I read comments about people with psp and some say they must have the slow psp. Is there such a thing as slow psp

[rochestermn]

[peterjones]

well rochestermn i think there must be because i have had it for years now \\i started falling backwards around 2004 but i was diagnosed with motor neurone and my tongue was on the move i took tablets for motor nuerone for two and a half years then they decided that i had lived to long and said it was parkingsonism \\\ at the time of 2004 they also said i had a mini stroke as time progressed and t was taking madopar for the parkingsonism \\ which done me no good anyway the years have been rolling away and i went to another neurosurgeon \\ this is the 3rd one i have been to and he said to me you have got psp to which i replied what the hell is that \\over this period of time my voice was getting softer and my swallowing was getting worse \ and my legs started to freese up on me so i had a little dance before i could get them going again i just say to myself stop and then they just fall into place again but im still coughing and wheesing but im still in upright position thank goodness it seems a long story to tell you just for your short question == but i believe there is a slow psp i think im here to prove it there is obviously a lot more to this story\\ sorry about the spelling of some words but my computer s letters are broken so i have put in the next best thing not only that it keeps you guessing \\ i hope you are ok and doing well i think we met some time ago on here you were the tough old aussie bloke that did not take offence my opologies if i am wrong anyway take care my friend good to hear from you peter jones queensland australia slow psp sufferer

[rochestermn in reply to peterjones]

thanks for your reply, I am glad to hear you are still doing good after so many years with psp. they say everyone is different and I know that but you always have them questions and this website is were I get answers because my dad refuses to go back to doctor because he is still in denial. thanks

[peterjones in reply to rochestermn]

many thanks for you reply you are right of course this is the website to get the answers or to make up your mind from personal experiences from people with psp that write in I DO NOT KNOW HOW BAD OR GOOD YOUR DAD IS but if he is doing ok and no trouble i would leave him in denial let him enjoy life he must be a good age now i am 77 i have had what io consider a good life and i cannot complain the only thing i think about is those that are very dear to me and i love are left behind to do their grieving thats when the time comes of course which will happen anyway psp or no psp so take care of your dad i wish him all the best and yourself peter jones australia slow psp sufferer

[superman888 in reply to peterjones]

Wow I just read your post that you have slow psp and have had psp since 2004. Out of interest what medication were you taking for motor neurone and did it include anti-inflammatories such as NSAIDs? The medication you were taking for motor neurone may have delayed your psp??? I am amazed you can still use a computer despite having had PSP for so long. Amazing

[peterjones in reply to superman888]

hi superman 888 i was taking the pill called Rilutek it is possible that this slowed down psp but we shall never know after they told me i never had motor nuerone i was so relieved the tablets were about 780 dollars australian that i can remember it all seems so long ago\\ now i find myself in the same position there does not seem to be a lot of difference between MN and psp except that you go out a bit quicker with M N but obviously there is \\ thats terrible thing to have as well ]\\ i have always been fairly fit before so this could have helped me as well i hope!!!!i was told to go home and get my affairs in order which to me does'nt sound to good when they thought i had MN i cannot honestly say whether there was antiinflamatories in the tablet because i was soi relieved at getting a tablet that might be ok for me i know we all came home from the specailist and had a good cry that was all the my family anyway no more tears left live each day for today i had to go on the computer because i could not write anything that looked ledgeble

[superman888 in reply to peterjones]

Wow thats alot of money for some tablets. Glad you are keeping going. I know the handwriting goes terrible after a while. No doubt your good health probably helped too. Sadly my mum died last year with this illness(official diagnosed 2005) and if she were alive today I'd quiz you more to find out what your secret is. Although its possible you were diagnosed very early in this illness and no doubt the Australian climate probably helps too. Good luck to you Peter.

