4. Disability

For well over thirty years I was in the Information Technology business. I started as a graphics creator in an engineering firm, and moved on to create my first network in 1988. I supported and created schools. I helped friends and family with a wide range of problems. I have a master’s degree in IT Project Management. I say all this only to drive home the point that when, one day in late July, it took me over five hours to do a simple profit and loss spreadsheet to calculate my out of pocket expenses, I knew I was no longer fit for work. In better days, this task would have taken me less than ten minutes. But I could make no sense of the numbers or columns. Additionally (pun intended, sorry), I would lie awake nights stressing about the things I was missing, how ineffectual I was being, or just how my patience with the (very limited) strife at work was wearing me down. I was stressed enough with my own impending doom. I didn’t need other people’s issues on my plate any longer. I couldn’t.

The day after the spreadsheet fiasco, I let my employers know I needed to be done working by the end of the month. They were wonderfully supportive. I began the (still ongoing) process of applying for disability insurance through Social Security. This began with a scheduled phone call. A lovely person walked us through the application process, including taking our checking info for direct deposit. Told us that people suffering from Alzheimer's are generally always granted their claim. Disability, for those who don’t know, is just getting your retirement age (67) social security early. Nothing extra exciting about it. No special services (or even medicare/aid) until you actually age qualify for it. That’s fine. As long as my insurance is paying for my Leqembi, I’m satisfied with it. (Although Medicare would offer me the opportunity to move about a bit more. For now I’m stuck in Massachusetts for my infusions.) I’m also not sure what would happen should certain people be elected this coming November who promise to gut Social Security and The Affordable Care Act. Perhaps if our government officials had to use the same health and retirement planning as the people they claim to represent things would be different. But no way they’re going to vote for that for themselves, are they? Talk about entitlements, hmmmm? Yet another reform desperately needed. So, hopping off my soap box, that was done, and she told us it could be anywhere from a week to six months for an answer. Our government at its speedy finest folks!

After the phone call I was sent (as was Wendy) a packet to fill out. It was loaded with questions pertaining to my socio-emotional health. Can you cook, do yard work, read, etc. What seemed like a valid set of questions. Wendy had the same set of questions to answer. Again, A totally warranted process. We had to send that back to Boston within a day! They sent along a pre-stamped envelope, but no address! Luckily, we live right near a social security office, and they take hand delivered questionnaires. So that was done! Then I got another questionnaire from the same office. This was all about how my illness was preventing me from my job as a laborer. Like, how much time at each job that you’ve had in the last five years, do you spend on a ladder, and is your illness making it harder? There were five pages of this. All needing to be handwritten. Which is going to lead me to another item, but I’ll get there momentarily. So I filled out (or Wendy did for me, as you’ll see shortly) the entire thing - and said, in essence, my problem is not that I can’t lift fifty pounds. It’s that I can’t think anymore. Brought that down to the social security office, and now I’m back in a waiting game! I just tried to log into the SSA.GOV site and it can no longer even bring up my records because I have a claim in process. So that’s good, I guess. And the claim is retroactive to the date of the call. Also good. Getting on disability will enable me to spend more time on self-care, including creating and updating this blog, writing some history (of me), playing my guitar and bass, sleeping, getting infusions and participating in clinical trials, exercising and just caring for me, and for Wendy, who is not going to have an easy time of it either. I’ll be able to travel, spend time with Jonas and Pickles (I just have to be here every second Monday for my infusions), and to just try to live my best life while I can. (By the way, I’m the only one who calls here Pickles - it comes from her being my maybe Daughter.In.Law (DiL-DILL-PICKLES… Get it?) someday soon.)

As mentioned above, there’s another (actually 2) more degenerative issues to deal with. I can’t write (by hand) anymore. I shake so terribly at that angle. Same holds true for using a fork from a “scooping” angle. I can still play my instruments and type with no problems. It’s just that “claw” angle for now. I have no doubt that it will get worse. I’m taking suggestions for instruments I can play that require no finger dexterity. Harmonica? Trombone? Along with that, I have something called Central Sleep Apnea which is when the brain forgets, temporarily, to remind the body to breathe. Just found that out yesterday. Pile it on, why don’t you?

I had my fourth Leqembi infusion yesterday, and will go for my first follow-up MRI tomorrow. So far, things seem to be going well in that area. At least no problems reported. I’m being diligent about my homework for the clinical trial, which I will expand on here soon. Saw a couple of old friends for the first time in years over the weekend. It’s nice to catch up! And life progresses on. I am refusing to let it get me down, and I will continue to do everything I can to stay involved as long as I can. 

And finally, because we’ll be away on election day, Wendy and I cast our ballots by mail. I can’t stress enough how important this November is, especially for those of us who rely on a functioning, empathetic government. Down ticket is just as important. Even though nobody running is perfect and you may disagree with parts of the platform, think about the damage that the other side will do. (Sadly, both sides of this will read the above statement and think it holds true for them. Except for the empathy part. And the ACA and social security. Then it should be obvious. Clearly there’s a LOT more at stake, but I’m being selfish with this platform, despite loads of other strongly held beliefs. This is not the place for that.)

Thank you for reading,

Sean