Zolpidem works!! For PSP

[Silverguy888]

I have been giving my mom zolpidem for about 3 months. I kid you not, she was not able to even feed herself but after about 30 mins she becomes so active and wants to feed herself and tries to get out of her wheelchair. feel free to call me directly if you have any questions 4168390071 Andrew or email me: [e-mail]

[Hidden]

Good to hear your mom is receiving benefit from Zolpidem. This specific GABA agonist has been trialled for PSP over the last 20 years and one can find many publications in scientific literature. Some have shown mainly motor benfits, but often short lived. Others have described benefits for longer periods (many months). Like most medications of this type many PSP sufferers will experience side effects (that often mimic PSP symptoms).

Like many neurotransmitter medications, there can be immediate results due to the nature of the neurological diseases like Parkinson's, Alzheimer's and atypical Parkinson's. However, the medical community strives to find mediactions that will produve long term benefits for slowing or stopping such diseases.

You'll have to keep this forum informed how long this medication benefits some of the symptoms you have described.

All the best as you care for your mom.

T.

[Hidden in reply to Hidden]

I thought I might mention that Zolpidem (brand name Stilnox in Oz and Ambien in the USA) has been associated with some dangerous and bizarre sleep associated behaviours. It is prescribed for insomnia and certain brain disorders, but has to be used with caution. It may cause a PSP sufferer to have behaviours that may be detrimental. Always seek advice from your neurologist before using this medication.

Cheers

T.

[peterjones in reply to Hidden]

thanks for that strelley I took stillnox once that was enough for me I imagined all sorts of things\\\\ never again \\\ but thank you again for letting us know it was stillnox our name otherwise might have been tempted to try it I took it to try and break my sleep pattern which was all over the place and some years later on I still have the same problem anyway enough of that rubbish\\\\\\ how is mrs S going along mate ok I hope and I hope she is back to where you started with her before the respite or nursing home fiasco mate well I will say goodnight to you and mrs s take care wont you peter jones queensland Australia psp sufferer

[Hidden in reply to peterjones]

Hi Peter

Thanks for your post, and asking after my wife. She seemed to recover somewhat from the fall last year while at respite. However, in the last few months her voice and speaking has deteriorated, especially late in the day. I find it difficult to understand her soft slurred speech and her inability to find the right words. However, it's all part of the progression of this nasty disease. She's much slower 'all round" and always fatigued.

Hope you are coping. It's good to know you still have the ability to type on this forum. Take care mate.

T.

[Kevin_1 in reply to Hidden]

As always - thanks Strelley

Here are a couple of links for those who want to get some of the 'flavour' of what is being reported.

hindawi.com/journals/crim/2...

hindawi.com/journals/crinm/...

Also thanks for this post Silverguy.

Cheers

Kevin (a PSP carer)

[Silverguy888 in reply to Kevin_1]

I did speak to Dr.Dash and was encouraged by his thoughts. As to the reason I felt I had nothing to lose by trying Zolpidem

[Hidden in reply to Hidden]

I have been wondering how you are yourself, Strelley, since you mentioned last year that your own health had been causing a problem. I hope that whatever it was is at best cured and at worst under control. Any news?

Best wishes, Christopher

[Hidden in reply to Hidden]

Hi Christopher,

Thanks for your post and your concern. I am well in myself but am being "monitored" on a 3 monthly basis for a small intrahepatic bile duct stricture. The experts are not sure why it is there and whether it might turn into something "nasty". It is not causing any problems as yet, but if it turns out to be a cholangiocarcinoma, they'll want to remove my right liver lobe!!!!.

Cheers and all the best.

T.

[Hidden in reply to Hidden]

Thanks for the update. Let's hope they can leave your liver alone!

Christopher

[cabbagecottage]

that sounds rather like my husband normal as a reaction to a med . he becomes more animated and wants to go some where tries to get out of chair. Feeds himself with imaginary food or at least attempts to . HYPER. With eyes wide open . another time his head is down yes closed .

[inka]

How does that work when it's a relaxant meant for sleeping ????

[Silverguy888 in reply to inka]

Zolpidem has a different effect on people with Psp. As an example, without the pill she has a very difficult time eating. Give her the pill and she has more control over her swallowing and becomes more pyhsically active like picking up the cup over feeding herself etc