My husband was prescribed scopoderm for drooling (they are primarily for travel sickness) and it had the most remarkable effect
He was able to speak, walk and eat really quite well after not being able to speak for over a year.
The effects wore off after a while and we then used 2 patches which are still giving him some help with his symptoms
I would recommend you all try them it's worth a go being as there is no other help available
Let me know if you have any joy
Wow, could he walk before he took this medication? I think this Medication can dry the mouth out quite quickly, and needs supervision, did your GP recommend this or prescribe this medication? If not seek there advice as i don't think it's a long term solution. but if he can walk again i suggest you tell the Doctor straight away as it must have something that helps the brain in it? good luck and happy your having some better happier times with your Husband. keep the good work up
My father was prescribed the patches last week and he is also able to speak more. Before, he was unable to talk and would make grunting noises. Since he has been on the patches, he has been talking a lot more and it is quite clear. He told me off for biting my nails the other day! He has also been sleep talking too!! The patches were prescribed by the GP after a nurse suggested it for excessive coughing/drooling
HI, I'd like to use the patches but here in Italy I can't find Scopoderm.
Does anyone Know if it's possible to buy it with no prescription?
I want to try anything to help my mum: this i understand can help her speeches and avoid drooling. Isn,it?
Thanks to all of you, I feel i'm not alone!
Hi Joe - try asking your doctor for Scopolamine patches - same thing - just a different term.
This sounds like it is worth a go. I will ask about this for mum as she has suddenly just dropped into an unexplained bad spell 2 days ago where she just lost everything physically as if they had stopped her Madopar and although she is coming out if it slowly the coughing has been more of an issue, especially with uncontrolled saiva.
*. Jo75 it comes across to me that each country often has the same treatments but under different names. Try asking the PSP advisors as they can find out for you.
Dianne x
That is amazing news!!! Thanks for sharing that! I would do anything to hear my dad talking again! He has not been talking at all for about 2 years now and we have tried everything but nothing worked. He also can not eat, he is PEG fed, so it would be a miracle if he could do that again, even if for a short time. It's devastating not to be able to communicate with him and I keep dreaming of him talking again! My family lives in Italy. Do you know where we would be able to find Scopoderm? Can you please let me know as soon as possible? I would really appreciate that. Thank you very much. Alessia
Hi Joey
I am happy for you, as others have said, whatever helps, grab it with both hands. BUT - I have to say that the more I read this forum , the more I wonder just what is going on. We live in the capital city of the sixth richest country in the world, we have a national health service which is free at the point of need and yet, and yet, since my husband was diagnosed with PSP in October 2010, we have had precious little in the way of help through medication. Since his origional diagnosis, we have moved into another health authority area and my husband has recently seen another neurologist. He promised much and has delivered nothing and our next appointment with him is in September 2013!
The original consultant who diagnosed PSP prescribed Sinemet - which did nothing - and that was only because he had to be sure that it was not parkinsons plus - most of you will be familiar with this scenario. When he eventually confirmed that it was PSP, he actually told us that there was nothing more the NHS could do for my husband but "by all means ring us if you want".
All along the line all I have ever had are, platitudes from the medical profession "you're doing a grand job", forms and phone calls from social services and constantly being asked "what sort of help do you want" so that they can justify their jobs, but never a face to face visit when it would be plain for anybody with half a brain to SEE what is needed.
I have said before on this forum that the only two rays of sunshine in this sorry state of affairs, is THIS forum and our Blue Badge for parking for the disabled which has enabled us to day to have a visit to the Courtaulds Art Gallery in London with our grandchildren!!
Having had this rant, I have to say that my husband probably has the slow progression of this terrible condition as he is relatively mobile, he eats well, coughs, yes but has no real problems with swallowing. The real problems are his moods. He is aggressive, he is both verbally and physically abusive, when he wants to do something, he wants to do it NOW and will not take no for answer and he can be very unreasonable in his behaviour. So, what medication can anyone suggest for this?
Take care and a happy new year to you all.
dorothy-thompson
Dear Dorothy, I have been told by my PSP advisor that there a few 'black hole counties' regarding knowledge and understanding of PSP. I live in one of them-Medway. However mum's neurologist has been extremely helpful and was very quick to see that mum has PSP due to her eye movements among other things.Prior to that we had been fed rubbnish about balance problems etc. Mum was given Madopar and the dose upped fortnightly as the honeymoon periods wore off and she has been stable except for illness. I would be careful about medication as some things can disturb any relative stability of the illness. Mum took a dive when a dementia specialist trialled her on rivastigmine patches and she never regained what she had before the trial. I have read that even paracetamol can cause fluctuations with PSP/Parkinsons medications. The impatience will surely go as he slows down and you will actually miss it. Mum was the most impatient person until this all kicked in more and more and now she has been forced to slow down by the cognitive process. She does still give up when she is trying to find a word or tell us something and we can't hear her and she does sigh often and although I know that goes with it, she does it in appropriate moments when she is clearly fed up with it all.
Joey,
Can you tell us how long it took for you to see these remarkable changes in your husband? How long had he been wearing the patch?
As I am sure you know, when a person with PSP is told something helps, they do have a tendency to obsess over the idea. I put a patch on my dad yesterday and naturally he thinks he should be seeing results instantly!!!
Please tell me how long it took for your husband, I would appreciate it.
Thank you
MJ
The excessive coughing and drooling stopped quite quickly with the patches - within 24 hours. Dad took about 4-5 days to start talking in sentences. Since he's been wearing the patches (coming up to two weeks) he is now able to reach out for his bed controls and move his bed to the position he wants (he was unable to do this before the patches).
Joey and Faiza,
How long did you continue with the tablets? We live in India and my husband has been diagnosed with PSP. He used to speak haltingly earlier.. Now speech is almost but gone... And whatever little comes out is slurred . Would love for him to speak again. Do also let me know abt any side effects.. He is on syndopa plus twice a day.. I feel it helps him with his movements.
Padma
Hi Padma
Dad has been on the patches continually for nearly three weeks now. He just has to wear one patch behind his ear which is changed every 72 hours. He talks more when he has two patches on but it was amazing to hear him talk properly. Let me know if you have any luck and if you have any further questions
Faiza
Hi Padma,
The patches were prescribed by my father's gp. So you will have to go through your husband's doctor to get them. They are also called Scopolamine. I live in the UK. I hope you can manage to get them for your husband. Let me know how you get on.
Faiza
Dear Faiza,
I have started my husband on Buscopan which was recommended by our doctor. Started him on Thursday . Will let you know if there is any improvement.
Padma
Pram, dad was on one patch behind the ear, but you can you go up to two. I called the drug company to ask about why this effect had occurred and they were most surprised. It isnit a common reaction. I wonder if the good effect is related to the type of Psp. Faisa, has your Pwpsp progressed quickly? Dad seems to have done.
Note the scopolamine in tablet form doesn't do anything. It's the patches that help
Just realized I hadn't posted ... Tried the scop patches... It did not work at all for his speech.. If any, whatever little speech he ad was also lost.. So decided to discontinue scop sometime end February.
1009Luck
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