Is there anything to be thankful for in PSP?

The answer is yes. Example: My dear wife Sharyn never acted out in anger which is a common thing in PSP. She never had uncontrollable laughing which is another symptom of PSP. She became non-mobile about a year before her passing which was a good thing because it meant no critical falls with injury requiring hospital trips. She never experienced apathy. She was the same sweet Sharyn during PSP as she was before PSP. Her mind and memory was sharp but just a bit slow in formulating thoughts. She had only one UTI during her years with PSP. No hospitalization for Pneumonia from aspirating. No excessive buildup of saliva or choking on saliva. No severe choking spells. I'm thankful that for PSP Sharyn was spared some of these things. Was it still terrible to go through? Yes, but just think how bad it COULD be. If you read the posts on this and other sites you will quickly see you may not have it so bad after all. There is an old saying "Count your blessings". Jimbo

23 Replies

  • Hi Jim

    Yes , you are so right, I too look at some of the blogs and read some of the terrible things that others are going through and think, Harry has been spared some of these.

    Like Sharyn, he has had not UTI's, no falls, again he is no longer mobile and, thank goodness, no hospitalisation yet.

    I give thanks for all of this but I cannot thank or forgive PSP for what it has done to him. I have said before I see no nobility in suffering and I hope for his sake, it does not last too much longer.

    I hope you are keeping strong.

    Kind regards

    Dorothy t

  • Dorothy, Yes, strong is the key thing. It's hard to describe. I'm glad that Sharyn's struggle with PSP is over but in another way I'm in agony over not having her near to love anymore. Doesn't make sense. She's in a better place which I'm happy for but that doesn't mend my broken heart or the pain of the grief. Jimbo

  • Yes Jimbo, we count our blessings every day. I am so thankful that my husband, like your dear Sharyn, is never angry or violent. He still has a sense of humour, doesn't have uncontrollable laughter but does still manage his funny humming laugh when he sees something funny. The thing we are most thankful for is that he is not in pain. He is still the man I married 42 years ago. On Saturday we were given a card with statements on to help communication..I am thirsty, I need the toilet etc. the first words were yes and no. I gave it to him and said, "Do you love me?". He ran his finger over the card, by passing Yes. I was thinking that he couldn't see or read the words. He stopped and tapped the last word on the card, "Always". Yes, we still have things to be thankful for.

    Nanna B

  • Nanna, You've got yourself quite a guy there!

  • That is so nice, my sister 80 could not point to the card has very little speech now gets agitated if there are too many people around, had uti's problems swallowing eyes closed for long periods, does not walk at all now, I just keep telling her I love her holding her hand but I do hope it will be over soon for her although I will miss her alought she is only a shell now.

  • It's so hard isn't it nannygoon. I was looking at photo's taken only last year and it hit me how much my husband has changed in a short time. He is 66 and it is so hard seeing all of our friends enjoying their retirement as we thought we would. We can only continue to love those who are suffering and tell them we do, until they leave us. Your sister may seem only a shell but I'm sure she knows how much you love her.

    Nanna B

  • NannaB, I tell everyone "GO AND DO" don't wait. There are no guarantees in life. We also looked forward to retirement only to be hit with PSP. Love can soothe the person and give them some comfort and peace. Yes, looking back at the last year of photos it's amazing the change in my beloved Sharyn. I think we caregivers are so close to the patient that we don't see the change. To others it's dramatic but to us it's slight. Jimbo

  • Thank you, no two days are the same with her she can be quite bright one day then very quiet the next.

  • Hi Jim,

    I keep reading these blogs and would like to say how sorry I am for your loss.

    Your wife Sharyn was blessed to have you as a husband. It's not the same in my mother's case where my dad is very insensitive to her. I live far from my mom, in another country altogether and it's hell seeing the situation there at home. I sometimes don't know what to be thankful but I guess being grateful and counting blessings is the only way to keep sane and not get bitter.

    May god bless Sharyn's soul and keep you strong.


  • Rita, thanks for your kind words. Your mother has a difficult thing to deal with (your dad). She will need all her energy to get through PSP. I recently was on a conference call for PSP patients and caregivers in the USA. A woman called in and said "Sorry I've missed the last two month's calls. My husband left me." I'm thinking/screaming (inside) "What kind of a man does that?" However, we are all different and I think some people, even women, just aren't able to cope with situations such as PSP. This is a VERY difficult ordeal for patient and caregiver and some just aren't cut out for it. Thank God I was not that type person for my Sharyn. I wish you and your mom the best. Jimbo

  • I have struggled with myself on whether to join in this conversation and whether I had anything to offer. I have finally decided to join in. Things to be thankful for: I remember driving home after Chris was given the diagnosis and asking him to cry and scream with me because that was how I felt. He had only just been given a clean bill of health after being treated for a lymphoma. He refused then and refused to ever get angry.

    It is so much easier to find things to be angry about, but I thought I might share some of the things I am truly eternally grateful for. He managed to re-find his faith again and was able to have the comfort of a priest visiting once a week. I also, although not a catholic, found these visits very comforting. He was always very gentle and co-operative, at least as much as PSP would let him. Unfortunately he did have numerous bouts of pneumonia and breathing crises. But the comforting thing was that I have some wonderful friends, one of whom was with us during the last two pneumonia events and she managed to keep me sane whilst we called the paramedics and got Chris the urgent help he needed. You certainly find out who your real friends are when you are in need.

