Any advice would be greatly appreciated

[psp2018]

Hi, my name is Hillary. I am new to this page. My father in law was just diagnosed with PSP. At first, they thought it was Parkinson's but after the MRI, it has now been determined he has PSP. Any information anyone can give would be great.

Thank you,

Hillary

[NannaB]

Hi Hillary, welcome to the site but I’m sorry that you have had cause to join. There is so much you will need to know over the next few years and any specific question can be answered here by those who have gone through and are going through this nightmare. At the top right of this page there is a box “search PSP Association”. Just one word in there will bring up all past posts relating to that but folk here will be happy to help you. There is a lot of information on websites and provided by the PSP Association that will help.

I’m presuming your father in law is still mobile, maybe with help, talking, eating etc so my advice to you and his wife if he has one, is make the most of each day. Go on holiday, do things he has always wanted to, seek out happy activities and make memories. Laugh about stupid things. Don’t become too depressed about what is to come, wait until it does but do be prepared. Think about where he lives now. Is it suitable for an immobile wheelchair user. Can he sleep downstairs with shower and toilet facilities . We converted our integral garage to a wet room with wheelchair access and my husband could no longer use our upstairs shower two weeks before it was complete. That’s something you can’t leave until its needed.

There is so much to think about but in time it will all become a “new normal”. It will be pretty horrendous a lot of the time later on but there will still be happy, funny moments. If his wife is his main carer, she will need a lot of support, time to do things for herself and friends and family she can rely on.

I have a plaque in my hallway that greets me as I go downstairs which reads, “ Life isn’t about waiting for the storm to pass, it’s about learning to danc in the rain”. That got me through the 6 years I nursed my husband.

Very best wishes.

Nanna B

[psp2018 in reply to NannaB]

Nanna B,

Thank you.

My father in law is still very mobile. He is not as active as he used to be but is still able to drive to town once or twice a week, he mows the lawn, and that is about it. We are still waiting for his physician to get back to us about some clinical trials in Denver, Colorado. His physician is not sure whether the disease is too far along or not. So we are hopeful to hear something back from the specialist.

My in laws house is a 2 story house but the main floor has everything on it that he needs. My husband and I will start doing all the outside chores that need to be done when that time comes.

We need to talk to my in laws about their wishes but my father in law is still angry and still needs time to process what is going on and what is to come.

Thank you so much for the information you have shared with me. I greatly appreciate it.

Hillary

[Dadshelper]

Sorry you had to find the site but it can be extremely usefully. Use the search box at top of page and ask any questions you may have. There are people from all over the world here and in multiple time zones so normally a question gets a reply rather quickly.

Get your father in-law to exercise, it is beneficial. At some point when the diagnosis shock wears off some, start thinking long term. Find out his wishes for medical care, appoint someone in the family legal status to make decisions in the event he can't (Power of Attorney. etc). Depending on where you live find out what types of caregiver/in home support you have. Try not to get overwhelmed, every issue will have an answer, some just take longer to find...

Ron

[psp2018 in reply to Dadshelper]

Thank you

Hillary

[raincitygirl]

Hello Hillary and Welcome to the site

I'm sorry to hear about your father in law. Aside from reading past posts on this site for overview information on PSP read the PSP Association website (UK) which I think is the best, and CurePSP (American) which also has good overview information.

You'll often find you get more responses to specific questions or topics here. The whole subject of PSP or CBD seems to be so big that it's hard to tell a newcomer "everything" ! (Though NannaB does a pretty great job, eh?

Most of all, we'll be here to support you. Keep in touch and let us know more when you're ready.

XXX

Anne G.

[psp2018 in reply to raincitygirl]

Thank you for your kind words.

Hillary

[LuisRodicioRodicio]

Hi Hillary!

I'm sorry PSP has entered your family.

By private internal mail I send you some notes about our experience with PSP with the hope that it may be useful.

Regards and luck.

Luis

[psp2018 in reply to LuisRodicioRodicio]

Luis,

Thank you so much for the information you sent to me. I am going to share that information with my husband and mother in law. My father in law is still in the grieving process, he is very angry and doesn't talk to anyone much. I can't imagine what he is going through but I am trying everything I can to help in some way or another. Again, thank you so much. I really appreciate your message.

Thanks,

Hillary

[Donnasue1]

Hi Hillary, not sure where you live, but if your father-in-law is at the beginning stages of PSP it would be imperative to make an appointment at a major University teaching hospital. They are having clinical trials all over the U.S and there is a possibility of having the progression of the disease stopped. There is no cure, but controlled would be of great benefit to the patient as well as the family.

Good Luck,

Donna

[psp2018 in reply to Donnasue1]

Donna,

Thank you so much. We believe he has probably started with symptoms 2 years ago. His doctor is speaking with a specialist in Denver, Colorado. We are hopeful to get him into some clinical trials.

Thank you,

Hillary