PSP Association
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Just diagnosed with psp

I'm 70 years old and married to the most wonderful man in the world for 45 years. I am more concerned for him than me.how do you handle it when you are told nothing can be done.

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With great difficulty- it I will be a huge shock for both of you but stay with this site , there is a wealth of experience, support and understanding here . Encourage your husband to join in . I have just nursed my wife , similar age to you, through four years of this illness and without the comfort and help an advice I got here I would not have managed . There are no easy answers as this illness affect people in different ways but rest assured there will be people here going through exactly what you are going through .

Georgepa

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Well done George. This site needs you and all your knowledge!

Lots of love

Anne

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My husband has PSP and every time anyone asked him if he was worried about any thing he always said it was about the affect on me. He even offered to divorce me !!!

Now he can't speak but I'm sure it is still his concern. We have been married 55 years.

The answer is that we handle it because there is no option. Its no-one's fault. A long marriage means plenty of experience in coping with life and will stand you in good stead. Make the most of what you can do now. Suggest your husband reads this site.

Welcome, Diane,

love, Jean x

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Thank you for your comments they are very appreciated 🙏🏻

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Hi Diane. I am in the same boat as you. I recently celebrated my 46th Wedding anniversary and was diagnosed with PSP. I, too, worry about my husband and how he will cope with what?

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It very difficult diagnosis to hear and make sense of all the implications. I think we both found that to be the most difficult time to cope but as time goes by you accept the changes and challenges and soldier on as best you can. You need to press to get all agencies onboard and I think that the hospice did more for us than any other agency, they have been a life line for both of us. This site is the place you will pick up most information and support, you can also vent when things get on top of you. There will be highs and lows but you somehow manage to find the strength to get through.

Sending much love

Kate xxx

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Thank you Kate

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Hi Diane, welcome to this forum although I'm sorry you had to join due to PSP. My husband was diagnosed in 2014 and my reaction was shock and anger. However having posted here, I was advised to do as many things/go places while we still could and make new memories. So please give this a try.

Congratulations on 45 years of marriage, keep on loving, it's the best tonic.

Lots of love, Nanny857

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Thanks Nanny857. Support is so needed to deal will this dreadful thing. Appreciate you comments

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My husband was diagnosed in 2014 re diagnosed in 2015, he said I told the doctor to say that he had PSP, it was a very hard time, with mood swings, loss of apathy, did not want to get out of bed, he is in a wheelchair all the time, I think the worse thing is the coughing and choking, career let him have chocolate today, he has been coughing so much. On a lighter note welcome to the site. Yvonne xxxx. I also think you are shocked at the beginning, but just get on with it. Xxxx

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Welcome Diane though sorry you have had to join us.

My husband has PSP diagnosed 4 years ago. As others have said this must be a huge shock for both of you. Get out and about as much as you can now. Build new memories - I treasure the new memories as much as the old as they show me PSP has not won!!!

Inevitably there is work to do on wills and suggest you get a lasting power of attorney or equivalent done. Tedious but will give a sense of relief and security you can then simply file these away and get on with living!! Perhaps suggest this site to your husband too??

Take care

Love Tippy

Xxx

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I love the building of new memories advice, Tippy !! My husband spent much of our 50 years together - together drinking with his friends - I am getting to know him sober!!! I've started a facebook secret page for me and my children only so they may also replace some not so fond memories with sober, caring memories. It is a time for redefining - sometimes 4x's a day!!!!!! PSP is here to stay and we will move forward with it and "treasure" what is today!!!!

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Hi, I agree with all the other posts. Life is not over, it has just changed. The biggest thing, at this stage, is concentrate on what your husband CAN do, not what he can't.

PSP is a rough, lonely journey, for both of you. Your health is just as important, in fact more so, as you will be one doing everything. Your husband will rely on you totally, so don't let him down, by doing too much, not asking for help, when you need it. Steve finished his journey 9 months ago, the one lasting regret, of caring for him, was I didn't accept help sooner. This, I can't stress enough! Pride has to go out of the window.

