I am new here although I have been following you for a few months

I have been following your discussions for a while now. In fact, I tell my family I am addicted to this community. We live in the US so I faithfully read your posts while drinking my coffee first thing in the AM. My husband was diagnosed with PSP almost 4 years ago after 2 or 3 years searching for a diagnosis. He has been under the care of Hospice at home since May. Two days ago he came down with UTI. During the early hours of Sunday we went into respitory distress with very rapid and shallow breathing so he thought he was dying. He is much better today but I know these things can happen suddenly so I am trying to prepare myself for the next one. I admire all of your for your humor, compassion and knowledge.

12 Replies

  • Welcome to the family, we are all traveling this horrible road, my husband was diagnosed in 2014 been very difficult, without these lovely people I would of given up. My husband was in hospital with pneumonia, for 4 days, then let out, with nurses coming in 3 times a day, all gone well, he was discharged today, with more antibiotics to take for the next week, he is so tired, can't stand to transfer now, hopefully once he is better he will be able too. Welcome once again, we can all travel this road together. Yvonne xxxxx

  • Gosh, how have you managed? I would have floundered at the first hurdle, without this site. S's consultant told us to Google, PSP, when he told us the diagnosis. No other professional has given us any knowledge what so ever. Without the good folk on here and PSP Association in the UK, we would still be in the dark.

    We don't like to say we are addicted to this site, just concerned about our family, but yes, I visit this site quite a few times each day. It stops me going mad, thinking I am the only one going through this hell and there are others that have the same rare condition as my husband.

    I hope your husband is recovering well from his chest infection. They suddenly hit, don't they!

    Please keep in touch, we all need each other, to help get through this journey, that our loved ones are on.

    Lots of love


  • Welcome Marph, I was like you and watched the site for some time, then once I wrote my first post I too became overwhelmed with so much support I didn't feel alone anymore. I realized that the so called 'rare' disease is not so rare at all.

    Sorry to hear about your husband and I am glad he is feeling better, but rest assured you will have an arsenal of support and information right here.

    You can yell, scream, rant and support all in once place and no one will hold it against you.

    Sending you a ton of hugs and support from Canada

  • Welcome. My husband was diagnosed Sept 2013

    I also read for a while and then joined in. Its often my safety line. Its good to share the worries and black humour. Despair is ok. Anger very ok !!

    Love, Jean x

  • I should have mentioned in my original post that I am VERY fortunate that we bought Long Term Health Insurance when A retired so now we have an aid from the time he wakes up in the morning till he goes to bed. I could not do it alone. i could not handle him physically by myself for sure. We paid lots of money for it for 15 years but now it is all "free". Thanks for the welcome

  • Welcome Marph and thank you for telling us about you both! You will find out everything you need to know here and when you need to scream (we all do regularly) we will support you! I'm pleased (that is actually extremely pleased) you have healthcare cover and that you have plenty of help! Psp is not easy or in fact possible to manage with just one other person! In fact there's mum and me and the carers 4 times a day and district nurses every night, but still sometimes you wanna scream because more help is needed! Sounds crazy really, but true! Do keep posting , you've found the best family on the web!! X

  • Welcome and best wishes to you and your husband. I'm glad he seems a little better. Those down hill turns are really frightening. We are also in the US, Fresno, CA. Take care.

  • Hi marph. Wekcome to this site. Wonderful place. Good to hear your husband a little better now. Every day is a new experience. Take care. Marie

  • Hi Marph join the roller coaster,as you say ,friendship ,advice ,humour,and compassion all available in abundance here .


  • Glad to hear that he is doing better today (:

  • Hi. I have been on this site for about 2 years. My husband Bill was diagnosed in 2011. For the first few years we just went along. Then he started falling a lot in 2013 and it was consistently downhillfrom there. He went to heaven in July. The last 9 months were a very quick and severe decline. However for the last two years I often read this site. Emotionally I was unable to participate until after Bill left and then not a lot. The comfort that I got and the security was unbelievable. You see we are all going through the SAME thing. And unfortunately it all ends the same. But this site affords you whatever you need. Just to read. To cry. To ask for help. To respond. To spend as much time as you want with it. The responders are here for you. And someone ALWAYS responds!! It is unbelievable!! Take care. You have my prayers. By the way I am in the Chicago area.


  • Thanks for your kind thoughts. I am sure this site will be a great support for me. I live in Florida. We left the Midwest about 20 years ago. I still miss autumns in Michigan,


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