Hi all.
My father passed away with this dreadful disease at 67 years of age 12 years ago. I am still haunted by it. It took so much from my family. Crippled an educated academic gentleman into nothingness of his former shell.
I'm interested to know are there any checks to see if I will also develop PSP? Can it be passed on to children?
My prayers and strength to all who are dealing with this dreadful disease. Hang in there because it is tough.
When my husband was diagnosed I immediately thought about our 3 sons and whether they would suffer the same fate. I was told by the neurologist that they had found no evidence that PSP can be passed on to the next generation. PSP took my husband and had an effect on all the family during the 6 years I nursed him so after his death, we decided as a family that we wouldn’t let PSP continue to ruin our lives. At the moment there is nothing we can do to prevent it if it is going to return to our family but it is highly unlikely to anyway so we are all living our lives to the full, making the most of every day. Losing Colin soon after his 69th birthday 3 years ago, made us all realise that life is so short. My message to my sons after my husband died was, if you have the time and can afford it, do it now, don’t wait. When I was dithering about booking a holiday to Canada a few months later, they reminded me so I stopped dithering and followed my own advice, and I continue to do so.
We all grieve in different ways but please don’t let PSP continue to win, life is too short.
❤️XxxX
Today, if we had 100% proof that PSP is genetic, there would be nothing we could do with the information....no way to address the genes. So, I ask, what good does it do to know if it is genetic when there is nothing that can be done? If it is genetic, science is just at the beginning of redirecting/modifying genes.
I personally believe that PSP has a definite genetic component. From time to time, on this site, this issue is brought up and opinions are contributed. But until research catches up with our questions, we won't know.
My son died of PSP (unverified because no brain autopsy was done) at the age of barely 55. He was DX by several neurologists....both at UCLA and Kaiser Permanente. His father died of FTD at the age of 60 or so. The Association for Frontotemporal Degeneration considers PSP as one of its categories.
Genetics is VERY complicated. It is not just a simple mutant or dominant vs recessive gene. Google "Genetics of Progressive Supranuclear Palsy". Also, the NIH has an excellent article on "What are the different ways in which a genetic condition can be inherited". The PSPA in their BRIEF GUIDE TO PSP states that "The exact cause of PSP is unknown, however, there is now known to be a complex genetic component.
So the answer I present to your question, Chiko1, is which answer gives you comfort? For me my comfort comes from a genetic component instead of a random virus, etc. In the meantime the more brain donations that are made the closer we will get to answers.
Los Angeles, CA, USA
I know that no research backs up PSP being hereditary however I think there is some evidence of some families being more prone to this type of disease - can’t remember the exact medical terms. I had the same conversation because as my lovely husband was in his final weeks, I discovered that his mother had died at an early age too and that she supposedly had Parkinson’s and died of a type of pneumonia and I also discovered that one of Steve’s brothers ( who none of the rest of the family have any contact with - long story!) also supposedly has Parkinson’s. This all seems a huge coincidence to me. I spoke with Steve’s neurologist at the time and he was really interested and we sent blood samples to the gene research bank and then I also donated Steve’s brain after he passed away as any research that can be done regarding this hideous condition is worth it.
My husband has PSP. His uncle on his mother’s side died from PSP in 2006. His mother passed a month ago, and for at least the last 15 years of her life, she presented all the hallmark symptoms of PSP, yet was never clinically evaluated by a neurologist. IMO, this is not a coincidence.
This was a question I asked the PSPA helpline and their answer, based on their knowledge at the time, is that there is a less than 1% chance it's hereditary which gave my mother some comfort that she wouldn't be passing it on. However, as we all know and has been mentioned above, genetics is extremely complicated and other than death and taxes there are no certainties.
I believe the NIH released new information last month that clusters of the disease have been noted in families leading to the hypothesis that there is a yet unidentified biomarker. For adult children the difference might mean purchasing long term care insurance at an younger age than typical, greater emphasis on disability insurance, and better brain health practices (diet, exercise, sleep quality). To move research ahead please consider participating in the following:
My husband, who at 67, is very near the end of his PSP journey. Unfortunately we now believe that it is also what his father had too...we just didn't know of this disease beforehand. But talking with his sister (who was taking care of their father) we agree the symptoms matched. The falling backwards, weird stare and the slurring of speech. And yes me too am scared for our son.
Like you l lost a parent to PSP & years later wondered if l might have it... due to my numerous falls & many family members saying... You are just like mom. So l started doing some serious soul searching along with researching PSP. I decided if l did follow in mom's footsteps l needed to treat everyday like a Blessing & enjoy it fully... starting with coffee of course (just lIke mom).
I was eventually told by a neurologist that the falls were because of neuropathy... so l now use a cane or walker for saftey sake. I am not sure he is correct but oh well... l still watch for signs of PSP but have let go of the worry because there is nothing l could do differently anyway. Life is mystery. Sending Hugs... Granni B
sadly passed away
PSP at 63
PSP Caregiver
PSP has left this home!
