PSP Association
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Botox anyone?

Does anyone have experience of the benefits of Botox with stiffness in arms? Is it available through NHS( in UK) or privately? Does it work?

My husband has cbd and he is so rigid and immovable now that he has a horrible pressure sore on his arm which he got when he was in hospital last time. It is not healing and in fact getting worse by the day. District nurses come out from time to time but haven’t been recently because of the snow. Just trying to think of another way forward to deal with it.

Thanks to all

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C was offered Botox on the NHS for his eyelids but he refused it. You will know doubt get replies from folk who have had it. My 11 year old niece has cerebral palsy and for several years, despite long sessions of physio, it didn’t improve. One day she came to see me, held up a flat hand and said,”High five”. She had been given Botox injections and it’s amazing. She still has massages and physio and the injection is repeated every three months. If your husband can have them I hope they are as successful as hers.

C had a pressure sore which was getting bigger. He’d had it for 6 weeks before deciding to have a PEG fitted. The high nutrition value of the feed cleared it in two weeks. He didn’t have to PEG to extend his life but to improve it until he decided he wanted to go which he did 10 months later.

XxxX

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Thanks so much for this. My husband has a PEG alreadywhich is why I am so worried about this sore. I will ask the doctor about Botox. X

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There are different calorific/nutritional values to the feed. I was told the sore wasn’t healing because he wasn’t getting enough nutrition. I would ask the HENs about it.

I do hope it soon gets sorted. It’s so distressing not being able to help.

XxxX

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My son had NO pressure point (bed sore) until AFTER being fitted with with a PEG. The Peg was put in after his 2nd bout of aspiration pneumonia (the 2nd time being hospitalized for 7/8 days). He took the formula feeding for 5 weeks. The bed sore NEVER cured/disappeared.

My son gave up being fed after five weeks...............I am starting to finally accept that each individual can manifest PSP slightly differently.

Best...........Margarita from Los Angeles, CA, USA

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Margarita I am so sorry about your son. It does seem that everyone experiences these things differently. My husband didn’t have sores until recently after he had the PEG fitted but his stiffness and rigidity has got a lot worse - part of the illness. Hope it is warmer in LA. We have lots of snow here. My husband loved LA and we visited many times. X

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Thank you for responding to me. It has been 10 months since the passing/death of my son. When he was ill and still with me I had little time to read the sharing on this site. I have learned so much since. I skim/read the postings each day. It helps to heal the loss.

My son's first symptom was DOUBLE VISION, March 2014. The Summer of 2013 I had treated my son (never married) and my daughter's family to two weeks in London. We stayed at a B&B near the British Museum. My son, a free-lance bass player, loved both the Beatles and Shakespeare. He in his early 30s had bought the entire BBC Shakespeare plays and watched them with his grandfather. I am so grateful that he got that time in London.

It is 53 degrees here (cold for Los Angeles) and has been raining since Thursday night....a steady but gentle kind rain. We need it. I have been fortunate to travel and though I find the earth quite beautiful and people kind whether it be Cairo or London, Paris or Jerusalem, etc, I give much thanks for the blessing of living in Los Angeles

MY prayers and good thoughts are with you....Margarita

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My husband had botox to try and improve the spasm in his left hand. It did help but didn't stop the spasm altogether. He had the injections every 3 months. It was all on the NHS. I hope it works if you can get it for your husband, it is certainly worth trying.

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Thanks so much for replying. I am definitely going to ask if he can have some. Even if there is a slight improvement it will be worth it. X

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My mom had 2 rounds of Botox for pain and stiffness. The first one helped slightly but the effects wore off after about a month. The second round 6m later did not show any marked improvements after a week but pain does seems to be lesser now. It is hard to tell what the exact cause for worsening and improvements are.

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Thanks Anna. Worth a try I think. X

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I'm taking Valerie to see our neurological consultant on Weds to talk about botox injections.She has PSP/CBD crossover and her left arm has been rigid for about 2 years - her right hand is now going the same way.

It really annoys and upsets me that we only get to hear about these treatments on this site instead of from the so-called professionals ! I heard it from Tim (Tjayoo) whose wife has benefited from it.

I'll post when I see how we get on. We live near Swindon and go to GWH so don't know if it's offered anywhere else.

Bryan

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Thanks for this. Yes it is so typical that you only hear about things on this site. We haven’t seen a neurologist for over a year now.

Once my husband became bedridden and under palliative care he just seemed to drop off the system but the rigidity causes him so much pain now . I shall be talking to my GP about it tomorrow now I hav3 so many positive responses.

Good luck at GWH I will look forward to your post.

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R has had botox injections in his arms every three months since June 2017 (on the NHS) to help with rigidity. It takes a few weeks for the effects to be seen, then say 4-5 weeks of improved mobility and then a gradual return to rigidity over the last 4 weeks or so. Each time the amount of botox has been increased and we have been told that there will come a point when the botox won't be effective, no matter what the dose. We also have a whole routine of passive stretching exercises for arms and legs (take about 45-60 min to do) that we do at least once a day and the rehab specialist says they are certainly worth doing. I think the botox is worth having even if it eventually loses its ability to help the rigidity. Certainly helps with dressing when at its peak effectiveness!

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