Glad to have a place to share information!

Hi, I'm new here...my Dad has PSP. He was originally diagnosed as having Parkinson's about 10 years ago and re-diagnosed as having PSP about 5 years ago. He has been an independent, active and positive person his whole life but living with this horrible disease is taking its toll. He is 85 years old and "progressively" has reached the stage of having every symptom of PSP. We recently had to move him into a nursing home, mostly for his own safety. The sorrow and guilt has been, at times, overwhelming. Glad to have found this forum to share information.

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  • You are very welcome. I would like to say, though, as I have said to my sweetheart, something takes us all, and psp, awful though it is, is very far from the worst thing. We have time to cherish our loved ones. I know many who haven't. Be brave and well. This site is wonderful, and everything you add to it helps us all. Stay in touch, please. Ec

  • Welcome to the site, the guilt and discomfort of moving your loved one into a home is natural, my wife has been in a nursing home for exactly a month and though I am getting into a routine it is not the same as being at home and I still feel low and guilt ridden. I do not like being told by professionals that I will get over it, but they are probably right but it is a form of grief and change that must be taken.

    Best wishes Tim

  • Of course, you know it, Tim. The grief at losing your spouse is profound, even if it's by degrees. I don't know that one ever entirely gets over such a loss, or the loss of any loved one, however it comes. We learn to survive and the pain becomes more manageable. I think your wife is fortunate in this one great thing: being so loved by you. Hang on. Love, Easterncedar

  • Hi Tim

    Just wanted to let you know I'm thinking about you and your wife. I too suffer from grief when I have to do something without the aid of my husband. He is sitting right next to me practically, and that''s all he does.

    I find the hardest thing without him is not building the fence or talking to people on the phone or making sure this and that gets done....though my bobble head does often forget.....The hardest thing for me to do without B...are the bills....Numbers are not my forte and boy it's ever evident at these times! It's more fear than inability or even or maybe not fear but hatred thereof! Two things I really have to kick myself to do are the aforementioned bills....and eating! Now that B has a PEG tube I find myself never cooking and thus not eating.....I find myself crying more too at my loss...I don't know if it's more.....Tim I know you did the right thing...I know words don't make it any easier.......God Bless you , darlin

    AVB

  • Wow Sue , you; your dad has been living with this for a LONG time! I too am glad that you found us. This is a very good site. I take it by now, you know all the ins and outs of PSP, but if you need some extra resources, CurePSP.org is a good place to go.

    Do not feel guilty keeping your dad safe, even if that means keeping him in a nursing home. I can't imagine leaving my 85 year old loved one by themselves with this disease. I don't even leave my 56 year old loved one for very long ! Do you feel like he has had PSP all during the diagnosis of his disorder? or do you feel like he had PD first and then acquired PSP 5 years ago. At any rate, welcome...this is a guilt free, safe place for Carers and patients (who also write on this site).

    We're hear for you , Sue

    AVB

    Cast thy burden to the Lord, and he shall sustain thee: He shall never suffer the righteous (that's you Sue) to be moved. Psalm 55:22

    And let us not be weary in well doing: for in due season we shall reap and faint not

    Galatians 6:9

  • Hey, Mrs. Birke. I was wondering how you and your husband are doing, not having seen your name here for a while. How are you?

  • Hey EC! We went to Arizona to see Bruce's parents for his birthday.

    The drive out there was spectacular. Went through OK, TX, NM, and finally AZ.....I love New Mexico! My cameraphone did not do justice to it's beauty! B had a good time....only broke one thing while there...hahahaha. He got to see two brothers his mom and dad and me.....It was nice....Thanks for missing me . I missed you all too!

    AVB

  • I dream of driving out West some day myself. So glad you had a good trip. But how did you manage the logistics? We hope to drive from Maine to Minnesota in late summer. The catheter is a requirement for that, as far as I'm concerned.

  • The catheter is a requirement for what, driving? I agree...,... I don't know much about it except to say that I would probably want a van to help evacuate in the most comfortable and private place possible. If I had a do over I may have rented the much more expensive van. The way down to AZ he fell once; there at AZ he fell once; and on the way back he fell once. Logistically, It was like taking B anywhere else! But some abilities are still afforded him which makes long durations in a car doable. For Bruce, logistically, this was the perfect and maybe last time to appreciate the company of his family.....

    I do hope you will get to realize your dream.

