I haven't posted in awhile. I tried to get to a PSP support group for caregivers in my area. I felt frustrated wondering what was going to happen next. I feel so ill prepared although I think I have read everything on the internet, including medical professional forums.. just to know what more I was in for with my husband. I did have a private chat with my husband's neuro, who also has a PSP sub-specialty. Considering his current condition, he surmised that he wouldn't be walking by the end of the year. And then maybe 2-3 years at best. I know that everyone is different, but with the benchmarks he described, he has been really accurate with this sometimes vague and inaccurate disease. So I wanted to find others who were having to cope with this disease. So I attended a support group that was very well attended but not one caring for PSP. It was all Parkinson's. The group leader was the only one who had dealt with his wife's PSP that had passed several years before. He did try to draw some similarities with Parkinson's to PSP for my benefit as a caregiver but it just wasn't enough. I've done the talk therapy with a psychologist and got to everything I could with her. I have been reading everyone's posts for a couple of years, which has been helpful. Sometimes it helps talking with someone face to face who truly gets it. That is why I am grateful that you all are here... because you all get it. Thanks for letting me rant. God bless you all.
Ranting time about a confusing time - PSP Association
Ranting time about a confusing time
The only reason I am still relatively sane is this website. It is so frustrating to have to figure out where the person with PSP is in the progression of the disease. Some days I think Larry is in bad shape then a few days later after he’s gotten enough rest he seems better. Up and down back and forth the on going roller coaster ride continues. We all know where you are.
So true! I took a break from the website because of ups and downs. Mostly downs. I think I’m just tired. I’m watching my husband sleep right now and sometimes I wonder if he’s breathing. Then After no movement for what seems like an eternity I’ll witness his arms flap up in midair and he’ll groan. Bad day, worse day. Ugh...
Like you, I read everything I could get my hands on and in my head, thought I knew everything there was to know about PSP but reading it and living it are too different things. I knew my husband would become doubly incontinent but I wasn’t prepared for the first time my husband urinated on the bedroom carpet. Or the first time I had to clean up my husband’s bowel movement (putting it politely) with no change of clothes for him, gloves for me or wet wipes, in a disabled toilet on the sea front. However prepared I thought I was, reality told me different. All that said, I survived until his departing. As Jeff166 said, PSP is a roller coaster, a few days or weeks climbing up, then on the straight giving you a false sense of security and then a sudden dive when you have to learn how to cope with new things and so it continues. All I could do as a carer for 6 years was go with the flow. I cried and shouted at God ( never at my darling) and laughed a lot with Colin joining in. Surprisingly I have many happy memories of things that happened during those 6 long years and hope you find the same.
Best wishes
XxxX
Rant away. We have all been there and have all felt as frustrated as you do and that is where this forum is so wonderful. No one judges you and everyone understands where you are coming from. Nigel had CBD not PSP but they are pretty similar although what I have learnt is that no one's disease progression is the same. Try and take one day at a time and enjoy the good days as jeff says. Try and keep a sense of humour as it will see you and your husband through, because losing one's ability to do even personal things for oneself must be horrid. I agree fully with Nanna B's reply. Nigel was so embarrassed when he became incontinent but laughed when I told him that I had worked it out that the only reason he was doing it was so that I could tell him what a lovely bum he had. It's a mad world we are all in and yes one can frequently feel insane, angry and scared. Try and concentrate on the here and now because if you worry too much about the future you will miss what you have now. I would have anything to have Nigel back the way he was even a year ago. Although, at that time, life was still very difficult we could get stil out and enjoy a drive or a walk with the wheelchair by the beach followed by fish and chips on the sea wall. Yes get all the info you can - the PSP booklets are brilliant especially the one for Occupational Therapists - so that you have the info to hand for people who will need to help you with his care as you will be far more knowledgeable than them, and you will need to get them to understand that you know him better than anyone else as you are with him 24/7. If you need some good reading though there is a brilliant book called The Selfish Pigs Guide to Caring. I giggled my way through it and Nigel joined me in many of the giggles too when i read bits to him, because it says all the things you might be thinking but no one talks about. Good luck and big hugs. AliBee
Just bought the book and it’s so good - thanks for the suggestion. I’ll share some if it with Mike 😊
I have been caring for my wife for nearly three years (nearly 2 years since diagnosis) I am happy to share my experience with anyone. Please pm me if you want to chat. My name is Rob
Hi, I was like you, wanting to know the time scale, what, where and when. Took me a while, but with the help of everyone here, realised that whilst I was searching for what might be, I was actually missing things that were happening. The easiest description would be, it's like having a new born baby. The books may say one thing, but only you know that your baby is crying for food, even though the time in the book says different.
