Thank you all so much - it's good to know that it's not something I'm doing 'wrong' but related to this horrendous illness. I think it's all getting to my husband now as he says he really doesn't want to live like this. B's really worn out with being worn out and exhausted all the time. It's so difficult to know what to do for the best. I try to encourage him to get out and about but just getting ready is a trauma in itself, then knowing what to wear so that he's comfortable, and then worrying about him falling over .... it's all taking its toll on both of us. We're having a very low day today as he's also got a cold so everything that he usually feels seems to be magnified. Perhaps tomorrow will be better - I can always hope.
Hot and cold follow-ups: Thank you all so... - PSP Association
I was saying the other day I have been to burnt out and back any number of times over the last few years. We all know how you both feel.
Hope for the best, try to prepare for the worst. If you can have someone come in to give you a break, even if only for a few hours so you can get some "me time". On days where things aren't going so well, take it easy, just sit together and watch funny movies or something. I know you want to squeeze every moment in you can but it'll do neither of you any good being worn out over it.
I know exactly how you are feeling as my late husband was in that same condition.He always was eager to go someplace even if it was just to the store ,but as you said,it was such a hassle.Getting dressed and getting to the car was an ordeal and then between the falling and the incontinence,going anyplace was such a nightmare for me. But now I am alone and miss him so much! Hang in there and try to be patient with him. My biggest regret is my impatience!
I'm sorry PSP has entered your family.
The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.
This disease manifests itself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.
By private mail I send you our particular experiences on PSP-RS that we hope you can find useful.
Hug and luck.
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