but he has gone worse all the symtoms are there especually the falls im at my witts end it seems like they dont care is anybody else experiancing this
does anybody no why they tell you its psp ... - PSP Association
does anybody no why they tell you its psp then move you on to some one else they say it may be that my husband was diagnose with this
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laila123
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Dear Laila123
Don't know the real answer to this, maybe it's because "they" do not know what it really is or if they do, do not know what to say.
My bottom line now is to get as much help and support as I can, from whatever source, to accept any offers of help from family and friends, to try and live as "normal" a life as is possible, to shout and vent my frustrations whenever I feel like and ABOVE all to stop chasing that elusive rainbow of a cure, there isn't one.
But let us hope the future will be more hopeful.
Many regards and be kind to yourself.
Dorothy T
hi Dorothy
ia m so sorry that you have not found the PSP assoc v helpful- i have found them excellent in the info they provide for people ror carers of those with PSP; and by having local meetings too and a PSP Nurse specialist int he early day s was invaluable too
this forum si good too for venting and foe help;gin others too
and i think you need some help with dealing with your husband
LOLJILL
HUGS AND XXXXX
Hi Jill
I feel I ought to clarify my blog on the PSP association just a bit. Yes,in the early days I did find them useful, for the information, for the times when I just wanted to talk to someone and for their support. Unfortunately as time as gone on I feel that they have become, for me any rate ,a
talking shop. Added to that the advisors in the South East have changed at least 4 times, just as I got used to one, another one came along.
I have had all their literature but I think it's whole approach is wrong, it "talks" to the sufferer and gives generalisation all the time, which I suppose I have to agree is all it can do, anything more specific and you can talk to an advisor. But, with all respect, I get so tired of talking and asking because most times I am already "doing" what is suggested and this whole thing goes on
relentlessly. If I was to call my doctor as many times as I am told, I would never be off the phone!
Incidentally I recently went on the Curepsp.org's site and found that much more informative, but it still could not tell me how to deal with a person who is moaning and groaning, throwing off all the bedclothes, being incontinent, refusing any type of care, for hours on end.
Oh dear, it sounds like I really did get the short straw! In contrast to Jims lovely wife Sharyn, my husband is as aggressive and demanding with PSP as he was without it.
It hope you are keeping well Jill.
Kind regards
Dorothy t
i think you ha ve got the short straw
dorothy
i know how it must be 4 you both - both trapped with this relentless illness but how else can ti be/??
some say our worst personality aspects come back with the PSP -- I do not know about this but def my anxiety is pretty bad and then i start falling over and my partner shouts at me and says i am doing it on
purpose -not the case obviously bur difficult and then i start crying etc etc
we are all v frustrated with this Psp but it could be worse yes really(he is a man u fan and knows about peopLE UNABLE to do theIr job
LO L JILL
Oh Jill, I am so sorry, sometimes I feel so terrible at my reactions and how I deal with the situation but it is only because I am thoroughly exhausted with everything, as I am sure others must be.
It is and must be a 100 times worse for you and my husband and I do my very best to empathise but in my case there is so much learned behaviour of always putting myself last and I really feel that the clock is ticking for me and now my health is beginning to be compromised.
In the old days I tried to concentrate on the good days because I was able to "do my own thing" but now, as you rightly say, we are both locked into this dreadful disease and at times I feel the pressure so much.
But then, you come along, pick me up, dust me off and I can and do, start all over again.
Take care and much love
Dorothy
hi dorothy
will you be able to come with your husband to my online party next sunday?it would be different for you both and would make a change= even if it was only u on your own for 30 mins
lol JIll
Are you in the UK, laila? Folks here always recommend joining the PSP Organization. They say they offer lots of help and information. I don't know anything about it myself, but I'm sure the folks who do will chime in here. Hang on!
Hi Eastern
PSP organisation, hmmm - still think it's another "talking shop" and they don't quite get it, sorry.
Regards
Dorothy t
Dorothy, I haven't found that PSP organization is a "talking shop". Although in the USA we found the PSPA.org in the UK was VERY helpful to me in caring for my dear wife Sharyn. They sent me lots and lots of information, good information that helped me understand not only PSP but the symptoms and how to give care to the patient. My hat is off to PSPA for helping us. I also received help from CurePSP.org the USA PSP group. Might be interesting to poll asking "How helpful was PSPA or CurePSP in dealing with the disease?". Just a thought. Jimbo
It's not for just folks in the UK. I'm in the United States, as many are. We are mostly seeking support, information and experiences from others on this blog. I think it is WONDERFUL. I guess it depends on your expectations.
