Any other medication for symptoms ?

[Maxine12]

Hi everyone.. My mam was put on amantadine 5 months ago and during that 5 month she really seemed to be a lot better, it helped with her swollowing, speech stiffness everything really.. Now unfortunately it seems like it has stopped working we were told if it did help at all it would only be short lived, and they were right.. I would just like to know if anyone is on any other medication that might help for a little while with her symptoms? I know there is no cure but it's worth trying something else even if it is just for a short while

Thanks guys

Maxine xx

[vlh4444]

Hi

[vlh4444]

Sorry that last reply seemed to get submitted before I was ready!!!

Hi Maxine, I was just going to say that my husband is not on any medication for PSP now. When he was first diagnosed (2013) he was put on Cocareldopa (Sinemet) which he continued to take for at least 18 months but neither of us was at all sure that it did any good, so after an experiment in which he came off it for a while and then went back on for a few weeks without any noticeable improvement at all, he decided not to take it any more. His Neurologist agreed. Apart from antibiotics for UTIs and eye drops for the relentlessly sore eyes, he does not take any medication. He has not tried Amantadine.

Are you in UK? It seems to me that in U.S. doctors are more inclined to prescribe a variety of drugs and more types of medication are offered. In general D (and I) are reluctant to take anything long term unless there is an obvious benefit, especially as there always seem to be unwanted side effects, but I know others have found some things beneficial at least for a while.

I'm sorry not to have anything more positive or helpful to suggest! Sometimes I think the best medicine is love and laughter administered as often as possible!

[Maxine12 in reply to vlh4444]

Hi vlh4444

Thank you for replying. I'm in the UK (Teesside) our neurologist said we can try the amantadine but it only works for 50% of people with psp, and even then it is short lived. However it did seem to work a little for my mam, everyone noticed a difference, she was on them over 5 months and now it seems all her symptoms are coming back, I just think anything is worth a try if it picks them up for a little while. But I do believe the same as you that love and laughter is the best thing to give them we are back to see our doctor next week so will see if there is anything else to try x

[york in reply to Maxine12]

We are also in teesside but my mother has not been prescribed anything like that and don't know of any other medication that we could suggest

[cabbagecottage in reply to vlh4444]

Have you tried bathing his eyes with a spot of baby soap and baby oil in warm water , the oil helps to attend the crusty bits can a,so try cold the bags to soothe

[vlh4444 in reply to cabbagecottage]

Many thanks for the suggestion about the eyes. We will certainly try it as he finds the discomfort very distressing.

[peterjones in reply to vlh4444]

hi vih4444 I think you are right love and plenty of laughter are the best medicine i went to my neuro about 3 weeks ago and he said to me are you taking any medication for psp I thought that's strange asking me .he should know. anyway I said no nothing he replied thats good and that was my visit to my neuro all very technical

stuff oh I asked him what would happen if I got really bad

he said I will put you in hospital !!!! take care mate se4e niter peter jones queensland Australia psp sufferer

[vlh4444]

Good luck with your doctor visit. I do hope he can give your Mum something that will help. xx

[DenB]

My husband was prescribed baby shampoo to bathe his eyes in the past, it always seemed to work.

D

[jillannf6]

HI I AM FM TEESSIDE ORIGINALLY - FM REDCAR AND GUISBRO BUT MY DAD (WHO DIED LAST SEPT IN JAMES COOK HOSPITAL AGED 92_) WAS FM MIDDLESBRO

I HAVE JUST BEEN BAKC FOR A WEEKS HOLIDAY SELF CATERING IN N YORKSHIRE AS MY EATIGN HABITS DISTRESS JMY PARTNER SO MUCH - WE ATE OUT AT LUNCHTIME BUT IN OF AN EVENIGN AND IT WORKE DQUITE WELL - APART.FM MY FALLS WHICH I BENT 2 PAIRS OF 3 SETS OF SPECS WHICH I HAD TAKEN IWHT EM BUT ON A HARD STONE FLOOR WHAT CAN ONE EXPECT?

ALL INJ ALL IT WAS A SUCCESS AND CERTAINLY SOMETHIGN WE WOULD WANT TO REPEAT

N YORKSHIRE IS WONDERFUL AT ANY TIME OF YEAR AND THERE IS SO MUCH TO DO AND SEE

SORRY I CANNOT HELP; WITH MEDS TO TAKE =- I HAVE TRIED COQU10 ; TURMERIC; AND EVERHTIGN BTU COCONUT OIL AS ALTERNATIVE MEDS BTU NO REDUCTION IN MY FALLS OR IMPROVEMNT IN MHY SPEECH A T ALL

LOL JILL

PSP PERSON INT HE UKL

[jillannf6]

PLZ EXCUSE THE DYSLEXIC TYPIGN(!!)

LOVE JILL

I NWO LIVE IN N W ENGLAND

[ahaigwood3]

Hey Maxine. I Care for my father in law and he too is on Amantadine 300MG /day. But it has stopped working. The neuro told me to stop giving it to home cold turkey and now for the last 5 days he is a new person... not in a good way. He cant function at all, cant talk, can stand, freezes up.....

Did you stop giving this to your mom? Was it cold turkey? Did you find something else?

[Maxine12]

Hi there, no we never just stopped giving it to her, our gp said to keep going with it until we go to see our neurologist who we are still waiting to see, so she still takes them every day!! I believe the amantadine worked for about 5 months, she wasn't having falls, could walk unaided, helped with speech and chocking!! the last few weeks we have seen everything start again, falls, chocking, etc,.. Unfortunately like I say we are still waiting for an appointment with neurologist to see were we go from here, if there are other medications we can try, but it always seems to be a very long waiting game. When we have been I will post to let you know how we got on.. Sorry about your father in law, this illness is dreadful and breaks your heart, lots of love to you and your family xx