On August 14th my husband was tested for genetic component of FTD. He also has PSP AND CBD. My oldest son wants to know if he has to deal with this terrible disease and my youngest does not. Spencer is 25 and Isaac is almost 22. I expect to hear mid September. Spencer is thinking ahead to getting long term care and life insurance. We are in the US. I have reached out to our financial advisor on advice for the two. I am struggling with knowing but know it is wise. I have been dealing with my husband for 4 years diagnosed an 9 years suspect( of course I did not know what). I was thinking that after Kurt (my husband) passed I might have something of a normal life but I see me dealing with this when I am 80+. I am 62 now. Kurt is in a memory care facility( financed by his retirement). I am told that 60% get FTD etc with hereditary components. I feel I am almost numb now with the possibility that my beautiful sons my have this horrid disease. Anybody been through this?
Genetic trsting: On August 14th my husband... - PSP Association
Genetic trsting
Hi, I’m in the US too.
25 and 22 years old is young enough to obtain affordable life insurance policies, so long as you aren’t aware of any preexisting conditions. I’m not a lawyer but when I have applied for life insurance and they find out that I’m a cancer survivor the monthly payment skyrockets.
I’m not aware that CBD or PSP is hereditary. I did a quick google search re FTD and received mixed comments about genetics. Percentage seems low.
Long term care might also be affordable at their young age but I wonder if it makes more sense to pay themselves and invest in a low risk stock or annuity of some sort with a guaranteed return. I’m not a financial advisor, but that’s what I wish I had done. We don’t have long term care, unfortunately.
“Life is what happens to you while you’re busy making other plans”. By
John Lennon
Try to live in the moment. Enjoy today. Life is too short to spend worrying about tomorrow.
That’s all I’ve got for tonight. Not sure if it’s helpful. You’ve asked some great questions. Maybe others will have a better response. I wish you, your hubby and your beautiful boys all the best.
❤️ from I SewBears
Thank you, I think we are taking the right steps and I am glad that PSP and CBD don’t have a genetic component. Thank you for your post.
Very well said and very good advice Sew Bears. Thumbs up on this one.
Anne G.
Hi
I can understand their concern.
However, PSP and CBD are held not to be hereditary diseases.
Having said that Alzheimer's disease rates are increasing. Most likely because of increased life span. On that basis, everyone should be looking to have sound life insurance.
Best to you
Kevin
This is a web page by the University of Pennsylvania on FTD. It might answer some questions.
ftd.med.upenn.edu/our-cente...
I have told both of Larry’s cousins who grew up in the same town he did that the environmental conditions there may have contributed to his getting PSP and they should be aware of that. They are both 56.
Are you a member of the FTD Support Forum? There's been a lot of good discussion lately about genetic testing.
Does your husband have a family history of FTD or ALS? Inherited FTD doesn't occur out of the blue.
I'd encourage you to arrange for a genetic counselor to share the results with your family.
Penn Medicine has a great booklet on genetics. It's available on The AFTD website. See:
theaftd.org/wp-content/uplo...
I'd suggest you make brain donation arrangements for your husband. If you live in the US or UK, this is easily arranged. It is likely your husband has FTD, PSP, or CBD -- one of those.
RobinR
Thank you for the advise on brain donation. I have a great FTD support group and I will read the booklet. I have been afraid but now I have resolve. We are working with a genetic counselor.
My son died of PSP, 2017. His father died of FTD, 2002. I think you are wise, if they are willing, to look into genetic testing. One of my son's cousins thro his father has MS.
Wow, I know PSP often includes some frontal lobe dementia, but I did not think the actual diseases ran together. I thought if it was PSP, the assumption is that’s where the symptoms came from.
My husband had a diagnosis of PSP by 2-3 doctors , and now one has suggested FTD. That’s scarier because of the hereditary component. Nothing in his family.
I am working off a lent computer that keeps turning off. Mine is in the repair shop. I do not know, but I believe that PSP is largely inherited. This is MY belief. On the PSPA site, there is a "BRIEF GUIDE TO PSP". The ending paragraph states....."the exact cause of PSP is unknown, however, there is now known to be a complex genetic component involved......".
Under PubMed - NCBI....J Mov Disord, Sept 8, 2015 there appeared an abstract......"understanding of genetic background has been expanding rapidly".
I believe it's important to gain some understanding of how genes work.....the NIH has a "Genetics home reference" that helps in understanding how genes work. It is more complicated that recessive vs dominant genes.
Aside from genes I encourage you to watch on YouTube, Jim Bower of the Mayo clinic.....PSP-Making a DX. I learned a great deal.
I am ending my reply before the computer ends for me.
I know that because the disease is so HORRIBLE people seem to shy away from any thoughts or mention of genetics...........
The PubMed abstract is titled GENETICS OF PROGRESSIVE SUPRANUCLEAR PALSY.
I am grateful for the company of posts. It is a lonely place even with great support. Thank you!
PSP - Montreal, Quebec