Caroline, I agree. I'm in the USA but found that both PSPA.org (UK) and CurePSP (USA) were a great help in learning about PSP and also in dealing with it. As you say, it depends on your expectations. Jimbo
Jimbo I'm with you and Caroline, without the PSPA and the information they provided my wife and I would have been without any knowledgeable help or advice. They organise voluntary support groups here in the UK and raise funding for research. To the best of my knowledge no one else in the UK is doing as much. Incidentally it was the PSPA that told me about this site and it's really nice to have met you all.
I was so sorry to learn of your loss Jim, it's hard but the consolation is your wife is free from suffering, with sympathy and kind regards, Jerry.
Jerry, Thanks. I'm hurting at the moment and I'm sure it will last for quite some time. First time in my adult life I've been faced with living alone without someone to love. Jimbo
hi jim
so sorry that you are hurting a lot - inevitable i am sure = r your family near enough to help you'
;ps i would be great if you could come to the Uk like you had suggested on one answers = when things are a little less raw for you
in2915 perhaps?
lol Jill
hugs and xxxxx
Yes probably in 2015 (Summer). Sharyn and I took my one grandson in 2012 and I've promised the other younger grandson a "special" trip. Jimbo
hi jim
will u b able to come to the Uk in 2015?
i need to look at yr wonderful art too - what is the website 4 ti?
nannab gave me it but it does not work or open
lol` jill
how r u today jim?
Jill, My plan is to come to the UK in 2015 with my Grandson who has never been there and is 14. I'll be in the High Wickam area and in the Malmesbury area. However with the excellent train system I can get to anywhere in the UK easily. My art site is Http://jimandsharynp.tripod.com/jimsart
Jimbo
GOOD TO HEAR THAT JIM
WHO DO U KNOW IN THE HIGH WICKAM AREA??
LOL JILL
;--)
I have a cousin by marriage who lived in a very small town/village called Lane End which is near HW. Are you near there? Jimbo
NO JIM NO A T ALL IM AFRAID BT I AM SURE SOMETHING COULD BE ARRANGED TO MEET UP
LOL JILL
dear Laila,Dorothy is right...sometimes a Dr will rather not say...we have spent the last 10 years navigating in this sea of PSP,it can be partially differnt for all patients,falls,unfortunately cause very bad potential problems...write your feelings on this site and any question you have will most likely have been seen by one of us,stay strong if possible,Rollie
Laila, Getting a good neurologist can be difficult. After diagnosis many just don't take an interest in the patient, or so it would seem. Fortunately we found a very good neurologist who spent lots of time with us and guided us along. Generally PSP doesn't move quickly in most cases. If you keep searching you'll find a good neurologist who cares and takes an interest beyond diagnosis. If you are near a University or College see if they have a Movement Disorder or Neurological Clinic. You might get more interested care there. Just a thought. Stay strong for your husband and be there for him. Just do your best with no regrets later. My wife just passed away from PSP this month (May). I can look back and truly say she received the best care I could give her. Did we have our "moments" yes we did Overall her journey through PSP was the best I could make it. You are a warrior and must fight the good fight. Bless you and hubby. Jimbo
i have to go on monday on my own sa they did a scan and have found 5 shadows im really dont wont to no but it will help me to make him comfortable unfotunatly dont get much support from the sons as they dont see there is a problem
hi seen the proveser today as the scan confirmed the psp he is doing a lot of couging now and other tinings i no im losing him just dont no what to do they have sugeseted psp orginisation but to me talking is no good something positive needs to be done
Hi Jim
How are you, well I hope. It is so good that you are still keeping an interest in the site, we still need your blogs and insight.
I do agree with you and carolsimmons, it is about expectations and mine are apparently very low. I just feel that PSP is so far beyond the general expertise and experience of the extra -mural medicos - the OT, PT, FALLs nurse, SALT, dieticians, district nurses, et al - and although they are very willing at first, they soon fall by the wayside and you are is still left largely on your own. As a matter of interest I have just asked our Parkinson's nurse if there is any medication that my husband can take to help with his rigidity, she has recommended levadopa. My husband was on Sinemet for three months following initial diagnosis, it did not help him and the nurse knows this, so why, I wonder, is she suggesting it now, it's because she has no alternative suggestion.
I will not allow my husband to be a guinea pig in a trial and error game of cards, our lives are bad enough and he is going through a horrible time, good god, they can't even help with the perennial problem of constipation!
With regards to finding an interested Neurologist, that's where the NHS falls down I think, you are allocated the neurologist in your nearest hospital and if you do find "the right one" you are very fortunate indeed .Going private does not always guarantee success either, my husband saw a few private specialists at the beginning of this journey, they did not even make a correct diagnosis and told him he had had a TIA.
Take care everyone and, if you have been, thank you for listening.