I agree you have to be prepared and to actually meet someone going through what you are, is brilliant. Coming from the UK myself, I can't help you with support groups, but ask on here if there is anyone close to you. Try the other on-line support groups, Facebook, CurePSP. Ask at your husbands hospital, anybody that is dealing with his illness. For a rare disease, there are actually quite a few of us around.
As for this site, I don't know how I would of survived without it, even now, 2 1/2 years since my husband died, I still need my family here. I got involved very quickly and I am definitely not the type of person who normally would have anything to do with forums, but it has helped so much, practically and even more importantly, mentally. I would post, in dire straits and at least one reply would make me laugh and put everything in perspective. Giving support to someone that has been up all night, changing beds etc., knowing that's how you had spent the night is just as comforting. We can't come and have coffee with you, but at three in the morning, when life can't get any worse, there will always be someone on here to have a chat with. Where else can you do that??? We all rant and rave on here, equally we give support and love when needed. Everyone here needs your support, just as much as you need us. At this very moment, there are quite a few, sitting down with a cup of coffee, reading your post, thinking exactly the same as you. Not everyone joins in, but you have given comfort to someone knowing they aren't alone in this lonely journey called PSP/CBD.
It really is one day at a time, forget the books, the time scales. Concentrate on what your husband can do today, go out if possible, invite people in, what ever is suitable for you both NOW! There are lots of tomorrow's to get through and they aren't going to be pleasant, so make today the best you can and treasure the memories.
Sending big hug and much love
Lots of love
Anne
Agree with the others. I also found out everything. When it happened it was worse than I imagined but we got through it together. Chris died 18 months ago and until the last few days he rated his quality of life as acceptable., although he wouldn't have believed it possible at the beginning of PSP
Like NannaB reality hit us when he wet himself on a station platform with no facilities. He had to travel home with wet trousers. We survived and the sky didn't fall in. No one noticed!
Lesson learned about planning ahead. As Anne says - it's like having a baby again and realising the experts don't know about the reality of caring.
I was lucky that Chris was very easy going and appreciative. We had lots of laughs and were very close during that dreadful time.
Make the best of what you have.
Rant away. I expect you can do a better rant than that anyway !!
Love Jean xx
So many similar stories. So thankful for this group but still feel isolated as far as personal contact. Where are you located. PSP is so rare it seems hard to get a group formed. ❤️
I am in Orange County (CA)
Just long distant support. Nebraska here. Take care.
Uscarol, you said you had a rant, there probably will be a time when you have a rant and rave, but reading your blog, (over what is now my time with coffee and hubby fast asleep in the hospital bed next to me),
gave me such relief as I have had a bad day with his lap too, he also has infected eyes from dry eyes, which I gather from others here, that it's another part of psp, you see the doctors never told me that, just told me to bathe them morning and night and drops every hour, never thinking of me already having enough to cope with, but I know every one here can feel for me, which is where I get my solice from, so now I have had a little rave and feel so much better. I don't write that often either but read this site every day, I feel all your hugs and send them back with love, so keep writing and let's share all our experienced knowledge, thinking of you Jean xx
I believe ranting is good for our souls... this is a safe & loving place to rant & rave. Been there done that...
Sending hugs... Granni B
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