In my first post, I described the beginning of my journey – my definitive diagnosis and the beginning of my treatments.  Unfortunately, things didn’t go exactly as planned.   Things started off well.  By time I had a definitive diagnosis we were ready for our annual migration to Sanibel Florida.  Under normal circumstances we would be staying at our house on Sanibel; however Sanibel Island took a direct hit from Hurricane Ian (a Category 5 hurricane) in October of 2022.  Because of that, In 2023 we rented a house owned by my nephew and his in Winer Haven Florida.  It was warmer than MN but not anywhere near a beach – but did have a screened in pool.  This year we are staying in a house that is technically in the city of Naples but we are out in the country in a forested area where the houses are on lots that are an acre or two.  It reminds be a bit of staying in a cabin in the woods in Northern MN.   There is a community pool 15 minutes away and the Naples beaches are 30 – 45 minutes away.  We try to get to the pool / beach at least once a week.

The location looked to be 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 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 where we are staying.  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.  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.