Medication or no medication ?

[Auntiemary]

Hi, my husband has not been offered any medication for PSP, but his condition continues to deteriorate. The complication here is that he had a liver transplant 11 years ago now & still takes an anti viral drug ( his liver was damaged due to hepatitisB) along with anti rejection drugs. He also takes a blood pressure pill & a few others so because the cocktail gets larger & larger I haven't pursued further medication. Do people feel prescribed drugs make enough of a difference that I should pursue this with our doctor ? It's impossible to know how long he has had PSP, but I would say 5-6 years at least. Life has certainly been a roller coaster for 12 years & he is unrecognisable from the man I knew. His balance is very poor now, although he's so determined he manages to look after his daily routine more or less by himself. His speech varies according to how tired he is.

[Hidden]

i WOULD DISCUSS the whole situation with a neurologist if that is possible. My wifes PSP progressed uickly so after 2.5 y from first symptom we have no or very limited ability to stand. Swallowing reduced a bit, using thickener for everything. Speech in contrast is reasonably good. On that basis they doulbled LDOPA from 4x 100 mg caspule and one 100 mg slow release to 8x 100 during the day. we have had a slight improvement in the stifness, but little else.We havent had adverse toxic effects (which can happend) so on balance its a good thing at th moment, but as with many drug reatments for PSP the good effects may not last. My wife has a very complex set of medications with a large number of possible interactions. I would quess you husband is in the same situation and needs expert help to avoid drug interactions which could add toxicity to your already very difficult siutation.

jmmb

[hooperhyde]

In all honesty none of the medication that was prescribed for Mum made any difference.

[easterncedar]

Dear Auntiemary, we have been very lucky to have access near Boston, in the US, to one of the few neurologists who specialize in psp. She has over the past three years prescribed various medications, but always with the statement that there is no real treatment available, and what we might hope for is a lucky, temporary alleviation of symptoms. We have tried almost everything people here have discussed. Nothing did help much. Psp is such an individually specific disease, one can't be certain that your husband would not derive benefit from something, but I trust our neurologist entirely, and think you would be justified in not further complicating an already very complicated regime of medication. The prospect of a long-term benefit isn't there. Keeping as active as possible is the best course, I believe. We are having some good results with the "LSVT Big" program for Parkinson's just now. I am sorry you and your husband are facing such a hard situation. Do take care of yourself, and please stay in touch. Easterncedar

[JudyJ]

I'm 2 years into my journey with PSP; am now considered 'mid-stage'. Thru both my experience living with this and frequent conversations with my Neuro, there is no medication to help with and/or modify the progression of PSP.

Medications available are to treat the symptoms. And I do use them; they help. It's about quality of life now.

Lately, I'm turning my attention back to supplements. I restarted COQ10 enzyme which I only took for a week a year ago; unfair chance. It's been about 6 weeks now and I am feeling better. Coincidence or in part due to the COQ? I also started a strong multi-vitamin which I should have done years ago. I'm a poor eater if I eat at all. Have an upcoming visit with my Neuro and Internist. Going to ask both about adding Turmeric. Have read on this site persons using it. It's an herbal supplement to help reduce inflammation and ease stiffness. Stiffness is a chronic problem for many of us, but I have Grade 4 arthritis in a number of joints which only adds to limitations for me. For various reasons, I cannot take over-the-counter or prescribed anti-inflammatories.

I'm also turning my attention more to wellness/healing centers or programs which I believe I'll benefit from. Seems contrary to PSP doesn't it? A disease that can't be healed? But I'll try just about anything at this point. Why not? Most of all it gives me some hope.

Best of luck with your husband and getting the help he needs. Tho I'm not a caretaker, I'm a caretaker/advocate of myself and I understand the frustrations, hurdles, and sometimes Doctor's 'double-speak'. It can drive you nuts. As others have said, take Care Of Yourself, too!

Best regards,

Judy

MN

USA

[shasha]

I HAVE TO SAY THA T HAVING HAD MOST OF THE DRUGS AVAILABLE FOR PARKINSONS D - I WAS AT AN

APPOINT MENT WITH MY NEURO AND HE SAID HAD I EVER HAVE AMANTADIINE - NO I SAID I HAVE NOT ( HE SHOULD HAVE KNOWN OFCOURSE ) BUT HOWEVRER II ATrted tJ=ING THE NEW DRUG AND I HAVE To SAy THAT THE IMOPROVE MENT EWAS DRAMATIC - I FOUND THATT I COULD WALK AGAIN PRETTY MUCH UNAIDED WHICH WAS AMAZING HOWEVER I HVE FIR A FEW WEEKS NOW STARTED TO USE MY WALKER AGAIN WHICH IN ITSELF IS NOT BAD BUT JUST AN INDICATIN THAT THE DRUG IS NO LONGER HAVING THE SAME EFFECT BUT I STTIL THINK THAT IT IS STILL WORKING TO A DEGREE SO I AM ATILL GOING TO TRY TO O THE THINGS THAT I CAN DO FIR AS ,LONG AS I CAN

BEST WISHES ##

SHARON

[shasha]

ALSO I FIND THAT MY DOUBLE VISION IS MORE OF A PROB,EM TNAN ANYTHING ELSE AT THE MOMENT HENCE THE AWFUL TYPING !!!