In 2019 and 2020 my wife (Ellen) 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. 

Our son had been diagnosed with ADHD and was on a drug to help regulate that.  It occurred to me that reflecting back on my childhood and as an adult , given my memory as a child and an adult that perhaps that was an issue for me as well.  My physician suggested that I get tested for ADHD.    I found a person who seemed to be a leader in testing for ADHD. 

I “aced” most of the tests…. except for memory:

Memory was briefly evaluated by administering one visual and one verbal memory task. When asked to copy a complex geometric figure and then draw it from memory after a short and a long delay, Tim struggled considerably with scores below the 5th percentile. His auditory memory was in a comparable range. He completed a list learning task that included 5 learning trials.

He suggested that ADHD may be a factor but that I should see a Neurologist.  My doctor did not have a recommendation so after some research I  connected with a doctor at the Clinic of Neurology in Edina.  After additional testing she suggested that I might have Mild Cognitive Impairment when can be an early sign of Alzheimer’s. 

THE DIAGNOSIS

The only way to definitively diagnose Alzheimer’s (I believe) is through a spinal tap – where a sample of the spinal fluid is removed and tested for the ALZ plaque that accumulates in the brain.  This is a relatively new method of testing for Alzheimer’s.  It was done at a hospital and took about two hours.  The result came back positive. Given the symptoms I was having we were not surprised with the outcome but of course also very concerned.  Alzheimer’s is bit terrifying.  It progresses slowing and gradually robs one of memory and other brain functions and there is no cure. 

I (and Ellen) received the results from my Neurologist and we talked about possible options.  She mentioned that there were drugs that were likely coming on the market that in clinical trials seemed to slow or even stop the progression.  The FDA had approved one of them – Lequembie manufactured by Nihon Eisai Co. Ltd. which is a subsidiary of BioGen and was approved in July of 2023  and another Donanemab  from Eli Lilly was (and still is when I upload this post) awaiting approval and it was unsure when it would be approved.  On paper it seemed that Donanemab might be better because it is administered every 4 weeks as opposed to Lequembie which is administered every 2 weeks for 18 months or so. Given the uncertainty of when / of Donanebmab would be approved, I decided to go with the bird in the hand and started the Lequembie treatments.

THE MIGRATION TO FLORIDA

We were about to start our winter migration to FL and had picked a house to rent for the winter a half hour from Naples, FL. It just so happens that the location was ideal because it just so happened that in Naples proper there are two organizations – “The Memory Treatment Center” and “ The “Infusion Center” that were the first clinics in the country to provide infusions of the Leqembie drug which is the only treatment on the market for treatment of Alzheimer’s.  Both facilities are about a half hour from the house we renterd for the winter.  While still in MN we reached out to the Memory Treatment Center to get screened to confirm the diagnosis and get registered for the treatments.  I felt extremely lucky to have found a facility so close to where we are staying.

An MRI was required to ensure that the diagnosis was correct.  The results of the MRI were depressing.  It showed that the Hippocampus, which is plays a significant role in memory, looked to be significantly reduced in size.  The results of the MRI (as well as the spinal tap) confirmed that  I have Alzheimer’s and that the treatments with Leqembie would be appropriate. 

The infusions Leqembie occur every two weeks for 18 months with MRIs taken periodically to check for a brain bleed which occurs in about 5% of the cases that involve these infusions.

The infusions were out patient at the Infusion Center.  A bag of the Leqembi (looks to be cup to a cup and a half) is hung on a pole with a tube that the directs the Leqembi into my arm.  It was painless and the whole procedure lasts for about an hour.   I was whipped out after the infusion and crashed for the rest of the day and following day I was still feeling a bit weak.  However, after a couple of infusions the side effects diminished somewhat as my body seemed to become accustomed to the drug.  An MRI was required after every 5 infusions to check for a brain bleed – which occurs in approximately 5% of the cases. 

Lucky me!  After the 5^th infusion I had an MRI and that evening the doctor called to say that the MRI showed that my brain was bleeding.  Fortunately, the brain bleed doesn’t appear to have serious negative side effects and dissipates on its own.  I had a bit of headache for a day or so.  However, protocol called for the treatments to be paused.   However, if I have a clean MRI after 5 weeks, the treatments can be restarted. 

We will be leaving FL in less than a week so I will not restart the treatments here.  However, I have been in touch with my Neurologist in MN.  She has started providing the Leqembi infusions as well.  I have appointments set for an MRI and to (hopefully)  restart the infusions shortly after I return to MN.

This journey will likely continue to have its ups and downs.   It is frustrating to have to wait to restart the infusions.  Every day that goes by the disease continues to progress.  I think I can see my memory continue to decline and it’s depressing to know that I will never get back what I have lost.   But at the same time, except for my memory, I am still cognitively sharp. 

It would be easy to have dark thoughts about what the future may look like. As mentioned above, there is no “cure” — the drugs on the market will at best slow the progression (best case is to halt it). I have decided that it is not helpful to fret and worry and let it consume me.  I am lining up things to do once I get back to Bloomington.  Certainly there is always things to do around the house but I need to be interacting with people on a regular basis as well.  For example I have talked with a friend (who is also retired and looking for meaningful things to do) about us volunteering  for Habitat for Humanity.  My father was a carpenter and so I know my way around and hammers, saws, screw drivers, and paint brushes.  I have some other potential leads as well.  And of course there will be a fair amount of lawn, garden, and house projects to attract my attention as well.

This will probably be my last blog before heading back to MN and will likely post again after my meeting with the Neurologist.  Again, feel free to share my blog with others.  It is my hope that by sharing my journey it will help others and their care givers who are on a similar journey.  Feel free to response with any questions / thoughts.  Also, feel free to comment, provide suggestions, ask questions.