I have been diagnosed with Alzheimer’s. I am still coming to grips (and may never fully come to grips) with what this will likely mean for the rest of my life. Having said that, I am also a “man of action”. My working career was essentially being a project manager — working to help people organize to get something (a project) from beginning to completion. Now I am faced with one of the most difficult projects that I have encountered, how to deal with this diagnosis. There is no planned “completion” of this project. It is very unlikely to get better and very likely to get worse. Being a man of action, I have engage a Numerologist and have been doing research on new treatments that are coming onto the market that in clinical trials have been shown to slow or even stop the progression (nothing has been shown to reverse it). U In 2019 and 2020 my wife and I started to have some concerns regarding my memory which has always been an issue for me but it seemed like it might be getting worse.  This blog is about my journey.

My reason for creating this blog is to share my journey and in doing so it is my hope that it may be a help to others who are also on this journey. There is a lot happening around this because us baby boomers are of an age when dementia can typically become an issue. Drug companies probably see a huge market for drugs that could slow or stop the progression (I have not seen any mention of drugs that may reverse it). These drugs are being rushed to markets although some of the results seem to be a bit iffy. This is so new that there isn’t a lot of good information about what works and what doesn’t and there are few doctors / facilities ready and able to administer these drugs. There is also the issue of definite diagnosis. There are many types of dementia — Alz being one of the most common. These new drugs only target Alzheimers so there needs to be a definitive diagnosis before treatments can be started. As far as I know, the only way to do that is with a spinal tap. Again this is something that is very new and few facilities are set up to do it. Also, many treatments are needed and they are repeated every few weeks over many months. – a bit like cancer treatments. These are not oral drugs but “transfusions” administered via an IV in a clinic over the course of an hour or so and have side effects that vary in their severity. The transfusions occur every two weeks for somewhere around 18 months. There is still controversy about whether the Amolid plaque that accumulates in the brain is root cause of the disease or it is something else but in a time of uncertainty with no other good choices we go with what we’ve got. The good news in all of this is that Medicare will pay for most of the treatments. However, as with any drug there are potential side effects. The drug that I am on has a rare side effect (5% of those taking it) of causing “brain bleed” which in extreme cases can be fatal. I was one of the unlucky people taking this treatment that had a brain bleed. Fortunately is was not sever — I had a bit of a headache and was somewhat nauseous for a day or two. Unfortunately I had to stop treatments for a period of time.

So the following is my story. I will start at the beginning ( a year or so ago). I will post things from time to time about my journey and what I am learning from others. There seems to be a lot of confusion and lack of good information — even amongst primary physicians about how to get a good diagnosis and how to get treated. IAs I said before, I hope this will be of help to others.