    He fell down the stairs the day before the stair lift was being installed and I truly thought he was going to be dead by the time he got to the bottom. Instead of that he rolled himself into the recovery position and waited for the paramedics to arrive. He didn't even make a whimper. They gave him a thorough examination and found three broken ribs, which did not need a hospital visit, so got him into his chair and, after giving me all the important information in case anything showed up later went on their way.

    I remember one occasion when, after sorting Chris out and settling him for the night, I was exhausted, as usual and so tired that I forgot to switch the monitor on, so I was unable to hear him if he needed me. This particular night, I was startled awake at about 3.00am and saw the stair light on. I leapt out of bed and found him stark naked at the top of the stairs. He'd woken up, found the bed wet and tried to call me, but by this time he was having extreme difficulty with his voice and barely getting any sound out at all so I obviously didn't hear him. I managed to heave him up and onto the stair lift seat and he then tried to tell me what was wrong. Because he could not make me hear he thought that I had died, so he somehow got himself out of the bed, past the cot side, took his nightshirt off and CRAWLED up the stairs. What is there to be thankful for in that, you might well ask? Well, he could have fallen down the stairs and killed himself, but he didn't; he was able to let me know what was wrong, and we were able to sort it out; it made me realise how important that monitor was for us, as I was having to sleep upstairs and his bed was down stairs in the lounge.

    There are so many other small incidents which I could rabbit on about for ages, but these things helped me to find the strength to carry on and remember that my Chris was still there and we were lucky to have had over 40 years together.

    The battle is over, but the pain is still there, and then I get this comforting feeling that he is still around and I have to smile............

    With love and hope for you all to find the strength to continue this long and difficult journey. My thoughts and prayers are with you. Teena2

  • Teena, Wonderful stories. You certainly did a good caregiving job. Chris and my Sharyn would have got along well. Seems their disposition, even with PSP, was excellent. Again, thanks for sharing. Jimbo

  • Thanks Jimbo for your input at a sad time Marytea13

  • Jimbo,

    I agree with all you have said. I wanted to let you know that my husband's memorial service was the 17th (Saturday). We used your article on HOPE and the Psalm 139 from The Message translation. It was so profound and everyone thought it was so appropriate.

    I guess I don't know about this conversation in the states that you participate in. I am in Virginia. Is it something I could participate in and be helpful to others?

    Thanks for all the support you have been and continue to be. Your Sharon was so fortunate to have you by her side. (That's another thing to be thankful for!)


  • Caroline, Thanks for your kind words. The service for you husband sound wonderful I've yet to schedule on for Sharyn but will look at Psalm 139 for sure. Are you USA or UK? Jimbo

  • I am in Virginia in the United States.

  • Thanks Caroline. I'm in Florida.

  • Jimbo, you always seem to be able to say what I am thinking.

    I have been thinking a lot about some of the 'silver linings' that have come with this PSP thundercloud. I'm fortunate that my hubby has retained his sweet and gentle nature. Despite his struggles that he has to contend with daily, he never complains, waits patiently for us to help him and has kept his sense of humour.

    Of course I mourn the loss of the man that he used to be, and the life we used to have. But we have grown much closer through this process, and I have learned to be more patient and gentle with him. We have had some tough conversations and have a deeper understanding of ourselves and each other.

    A few days ago, I left my hubby standing holding onto his walker while I unlocked the door. He let go for a second while my back was turned to push up his sleeves as he was hot, lost his balance and fell heavily on his side against a flower pot which got smashed into pieces. I freaked out. And once I checked he was ok, I burst out crying and yelled at him out of fear and relief. His response was to hold me and simply whisper 'I'm sorry. How can I make it up to you?' I'm very blessed to have such a special man.

  • Sawa, you are truly blessed. You have a very kind, compassionate, caring husband. Not many can claim that. You women who are dealing with a husband with PSP are my real heroes. I don't know how you do it. I know how difficult it was for me. Not that women are any less capable but with the lifting and heavy duty things they are real warriors. My heart goes out to you and your husband. You both don't deserve this terrible PSP that's been foist on you. Jimbo

  • Dear Jimbo- From another angle - What do I have to thank PSP for - My life and the good health of our daughter. With so many doctors visits for my husband, I decided to triple book a GP appointment to include daughter and me. Thought why not see the doctor for a couple of small issues rather than watch time idly slip by in the waiting room. Turned out we were not - But with follow up visits to specialists & treatments now are.

    NB My melanoma's are gone, daughters hearing & balance restored along with extra support at school in place.

  • Sharon, Good thing to do. I've had two melanoma's in my life but caught both in time. Nothing to mess around with as you know. Glad things are a bit better for you and daughter. Jimbo

  • Jimbo, I love how positive and warm you are even in your mourning. I still think of the story about "the girls" from time to time and it never fails to bring a smile to my face. Positive PSP seems an oxymoron. But maybe having the opportunity to connect with people like you is one of them:) Take care JG

  • J G, Thanks for your kind words. Yes, I am a loving, warm, and caring person. I think I got those traits from my Mom. I remember when my first wife passed away my daughter was 18 at the time. In a year I started dating Sharyn and my daughter said "Dad, I don't want you to ever marry again". To which I replied "Heather, some people can live alone but I can't. I need someone to love". Once we married she came to love Sharyn and after Sharyn's passing said "I was lucky, I had the best two moms in the world". I'm hurting now but that's a positive thing that reflects my love for Sharyn.


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