New diagnosis for my dad. : Well, having... - PSP Association

PSP Association

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New diagnosis for my dad.

LeighWoodward
LeighWoodward

Well, having battled away against what they thought was parkinsons disease for the past ten years, survived 45 minutes of life saving resuscitation on the operating table after an operation to fix his collapsing spine went wrong via a severe anaphylactic shock, my dad has this week been diagnosed with PSP. My mum has battled on by his side and cared for him 100 percent, but we desperately need to get help for her as much as him. To learn there are only 4000 people with this horrible illness shocked me, but also didn't, as I always knew it would take something very special and unique to kill this great man. Although writing this through teary eyes we will not give up and hope to do everything we can to help my dad. Just wanted to say hello and introduce myself. No time like the present.

20 Replies
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Hi, sorry to hear that your Dad has just been diagnosed with this evil disease. Know the feeling, I said to my husband, when he was first told about PSP, only he could get something this rare!

Where in the world are you? The right people can then offer you practical advice.

In the mean time, you have come to the correct site, for love and support. We are all carers, (ex in my case) or sufferers of PSP. We tell it how it is. There is loads of information in back posts, but don't be frightening of asking any question, expressing your feelings, good or bad, or just ranting and screaming. We will listen, try and dry your tears and hopefully point you in the right direction.

Sending big hug and much love

Lots of love

Anne

LeighWoodward
LeighWoodward in reply to Heady

Thanks Anne. I'm in the UK. Northamptonshire. So frustrating that he's struggled this far and only now has the specialist diagnosed him. All the symptoms match and it seems so obvious now. Absolutely awful to see and so unfair. Thanks for your reply. Much appreciated.

Hi, like Anne I am an ex-carer. I lost my fantastic husband a few weeks back. I am still struggling with this.

Les had Parkinson's until he had back surgery and suddenly it was PSP. This vile disease seems to become more apparent after an anaesthetic. I spoke to his consultant about this saying that we didn't want any treatment that would involve another an anaesthetic as this seemed to exacerbate the PSP symptoms. The consultant agreed with me and told me that life support would not be used for Les as this involved anaesthetic and his quality of life would be horrendous. This vile disease has taken half of me and like most people on here I have cried so many tears of frustration trying to get the help needed for Les. There is help available. Your dad's GP should be able to advise you or the Parkinson's website would point you in the right direction.

I hope you can find more about help. Try to dry your tears, even though I can't dry mine.

Love and hugs to you and your family.

Pat x

Thanks Pat, sorry for your loss. I totally agree re Anaesthetic. 100 percent. He had one back operation in June, a 2nd in October and then a 3rd just a week later. This is when it all went wrong. But after a short coma he definitely came out a changed man. We worried it was brain damage initially, but all the tests said not. It would be good to think someone somewhere is going to take note of the possible link of parkinsons sufferers and Anaesthetic.

Thanks for your reply sat with dad now and he's eating mince pie and ice cream watching the football. Amazing how up and down he can be. I totally agree it's such a vile disease. Awful.

Take care and thanks again for your reply.

Cheers. Leigh.

Hi Leigh

It sounds like your dad loves football and food. Take care of yourself and your mum through this journey. I won't pretend it's a good one so make every second count.

I don't want to sound stupid but honestly you obviously love your dad. My daughter has been with me on this journey as she still lives at home. I was shocked when I heard her tell a friend "I need to be strong for mum". I felt utterly selfish. I know she is there for me as she was her dad. I also have a son, a daughter-in-law and 5 fantastic grandchildren. Fiona and I have talked and cried together on many occasions and she is, as is her brother, invaluable to me. It still doesn't help how alone I feel after loving Les for 43 years, I will continue to love him forever.

I am sorry I don't want to appear negative as that isn't how I feel. I just want you and your mum and family to enjoy times together. It gives you a little comfort and perhaps a chuckle when you all get together. These times are so precious.

Take care

Pat x

Pat you are spot on. Not negative at all. He still gives me a wink from time to time and we are still able to laugh and joke at times. As you say precious times.

It's their 50th wedding anniversary in March.

Thanks again for your input. Much appreciated.

Ps he's a rugby man really but the grandkids like Liverpool. 😄

Welcome. You will find lots of support on here. Knowing you are not struggling alone is a huge help. Loads of expertise too.

love from Jean xx

It has already been such a difficult road for you and your family. I definitely can empathise. I struggle with whether or not a true ( or just another " I think") diagnosis changes anything in the world of neuro conditions. I believe that my husband could have PSP and not Parkinson's, although our neurologist doesn't see it that way. How was the diagnosis made, may I ask?

Hi, yes, my mum and dad heard about an expert clinic specialising in parkinsons in Oxford and dad was signed up some 18 months ago to undergo some state of the art neuro stimulation programme. Unfortunately then his back disaster happened and it got put off. He had an appointment over Xmas which got cancelled at the last minute but mum being the battler she is wouldn't take no for an answer. They went Thursday and was told they suspect he had PSP. The specialist they saw said one of the parkinsons specialists had flagged it as a possible case and she was in full agreement.

