I am creating this blog for family members to interact and share there own stories about how Primary Progressive Aphasia has affected their lives.
When I first met my father in law roughly 12 years ago I was so intimidated by the man. The reputation that proceeded him was that he was an intimidating genius that knew everything. He started his own computer software business nearly 40 years ago and is still the top in it's industry. He is the type of man that you can ask any question to and he will have the correct answer every time. His hobbies were reading in his libraries, building retaining walls, and collecting trains. As the years went my relationship with my father in law grew stronger and stronger; he finally let me borrow and use his tractors without needing to ask permission to so. He always said "If you borrow something make sure you bring it back in better condition from when you took it."
When my father was diagnosed with PPA he actually took it real well. He read up on the disease and was planning for what was going to hold for him in the future. He is surrounded by family on a day to day basis; he is married with 6 children and has 18 grandchildren. Everyday he is playing with his grandkids which always puts a big smile on his face. I am not sure if my father in law will ever get lonely because he is so blessed with a tight knit family that will do anything to make sure that he is happy and safe.
More stories to follow.
Please share your own and how PPA has affected your lives.
Hi, Andy,
ReplyDeleteI am compiling a list of resources for people and families affected by frontotemporal disorders, including primary progressive aphasia. It will be posted on the National Institute on Aging's website, along with several existing resource lists, mostly for Alzheimer's caregivers. I would like to include your blog on the FTD resource list if that's OK with you. Please contact me at chirschman@jbsinternational.com with any questions. Best of luck to your father-in-law in facing this challenging condition.
Carolyn Hirschman
Senior Writer/Editor
National Institute on Aging Information Center
Andy,
ReplyDeleteI recently found your blog on APP.org. Thank you for sharing your story about your father in law. My mother was diagnosed around a year and a half ago and has gotten slightly worse over that time. It would help greatly to know about his condition whether better or worse, mind exercises or techniques that have helped, or any other usefully information. I like probably to many other family members found out a while after that person had been diagnosed, because they are aware of what's happening and just hope it will get better. I look forward to reading more updates.
Andrew
Andrew,
ReplyDeleteI am sorry to hear about your mother’s diagnosis, it is a very difficult disease to have a family member go through.
For Bruce, my father in law, PPA has really progressed this year. It seems that this year his fine motor skills have been greatly affected.
He has difficulty opening up soda cans, typing on the PC, and writing. We purchased an app called Proloquo2Go and installed it on our iPad and my Bruce’s iTouch.
It was a great application to use initially but now since his fine motor skills have been affected he does not use it any longer.
His appetite has diminished as well this year. My mother in law took Bruce to see Dr. Mesulam from Northwestern University for his annual checkup.
He did see a slight diminish in Bruce’s brain from the last CAT scan.
On the bright side he still loves being around his grandchildren and playing with them on a daily basis, this is one of the few times I see him smile.
There is a great Yahoo support group that I found for families with PPA, the link is below and all you have to do to join is create a Yahoo ID if you do not have one.
http://health.groups.yahoo.com/group/PPA-support/
Another thing that I have done is created a Google Alert for Primary Progressive Aphasia.
This sends me updated articles about any news related to PPA.
Keep us updated on your mother please.
Andy
Hi, I am the spouse of a Viet Nam veteran who was diagnosed about two years ago with PPA. I think he was ill long before his diagnosis. He is now 66. I am interested if any link has been investigated between expposiure to agent orange and ppa. My husband's progression has been rapid from word rerileval problems to any almost complete inability to speak, cognitive problems, poor motor skills, can't write and barely read. TheDisabled American Veterans is willing to help me make the veterans administration more aware of PPA and alheimzers in relationshhip to agent orange. Can anybody out there help me?
ReplyDeleteMy husband was just recently disgnosed with PPA. Of coyrse, the VA is not recognizing ahent orange as a contributor to this condition. Were you able to find out anything in your search? How is your husband doing?
DeleteMy husband was just recently disgnosed with PPA. Of coyrse, the VA is not recognizing ahent orange as a contributor to this condition. Were you able to find out anything in your search? How is your husband doing?
DeleteMy husband was an airborne ranger in Viet Nam. He was with the LLRPs and spent many missions behind enemy lines, He was drenched with agent orange. He was diagnosed with PPA three yrs ago and has gotten progressively worse. He was a IBM engineer and now can barely speak or remember . It is a tragedy. the VA needs to recognize the connection between Agent Orange and PPA.
ReplyDeleteI agree. My hubby to vietnam vet with PPA
ReplyDeleteI agree. My hubby to vietnam vet with PPA
ReplyDeleteMy father is a Vietnam vet recently diagnosed with PPA. He is 72, but has been symptomatic for about 2 years. His wife, my stepmother, has been in denial and completely uncooperative in seeking diagnosis and treatment. I believe there is a connection with Agent Orange exposure as well.
ReplyDelete