My father also has PSP, very sad. I am glad I found this sight and have read so many postings. I do have a couple of questions

[Charliesyoungest]

My Dad doesn't have the spasms yet, but for future reference can anyone tell me if the Baclofen, massage therapy to specific areas helped or even hot or cold to specific areas?

[JudyJ]

I'm sorry to hear about your Dad. But, don't forget to take of yourself, too.

I'm in the middle stage of PSP at 55. I tried several homeopathic methods to help with my spasms, but unfortunately, the didn't work.

What has worked is a prescribed muscle relaxer but I only take it a bedtime. The good news is I started at a low dose and remain on a low dose. And, I don't need it every night.

I'm interested in hearing from others their responses to your question. Perhaps they'll have some suggestions I overlooked and can try. The less meds, the better.

Best of luck to you and your Dad. How old is he? Does he have others to help besides your self?

Welcome to this site. I'm so grateful for it as well. It's been a few years for me now and is a wealth of information, compassion, insight, and empathy. And...a place to vent. Venting is not only okay, often necessary

Judy Johnson

Minnesota,

USA

[easterncedar]

Hello, charliesyoungest. Sorry about your Dad. There have been a few questions here about baclofen lately, which interests me a lot, since our neurologist just prescribed a low dose for my guy with the idea that it might relieve the general stiffness in his legs that contributes to his unsteadiness. He hasn't started it yet. There are lots of past posts on the forum here that will give you good information about the various treatments for spasms. With psp, every patient has unique experience. Best wishes, easterncedar

[Cazmat]

Hi

My husband has CBD ( diagnosed 2yrs ago, prior to that he had been told he had Parkinson's) and was prescribed baclofen by our GP about two months ago for the stiffness in his legs he takes one in a morning and one evening so far no difference if anything he seems to be getting worse.

Good luck and best wishes

Cazmat

[Hidden]

Dear charlieyoumgest, and all, we tried backlog em with dad but found it relaxed muscles including those involved with swallowing. Dad got good relief from massage of all areas of body which we're tightening and I found that to ease the tension at the back of his neck and allow a more natural position of the head a cold compress worked very well. I had no access to ice so ran the cold tap as cold as it would go and apply a wad of very cold tissue paper. Often I would massage the really sore muscle areas with a pain killing cream or gel such as ibuprofen. I had no help or sympathy from doctors so made it up as I went along, just to give dad some relief. What a nightmare. No understanding or recognition of the disease at all from medics. I have spelled baclofen wrongly at beginning. Sorry struggling with new iPhone. Dad died in January and I have left England for a month and am in Oman, trying to recover from it all. I don't know what I would have done without this site and know others need help that is why I still sometimes answer posts if I think I can help.

[jimandsharynp in reply to Hidden]

Nader, Glad you are taking some time for yourself. I'm sorry about the loss of your dad. Thanks for staying involved in this site to help others. That is much appreciated by us all.

Jimbo

[jimandsharynp]

My wife is four or five years into PSP and never has had spasms of any kind. Some soreness in one arm but not spasms of any kind. But as I often post "PSP is not a one-size-fits-all disease". We all have to remember that what affects one patient may not affect another or will to a lesser degree. Timing of which symptoms occur and when they occur in the disease progress can be totally different between patients.

Jimbo

[Charliesyoungest]

Thank you everyone for your responses re: the Baclofen. I agree that each case of PSP is different. I am just being proactive I guess in researching possibilities to help as this terrible disease progresses. I can also see where the baclofen would affect each person differently. I feel helpless and angry at the same time, just as ALL of you do! SOOO glad I found HealthUnlocked for PSP.

[Hidden in reply to Charliesyoungest]

Cbd oil

[wifemo]

Hi Charliesyoungest -

My husband was on baclofen - don't know whether it helped (he didn't have spasms, it was just for general relaxing) but there didn't seem to be any side-effects either.

Best of luck.

Mo