This is an update on my battle with ALZ and is being sent out to friends / family.  I have two purposes here: keep everyone updated and perhaps be helpful to others.  ALZ is scary – especially for those of us that getting to “old”. The following are some updates – northing major but some an bit of an update and some thoughts about the future…

• I continue to receive infusions of Leqembie every other week.  It seems my body has adapted well because I don’t experience side effects other than being a little tired afterward.  I will continue the infusions every other weeks for the next 12 month or so.  It is a little unclear what happens after that. 
• There are two drugs on the market right now.  Phifer’s Leqembie and Eli Lilly’s Kisunla  (announced in the last couple of weeks).  It appears Kisunla may be a bit superior to Leqembie – slows the progression of the cognitive decline a bit more and the infusions are monthly instead of every other week but it.  I doubt if anyone has any clue whether it would make any sense to switch.
• With either drug, it is unclear what happens after the 12 months .  IOWs is that the end of the treatments, are patients “cured” such that the Amyloid plaques will not reappear?  In most other cases, a drug like this would go through many trials.  However, given the nature of how long it takes to conduct a trial (many months – if it is expedited) I suspect that these drugs haven’t been in trials long enough to know for sure.  From what I have read, it appears that  it is not known what causes the amyloid plaque to build up in the brain in the first place so it may be that we are treating the symptoms of the disease, not the disease itself.  It may be a bit like cancer treatments – they kill off the cancer cells but does not necessarily address what gave rise to the cancer in the first place.
• HOWEVER, there is still debate as to whether the Amyloid plaques are the real culprit.  I recently read an article that suggested that ALZ is caused by an autoimmune response to changes in the brain do to aging – it is unclear to me how the Amyloid plaque fits into that scenario – if at all.  At the end of the day, it doesn’t really matter because at this point there is no cure.   My research has found that once diagnosed in the early stages, the current life span is 8 to 10 years and the memory issues will gradually increase (along with other physical issues).  However, the drug that I am receiving is supposed to slow the progression.  Again, because these drugs are so new, there is a lot that is unknown.
• Despite all the uncertainty, I am doing OK.  I can tell my memory – which has never been that good — is getting a bit worse; but since I am still in the early stages I am mostly functional.  I can still drive a car (but I always have Google Maps up on my phone even if I’ve driven to the location many times in the past).  I can have a normal conversation with others, I can do household chores as well as always, etc.  When  I have a conversation with someone it is likely that an hour later I will forget some of the things we talked about.  I also have what I refer to as memory aids.  I have an electronic to do list with me at all times (on my phone, my iPad, and computer) and rely heavily on Google maps.   So I’m doing everything I can to live a normal life AND be aware of my short comings and make sure that those I interact with are aware of them as well. Recently I got together with someone I went to high school with who I hadn’t seen for many years (I have been reaching out to people in my past just to reconnect and catch up – gives me something to do).  I knew we were going to go down memory lane so took a moment to explain my situation… that I would probably not remember a lot of details about high school but would remember some of the major things.  We were still able to have a good conversation that was focused more on the present (current profession, spouse, children, hobbies, etc.).  I also mentioned to him that I may not remember some of the conversation and he was OK with that.  We agreed we would stay in touch.
• As you can imagine, this is all somewhat difficult.  I try to stay focused on “one day at a time despite the fact that  I know how this is likely to end…. ALZ is often a terminal disease that can be especially difficult at the end.  Ellen and I are beginning to research short  and medium term housing options (e.g. we really don’t need a 4 bedroom house with a quarter acre yard).  We’re not at the point of making any near term decisions but rather researching potential options so we can begin to develop the outlines of a plan.  We also will continue to go to Sanibel for winter as long as we are able.  There is a clinic nearby where I started my infusions earlier this year before returning to MN and will be able to continue them there this winter.
• Thanks for listening and all your love and support.  Please don’t feel shy about reaching out – would love to hear from you and if you are nearby…. Let’s have coffee and catch up!!