Is there a general length of time for the ... - PSP Association
Is there a general length of time for the progression of PSP, or is each case different?
hi alexandra23
i was diagnosed in dec 2010 but the syjmptoms were apparent 4 /5 years earlier
i am still getting out but am no longer bale to walk far or swim (co orodinatioin gone)
But i gather each case is u[nique re symptoms of speech/falling/ bladder/cooridnation (v real problems 4 rme) and take a different time to develop
i was fallign 3 times daily but am now falling only 3 times a week 0= meds might be helping
stresss aggravates the Psp and symptoms as well
do you care for someone with PsP or are you a patient
well wortt joining the Psp assoc if you have nto already done so
jill
Dear Jillann16
My husband is a PSP patient and in a nursing home. It seems his illness had started by 2007 but developed quickly in November 2010 and he has been in a nursing home since then. He was OK to start with and was quite attentive but more recently his attention span has gone and I cannot amuse him with reading the magazines he like. Just this weekend he has been very agitated when I visited (I go every day) and been shouting. I know this is mainly because he cannot express himself (his throat muscles have gone so he cannot speak) but I think there must be something else. He was very distressed when I left and is now quite thin, even though he eats very well. So there has been a noticeable deterioration since he went into the home. The Hospice doctor is going to visit him on Tuesday so she might have some ideas. Thank you for your reply.
Hi Alexandra,
My dad was diagnosed in March 2009. Like Jill, the symptoms were apparent prior to his diagnosis. In March 2009 he was able to walk. But in November 2009 he had a fall and ended up having to use a Zimmer frame. Now he can't walk unaided. So he's wheelchair bound. His speech is also hit and miss. Sometimes, I can understand him clearly and other times I can't.
But, regardless of everything my dad is going through, he is still smiling. He's having Botox soon because of eye spasms.
His consultants at the Princess Royal Hospital, Haywards Heath are really good.
I believe the progression of the disease is different for every person. My dad has months where he is stable and then will end up with an infection of some sort (mostly urine infections) and then we'll notice that a decline in his health. We're lucky at the moment that he can still swallow food. Although he does cough a lot when he eats, but it's because of the texture of certain food. He also coughs a fair bit when he drinks.
If you need to ask anything or want to know about something, you're in the right place!
There's also a PSP event in London on 28th September
X
Dear Faiza
Many thanks for your letter with the information about your father. It does seem as though symptoms vary from person to person. Thanks for mentioning the event in London. I will see if I can get to it. I think it's wonderful having a website like this so that it's easy to get in touch with others and exchange news.
I live in Surrey.
Dear Alexandra,
It costs £35 to go if you are a member of The PSP Association, otherwise the fee is £60.
I agree, I'm so happy to have found this site and to 'meet' carers and those also suffering from PSP or CBD.
I live in Cambridge but visit Sussex (well, they're based near Gatwick) often to visit my parents.
My dad interacts a lot with my iPad. There's an app on it called show time which is a White board. As he struggles to grip a pen, he can write things on the board with his finger. He also liked playing Sudoku and the brain training games on the Nintendo DS. That is until my mum decided to hide it from my niece and then realised that she's forgotten where she's hidden it!
Can I ask how the music helps your husband? Sometimes, more often than not, dad seems in his own little world. My mum his full time carer, although she gets help four times a day from carer services.
Faiza
I just meant that because he looks cheerful and involved I regard it as a sort of therapy, like when I read to him from his favourite magazines and he can make comments and sometimes ask questions about the articles.
Ps are you based in Sussex?
As others have said the progression is different for everyone; that is part of what makes it so difficult to deal with. Mum was diagnosed late 2008/early 2009 and whilst her speech is usually clear she sometimes gets the words muddled. So far she is swallowing ok but her mobility has been badly affected and she uses a wheelchair pretty much all the time. She hasn't had that many falls, thank goodness, although there have been a few. Like Jill and Faiza's Dad there were some symptoms prior to diagnosis.
Dear hmfsli
Thank you for responding to my question. Is your mother still at home? I wish my husband could be, but I really could not manage him physically on my own, but there was no other help available, and the consultant at the hospital said he was in the best place in the nursing home. Certainly there is medical care instantly available which is a relief and comfort to me and the carers are lovely to him. He always smiles when they say hello to him even though he can't say it back.
Alexandra
I noticed symptoms about 12 years ago and was diagnosed about 8 years ago. I have difficulties with balance and swallowing but am still up on my feet and eating solid food. My symptoms intensified at the beginning of this year and I was falling a lot, but in the last few weeks I have been doing some alternative therapies and my symptoms seem to have stabilised and actually I have only fallen over once lately. At the moment I am actually hopeful of things improving.