I guess what I'm after on here is to try and grasp a sense of how far along the journey are we and how long has he got left. We are in the process of renovating a bungalow for them too which we really hope. Is not in vain. He's lost the use of his hands now, they have gone all rigid, painful and stiff, has very little interest in walking due to fatigue and lack of balance and strength but is still mentally sound. He is fully aware of what is happening to him and puts on a very brave face whenever we see him. Especially when any of his 4 kids or 12 grandchildren drop in to see him. He is a very proud man and it breaks our hearts to see such a great man suffer such an early and horrible ending.

My first question I guess is where's the first port of call for my mum and us to get help quickly. She's battled so hard on his behalf, she lived out of a suitcase for 9 months solid in Bristol hospital staff quarters to never leave his side when he first had the shock through to recovery. They were shipped all round the country to rehab units and she never once came home to even swop her clothes. They were amazing in that hospital in bristol by the way, they deserve every credit. We have had very mixed experiences of the NHS and worst of all has been the service since he's been home. We all feel they have very much been left to fend for themselves with very very little care or support. If they want nurses to pop in and do the best part of nothing, they've been told via assessments that they have to pay, with money they don't have. And so it goes on, or should I say and so it begins again.

Very much appreciate anyone taking the time to read these posts and especially the ones who take time to reply with sympathy and advice. Thanks a lot all.

Hi. It seems to vary throughout the NHS. I live in London.

How long each stage lasts etc is really variable. My own husband managed to be reasonably mobile until an infection meant a week in hospital and he died at home 10 weeks later. Others have a very long final stage.

We did have a good community team to back us up and respond to our needs. I managed without help until he had palliative care at home for the final 10 weeks. They were brilliant.

My lifesaver [ apart from this site ] was the hospice. He went to the day centre once a week, which gave me a break. They loved him there and also did respite breaks. The GP referred us.

Lots of love, Jean xx

Hi Leigh, yes it is a horrid illness, I know exactly what you are saying, I am sole carer for my husband who has been battling P.S.P for 7 years plus now. Wrongly diagnosed too with Parkinsonism 1st, until I read an article on 2 girls trying to raise awareness into P.S.P. and noticed that the guy had the same "Look" as Leon, my hubby. This site certainly helps knowing we are not alone

Welcome Cheers Marg H

Thanks Margaret, as you say, sounds very similar. Be great if I can put my mum in touch with some of you in similar situations to her. Sure it would really help knowing what some of you know. As you say "that look", isn't it awful. Such a strong and active man such a short time ago. Life is shit sometimes.

Leigh, I just re-read your post, Leon's hands are also next to useless, so contorted that he is in constant pain, wears a brace which he thinks helps, I'm not so sure, but hey if he thinks it helps so be it, he also is so so up there with his thinking, amazing, but sad at the same time, as he knows what to expect, won't except it though, can hardly speak now, so frustrating, just pivot transfers, almost incontinent, sleeping a lot more now, although very restless, can wake up to 40 times a night, which is exhausting for both of us, there is no chat site in Australia for me to go to, this one is so so helpful, just to know I am not alone

Thinking of you Marg H

Hidden
Hidden

Welcome,sorry you are joining a group no one wants to belong to.

Wealth of information here.

Dee in Bc

LeighWoodward
LeighWoodward in reply to Hidden

Thanks.

Hi Leigh

I'm replying to you from the other thread.

Your Mum needs to know who the O.T. is. As the illness develops your father's needs will increase and being able to telephone and ask for another assessment is crucial.

You could try telephoning Social Services and asking if it was their O.T. if not they may be able to locate who it was. These days there is a tendency to put a service in and close the case. So you could just start afresh with Social Services when you next need an assessment. e.g. when things aren't working. The other thing to bear in mind is swallowing. If he is having difficulty eating and swallowing ask the GP to refer him to a SALT nurse or a Speech Therapist - Same service different terms in different areas.

I hope this helps

Best

Kevin

He saw the alt team when he came. Out of his coma, a lot, and he got to the stage where he could feed himself. Normally, which was seen as a massive hurdle overcome at the time. He still feeds himself, just, but does choke occasionally, but also panics himself. He also gets food stuck in the top of his mouth a lot as his tongue doesn't work to well at times.

I will pass that on to mum also.

Is it OK if I message you privately with this detailed stuff Kevin rather than in open forum, would you be ok with that? Is that possible on here?

Thanks. Leigh.

PM'ing is fine. I won't be able to respond for a couple of hours now tho'

PSP often brings with it a slowed swallow reflex. It causes some choking. A good indication is frequent choking on liquids. That's when the SALT Nurse needs to come out.

Best

Kevin

Yes he does choke on even drinks and has been using straws for a while. Salt coming out next week. Will dm you. Cheers. L ps no issues re the delay replying. Thanks.

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