As many of you know, it has not been an easy time these last few weeks, and there has been a degree of shock and fear. The last few days have seen some important budding shoots of comfort and possibly hope starting to flow.
There is no sugarcoating the new potential diagnosis (and to be honest, the previous one either, to a large extent :-)), but like all things, you eventually start to move through the various phases of acceptance and grief and start getting your more positive thoughts back into gear.
I have seen a few things in the last couple of days which have started to show some signs of comfort and, dare I say it, hope—albeit against a background of pretty low expectations.
Some positive stories are starting to emerge from the torrid statistics. I have started to see evidence and experiences of people—some, anyway—who appear to be beating the odds, at least to some extent. Stats are stats, but these belie the fact that there are exceptions, and I have to hope that I can claim one of those seemingly rare spots. It will come with a lot of prayer, positive thinking (I am trying to :-)), and hard graft in the form of distressing exercise, physio, etc., etc., but I have to aim for it.
I have also read an account on a PSP group from a caregiver who pushed and pushed for a change in their loved one’s situation. I won’t go into the specifics here, but after a truly miserable period for both the patient and family, they found a path (through a hospice, but that is not the point) to find care which has at least alleviated the suffering of all and has given a quality of life back to all. This is really important for me to know—that if (and when) the above strategy wanes, there are still options.
In that context, we met with a social worker yesterday—she was awesome. It was a tough, tough discussion for both of us and for her, but we talked through resources that could become available to support us over the coming weeks, months, and years, and it was really important to know we are not on our own. In the afternoon we saw actions started to be taken. We—especially my family—will have support. We have a family who cares, a community which cares, and there are resources in place to help—at least somewhat. Again—lots of work to do—but it is a rare shoot of green.
Lastly, for those of you who know me, I fully intend to try my best to make a difference. I have now spoken to a range of respected people in the field of PSP in Israel and abroad, and I am starting to see the green shoots of a way in which I can make a difference. It is too early by far to discuss this, but stay tuned. I think I may be onto something.
So, in summary—the disease is no less intimidating (and prayers are still needed, please), but there is the start of some comfort from seeing some exceptions, some ideas at least to ease comfort for when I reach that stage, some support for my family, and some ideas coalescing into a possible meaningful side hobby which adds value and doesn’t involve any stress of commercial business or employment.
Life is strange indeed, and there is no way I or my family want to be where we are right now, but we must make the best of the situation we are in and lead through hope and hard work.
Alongside this I have also moved beyond the personal question of whether in parallel to the above to pursue a second opinion and all the time and investment this holds. It seems that no matter how many experts I see the symptoms ensure that there will always be some doubt both ways but a probable indication – it is just the nature of the symptoms I exhibit – it will always be a call and there is simply no definitive final conclusion. This has reduced the stress for me at least – the doubt is for me now a positive not a negative.
I will conclude with a direct quote from the post I read on the social media PSP group: “I’m so glad she is at peace here on earth for now. My heart goes out to all who are on this awful PSP journey. If it’s early on in your diagnosis—find your people!!! For caregivers—Bless you, bless you, bless you!”
That, I think, is the key!!