    AVB

  • Yes, the catheter is a requirement for a road trip. Last summer we had an awful time at rest stops on a 12-hour drive back from a visit to my home. Difficult and anxious. His condition is much worse now, so the rest stops wouldn't be possible anyway.

  • My son is a landscape architect. They must know ADA code like the back of their hand. One of his profs who has a wheelchair bound son says codes are a joke. Not so much the code but the enforcement thereof. People who make code aught to try to use it first. Take a road trip in a wheel chair and see how well code is put in to use in public places. Even get volunteers of disabled folk to assess places and turn findings in, like OSHA does.

    20 minutes down the hall...I have no helpful hints....maybe a transport chair! We fell only once last night trying our midnight run but luckily I fell into the closet where clothes broke my fall! Now that I think of it it probably took us about 10 or so minutes to get down the hall....he's losing the ability to figure out how to get up on to his knees.....

    Love ya EC,

    AVB

  • We just spent 20 minutes walking the 20 feet to the bathroom here at the weekend place. Every time we come I wonder if it's the last.

  • Thank you! We think it was PSP all the while as he never had the tremors of PD and the medicine he was taking then seemed to do more harm than good. My Mom has been caring for him all the while; they have been married 62 years. I also have 4 siblings who are caring and help where they are able. Three live in the same city as my parents and two of us live far away. We get together every 3-4 months though. We had wonderful assistance from Home Care workers for about 4 years and last year we hired a private nurse to come in, but even all of that help was not enough to keep my folks together. Dad knew the day would come when he needed to go into care and he understands that my Mom is overwhelmed, but he is lonely there without her and she without him. His mind is still good most of the time, it's his loss of body movement that frustrates him. Thankfully he's a positive guy and has a strong will to live. His greatest fear was losing the ability to communicate; we were able to rent an IPad that talks for him which has been a huge blessing. With the eye and body movement problems it takes a long while to have a conversation so patience is needed. He phoned me late last night to say that he "loves" the nursing home workers, is getting great care and couldn't be happier with the arrangement - I am so relieved! One day at a time!

  • Wow, did you say you were going to donate his brain.......he has something that most do not; that is longevity! What has kept him strong and enduring? Does he have something else going on in his brain that allows for some (not much) healing...is the TAU affected differently or have a different effect on brain? Is it in his genes? My mind starts whirring ...please forgive my intrusion.

    Your dad , I would say, is an anomaly (a good one) in that he has lived with this disorder/disease for so long!

    I reread your post and realized that he has been suffering 10 years, diagnosed 5 years ago. All the same at his age and with PSP not having a long history, your dad is doing great (forgive me, "great" may be an over-description) Even if he has to be in a nursing home ....

    It is good that you all can use an IPAD....He actually called you? Wow , I have been thinking about a pad for my husband....he says he won't use it and I am so tech -knowledgy deficient, I'm not sure I could help him! However I would like to know more :)

    Take care and God speed

    AVB

  • Lol! I'll have to ask him about that donation. His ancestors are all from the UK, Ireland and England. Most lived to be in their late 70's. He thinks his Mom and Grandpa might have had PSP but didn't know what it was at the time. From what I've researched PSP doesn't take your life, only your quality of life. He is strong minded and health conscious - even in the nursing home he watches that he doesn't get too much salt or sugar, processed foods, etc. He does have some dementia now but it seems to come and go. We call it "Dad zoning in and out", good one minute and not there the next. And yes, if you can, get an IPad that has the talking app. I think it makes all the difference in that he can let us know what he's thinking and is not trapped in his own body. He one finger types what he wants to say and then the IPad speaks it. Sometimes it takes hours but he's still communicating. We know that he knows what's going on around him and he's interested in life. Mom rents the IPad from a hospital and they keep it up to date and maintained at $20.00 a month CAD. It's the only app installed on the IPad so is easy to learn to use. And he can type his thoughts and phone me!

  • Yes exactly, PSP robs the quality of life....I am glad your dad can retain some of it through using the IPAD though...cool!

    AVB

  • i gree an iPad s great 4 communicating with - u c\an get the Proloque to go app - its great for turning txt into voice

    ol jill

    pspp person in UK

  • Is that what you use, Jill? My guy has such trouble with his hands and eyes, he doesn't type anymore, but as his speech is fading, perhaps the motivation might help! Love, ec

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