My husband Andy was diagnosed with CBD in March this year. We've had a lot of good, practical support for him and appreciate this very much. His consultant recommended him for Speech Therapy and the therapist asked if he'd like to try this voice treatment. It was developed for Parkinson's patients whose voice drops as the disease progresses. Andy signed up for it and has reaped the benefits. It was hard work for him and for me, his wife and carer, for it was four times a week for four weeks with voice exercises to be done at home each day as well. It was well worth all the hard work! All our friends and family have seen a big improvement in the quality of his voice and the clarity of his speech. Andy had been low before doing this course as communication was hard for him. We would sit in silence in the car for example. Now he initiates conversation and I'm so happy for him. He's confident on the phone too. I highly recommend this course. Life is about friendship and communication. Mental well-being is so important. Speech is such an important of our lives and our voice defines us.
The Lee Silverman Voice Treatment - a posi... - PSP Association
The Lee Silverman Voice Treatment - a positive therapy
Hi Galanthus welcome to our group. I agree with all the therapy you can get it is important to keep your husband moving, talking and thinking for as long as possible. We also did this with my mother in law a few years ago and it helped her. Unfortunately, that was before her diagnosis of CBD.
You see she lived alone and kept everything from us until a nasty fall landed her in the hospital 2 years ago requiring stitches, thats when the ball started rolling then she broker her ankle, and we stoped again. Formal diagnosis was this past spring but at that point she was already in a wheelchair with limited speech. It was not for lack of trying you see, it was waiting for the specialist appt.
Anyhow, back to you. What stage is hubby at? Is he walking?
It seems he is full of life and ready to fight and that is great!!!
There are less people with CBD on this page but the symptoms are cvery close to PSP however. There is so much help on this site I bless the day I found it
I am very pleased that PSPA is part-funding a research fellow in Aberdeen university to look into reasons for late diagnosis of these two diseases. I'm sorry you had to wait so long for an appointment. It took 3 years to diagnose CBD - 3 years of worry for all the family. We need research into finding a cure. Meanwhile we plod on as cheerfully as possible, one day at a time and don't look too far down the road.
Wow that sounds wonderful! Speech is so important. You will be ignored by people are talking if you don't add to the conversation. A specific program is quite positive step for the medical community. And that it seems to have had a positive effect is even more wonderful.
Well remember if you don't use it , you lose it....so don't stop those exercises!
AVB
I agree. We found modified LSVT BIG and LSVT LOUD programs very good for a while. Definitely worth looking into, especially in the earlier stages. By the time we got to them, my guy was too far along to reap as much benefit as he otherwise might have.
Hi galanthus. My hubby had the lee silverman therapy and it is great but he gave up trying so now a few years down the line and we can hardly hear him. So keep up the good work. It has benefits. Marie
Hello all ! My name is Shirley Norman 57, who lives in Australia, I have CBD and would like to know if anyone in this group have had Botox in legs to help with the chronic tightness? It sure is a horrible disease but I try to think positive every day and do what I'm able, even at a slow pace! Always have my walker close by for walking is low and so scared of falls! I have a scooter to go down town in which is a life saver to get out of the home for a while! I use to be a real people person, out going, but the opposite now because of my disability I tend to want to stay at home, which makes me feel safe! As a new member to this group I wish everyone a Merry Christmas and the best for the new year !
Hello Shirley,
My husband has PSP and he has received Botox in his arm and neck. He had a small in improvement with tightness. His neurologist says it often takes more than one dose to see a significant improvement.
I admire you for being proactive and positive about the disease. If you cannot get out and about, maybe your friends can come to you!
Take care and Happy New Year!
Sulking
Farewell
A question to the experienced.
