IT’S VERY FRUSTRATING

It’s kind of weird watching your own decline. Never knowing what’s coming. What the next day will bring. The bad days come more frequently and get worse. The good days get shorter and shorter.

My condition, posterior cortical atrophy (PCA), causes my vision on my left side to be disconnected – with information that I take in getting “lost in the sauce”. To try to deal with this, I go to a low-vision clinic in Gambrills for therapy designed to help me adapt. Basically, there are puzzle games – a wide range of them. Their goal is to get me not to ignore my left-side input. I can’t tell if my disease is advancing faster than the therapy can keep up with, or if the therapy isn’t effective. It’s very frustrating; but I’m trying to follow it through to see if it works or doesn’t.

This whole diagnosis has been really weird – very frustrating. I try to look at it from a positive standpoint. What I can do today. Not what I can’t do. That gets harder and harder though as what I can do is dwarfed by what I can’t. Veterinary medicine, for instance, is muscle memory on the one hand, but on the other, I’m watching all that knowledge be right outside of my reach. I might ask good questions, but I’m more and more challenged to comprehend the answers. That’s the most frustrating point. There are things that I used to be able to do so easily and now I can’t accomplish them at all.

I’m in a stage where I enjoy doing things, but I’m not always able to do them. That’s frustrating, but it could be worse.

A lot of things that were normal or simple everyday things have become work – they take enormous effort. I used to enjoy reading, but I can’t track the words very well now. I did books on tape and stuff like that for a while. I tend not to finish things. (That’s not the disease though, it’s just me.) I do like and enjoy watching television now because it’s no work. It’s a distraction and that’s helpful. It’s not a strain.

An interesting thing…I recently took a trip. I have been a lifelong baseball fan. My wife, her sister, and I took a trip to Sarasota for the Orioles Spring Training. It was really fun. The weather was great, and it was fun seeing the players coming up from the Minors – how talented they were and how they performed. It was a great trip; but as the days progressed, I got more and more wiped out. I still haven’t recovered, and I guess that I don’t know when or if I will get back to the point I was at before the trip.

My wife and I want to go to a couple of Orioles games. One of the obstacles is that I don’t have the stamina to be up and about – I get too tired. Having the strength to be up and about that long is a challenge too.

My advice for others…First, get a diagnosis. Don’t let someone label you unless you get a diagnosis because it minimizes your options. If it’s not accurate or it’s a guess, you’re probably missing opportunities to get therapy and help that is more targeted to what you’re dealing with vs. “You have dementia – Go sit in a corner and don’t bother anyone.”

We went through a long list of doctors before we got this diagnosis. Be prepared for a lot of tests. Be persistent. Beyond my spinal tap, I can’t even tell you how many scans and other tests I had. In the end, I’m happy I went through all that because I know what’s wrong; and I am very lucky because I have great doctors and great family members.

I’d love to continue to contribute to this blog and hope that through my introspection, I can help others. My first few entries were easy because I knew what I wanted to say. I have to admit that I don’t know what goes on in other people’s heads. Is it in any way like what goes on in my head? I hope that what I say is helpful.

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Winter Growth’s founder dreamed of creating a community where seniors and adults with disabilities could continue to learn and grow – filling their lives with joy and purpose. For over 40 years, we have fulfilled her vision by providing unique, affordable Assisted Living/Memory Care and Adult Medical Day Care tailored to our clients’ individual abilities, interests, and lives.