First post

[Traveller45]

Hi. I’m new here. I’m a carer for my husband who is entering into his 7th year of MSA and showing signs of PSP. For me I can really see PSP more so than MSA. Whatever it is we are dealing with, it is pretty horrific at times. I’ve been reading what others have to say and it’s such a relief to read I’m not the only one dealing with all the emotions one can feel in a day or maybe even in an hour. It’s also comforting in a way to see by reading other’s comments where we’ve been, where we are now and sadly where we are heading. I must say, I had to have a little cry when I found this website.

[AliBee1]

Glad you found it, Welcome to this wonderful international family. Big hug. AliBee xx

[Hidden]

Welcome to this site of caring and understanding new friends. Questions and venting are never judged because (more than likely) we have had the same thoughts. Sending hugs to you & your hubby... Granni B

[Caro2132]

Welcome to this site. It is the most helpful - any question can and will be answered, advice given, ranting accepted and genuine caring provided. All of us here are either going through or have gone through the same worries, emotions etc. Let us know where you are, this community is worldwide. Glad you found the site, it’s a life saver.

Caroline

[ConcernedEx]

You’re not alone. Cry, write your feelings, breathe …….. get it all out here. ❤️

[ConcernedEx]

Best of all of this site …. “Never Judgement”

Simply understanding and encouragement.

[timbowPSP]

Hello and welcome fellow traveller. I was diagnosed PSP 2.5 yrs ago, and am 79 and still active and driving etc. My partner is my carer. So I seem to be a slow burner, and have collected a load of information about what we can do for ourselves when about at my stage of deterioration. I wonder where you/your man is at, and in which country? Anyway I will send my 3xA4 pages to you if you wish. Takes up a lot of space here, so prefer to email to you direct: but need ur email for that. Your choice! Keep reminding urself that PSP stands for 'Please Stay Positive'!Love and best Timbow

[ncgardener799]

Welcome, it is not an easy journey regardless of which disorder he has. There are many days I shed a few tears. This is the best support you will find, wonderful caring people.

[Troubleandstrife]

I am also caring for my husband. He is 67 and has PSP. We have two daughters, 15 and 19, who also help care for him, which is a beautiful thing but also makes me feel sad for them. We are currently in the UK but I am American and we have only just moved to England so my husband could spend the rest of his limited life closer to his family. I too am relieved and grateful to have found this website. My husband is still mobile, but is declining rapidly, losing muscle, can hardly see, losing his voice, and coughing and choking frequently. He has a PEG feeding tube and just came home from a hospital stay with a catheter after a suspected UTI. Somedays I feel strong and blessed, other days I feel as if I myself am dying from grief and exhaustion. The hardest part is seeing someone you love suffer as if they are frozen in their own body, under ice, unable to move and express themselves, or have any hope for a healthy future. Life feels unfair, because it is. I know so many others are going through this, and I know there is no point, but it's still tempting to ask, "Why?" "why me,?" "Wny him?""Why us.? It's also tempting to keep asking "How did this happen.?"