the Biogen trial/drug that may go to FDA for approval. She said it is likely that if it does get FDA approval, it will take years to get to market and to determine the protocol of who to administer it to. She doubts someone with my medical complications will be a candidate.
- We discussed the funding that has been approved by the U.S. Government and Bill Gates donation and that looks promising. It probably will help others but not in time for me.
- She said my emphasis on diet and exercise will definitely help me, and that there have been a few studies done on how it may impact Alzheimer’s patients but she said there hasn’t been enough data to be conclusive. Of course she encouraged me to continue my focus on healthy living, but I shouldn’t get my hopes up.
- She recommended I spend my time doing things I enjoy and don’t put anything off. I have declined some in the last year and moved into a new Alzheimer’s stage, and she said I need to focus on accomplishment everything I want to accomplish while I still can.
- She said I have moved into a new stage, and that I can add the Namenda medication to my regimen. After some discussion, I decided I am going to hold off because Aricept and Namenda show very little improvement for patients, and I would like to take it a little bit later in this stage.
I then asked her point blank the following question “Everyone says that because I am healthier and more active than my Mom that my Alzheimer’s will not progress as fast as hers and that I could live to 75 and 80?”. Her response was that the average length of time for someone who is older with Alzheimer’s is 8-10 years, but often people with Early Onset Alzheimers have less than that. She added that because I have a heart condition and have had cancer it is more likely I will go sooner than later. That was NOT what I was expecting. We then discussed my end of life options and what I need to do going forward. I summarized it and said “should my goal be to live to 70 then, recognizing that some of those years are not going to be quality years”. She said I should plan for the worst and hope for the best. She indicated that she loves my attitude and feels terrible that she can’t help more but she will always look for ways to help me.
So the last 24 hours have been a whirlwind of emotion for me. My normally bubbly self, Miss Pam Positive has been deflated. For the first time since my diagnosis I have cried….really cried. This is just a phase though and I know it. I can’t give up hope. I have to keep following my brain health checklist as if my life depends on it….it’s the only thing I have to cling to.
Thanks for listening. I promise I will rebound out of this funk. I have always been a glass half full kind of gal, and this setback will be no exception. I am going to live in the moment, and be thankful that I do not have colon or pancreatic cancer that would take me right away. For that I am thankful.
Alzheimer’s, you may have knocked me down, but you have not beaten me. I will fight you every step of the way, and I will advocate for a cure until my last breath. Hakuna Matata.
Now I am off to get a big ice cream, because ice cream, and Disney World cures everything!