I knew something was wrong quite a long time ago; I was so clumsy, bad at sport, had no sense of balance and so on when I was a child. However, it was only when I was 36 (I am now 50) that things started to go noticeably worse. I managed to hide my problems quite well, even with my ex-wife to some degree, but I couldn't ultimately disguise the way my health was going. My wife convinced herself that I was an alcoholic (which she knew not to be the case - I lived with her and never went out) and left me after fifteen happy years. Needless to say, she didn't return even after the PSP diagnosis (but I suppose I was living in Hong Kong when that happened and she in Scotland).
The Hong Kong health service, especially if you are, as I was, in the private sector, phenomenally good. It took only a few weeks before the team came back with a definitive answer. I quit my job (I was by this time incapable of doing anything meaningful) and came back to England. Fortunately, I own my house and have a tiny bit of money stowed away but things are getting much worse now and I haven't been able to leave the house for six months.
I am not a self-pitying sort of person but what has really shocked me has been the attitude of the NHS. Despite having all of my health records from Hong Kong, which are clearly conclusive and include examinations from some of the most esteemed figures in neurology globally, and despite two extended stays in hospital, the NHS will neither rule in or rule out PSP although I am, probably like many of you, a textbook example of this terrible disease.
So here I lie in bed dying. I love my brother but he works twenty hour days, lives four hours away and doesn't understand the disease, which, admittedly, is very difficult to understand until you are in extremis with it.
I probably won't post much more. If I could help anybody I would stop at nothing to do so but it's terribly difficult to think of anything I can do. I will check my savings for a donation but am already on thin ice. However, what I can do is revisit my will as, in asset terms, I am actually quite well off.
In the meantime, God bless you all.
Tim
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Hi Tim, I really believe that PSP is something you are born with. Your story, would certainly indicate that! Makes me so cross with the researchers, who seem to treat the disease as an old persons ailment! Not that you can be put in that class!
It must be very hard for you, trying to cope with this evil illness, by yourself. I don't think anybody really understand PSP, not even us, that live with it 24/7? I know I don't! S can get in and out of chairs, without any problem, especially if you call it an exercise, so why doesn't he do this? why the struggle? And all the rest that we have to put up with. I know the answer, but it doesn't make living with it any easier!
Try to keep posting as long as possible. My husband can't communicate any longer, so to hearing from somebody who can talk about this disease, gives us Carers a much needed insight as to how our loved ones are feeling!
Hello, Yvonne. Yes, I did post here once before to recommend B-vitamin supplements (which have a vanishingly small positive effect upon the motor problems) but I think I expressed myself poorly, sounded like some sort of advertising man and caused distress and suspicion - the last thing I wanted - so I kept my distance. My fault. Things are now so bad, though, and I am all alone, I want some sort of solidarity with those travelling this unpleasant journey.
I was distressed by your message. Can your husband use a single finger? I find it very difficult to talk now and certainly can't type anymore. The family bought me a little pad that allows me to look like I can write, which of course I can't, it just guesses what I am going to say. I really only have the use of one finger now.
Let me know. I am here to help. I have nothing else to do with the time.
Well, I don't want to sound (again) like I am advertising something, Heady, as it is disrespectful to ill people. However, without this I could no longer communicate meaningfully. It's called a Kindle Fire and has extraordinarily good intelligent texting. I use it more than I speak now (not that anyone apart from my brother really can understand me anymore when I do open my mouth). I hope this is of help. I should see if PSPA has any more ideas. I'm sure there are many other devices that do much the same. Love, Tim
i HAVE PSP AND WAS DXD NEARLY 5 YRS AGO AND AM STILL HERE (BUT NOT BEDBOUND LIKE U R . IF YOU AR EON YOUR OWN,
YOU MUST GET CA RERS TO OME IN AND SEE OT TYOU O'WIS EYOU ARE NTO SAFE FOR 1 THING AND ANOTHER TJHING IS THAT THEHY BECOME GOOD FRIENDS AND CNA HIGHLIGHT ANY PROBS YOU AMY HAVE WITH YOUR GP OR NEURO (ASSUMIGN THAT YOU HAV E GOT ONE)
SO APAR TFROJM HTA TF FOR STARTERS HYOW R U COPIGN ALONE ?
With a great deal of difficulty. It may appear that I am typing. I am not. My beloved brother bought.me a device that learns writing styles; I type one letter out of ten.
I am not coping at all well but feel so close to the end now, I don't want intrusion. As you may imagine, my home is not really where I want friends and family to see me at my last.
Please keep well, to the extent you can, and try not to succumb to bed rest: that Is the end of the line. I am too far gone to do anything else, unfortunately.
Tim how do you manage? You need to get people involved to help you, this illness is the worst ever illness, we live in Hertfordshire, and we are getting good treatment, where living in London, where they were useless.
You need to get your brother involved, because you need love around you. Keep posting Tim. I remember your past post.
