Why is awareness so important, and why am I about to make it the center of an effort in Israel? I hear the reasons why it is not important from a number of different sources and attitudes:
- It is the same as Parkinson’s.
- There are so few people.
- There is no treatment anyway so what is the point.
- For many like me, the diagnosis is only “probably” and could just be aggressive PD—just hope.
- It is so terrible we don’t want to make too much noise.
- There are so many other priorities.
- There aren’t really any advocates to stand up for it because the life expectancy is so short and often even shorter because it is misdiagnosed as PD.
I could go on… these are somewhat understandable but ultimately bad reasons, but they seem to hold sway, and it leads to the anguish and pain of thousands of people who end up going through simply terrible trauma. But I refuse to let these excuses silence the suffering I’ve seen firsthand and read far too much about.
It is not the patients who feel the full effects; it is the caregivers and their families. In Israel, I want to fight the cause many others simply can’t. The sad fact is that the PSP Facebook and other sites are filled with caregivers because there are so few patients able to do any real advocacy. By the time their diagnosis is clear, or at least probable, the window before they can get engaged is so narrow.
I intend to do whatever I can for as long as I can! Why?
Because there are so many people suffering unnecessarily. I read the blogs and can think of at least four or five examples where a lack of awareness has a significant impact. The first two are mine; the rest are from others:
- Diagnosis: On diagnosis, no support is set in motion, and no reading materials or advice are provided, meaning you need to learn it yourself. With PSP affecting roughly 6 out of every 100,000 people, it’s rare enough that most doctors don’t even recognize it. In the few weeks I have had this diagnosis, we (my wife and I) have had to deal with changing careers, explaining the possible impact to ourselves, kids, family, and friends, stopping driving, putting in place a Power of Attorney, deciding on End of Life choices, contacting and negotiating with tax authorities, government agencies, insurance and pension companies, and health organizations. This at a time when “rest” is the top priority… some guidance would have been great.
- Explaining it to people: That the first and basically only source of information is Google is not acceptable. Firstly, it is not necessarily accurate or up-to-date; secondly, it does so in a brutal way, not taking into account many exceptional stories of longer survival, true dignity, and inspiration. I feel it all the time at the moment—that people don’t want to believe it is PSP because it is not 100% (nor do I)—so people are living in a strange form of denial, which really is not helpful. Hope is awesome, but not as a blocker to making sure the family is prepared.
- Getting the right help at home: It is much faster and more intense than most diseases and needs real care and support being put in place, such as home help and modifications at home.
- Hospital Experience: I have read so many horror stories of hospitals simply not being able to deal with or understand PSP—often it starts with a fall, so it goes to ER, then to orthopedics, then an infection, then end-of-life kicks in. It crosses many domains, and more importantly, the way hospitals treat regular patients with these conditions is not the same. Other alternatives like Palliative Care and Hospice settings are probably more relevant.
- Lastly, without any awareness, there is very little effort made to further research into treatment, cure, care, and support—it remains an undiscussed topic.
- Why not – when all is said and done why does there needs to be this added burden of shame, pity, stigma and lack of knowledge/under trained medical professionals…isn’t there enough to deal with.
I have enormous hope and won’t give up, but that doesn’t mean we shouldn’t do everything possible to improve the lives of those living with it and those caring for those who do. I am not asking for an unfair slice of the cake—just the minimum I think is right for people like me and my family.
In the coming days, I will be publishing more details on the campaign I plan to run—I hope for your support.
