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It is not a particularly happy anniversary, but this week marks 18 months since I was diagnosed with PSP, and just under six and a half years since my first symptoms were identified by the hospital, initially thought to be Parkinson’s.
My wife and I had an interesting conversation today. As they say in my faith, “without invoking the evil eye.” Other faiths and beliefs have their own version,
If someone had asked us 18 months ago, “Where do you think Ben will be 18 months from now?”, we both agree that we would have expected me to be in a considerably worse position than I am today.
I cannot define precisely what that means. Physically? Mentally? Behaviourally? Psychologically? Functionally? Probably some combination of all of them.
I am certainly not saying things are good.
They are not.
I am in a wheelchair. I need significant help. PSP affects almost every part of my day and what tiny night that exists, and there are so many limitations today that I did not have 18 months ago.
But compared with what we feared when I was diagnosed, and what we read about PSP at the time, we both thought I would be worse than I am now.
I think that deserves recognition.
I take three things from it.
- I thank G-d.
I do not take my current position for granted, and I ask for His continued support and blessing.
- Some of my countermeasures have been important.
I cannot control PSP, but I can try to influence how I live with it.
Protecting myself from falls and infections. Retiring and de-stressing. Managing choking risks. Exercising. Keeping my brain active. Writing. Thinking. Adapting.
None of these things cures PSP, but I believe doing the things within my control matters.
- My family has made an enormous difference.
Especially my wife. Steps such as renovating the house around my disability. Accepting that I needed a full-time live-in carer. Changing routines. Helping manage and enforce my medication regime. Increasing supervision.
Some of those decisions were difficult, and some I did not particularly want to make. But they have helped.
I am also very conscious that not everyone with PSP reaches an anniversary like this feeling better than they expected.
Some people progress terribly quickly. Some families have far less time than they imagined. My thoughts are very much with them.
I understand that side too. During the first few months after diagnosis, there were periods when I felt I was deteriorating frighteningly fast.
PSP is unpredictable.
I am therefore not projecting today’s position into tomorrow. I have no idea what the next six months, 18 months or several years will bring.
I simply know where I am today.
Eighteen months after a diagnosis neither my wife nor I ever wanted to hear, we are doing better than we feared.
This is not a moment to open a bottle of champagne.
This is still PSP. It is still progressive. It is still horrible.
But in a disease where so much is taken away, I think it is important to recognise when reality turns out to be slightly kinder than you feared.
Eighteen months after diagnosis, that is worth recognising.
B’li Ayin Hara
