Over all I am doing well. I am continuing every other week infusions and they have gone well – no major side effects.  Neurologist ordered an MRI After the most recent infusion and it came back negative for bleeding in my brain which I had after my first few infusions.  These infusions are meant to slow the decline in memory by 26% after 18 months of treatment. – so my memory will get worse, just not as fast.  I’ve gotten about 6 months of treatments so that means I have another year of treatments remaining.  It is my hope that even more effective drugs will be released that will further slow the decline.

I have also reached out to the local ALZ  Association and, given what I have experienced thus far in my journey, I am encouraging them to put a much more emphasis on the getting the medical profession focused on identifying people who likely have ALZ and getting them into the treatments to slow it down.  I think that much of their focus has been on helping people live with ALZ but know I think they need to also focus on making sure that early stagers are aware of the treatments to slow the progression.

My observation is that frontline physicians aren’t equipped to do an initial ALZ screening of a patient who seems to have memory issues.  This could be done with a relatively simple memory test.  If the results point to potential memory issues that exceed what would be expected for a person of that age the next step would be to refer the patient to a Neurologist and provide them a list of the Neurologists in the area and also let them know that the FDA will pick up the tab (including the cost of the Neurologist as well as any treatments) once they have maxed out their Medicare deductible.

If that were in place then the ALZ association could focus not only on helping those with ALZ on how to live with it but also how to get tested and treated to slow the progression if the tests are positive.  This would only apply to people like myself that are in the early stages of the disease.  My hope is that within 18 months the drug companies will come out with something does more than just slow down the progression – I have to believe they working hard on it as it could be a huge windfall as there are around 7 million of us who are needing it.  I have a conversation scheduled with someone from the ALZ association to make my case next week.  I’ll let you know how it goes.

In the meantime– one day at a time; and do what I can to make a difference.