Dorothy T
Dear Dorothy - It's just plain wrong that you have to deal with all the failings of the medical establishment, which is supposed to help, with all you have to manage at home. I always value what you have to say, and can only hope that things get easier for you soon. Easterncedar.
Dear Easterncedar
Thank you for your support and encouragement. But I think there is a real danger in thinking that the medical profession can cure everything, they can't and we have to accept this. The tragedy for the doctors and nurses is , is that they go into the profession to cure, or at the very least, make a difference, and most times, they do.
Kind regards
Dorothy t
Dorothy! You hit it right on the head. MAKE A DIFFERENCE. Anyone that can do this is a godsend whether it be a medical professional, hospice, blog group, friend, caregiver, pastor, etc. I think our responsibility as a spouse is to continually look for these people. Yes, you sometimes have to weed through a lot of people who are uncomfortable with what you are wrestling with and will do or say anything to get you to move on. RUN from them and keep searching. We found our miracle people at hospice, in caregivers, and in friends. Our doctors always did what we asked, but never took the initiative to anything. They just don't know and I believe their burdens are sometimes even greater than ours.
I think about you often and hope that your burden does not become too heavy. I pray for all who are affected by the ramifications of this terrible disease, but you have become personal to me.
Caroline
• in reply todorothy-thompson
Dear Dorothy T,
From what you write, your experience is very similar to what I had. My father suffered with extreme rigidity but he had been put on levadopa for years because 'they' thought he had some type of Parkinson's disease. The whole of his sickness was a guessing game as far as the medics were concerned, it seemed to me. In the end Dad had dystonia caused most likely by long term use of levadopa. I would never give a PSP sufferer long term use of this drug. Dystonia is incurable too. I have written about this several times. They did give Dad a trial of Rotigotene and I thought that really good for rigidity problems but, the NHS staff made a mess of giving him this and they stopped it saying that it did not work. We thought it worked but had we been able to continue we cannot say for how long. I think they stopped our access to the drug because of the expense and they knew they would be giving expensive drugs to a hopeless case who was already in his nineties. I suggest that you look up on goggle the difference between levadopa and sinemet. I believe sinemet does contain levadopa but has something added to it.Check out Rotigotene too, you might feel like giving it a try once you have some more info on it. Best wishes,Anne
• in reply to
Sorry Dorothy T, made a typo, I meant google not goggle! Bed time for me I think!
Hello Dorothy, I was listening and you really sounded as if you were temporarily close to the end of your tether.
Like you I found that once the professionals realise they don't have a cure or their expertise doesn't quite measure up to the problem there is a tendency for them to back off. At least that was my experience. Where I was lucky was in the wonderful support from social service care workers, I live in a country area and the carers were all local women who quite clearly looked on their job as a vocation. I was also fortunate that my wife's friends and our children were all very supportive and frankly without all the help I don't know how I would have managed. It certainly wasn't the medical professionals that were the leaders in making things easier for my wife, they simply didn't have the tools for the job. Even with all the help and a wife who seldom, if ever, complained there were times when fatigue gave me a very jaundiced view of the situation.
I only wish there was some way in which I could be some practical help but know that at the end of the day it is a very lonely and personal battle; without this site it was a good deal lonelier. Your advice to accept help from whatever source is available and not to search for a cure is just how I see it.
Best wishes and kind regards, Jerry.
Dear Laila,
I agree with Dorothy-thompson. There absolutely is no cure and what you are faced with is to try to ameliorate suffering from the various conditions that arise as our loved one travels along the PSP journey. This site is wonderful for tips, advise, support and sharing experiences of this that or the other drug. My experience of the PSPA was varied. It depended on the volunteer one happened to talk to. It really is the luck of the draw with consultants, the ones we came across just seemed to wring their hands in despair because they knew there was so little they could do.The best help I ever got was from this site, so my advice is to stick here and ask anything you want to know here as there is bound to be someone who can offer help. Good luck.
Dear Dorothy,
My mind keeps turning to you and your struggle with the rigidity problem. This caused my father much distress. I tried Baclofen with him and I believe some people have success with that but it was not satisfactory for my father as initially the GP gave him an over-dose and sent him into a coma for a couple of days. Then even when given as directed by the manufacturers it relaxed the muscles in his throat and so affected his swallowing. I would have liked to have tried medical cannabis or cannabidiol as it is also called with my father, but did not get the chance. I looked up cannabidiol on wikipedia. It gives good info on there, I thought. Medical cannabis has been used for 20 years in the USA for MS and as there is ,seemingly, nothing else that we can be sure will work, I thought it might be worth while for you to consider and try if you can find a progressive consultant to 'oversea' the trial If your husband is a bit 'stroppy' at times, maybe it would help to soothe his mood too. Just a thought.. It is not like taking cannabis as we normally think of the drug, it has all the chemicals that have psychotic properties removed. They have just started to increase the production of cannabidiol in Canada whilst making possession of the raw weed itself a banned substance.