I am delighted to hear that your symptoms have stabilised. Could you let me know what the alternative therapies are? If I could introduce them to my husband maybe he might improve. Physiotherapy hasn't really helped his walking but he enjoys the visit of the 'music man' to the home and participates in the music with a percussion instrument.
hi susan
how have the alternative hterapies helped?
which are stabilising you?
i shoudl dearlhy like to know as i have psp (diagnosed dec 2010) but symptoms go back 4 5 years b4 that
i too am siill on my feet - cannot swim at all now or walk v far any more but am i have been on amantadine 4 a few week((200 ) now and it seems to have reduced the falllign (3 times daily) to 3 times a week
jill
Would very much like to know what alternative therapies you are using. Thank you.
great news susan!
i too am still on my feet and falling a lot less
i think / hope i may have the slower type of PSP
love jill
This link was also informative with what to expect. All are different depending on the overall health of the person. Good luck with all....Kathy
Hello Alexandra and Jill,
My son has been involved with alternative therapies for a number of years but its only recently that Ive been really willing to give them a go and stick to them. We have been doing lots of different things in the last few weeks, some of them more conventional than others, and some more expensive than others! Because Ive been doing so much, its a little hard to tell which ones in particular are helping. I have been doing a one on one yoga session each week and have also been receiving a Bowen Therapy treatment each week. I have also learnt and used EFT because, as others have suggested, stress intensifies my symptoms. EFT is a great tool for releasing stress, worries and frustration. I have also just started seeing an IBA (BodyTalk) Practitioner, my first session went very well so I am seeing her again next week. On top of this I listen to a hypnotherapy cd every night. At the moment the session I am listening to is called 'Calm and Focused', and I have also been doing a meditation in the afternoon. My son is of the opinion that as I develop more body awareness and listen to my body's signals, I will be more balanced in all ways.
I have also changed my diet (no more red meat) and am drinking much more water. I have got rid of all the toxic cleaning products I was using and the house is now organic. My son thinks that I am extremely sensitive to my environment and has encouraged me to take this into account. It has also been suggested that I struggle with Geopathic Stress and Electro Magnetic Radiation and that this may be affecting me, so I have just purchased a product which neutralizes all geopathic stress and EMR in the house.
Another thing that my son has encouraged me to notice is that my symptoms are not consistent. Sometimes they are intense and sometimes they are mild. So he has suggested that instead of thinking of PSP as a thing, I think of it as a verb i.e. he suggests that I notice when I am PSPing and when I am not, and then to look at what is going on. It may be that something is bothering me, or that I am worrying about something, or that I am eating something which doesnt suit me. I am beginning to notice that some environments just dont suit me....I had a bad experience in a restaurant the other night and feel that restaurants may not be great for me at this time....there is just too much pressure. Whereas this morning in the comfort of the kitchen I ate my toast and jam easily!
I have also received some distance healings in the last few weeks. I guess these would be classed as 'spiritual healings'. Im not really sure how they work, or if they work, but they dont seem to be hurting! If anyone is interested in who in particular has helped me I am more than happy to supply website addresses.
My son sometimes reads me chapters from the books he reads. He wants me to recommend a book called 'Conscious Medicine' by Gill Edwards. It is a book that gives a different kind of perspective on health to the one that I have been used to, and is full of hope and positivity,
I hope this helps, Im sorry its long, but its hard to write all Ive been doing briefly!
I wish you both all the best,
Susan.
The progression of PSP/CBD does vary from person to person and the timing of onset of symptoms. Diagnosis comes at different times as well. There is some research describing different types within PSP.
the main therapy i do is tai chi for balance /arthritis & lowering BP =- it is cheap and cheeeruf too, and an ordinary thing to do
jill
ps i have fallen twice at tai chi sessions but am much more careful now - and want to avoid the paper work which goes with a fall at a class for the sake fo the tutors!!!
Dear Jillann
Thank you very much. This sounds very interesting and I will look further into it.
Alexandra
hi alexandra
your therapies seem 2 be helping
i am thinking of the EFT as it has been recommended on the site
love jill
I do not have a permanent diagnosis yet but all indications are PSP. Have been having unexplained falls for four years. Have met a fellow who has a diagnosis of PSP who is 7 years younger than me and on his last legs. He thinks he is about two years ahead of me. I'm in the states and am not familiar with EFT Would someone help me with that ! Stress is not high when I am at home, however I had indications last year that excitement aggravated my condition...
Thanks for any hope you can give me altho who would want to prolong this!
Lucille in Minnesota
Dear Barnett,
Forgot to mention that this ilness has been diagnosed only in June this year. I do already logopaedie and Physio therapie and as I wil go to Thailand very soon for a longer period, I will try agapuncture and a more holistic approach of this ilness. I have thought for years that I suffered from the Disembarkment syndrome (also very rare) until this PSP was diagnosed (also by a professor who is a great specialist in this matter). I suffer untill now the most of my "brain fogg" (getting worse everyday) and I am very tired while unfortunately cannot do anything I did before (am/was a control freak and very quick).
I hope that it is really a sign of elder age (almost 70). I also cannot read my handwriting anymore. Dread the day that Icannot be o
n my pc though. Also live in Belgium where there is no help at all! (am Dutch).
Ineke
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