Madopar

[Northstar1]

Hello all

My husband has been prescribed Madopar 50 mg which is levodopa and benserazide.

He has CBD this is to help jerks.

I have not given this to him as the jerks are not too bad.

Has anyone had a positive experience with this medication please

[Aprilfool20]

I’ve been on it awhile now and I would say it’s given me some normal movement back. Unfortunately CBD doesn’t respond as well as Parkinsons,worth a try?jayne

[Northstar1 in reply to Aprilfool20]

Thank you xx

[AliBee1]

Hi. Nigel had CBD and was tried on Madopar but it did not agree with him at all as it cuased him to hallucinate so he was taken off it after 3 days. It is probably worth trying though as it may help. Everyone is different. For a while he was on Buscopan but was also taken off that after a while. I found that trying to get him to breathe deeply so that he relaxed helped the most. Sorry that I cannot be of any more help. All the best AliBee xx

[Northstar1 in reply to AliBee1]

Thank you xx

[Baileyboo]

Hi, my husband was prescribed Madopar to help with Parkinson's freezes. I can say that it did help to unfreeze him. Les had PSP. He was in a care home and the nurse there didn't know what they were for and didn't give them for the first 8 months.

I went in one day and Les was sitting in a chair with an industrial size fan blowing on him to help cool him down. He was having a freeze and needed Madopar to help him. I hit the roof and the nursing manager accepted not giving his medication was totally her fault. Les was given a tablet and amazingly he stopped perspiring and relaxed.

I can say that on the occasions Les had freezes Madopar help him. I know not every case of PSP is identical but yes this drug helped him. He was only given a tablet during a freeze and not as a regimented medication.

I hope this reply is of some use to you.

Love

Pat xx

[Northstar1]

Thankyou Pat will keep it in mind xx

[SewBears]

Hello,

My husband is being treated with Carbidopa-Levodopa for stiffness. I don’t know if Madopar is the same thing but his treatment is working amazingly. The Levodopa not only relieves his stiffness, it also lessens his pain level and his gait has improved dramatically. Most of his spasms are under control, but that is because he takes a small dose of Clonazepam at night. Sorry, I don’t know about Madopar.

We aren’t entirely sure which disease he has so we are concentrating on treating the symptoms. It’s trial and error. Fortunately for us the Levodopa helped. In my opinion... what do we have to lose if we try something new? It’ll either work which is fantastic, or it won’t, whereby we stop the treatment and try the next thing.

And... we keep soldering on. Best wishes for whatever you decide. Please keep us updated.

Love from I SewBears

[Northstar1]

Thank you he's not too bad at the moment I will certainly consider it and speak to the neurologist again.

Thanks again xx

[Retiredrocker]

I was diagnosed with CPD 5 years ago. From the start I was given Sinemet 25/100 tablets which are Carbidopa and Levodopa. I started on 1 a day and am now on 8 (4 doses of 2). I have regained use of my right hand and am concentrating on exercises and physio.

I have no medical expertise but I found you needed to take the tablets for a while. Some it works for and some it doesn't. Try what you can and keep positive.

Al the best Mick.

[aliciamq in reply to Retiredrocker]

Who did you rick with, Mick? My husband has been on Sinemet for years and years (since 2012?) He has also been taking amantadine(symetrel) a couple if times a day. PSP is, of course

, progressing, but, he can still, with assistance go up and down the stairs ~~~ meds or luck - we'll probably never know. Good Luck to you✌🏼

[Northstar1]

Dear Mick thank you for that it's good to know. If you don't mind me asking how old are you ?

My husband is 56 dx 2018 symptoms started 2 years before that xx

[Retiredrocker]

Hi

I am now 72 and was diagnosed 5 years ago but my symptoms started about a year before. As well as being diagnosed my Consultant recommended Tai Chi for balance. I now do this twice a week as well as attending gym. I am not sure where you live so havn't suggested other treatments, I live in the UK.

I had alien hand syndrome which I have had considerable therapy for and now the hand looks normal. I still do exercises whilst watching tv. When I was diagnosed there was little on the internet about CPD so I looked world wide and found a report in the US which suggested exercise helped the progression so I decided to fight it and still keep going.

I try and keep doing all that I used to but unfortunately cannot ride motor bikes due to balance problems. There is a great amount of information on the PSPA web site and I find the PSP family and friends group are great.

All the best, let me know if I can help further Cheers Mick+