If you are not there yet, then get out, go on that holiday you always wanted to, visit friends and family. Get your husband into some exercise classes. There are ones specially for people with Parkingsons. These are excellent, they won't stop PSP, but they will help him keep his strength up.

Most of all, stay on this site, like everyone else, I would not have survived without the help and support of the people on this page. Ask any question, express every feeling, don't bottle anything up, rant and rave, kick and scream, we will all understand. Nobody judges, all too busy feeling exactly the same.

Lots of love

Anne

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Don't give up . i have had psp for abort 3-4 years now probably longer i was first diagnosed with atypical parkinsonism about 9 years ago and still consider myself independent. in fact I do not think that things have changed that much. There are different subtypes of psp and he may have one of these like me,

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Really glad to have you chime in with the positive side, Stephen. Best wishes, ec

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I found this PDF link on a post on this site this morning. It will give you some basic ideas.

pspassociation.org.uk/app/u...

I'm into 2.5 years of care giving now. It is hard at times.

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As Georgepa and others have already advised, stay with this site and encourage your husband to join this forum too. Here you will find information, support, understanding and a much needed haven where you can express your feelings when things get on top of you.

I feel for you both. When you're told nothing can be done it's such a shock, it feels like the end but, as Heady said, life is not over but it has changed and somehow you will you find the strength to cope with the challenges.

With love and some understanding of how you must be feeling,

Erica xx

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Hello !!

PSP is a disease without pharmacological treatment. The only thing you can do is counteract the symptoms.

In few wors these are my experiences on PSP disease:

My wife suffers from PSP. The first symptoms (difficulty speaking as if she had a stone in his mouth and a slight tremor in the ring finger) will be presented in March 2012. The definitive diagnosis was in June 2015 (Difficulty in eye movements).

Palliative treatment of the disease is as follows:

1) Avoid falls: transfer techniques, seat belt, wheelchairs, to adapt the bathroom, etc.

He has regularly used a wheelchair since June 2016.

2) Prevent cold and flu (vaccine is advisable). to avoid pneumonia.

3) Prevent solids or liquids from reaching the lungs. Add thickeners to drinks. Relatively doughy food and solids in small pieces

4) Gymnastic tables 6 days a week: passive in bed (Move all major muscles) and active (helped by 1 or 2 people): Go up and down 50 steps, walk 200-300 m, speech therapy exercises, exercises ocular muscles. After that he needs to rest at least 30 '

5) Socialization. Almost every evening, social activity: cinema, city walk, show, museum, conference, visit grandchildren, snack with friends, etc. After that he needs to take a rest.

5) Palliative medication against depression and insomnia: 1/2 Sertraline-50 at breakfast; 1/2 Sertraline-50 to food; 1 Lorazepan-1mg one hour before dinner.

Drops of tear to the eyes.

We have a part-time hired person to perform gymnastics, personal hygiene and dressing. Another person lives with us with holiday on weekends free. Those two persons help me a lot regularly and the children help whenever they can. Also the friends of always collaborate.

Each patient seems to have similar symptoms but their appearance, intensity and sequence seems to be specific to each patient.

Our plan has been designed and adapted simultaneously by the neurologist and the family doctor.

In the small occasional doubts or small urgencies we are guided by a relative who is a doctor.

We found great help information in the web "CurePSP": psp.org/ has been of big help.

Releasing the caregiver and allowing him / her to have life outside the home as well as to avoid strong or continuous physical and psychic efforts is fundamental. The main caregiver of a patient of PSP is progressively taking charge of the work that did when the disease had not been shown, plus the work done by the patient of PSP, plus the management of the illness and the people who are forming the team of help. One must also look at how old is the caregiver is and his/her medical history.

The bottom line is that jobs and occupations of the primary caregiver grow at the same time as age is going up ..... without an important help is very difficult to carry out without a brutal wear.

From my experience and also from my group of caregivers it is essential to find efficient help that allows areas of freedom and leisure as well as vacation periods for the caregiver, far away from the PSP. At least, a week of holidays each six month is advisable.

Best regards.

Luis

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