[peterjones in reply to superman888]

superman 888 well thank you for your prompt reply mate im very sorry to hear about your mother its an great shame that so many are dying from this syndrome and there seems so little known about it and help is not all that forthcoming either but never miond we will just press on and do our best

[peterjones in reply to superman888]

hio superman 888 i forgot to say IF I HAD A SECRET EVERYONE WOULD BE FREE OF THIS TERRIBLE SYN DRONE YOU WOULD NOT THINK THE CLIMATE WOULD HAVE ANYTHING TO DO WITH IT WEARE HAVING A HEATWAVE IF YOU LIVED HERE AT THE MOMENT THERE ARE BUSH FIRES AND SOME PEOPLE HAVE LOST THERE HOMES SOME PLACES OVER 44 DEGREES SO ITS GETTING WARMER GOOD LUCK TO YOU TO SUPERMAN 888 PETER \JONES QUEENSLAND AUSTRALIA PS 49 IN BIRDSVILE QLD

[superman888 in reply to peterjones]

Hi Peter, I was just wondering if you stopped taking the Parkinson's drug madopar because you mentioned in your post it caused you problems. I know these drugs increase dopamine which helps Parkinsons but there is not alot of evidence it helps people with PSP. I was wondering if you get the stiff and rigid neck problems which seem to effect people with PSP? In the end my mum's head titled back alot and it seemed to exacerbate her swallowing problems and I did wonder if it was these dopamine tablets she was taking or whether it is simply a part of this disease.

[shasha in reply to superman888]

HELLO I HAVE BEEN DX WITH PSP SINCE NOV - BEFORE THAT I WAS DX PD - I WAS ON MADOPAR AND FOUND IT V USEFUL FOR THE STIFF PAINFUL NECK AND LEG PAINS IN THE MORNING

SO I AM GOING TO ASK MY NEURO ON WEDNESDAY TO PRESCRIBE SOME MORE FOR ME TO SEE IF THEY STILL HELP

SHASHA

[shasha in reply to shasha]

hello all i just thought id say that when i went to my neuro he suggested i take modopar for the neck pain - so i take 2 twice a day normally

[jillannf6 in reply to peterjones]

I too have always been keen on keeping fit

I thinkmit has helped me to keep my typing is dyslexic now asc1 han d is stringer than the other bunt I have an ipad now with th evproloqueytog o,app

It automatically corrects mistakes.

Lol,Jill

And hugs

[mthteach in reply to peterjones]

I am so grateful to hear someone is living long with PSP. I have been trying very hard to learn to do the things at home that my husband usually does. He has been so very patient with me. I am a very active person, and I never slow down to take care of bills etc... I usually try to hold down a job, cook, clean, and watch 3 grand kids 3, 9, and 11. We home school. I am a high school math teacher.

[peterjones in reply to mthteach]

HI MTHS TEACH HOWS IT GOING MATE OK I HOPE

WELL MATEY I RECKON IVE HAD PSP FOR SOME CONSIDERABLE YEARS NOW MINE ALL STARTED IN 2004 WHEN I WAS DIAGNOISED WITH MOTOR NEURONE AND TOLD TO GO\HOME AND GET MY AFFAIRS IN ORDER WHICH I DID BECAUSE IT DID NOT SEEM LIKE I HAD LONG TO GO ANYWAY THATS OLD NEWS NOW IVE BEEN DIAGNOSED ABOUT 3 YEARS WITH PSP BUT I HAD THE SYMPTOMS IN 2004 SO I OBVIOUSLY BELIEVE THERE IS A SLOW TYPE BECAUSE IF I HAD HAVE HAD MOTOR

NEURONE I WOULD HAVE BEEN GONE LONG AGO

I HAVE BEEN FAIRLY FIT MOST OF MY LIFE I BELIEVE IT DOES HELP BUT THIS IS DEBATEABLE I HOPE, ITS SO MATE LOOKING AFTER 3 KIDS WOULD HAVE BEEN ENOUGH FOR ME WITHOUT ALL THE OTHER STUFF YOU DO ANTYWAY MATE ITS A GOOD JOB YOU WERE NOT AN ENGLISH TEACHER OR ELSE I WOULD HAVE HAD TO PUT

FULL STOPS AND CAPITAL LETTERS AND PUNCTUATION MARKS AND ALL THAT \\\ SO MATEY TAKE CARE OF YOURSELF DO NOT WORRY IF ITS SLOW OR FAST JUST ENJOY EACH DAY AS IT COMES SEE YER [ COULD NOT RESIST THAT ONE WORD MATE PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER

[jillannf6]

hi rochesgermn

i too am pretty sur e i hav e the slwo version fo pSP cos i am still here ' ujpright apart from when i fall (fwds) and despite my communicaiton problems - hndwritign gone and typing dyslexic - speech quieter faster and more garbled

dxd dec 2010 but the probelems ha dbdeen around for a good 3/4 years b4 that

thsi blgo pointe dme to the slow version -soemoen from tjhe4 USA pointed us ot some research which said there we re a tleast 2 types fo Pspd

so liek pete rjones i am sill here and hope to have another coupel fo good years (fi not why not?))

lol JILL

[rochestermn in reply to jillannf6]

thanks for replying , that is interesting to know that there is 2 types of psp. hopefully you and my dad will have some more good years. thanks

[marusela]

hi, my father´s history was so fast...in 2012 was diagnossed psp in march, from march 2012 to now was sooo sooo fast, he dont walk anymore alone, he speaks very slow, eats puree, and need me for all things, vision its horrible and his eyes seems semiclosed and iced....all this in one year. hugs for all here

[rochestermn in reply to marusela]

thank you for your reply, I do understand that it is different with every person I am just hoping for the better part.

[toty]

my dad was intially diagonosed with pd 15 years ago,found out it was psp,it was only in the last 6years of his life,that he started to become ill,in the last 2half years completetly disabled,and since July 2012,on his last stages,Dad died oct 2012.Hope this info helpsx

[rochestermn in reply to toty]

thanks for your reply, I am sorry for your loss, my dad has had it for at leasst a year or possibly longer as we think back to when he started following. I think I am just scared of whats next and hoping his is slow. thanks

[jimandsharynp]

I think that "slow" is relative. At the moment my wife seems to be on a plateau (level spot) in our PSP journey. Not much is changing but the balance, swallowing, and other symptoms are still there. Speech is still pretty good. She's been at this level for about six months now and I'm thanking God for it. Don't know if there is a slow and fast PSP but it's different for all of the patients to some extent. Unpredictable is the word that describes PSP in each patient. I've resolved to be thankful for the good times but knowing, without a miracle, that tough times are surely ahead. I've also resolved to not dwell on it my wife has the fast or slow type or which of the five or more "types" she may have. One of the top neurologists at the University of Florida said "There is now way of telling for certain the type, or if it's fast or slow, or how long it will last." His view is that those things aren't as important as dealing with the struggle at hand.

Jimandsharynp aka Jimbo

[rochestermn in reply to jimandsharynp]

thank you for your reply , I agree with you , enjoy the time we have.

[marytea13]

I have been told I have the 'slow' psp a parkinson type - diagnosed dec 11. I saw Neurologist 2008 who couldnt tell if I had PD MND or PSP but was certain it was PSP 2001 dec 11 This year I see Neurologist in February so interested to know his report.. marytea13

[peterjones in reply to marytea13]

marytea 13 hi matei i would be interested to know the results as wel as i expect everyone on here would

so if you could let us know i would be grateful take care good luck peter jones queensland australia

[jillannf6 in reply to marytea13]

Yes mary plz report whatbthevneuro says

Lol Jill

[jillannf6]

hi mary tea

have you jhoined the PSP society in UK OR USA RO AUSTRALIA?

It is well worth it as there is lots of printed info with it

lol JILl

ps htanks 4 your message =- i amGOOD and start radiotherapy on 30 \JANUARY for 3 weeks

[marytea13 in reply to jillannf6]

only just saw your message Jill sorry for late reply. I have only joined the UK group. I looked at the USA one but seem to have more empathy with UK. There is no on line group in Australia but I do get a written newsletter from Victoria another State in Australia. Maybe the Victorians will get an on line group up as there newsletter is very interesting. They are trying to help Western Australia get something going - will let u all know is that happens. Mary

