Newby in the house

Hello to all my new PSP friends. My wife was diagnosed with PSP a month ago. She was originally diagnosed with Parkinsons about 2 years ago, but was re-dxd with this wonderful little disease last month. Who would ever think that one could be wishingt to get Parkinson's back? She just turned 52, and I believe this all started at least 3 years ago. I have been alternating between reading all of your posts, and reading a lot of medical info, studies, etc. I am looking for the loopholes. Have not found any yet. Still trying, desperately, to get my head around this.

My wife and I have been together since we met in High School. She is the love of my life and a beautiful, whip smart and high energy lady. A supermom and grandmom and world-class teacher who quit teaching 3 years ago because she couldn't stand at a blackboard or keep up with her students anymore, and couldn't understand why. She has been relegated to a walker around the house (which has dramatically decreased her falls vs. a cane), and a wheelchair for any distances over 100 yards. And as bad as that sounds, I realize that she (and I) are luckier than many others who have or are dealing with this dread disease: She is only in mild pain (neck rigidity), has no cognitive decline, and has blepharospasm, but no gaze palsy. And I have good insurance, and the ability to work from home most days. So as crazy as it sounds, I believe I have a lot to be grateful for (Hy, she married me and has tolerated me for 35 years, and that is more than I could ever wish). We have 4 wonderful and supportive children, and two beautiful grandsons. Two of our children are still in high school, and I worry a lot about what lies in store for them and us as this disease progresses.

Reading all of your posts has been educational, insightful, and terrifying at times. But I cannot tell you how helpful it has been, and how much I have gained from all of your posts. I only hope I can face the future with as much patience, love, hope and tolerance as I have witnessed in all of your correspondence here. I look forward to participating and I thank you all for your support and your sharing.

18 Replies

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  • Your wife is far too young to be dealt this card........ my thoughts are with you and your love. I too have found so much on this forum and it helps me face my coming problems.


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  • Welcome to the site, unfortunately you had to find it. You'll find the "collective intelligence" here will give you more insight then most doctors will about the disease.


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  • Welcome. I relate to so much you say. When Chris was diagnosed my brother in law texted me " you have managed to find something that makes Parkinsons good news !! "

    Where we are luckier is that he was diagnosed just before his 80th birthday, in 2013. My heart goes out to those who face this so much younger.

    He had had problems for about 3 years but was walking, talking and eating.

    Now he can only walk a few metres with my support. talks very little. incontinence issues and needs his food chopped small, chokes.

    We also have a good marriage, 55 years,- 3 lovely children and 10 grandchildren. But its tough.

    You will find good information and incredible warmth and support here.

    love, Jean x

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  • I'm so sorry that you've had to join this site, your wife is far too young. Your gratefulness at the situation is admirable.

    You will find the most wonderful people on this site, everyone is there to add their bit. We're all at different stages of PSP with our loved ones, but unfortunately the trajectory is the same.

    All the best to your and your family.


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  • Welcome to the best site ever, everyone is so supportive, your wife is very young, my heart goes out to you all. My husband was diagnosed in 2014, but we are sure that he had signs of it more than 3 years before. Yvonne xxx

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  • Dear Dickwin, my heart goes out to you and your brave wife. Ironic how we wish it could be Parkinson's. Maybe one day there will be sufficient funds to find the answer to this dreadful disease.

    In the meanwhile keep positive and draw some strength from this group knowing you are not on your own.

    I love your grateful spirit.

    Althea πŸ’›πŸ™

  • Welcome to this site, although I'm sorry you have to avail of it. PSP unfortunately has no regard for age.

    Best wishes Nanny857

  • Hi dickwin. Similar story here. Originally parkinsons and then 4 years ago psp. Its a hard road but always come on here for help and advice. The collective knowledge is better than most professionals. All the best to you both.


  • Welcome to you and your wife. So sorry you have had to join us but this is a brilliant site to get support and practical information on living with PSP

    My hubby was diagnosed 2013 - though on reflection clearly had personality changes for 4 years before that. Our son was 15 when his dad diagnosed, it is a tough illness for young people to live alongside .

    Love Tippy

  • Welcome to our journey, many of us are in the uk but the exchange of ideas is invaluable, i am amazed how many sufferers of this illness have been exceptionally talanted bright motivated people usually having lived healthy lives,


  • You are both too, too young to be dealing with this. My husband was diagnosed at 66 after 4 years of symptoms. My heart goes out to your family. I can only echo many of the previous replies. Our kids are grown but we have grandchildren ranging from 19 to 3. I'm continually touched by their love and compassion for their Papa. They are so patient and helpful.

    Love and prayers,


  • I wanted to give a big Thank You to all who have read and responded to me here.

    I am better informed from having found this site, and I am now feeling more at ease as a result of all of your kind words. It's one day at a time and it is different, in the particulars, for everyone. I am not feeling quite as scared as I was a few days ago. You have all collectively lifted my spirits. I hope to become a regular on this site, and I can only hope that I can be helpful in the future.

    Thanks again,


  • Your life will continue to change when new symptoms appear. Your wife is very young my husband was 67 he is now 71. He cannot stand or walk. He is DX CBD. Hope all the best for you and your wife. πŸ˜‡

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