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My husband was diagnosed with PSP in August of 2015. As with so many others on this sight, I came looking for information that Doctors would not tell me. I appreciate all those who share their trials and tribulations. So far my husband hasn't changed a lot but I see little things that before I made excuses for. Now I realize it is PSP. Thank you again, I read all the posts, and I am very grateful for all those who share. My husband is 64 years old. A very strong and vibrant man!

14 Replies

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  • Welcome. Enjoy the company of your man and try not to worry. Best of luck, ec

  • Welcome to you both. My wife was diagnosed 4.5 ye ago and was fairly well until 3yr ago when PSP started to play hard ball. My one piece of advice while he is still reasonably mobile and not to bad with speaking and eating do the bucket list get the good memories photos together (essential as too often only one of us in the photo selfies are brilliant) these will help in the awful times that will come.

    Good luck use this site for information and as a kicking post as needed. Tim

  • Well said Tim!

  • Hi Wgrape and welcome. We didn't get any info from our neurologist either, just told to look up PSP Association's website. Enjoy your time together now and make lots and lots of happy memories to look back on in years to come.

    Happy New Year. Love Nanny857xx

  • My hubby now 65 had 2 good years and we did as much if our bucket list as we could. I am sure we did stuff we might not have done had we both stayed well. If you can do it now.

  • Hi Wgrape. I agree with everyone else. Do what you've always wanted to do together now. Once PSP takes its relentless hold you will regret not packing as much as possible into your husbands mobile time. Good luck and we'll meet again on this site sometime in the future. God bless. Marie

  • Hello and welcome, I agree with others and get to do as many things you enjoy together, as PSP progresses it wont be possible or at least very difficult. Kate

  • Hi Wgrape, welcome to our group. Like in your situation, we were given an old print out outlining what CBD is and asked if we would participate in a study which would entail bringing my mother in law into Toronto every 6 months. We have done that twice and I dont think we will do it again.

    I actually send weekly e-mails to her specialist detailing the changes. She writes back telling he the priority is to keep her comfortable. REALLY!!!!! There is so much they don't know about PSP/CBD they don't know the daily grind, they don't know the struggle, they just know the clinical. So I keep on letting them know what they are.

    Keep your husband moving, keep his mind active. Do what you have alwasy wanted to do, check off your bucket list.

    I am not the kind of person to bury my head in the sand and wait for the sky to fall, I want to have the net in place when it does.

    Best of luck, welcome to the most knowledgable group of people that will help you, they have helped me and for that, I am grateful

    Paola

  • As usual, what EC said is also my thoughts! She so smart....as with all of us who have to experience, learn, relearn and then teach others......If I may add one more thing find activities that allow you to get away from PSP for a while, NannaB entered courses that helped her to learn new things (and take her mind of the disease for a moment) like the Ukelele or take a trip with friends.... A happy you is a happy him ! If you are both able to do stuff together....do it, now!

    and remember to pray. God is there for you and your husband ....I will leave you with a some verses that are strength and comfort to me...

    AVB

    Cast thy burden upon the Lord , and he shall sustain thee: He shall never suffer the righteous to be moved. Psalm 55:22

    If any of you lack wisdom, let him ask of God that gives to all men liberally, and denies him not: and it shall be given him. James 1:5

  • Beautifully said and very comforting! Thank you!

  • Welcome!

    Be strong it is progressive but not predictable! You seem to have had a relatively early diagnosis which will enable you both to access services rather than be crisis managing, enjoy this new year!

    Julie and Rog x

  • Welcome. I agree with everything said, especially making every moment count whilst he can talk. For us it was travelling whilst he could. I also made videos and it is now so good to see them of him moving ,laughing and talking. Many of him filming me and saying he has turned it off and me getting snappy. These things are so precious later.

    love, Jean x

  • My husband is 60, has been diagnosed in 2014. The illness is progressing very quickly now. It is getting harder to cope.

  • You are lucky as it seems they realised what it was early on. If you can call two and a half years early? My husband was diagnosed in December 2015 and sadly died a couple of weeks ago. However looking back his walking was not right for 12 months before then. There were also other things. Like where did all my matching mugs go? Lots of little things but of course they were pointing to PSP or MSA or maybe both?

    His death cert said MSA as that was his last diagnosis. I had to tell them I wanted it on the cert! They wouldn't have put it on otherwise. It is important for us all to remember that these progressive neurological diseases won't be recognised until we make sure they go on the death cert.

    You are a long way from that however. Your husband sounds relatively well at present. So as everyone said enjoy life while you can.

    Sorry to have to welcome you to this site. However everyone is very kind and helpful. Like you I was never given any information. I would have gone mad had it not been for the good people on here.

    Marie x

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