[peterjones]

hi rochestermn how yer going \\ good i hope \\ well mate i never said ''i had a problem with madopar '' i did say''that i was taking madopar for parkinsonism but it done me no good anyway'' sorry cannot help you with the stiff neck part because mine is not stiff yet so honestly cannot say about the madopar if it was good or bad i just know that it did not do anything for me

personally BUT I HAD NO PROBLEM WITH THE ACTUAL TABLET ITSELF]\\\

i did ring up the drug company that made the rilutek and ask them if i never had motor neurone would the tablet rilutek which i had been taking for two and a half years would it have harmed me in anyway \\\ to which they replied ask your neurologist i could not believe i heard it right and said how the hell is the neurologist supposed to know you make the drug !!!!!!!!!!!!! i think it was a bit more colourfull than that but that will do for this session i was disgusted with that answer but never mind life went on and im still here so thats all in the past its all done and dusted anyway

HAPPY NEW YEAR TO YOU \\\\ HAVE A GOOD ONE peter jones queensland australia

[Jane2212]

Hi, Yes I do think there is a type of 'slow' PSP. My mother first had the symptoms of PSP in about 1998/1999 and wasn't diagnosed until 2005. We found that she would be fine for ages and ages and then something would happen, e.g. a fall or some upset or other and she would go downhill a bit, then plateau again for ages and ages. She died in 2010 having had PSP for around 12 years, and she was still able to walk with assistance and could talk on occasions right up to the end. I believe the Co-enzyme Q10 helped her a lot, we bought huge doses of it for her and her doctor (who was her employer before she got ill) helped by prescribing it too. She was on Madopar but it didn't suit her so she had Sinemet which helped with the muscles.

So in brief, I think you can slow down PSP a bit with the help of the right kind of drug. I have known of some patients with it who seem to pass on quickly but I think it's because they don't fight it.

Good luck,

Jane

[marytea13]

Hi I promised I would report back after my Neuo appointment where I asked if I have the 'slow type' the answer was probably as I have not changed since diagnosed definitely in Dec 2011. Only problem is he wants me to increase Sinemet to 6 tabls per day up from 3 tabs per day! Did not say why but suppose to maintain me - am tryin to get to 6 tabsbut know to do it slowly as have been there with side effect partic vomiting nasty experience. BTW I am still playing comp Bridge & got top score 2 Mondays ago but have not been since too hot here Western Aust Perth, days of 41C & thermoregulation in me not so good air con has to be on to hell with the cost ! But if not working I feel terrible. I will try this Monday for Bridge game. Cheers mary tea13

[shasha in reply to marytea13]

HI MARY

YOU SAY YOU ARE ON SINEMET - I WAS ON THAT ALONG WITH MADOPAR WHEN I HAD PD !! I AM DUE TO SEE MY NEURO ON WEDNESDAY - WaS GONG TO ASK HIM TO PRESCRIBE MODOPAR AGAIN BUT AM NOW WONDERING ABOUT SINEMET ? WHY DO YOU TAKE SINEMET ?

[veronica_gp]

Hi. There Psp evolve more slowly, depending on the person. Symptoms will automatically start before being diagnosed because often mistaken for Parkinson's disease. The evolution is usually 5-7 years, but it may be before or after (rarely more than 10 years). greetings.

[LizzieF]

Hi Rochestermn.

I'm quite sceptical about the slow or fast PSP argument. My 81 year old mum's noticable symptoms started in 2005. She was initially misdiagnosed with PD as she has an hereditary Benign Essential Tremor. IT was only when she started falling backwards and had a fixed gaze that her neurologist diagnosed her with PSP in 2007. She is now bedridden, cannot speak, can barely swallow, is doubly incontinent, is PEG-fed, producing excess saliva and chokes every night. Last year I was told by the Parkinson's Nurse Specialist that mum was in the final stages of the disease. I read that the progression can last anywhere between 5 and 7 years with a maximum of 10 years recorded in a small number of sufferers. I believe it all depends on your age, existing state of health and treatment you receive. Although there are exceptions. My best friend in Cumbria knows a lady whose 58 year old husband was diagnosed the same year as my mum and he died in February this year, yet he wasn't as bad as my mum in some respects. There doesn't seem to be any rhyme or reason to it!

Take care

LizzieF