Tim your experience sounds horrendous, My wife, I think, would be in your position though 10 yrs older, if she was on her own, I suppose I keep her going, she would be bed bound by now if I did not force her up and moving though carers dress and wash her as she was too stiff for me to manipulate into clothes. You as Heady said need to get some healthcare assistance if not from NHS then from local council social services, I know it sounds intrusive but it will give you something to shout at other than the PSP. Like the Kindle fire idea but a bit late for M as eyes fixed with limited close vision, ok middle distance and hands not steady.
You look after yourself and if you can get some help in.
I'm sorry about the kindle idea. I must admit my own eyes are starting to go. I don't like the stiffness. I am very fortunate in that I don't seem to be getting the dementia; my mental skills seem unaffected but stuck in a body closing down. I will sort myself out, I'm sure. Keep well, Tim, and give your wife my love, if it's not impertinent of me to do so.
Tim, I agree with the others. It is helpful to us carers for you to post on here. You will need some health care help. I cannot tell you the number of times I have found my spouse on the floor. It is hard to help him get back up. Do you have a lot of falls yet?
I like the idea of the Kendall fire. My husband text me on the cell when he is ready to get out of bed, etc.... I know what he is getting for xmas, LOL.
To be frank, I am so sick and tired of finding myself sprawled out on the floor, I don't get out of bed much now except to collect groceries at my front door and even that can be an ordeal. The worst was when I tried to have a bath but instead found myself collapsed in the tub with a dislocated jaw (which is still not right), broken teeth, a very badly sprained thumb (nastier than it sounds) and bruises everywhere. I do think a tablet with predictive text and WiFi is vital. I would not be able to write this and post it otherwise - I'm not claiming that it's meaningful to anyone else but communication from this dark world is vital to my sanity. I can also order my groceries from here. Having said that, I have gone from being a cordon bleu chef (really) to eating Pot Noodles. Personally, I use a Kindle Fire because that's what my brother gave me and I really like it but I am sure all the iPad s, Samsungs and so on do the job at least as well - it's the concept. I used to type 80 wpm and talked the hind legs off a donkey; that's not going to happen again but my right index finger should hold out. Life is very tough for you poor people who have to look after us; I don't want to impose myself like that on the living and, although I obviously now dislike her immensely, I am glad my ex-wife is no longer in the room, as it were. I wish you and your husband safe passage. Don't let his brain go or his muscles seize up too much - but also don't let him wander around. I'm very sorry to sound so patronizing but I am at the end, not at some intermediate point, on this joyride.
Thank you Tim. I hope you can get some hired help. It sounds like you had a wonderful life, especially in the business world. My degree is in teaching math, however, I have not taught in a long time. There are times that I wish that I could go back, but with my husband sick that is not going to happen. Stay in touch with us on here. There are a lot of good folks in the community. Good luck!
A life in the business world. It's true but I should just have chosen life. I was a university teacher many years ago - jurisprudence as it happens - but I was always drawn to maths, which I am good at and find fascinating. Don't let life pass you by. I'm sure your husband agrees.
I am inclined to agree with you that you are born with it , or genetic .
I met my husband when we were twenty , in hindsight symptoms had been there for years and things he and his family have told me point to it.
It's such a complex condition . it sounds like you have been a very capable and independent person . For some , asking for help comes naturally . fOr others not so .
The kindle fire sounds good and I am glad you have found it useful . That at least gives you some independance ,
I am my husbands carer , It doesn't sit comfortably using that term term. I have found it very difficult coping with having carers , it's the last thing I want , it is an intrusion , but at my age I have to be sensible
I think you are blessed with grace. Personally, I had a very tough upbringing but a reasonably good career and quite a happy life so, like a wounded animal, nearing the end and with no close family to speak of (I love my brother but he is about to be married again to a lovely woman and I don't want to intrude on their happiness), I am intending to vanish silently and alone. That said, you can't believe how much I feel for you. Love, Tim
Well, I took the time to go through a larger number of posts and realized that you sometimes post as "hiden".
You have my deepest sympathy for testifying of your illness, emotions and experiences.
I may have misread some of your posts because I thought that this Nerve Support Formula from RHP Inc had done wonders for you.
And in one of your recent posts you are talking about a small temporary effect (I do not remember your exact words).
Based on my first reading, I went through an hectic search to try to get more info on the product, see if there had been any research on these products and so on;
Yesterday I found out that the methyl form of vitamin B12 contained in this product is the only form of vitamin B12 capable of crossing the brain-blood-barrier (BBB) and got very excited.
I thought that may be by pure luck you had found a product that could have strong effects on reducing PSP symptoms. I was going to order it through amazon because I live in France and I cannot find it here.
Alas, your latest posts made me realize that it was just a dream.
Could you nevertheless give more details on your experience: when, why, for how long etc??? Is it a waste of time to go ahead with it or is it worth a try?
I realized it must be very difficult for you.
Again you have my deepest sympathy and admiration for your courage. Amazing man, you are!
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As much infomation as possible. 
Tired and sleeping much more
Can't take much more!
When communication is pretty much impossible
