I have realized that in a strange way I am lucky to have CBD and not PSP.
Because I live alone I feel it would be impossible to stay mobile if I were to suffer from falling backwards.
Can I ask if there any PSP sufferers who live alone ?
Best wishes to all,
Patrick.
Patrick I should not imagine there are any living alone xxxx
My 75 year old brother has PSP and lives alone Patrick.
He was diagnosed this past June after a near topple backwards since when he hasn't had a fall. Nonethless we are constantly anxious with regard to his safety and well-being.
My sister and brother in law live 2 miles away from him and call in every day, I live 130 miles away but I've arranged my work in order to visit every 3 weeks and stay for 6 to 8 days (his work permitting my husband now comes with me whenever he can). I ring my brother at least three times a day for a chat but also to check that he's okay. Between the four of us we provide as much care and support as we can.
Recently weekly visits by an Occupational Therapist began and various things have now been provided to help him. Also he's waiting for a visit by a Rare Diseases Clinical Nurse familiar with PSP to assess his needs and, I assume, to advise us as to what we need to do in the short and long term to enable him to live independently for as long as possible but to ensure his safety and well-being.
He lived with our parents until they died some 30 years ago since when he has over the years relied increasingly on us for practical (and emotional) support (he also has OCD and dupuytren's contracture) but is nonethless in his own way very independent and very private and understandably at them moment resistant to the idea of "outside" help.
I'm due to ring him now so must go.
Kind regards,
Erica
That is so good to hear.......
He sounds as if he is aware of falling and fights against it. I am very careful when I walk around and think about my balance all the time. I have a walking frame available for when I have a wobbly day and that certainly helps.
Please give him a 'well wish' from me when you see him.
Patrick,I don’t know how you live alone with CBD , Chip has not walked one step in over two years now I think he has had this about 4 yrs. now. He can’t use his left hand or arm and Bearley can use right. He forgets how to use the remote and cell phone and his mind is forgetful and getting worse he has started talking crazy but then he will have a good day. I think about you often cause I knew you were alone. I’m praying for you to keep it up. Wishing you well. Good Night love Jenny
Hi Jenny,
I had my diagnosis in January of this year and realize that I am only in the early phase of this disease.
Living alone will certainly have it's challenges but with help from the care services that are available it should be possible for some time to come.
I am currently getting my act together for a weeks holiday in Lisbon. At the last minute the widowed wife of my best friend asked if she could come on the trip. We do have separate rooms !!!!!!!!
Cheers,
Patrick.
Patrick, I will say my husband just quit doing any therapy or living in this world he with drew very quickly and said I cant so I did everything for him Maybe that was a mistake? He stopped thinking about everything except what he needed you stay active and you are working at keeping your mind busy. Have a great visit and a good time with your friend😘
Charlie has PSP and falls a bit. He always wears a whistle and a protective hat (here in Australia we call it a Johnathon Thurston hat . He is one of our best Rugby league players and wears this helmet). Ch is often outside working in the garden with his plants and so needs to be able to alert me when he falls. He has put in a few outside rails around the gardens at key points to lessen the number of falls and now uses a 'wheelie walker'. These have really helped. ... If I go out and leave him alone he usually stays inside and either rests or uses the computer (i am out for about 3 hours). For us too it is early days (diagnosed last Feb). You are brave to be living alone with CBD. You need to alert some neighbors and organised someone to call you. Also if you are not wandering around a large property you might benefit from one of those alarms to use later down the track. You will need something later on (as wil we too)
Good luck Patrick. Take care
Val (and Charlie)
Have a wonderful holiday!!!!!
My sweetheart lived alone in his place in the near wilderness and worked his physically strenuous retirement job as a park ranger during the non-winter months for three years after he was diagnosed with psp. He moved to town and lived with me full time the last 3.5 years or so, but I had regular home care for him while I was at work only for the last 18 months, so he was on his own a lot.
And he fell a lot, whether I was there or not!.
I was going to ask you that........
He sometimes more or less sank safely to the ground, but most often took something down with him. I still have a houseful of smashed furniture and damaged appliances and fixtures. Poor man, he couldn't control his impulse to move. One time he called me at work to say he had broken the oven door, and I raced home to find him sweeping up room full of crumbled glass, with no damage to himself at all. No idea how he did it. I replaced the stove, and somehow he whacked the new one too, although he just even more mysteriously twisted the frame that holds the glass. I am living with that still.
It didn't really matter whether i was with him or not. I would think I had him in a stable position, turn away for a second and turn back to see him going down like a cut tree.
I have 2 shelves of glass that could be broken if I fell........
I may have to pack it away in boxes.
tough call. If it gives you pleasure to look at it, it may be worth the risk. And you aren't falling now?
Glad you have someone to travel to Lisbon with. That just makes it more fun, anyway, yes? For her too!
No boxes yet and with the walking frame I should be good for a long time.
Her husband suffered with a form of agoraphobia so they never went on holiday. Yes it will be good company.
Hi Patrick, I would certainly not say my wife was lucky having Cortico Basal Degeneration CBD and not PSP. Although I understand the two conditions can morph into one another, I think one of the first main CBD conditions is the falling (backwards or fowards), then as with my wife, unable to use one hand then the other, unable to walk, feed herself, unable to read, use the telephone, toilet etc etc. I had already done hospital lifting courses and looked after others in their own homes so am able to cope on my own looking after her for the time being, my own health permitting.
It does not sound like you have CBD but maybe CBD symtoms and more likely PSP, (but I'm no Medic). As you are on your own I would get prepared for the seeming inevitable, because you certainly will not be able to cope on your own with CBD.
There are always others in this group who have been there or are going through the same as you, who will wholeheartedly give you moral and kind support.
Along with the pspassociation.org.uk
I wish you well and hope you get the support you will need.
looking for a PSP Clinical Trial
Visitors for people in a nursing home.
Some PSP symptoms compared to a child......
