PAP Progressive Supranuclear Palsy

My 70 year old husband has PSP and we are finding this rather difficult. His walking,speaking and writing has deteriorated rapidly. Any advice please?

[MAS_Nurse]

Hello Diggory's.

Welcome to this community. I am sorry to hear about your situation. This is a supportive community, maybe if you can tell us more about your difficulties our members may be able to offer support and give information.

The PSP association at pspassociation.org.uk 0300 0110 122 may also have more information and support.

Do take care and keep in touch with us

[rogerscountry]

I am sorry that you are going through this with your husband. My father was dx 15 years ago with this disease and passed away this past January at the age of 79. While I am the daughter and I did not do direct care I saw my mom, my sister and my brother do a great job. My encouragement to you is first, always take care of yourself first. It's like the oxygen mask on the plane, to be a good caregiver you have to have your oxygen on. This means don't ignore any of your medical issues. Allow help where you can. We also made a decision very early on that we would take a Palliative approach to dads care. To us this meant no aggressive treatments. I work in the medical field and I see more people suffer from aggressive treatments then the disease. We got dad physical therapy and speech when he went downhill. He didn't love it but I think he went because he knew he actually did better after. We also tried and let him live as normal of a life as possible. We lived in a very rural area so that was helpful. While I didn't always like the choices he and mom made I see how it helped his emotional state. My mom let him go down and feed my brothers pigs and chickens alone and a couple of times he fell while doing so and she would have to go find him and help him back. That is a tough call but find ways to let him be human and a man even if he messes it up. One month before he died, my brother accidently left the keys in the truck and my dad saw some pigs out of the pen, he went and got into the truck and drove down to the pen like any "normal" day when he was younger. He even tried to run! Fell on his face and had to be helped back up. He told the hospice nurse he wouldn't do that again because "it hurt"!

So having said all of this relax as much as you can, you may not wish to be on this roller coaster ride but you can enjoy the small laughable things and enjoy your time together as much as you can. And don't forget to live!