PSP at 50 – a complete anomaly!

There are major positives, some smaller negatives, and many differences I have been thinking about all day. It is sadly far more interesting to dwell on this than on the thought of Tottenham being thrashed this afternoon by its nemesis Arsenal.

Statistics:
The statistics may mean very little to me because they mostly apply to a different age group. I am an anomaly, and the average life expectancy figures, as frightening as they are at six to ten years from first symptoms, may have limited relevance. I am already in year six, which could work either for me or against me. I want to keep that front and centre. I have always been sceptical of statistics in my case, despite being a CPA, because every person is an individual. My age only reinforces that belief.

My body:
There is very little science about PSP at my age, which might mean my journey could be different. I am physically stronger, better able to withstand falls, and more capable of using what balance I have to compensate for what I have lost, even with no natural backwards balance. I have the strength to use the wheelchair when needed and remain relatively mobile. My cognition is strong. All of this may be part of the anomaly.

However…

Missed opportunities:
Starting PSP much earlier in life means I have lost many more years of mobility than most. A significant portion of my middle to older age has been affected in a way others do not face. I had to retire far earlier than most, and while many enjoy the benefits of retirement, I have had far less time to do so, and in reality I will have no time at all to do so. Most importantly, it affects the time I have with my children as they grow. The future that my wife and I once dreamed of together when we retired is also no longer. She is equally affected, although no one really knows what happens in later life anyway.

My family:
My wife and children are younger and have different needs and expectations. The impact on them is unique. I do not think it is better or worse, just different. I feel sad that they have faced so much disruption at such sensitive ages, and I see how hard it is for my mother and in laws, which is not usually the case for far older patients.

Differences:

There are other differences that come with being younger, and they work both for me and against me. In general, I can probably tolerate therapy, exercise and mobility changes differently, which may help me adjust. At the same time, declining from a much higher level of physical ability creates a sharper contrast and makes some losses feel more dramatic.

Because I am younger, my social and family life are at a different stage. My friends, colleagues and wider circle are still active, which is a support, but I am also probably the only one in my age range dealing with this condition. That makes the experience feel isolating. The same is true for my wife and kids.

Being such an unusual case gives me a perspective that may help others understand PSP from a different angle. At the same time, the rarity means there is almost no guidance that truly reflects my situation, and I am a poor test case because I am simply not representative. I am learning as I go, without a model to follow, which is both a challenge and a chance to see things differently.

Ultimately, it is what it is. No amount of weighing advantages and disadvantages changes anything. PSP, or whatever specific variant it turns out to be, keeps moving, and its speed keeps moving regardless of research, probabilities or survey results. I am in a manual wheelchair only a year after running a 5K. Perhaps the course will be different for me, and I have no reason to rely on statistics. I will let my body and my spirit fight for themselves without comparing to anyone else. With Parkinson’s there are younger patients and Young Onset groups. I do not think now is the time to start a Young Onset PSP group because I would probably be talking to myself, although at least no one would argue with me.

I have always been an anomaly, and science has never found a reason why I was diagnosed with what first looked like Parkinson’s and now seems to be a form of PSP only six weeks after recovering from Covid 19, with no known pre existing conditions. I do not plan to go down that path because there is no research and no point, but in a world of anomalies it makes sense to me. The doctors explored all genetic possibilities. They sequenced my entire genome and found nothing concerning.

This morning I saw a post from someone who lost her loved one last night after an eleven month battle with PSP. She wrote that she regretted spending so much time searching for answers rather than relaxing together. I do not think she has anything to regret, but it is not a path I plan to follow. I want to focus on my quality of life and be with my family. I will continue with a positive outlook, exercise, faith, and working to prevent falling and choking, helped by the possibility that the statistics may be irrelevant for me. That could go either way, but ultimately I am in G-d’s hands.

There is one point that can be taken in two ways. As an anomaly, my journey may feel different and I may not be representative. That might not help book sales of my PSP book, but it is the truth. Maybe the attitude I am taking is harder for older people whose bones are weaker and who are more cautious. It might also give people a chance to see PSP through a different lens, from someone younger with a different perspective.

The diagnosis itself is largely irrelevant. The symptoms are the symptoms and the progression is the progression. So far it is probably moving faster than expected. But I do not have to write off my future, and I have no intention of doing so.

Each of us is an anomaly in one way or another. This is just my take on my particular situation.