I've been dealing with late stage PSP with my husband who has had the misfortune to have not one but two rare diseases! When he was born he had Hirschprung's disease and had most of his bowel removed (wore a bag for a year until they reattached his plumbing) So as you can imagine he has been plagued with constipation issues all his life and now this PSP!!!! He first started complaining about 15 years ago that his left leg sometimes didn't do what he wanted it to. Then came the falls and I noticed social changes. Years ago I would say to him what is wrong with you voice? What is wrong with your eyes? Finally last year after all the different doctors we finally had the PSP diagnosis. I feel for anyone going through this awful journey. When I am feeling down I will go listen to my favorite "late" singer John Wetton's song Extraordinary Life. It's a good "pick me up"!
What are the odds?: I've been dealing with... - PSP Association
What are the odds?
Welcome to the site.
Fourteen years of not knowing! I can’t imagine. Medicine really is clueless about this disease.
He was a painter and exposed to some pretty harsh chemical. I heard there could be a relation to this disease. Yeah he must have a slow progressing version. Thanks for your reply!
Environmental exposures is one thought about the origins. Larry grew up south of Pittsburgh surrounded by steel mills and coal mines. Lots of toxins.
My husband was a banker all his adult life, never smoked & drank socially. He is a man of patience, gentleness & kindness. The dreadful PSP does not seem to pick or choose!
The odds are out of whack, wow! I’m so sorry you’re going through all of this but I am glad you found this site. How old is your husband?
67 and his first symptoms started in his early 50's. We think now that his dad had PSP before he passed away and now I'm worried that our son will get it someday.
I wasn’t aware that PSP is hereditary but I’m sure someone on this site can answer that question. I’ve learned to live in the now as best as possible because it doesn’t help to worry about things we have no control over. Cherish each moment.
Hugs from I SewBears
As fas as I know PSP is not a hereditary. Also when a doctor gives a Dx for one of these diseases it is really only an educated guess based on experience and knowledge. A 100 % confirmed Dx is only through a brain autopsy unfortunately.
Ron
Sorry to read about your husband having two rare diseases.
I hope you will consider donating his brain so that the diagnosis can be confirmed. If you are in the UK, the terrific Queen Square Brain Bank may be able to assist you in advance arrangements.
We are in the US. And he does indeed want to donate to help find the cure.
If you'd like help making arrangements, see:
brainsupportnetwork.org/bra...
Thank you Robin....that you included the info for the brain autopsy. To this day I regret not having the info to donate my son's. His death occurred so quickly. I wish there was a PROMINENT PLACE for the info.
I read the story of John Yanez-Pastor. My son was also born in 1962, also a Latino (Mex-American). DX by UCLA , Dr Emad Farag, July of 2015, with "possibly" PSP or MSA. Confirmed without brain autopsy by Dr Enos of Los Angeles Kaiser Permanente, January 2017. My son died May 4, 2017. He had just turned 55.
When my son died I thought he was too young. Yet, John Yanez-Pastor had less.
My son's father died of FTD, 2002...DX by UCLA .
Margarita, Los Angeles, CA, USA
Margarita,
Thanks for reading the sweet story of John Yanez-Pastor. He was a wonderful man. Too young. Like your son. I'm sorry you didn't think of brain donation. We handle three brain donations a week. Half of our calls are urgent last minute ones -- where death is minutes away or has already occurred. That's very stressful for the family. So we always encourage people to plan in advance -- as soon as their family member is on hospice. But not all of us do that. You can help by encouraging others to consider brain donation, regardless of the diagnosis and how imminent death is. (Even healthy controls are needed.) Sorry your son's father is also gone as well. It's troubling that they both had FTD-type disorders.
Robin R.
Hi Robin, NO need for you to reply, but wanted to let you know I HAD thought of brain donation (autopsy) for PSP research, but the time of death came much quicker than I had anticipated. As you know home-caring for PSP takes 30 hours out of each 24 hours...little time for so much that needs to be done.
No matter how prepared for death, it always come quicker than expected.
Regarding brain donation (autopsy) I like that you have told us that even if death is MINUTES away or minutes AFTER we can still call. THAT THERE IS STILL THE POSSIBILITY for an autopsy. This is VERY helpful to know....hope.
Is it possible for YOU to do a post on brain donation....with all the information YOU have listed here?? I'm sure we would all appreciate it.
Los Angeles, CA, USA
Oh the poor man, that's more than his fair share. Hope you find this site useful, it's been a real life saver for me.
I find taking one day at a time is best. I joined this site when l worried my many falls were the beginning of PSP. Mom had PSP. Most experts in this field think it is not passed down through generations. Like Larry, mom lived a few blocks from a steel mill. I remember the ladies in our nieghborhood sweeping the grayish black dust off their porches & sidewalks everyday.
I am making a guide of what signs to watch for just in case my family needs it in future years. This site is an excellent place to gather information & support & understanding. Sending Hugs to you & hubby... Granni B
A dear friend of mine who suffered with Crohn’s disease for many years was also diagnosed with PSP in 2016. With all that’s been coming out lately about the importance of a healthy microbiome in the human digestive tract to our overall health, I wonder if there’s some connection between PSP and bowel disorders.
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