Our consultant also mentioned diazipan as a possible drug to try!
Kind regards
Nader.
Hello again, Laila -
With my husband, the neuro-physio was attached to the local hospice. They really did understand the problems.
Towards the end they offered respite for a couple of hours once a week (for me to have a break). It was wonderful being able to switch off knowing a trained nurse was with Tony. In the UK, I believe the Macmillan Nurses are also able to offer such a service. Too late in our case but it might help someone else.
Mo
Dear Laila,
I took my husband to a neurologist a year and a half ago after 3 years of 6 or 7 different doctors. the Neurologist was uncertain but thought PSP or CBD. It was the first time something made sense. we'll have our 3rd appointment at the end of June. the appointment was supposed to be 6 months for the last one, but he didn't have an opening for 8 months! The time in-between seems like an eternity. He has progressed during the last 7 months, and a lot during the last 3 years. Fortunately he can still walk a lot of the time unassisted. Mornings and evenings are the worst for him, I have to walk behind him and hold on to keep him form filling backwards, or sidewise. He has a host of other difficulties, light sensitivity, swallowing, weakness in his hands and legs, thought processing difficulties; pain, etc. but it seems that every time we go to the dr. he walks pretty good and can process his thoughts pretty good. I want to bring a recording in of what I see on a daily biases. I think that's what happens sometimes...the drs. are over scheduled, and when they see you for 10 minutes, the don't see the whole picture. We really like our neurologist, and I think he's probably doing the best he can under the circumstances. His confirming (or as much as possible) PSP or CBD won't change our outcome, and he is willing to help treat symptoms. But it does make me crazy sometimes the not knowing! My thoughts are with you. This site is full of people who know what you're going through. They listen, and when you feel like nobody understands...read something someone else has written. It makes me feel sad that so many are going through this too, but I don't feel so alone. I hope you find the right dr.
LynnO
TOUCH OF PNUEM0NIA BUTWHAT I WAS TRYING TO GET AT WAS THERE IS NO ONE IN THE WARDS THAT KNOWS WHAT PSP IS ISNT THAT CHARMING BECAUSE THE FIRST THING THYAT CAME TO MIND WAS IF NO ONE KNOWS ABOUT IT HOW THE \\\HELL ARE THEY GOING TO TREAT ME=== WITH RESPECT I EXPECT BUT I DO NOT FEEL VERY CONFIDENT WITH THAT SO I BEGAN BY STARTING TO INFORM THE DRS WHICH WAS FORTUNATE BECAUSE THERE WERE A GROUP COMING THROUGH THAT WERE A GROUP OF TRAINEES DRS SO I OFFERED UP MY BODY TO BE EXAMINED AND FOR THEM TO GIVE A DIAGNOSISE IF POSS\ AND WHILE THEY WERE DOING THIS INFORMED THEM THAT WERE NOT DOING A VERY GOOD JOB AT DXN PSP PATIENTS WELL THE FIRST BATCH LOOKED A LITTLE SHEEPISH BUT CARRIED ON WITH THE EXAMINATION SO I BEGAN TO BLEAT AGAIN
WITH SUCCESS I THINK THIS TIME CAUSE UT SUNK IN AND MY WIFE WAS ALSO THERE TO PUT IN HER SIXPENNYS WORTH OR WHATEVER CURRENCY THEY USE NOWI AM DOING THIS EM BY THE LIGHT OF A TORCH EVERYONE ELSE IS ASLEEP SO ITS A BIT AWKWARD BUT HE STAFF HAVE BEEN THE TOPS AT YPOUR BECK AND CALL ALL THE TIME NOTHING SEEMS TO MUCH TROUBLE FOR THEM ANYWAY I GOT TO GO NOW SO GOOD LUCK EVERYBODY TAKE CARE PETERJONES QUEENSLAND AUSTRALIA PSP SUFFERER
IVE SEEN THE STAFF IN ACTION HERE AND I HONESTLY DO NOT THINK THEY GET TIME TO PASS WIND LET ALONE READ ABOUT PSP SEE YER ALL YOU LOVELY PEOPLE
Get well soon Peter!
Be gentle with those pretty young nurses!!!
Lots of love
Heady
Good for you, Mr. Jones, and good for your missus! I bet those youngsters never forget you, and will always catch psp if they ever see a patient with it. Oh I wish I had your energy! Feel better soon, all the best, Easterncedar
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