DOES ANYONE WITH PSP HAVE HAD DRUGS THAT HELP

[jams]

HI I`VE BEEN DIAGNOSED WITH PSP FOR ABOUT A YEAR BUT 5 YEARS AGO IT WAS PARKINSONS IVE HAD NUMEROUS AMOUNTS OF DRUGS BUT NOTHING HAS IMPROVED MY BALANCE OR STOPPED MY FALLS,ANY ADVICE WOULD BE GREAT

I AM CURRENTLY ON L;DOPA ,AMANTADINE. +MODAFINA + AN anti depressant

[kay1]

I so wish i could give you a positive answer, my husband was diagnosed four years ago amd, as then, there is nothing new or helpful for him to take. It would be wonderful is some one could give us an answer.

x

[marytea13]

I was diagnosed last Dec but I dont know if the drugs I am on have helped me althought my physio has said my walking improved. I'm on Sinemet & Motilium for nausea from Sinemet. But nothing else. I am so pleased to 'talk' with a fellow 'sufferer' as most here are carers & I think its the suffers that need to be heard as often as possible. I am strill driving (had to have very difficult test) & trying to learn to play bridge but I find I lose track of the cards at times others I do ok. I notice I make mistakes on my computer where I used to be very accuracte. I think my eyes are changing & causing those mistakes. I dont see my neurologist until Feb 13 as he says I am 'stable' Marytea13

[jimandsharynp]

Mary, From what I've experienced and know there is no drug for PSP. The drugs available are to treat SOME of the symptoms but not all. For instance, there are drops for the eyes to keep them moist. We use Systeme GEL not the regular stuff, the Gel works best and lasts longer in the eyes. There are drugs for depression. As far as I know there are no drugs to improve balance and prevent falls. In some PSP patients carbadopa/levadopa works either for a short time or slightly over longer time. My wife has been on dopamine (not much difference) then off dopamine (not much difference) then back on dopamine as a higher dose (not much difference at two pills three times a day). Then off but no significant difference. Currently we are back on it in the event it even has some slight difference. As long as there aren't any bad side effects we will stay on it for now. We'll stay on it although I don't think it is doing much but only very, very slight improvement. As far as the swallowing there are some excercises you can do to help a bit but again no miracle takes place to my understanding. You can use a product called Thicken when swallowing problem is advanced. You can take Lee Silverman voice training which might help with voice level but you have to be very determined to do the excercises every day. As far as the handwriting there isn't anything I know of to "fix" that. ADVICE: While you can get s decent signature get one, take it to a store like Staples and have a stamp made of your signature. Later when your signature isn't ledgable you can use the stamp. That's where we are now. I found my wife's signature on a Power Of Attourny form that dated back when her signature was good, took it to Staples, had a stamp made. We now use that instead of an unreadable signature. So far no issues having it accepted. Hope some of this helps.

Jim P aka Jimbo aka jimandsharynp

[superman888]

Everyone seems to get similar drugs, namely Sinemet(Carbidopa/levodopa). We found very low dose valium good for anxiety problems and a sleeping tablet good for night sleep. Basically you are fighting the symptoms rather than the underlying cause. No drug exists yet that combats the underlying cause, but there are some on trial.

Personally I do not believe anyone should be driving once they get a diagnosis of PSP. Not only is that person a danger to themselves they are a danger to fellow drivers and pedestrians. There is no such thing as 'stable' PSP. The disease is 'progressive' and while it can be slow, it's never stable.

[marytea13 in reply to superman888]

Superman I will contradict u on your 2 items. I am still driving after undergoing a most stringent test of theory & practical. But I will stop if my eyesigt is effected. Also my neuro specialist Professor in clinical conditions, has me as stable & so will not be seeing me until early 2013. He's the one who should know if I am stable. Then again I have the PSP PD+ form which progresses more slowly than the regular PSP. marytea13 in Perth Western Australia

[DianneH]

My mum has had some help from Madopar. Just before she went on it she had been declining alarmingly fast and with a the space of a week went suddenly from being able to potter about in between care visits and myself for personal care and meals only to suddenly not being able to get up from her chair and was doubly incontinent because of this. The initial dose of madopar had a honeymoon period of 1 and a half weeks, as did the next 2 increases and she has been on the full doseage since April. She has been mobile with supervision since and we were not sure that the Madopar was actually having any effect anymore because she obviously continues to decline. However, due to a problem getting her medication continued at a new GPs in June she had a gap missing 9 of her 10 a day tablets which was roughly 12 hour's lapse from evening to the following lunchtime and she went back to how she was before starting Madopar so it showed us it was actually working to some degree. More recently she trialled Rivastigmine half dose patches for a month and as she didn't seem to have any change this was upped to full dose but within a day she went into total decline and lost the strength on one side completely. It appeared her Madopar had been compromised. She was almost permanently asleep and had gone from being able to walk about in a very wobbly fashion with her rollator to needing to be totally hand fed and helped in and out of chairs by 3 staff. When the patches were stopped she virtually collapsed but then began to improve slowly over the next 48 hours. She has not regained the strength in the right side fully after 2 weeks. Feeding has got marginally better -it's the hand to mouth problem rather than the choking at the moment. I will not be allowing any more 'experiments' as I recognise that what we have is as good as it gets and enough to maintain an acceptable quality of life for the time being. What made me very upset was that the 3 Parkinsons and PSP specialists I spoke to after things went wrong, all said they had never heard of Rivastigmine helping PSP so I am angry that the Consultant in Elderly Psychiatry had even tried them , particularly when we had constantly said mum was not showing signs of dementia that this would treat eg visual hallucinations etc. I would say with PSP and medication-be careful of what you wish for. Because of PSP's progression any steady phases can be followed by a sharp decline and could be just giving us false hope. Until they find the cause it is hard to see how they can treat this. Be strong. x Dianne

[Saint]

My mom has had symptoms for four years. During this time, she was misdiagnosed with Lewy Bodies as well as bipolar disorder.. In Feb. 2012 a neurologist diagnosed her as PSP.

He gave us the news with no explanation about what it was and said that he would see her again in one year. Left with no support but Google, I spent hours on the computer. I do believe that PSP is her correct diagnosis. By March she was only able to shuffle and could only speak in whispers. Thanks to having a 17 year old Labrador, I found a supplement that had an immediate positive impact on my Mom. My vet recommended Neutricks for the dog and it greatly improved her cognition. I searched the main ingredient, apoaequorin, and found a supplement for people with the same ingredient. It is called Prevagen and it is available online as well as at Walgreens. Apoaequorin is jellyfish protein. The company won a Noble Prize for Prevagen in 2008. Mom is again able to walk and do PT everyday. Her voice is very close to normal again. My Mom's geriatric doctor says it will do no harm and to keep it up. He says the jury is still out on this supplement. Some doctors believe it works, others do not. When my Mom's housekeeper saw the immediate impact it had on Mom, she bought some for her own Mother who has the same symptoms. Once again, immediate positive impact. We did this in April and so far we are both convinced that Prevagen has give us back our Moms. Recently my Moms eyes are giving her more trouble. We have a long awaited appointment at Mayo in Jacksonville in September.