Following Diane's advice, deep in another post, I am starting a post on the subject of speech. Sadly through lack of diagnosis, probably trying to be too independent etc. Etc. We have have had minimal help / intervention with John's speech, which sadly has deteriorated relatively quickly and has now pretty much gone. It is probably too late to help John, but it might be useful for members to share their experiences of what help / technology is available so that others can get help quickly and preserve voice communication for as long as possible. Loosing speech is at least as devastating as the other physical indignities of this disease. Possibly more so.
Amanda
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As I said in the previous post we have had input from our speech therapist who has referred us now to the communication team for our area(north West/ Greater Manchester) they are a charity called ACE who work for the NHS here. They have done an in depth assessment and we are waiting for some equipment to be delivered and set up for Geoff's needs. We too were probably a bit independent and didn't think about voice banking whilst his voice was still clear.
Hello Amanda. Jax was referred by her speech therapist to ACT in Birmingham - NHS specialists who have been excellent with advice on technology. They came to the house to help and I am sure you will have a similar specialist unit in your area.
We have come to the conclusion however that some simple charts to point to words with most used phrases are useful to complement the technology. We have been given some templates that I am modifying to personalise the main things in our life - e.g. Eating, dressing, emergency, health etc. If you haven't received something like this let me know and I will send through to you.
I am away from a good internet connection but I seem to recall some useful information on the MSA Trust web site on communication.
Take care, Ian
Carol has found that after see numerous speach therapist's that simply saying the vowels out load and slowing down her speach is the best way forward.
Diane it was the same with my husband. He sadly died in February. Nobody really seemed that interested in him to be honest. I had to threaten the Speech & Language people with the CQC because he was struggling to swallow apart from his speech going downhill at a rapid rate. I have to say they suddenly found a Speech Therapist after that! I was shocked to be told she didn't believe in any exercises as the effort was too great! However my husband was going down rapidly and ended up in a Care Home last September because of pneumonia. We didn't know that was what was wrong but within 24 hours he was in hospital! He recovered but had gone down even further.
He went back to the Care Home and within a month was bedbound. He just gave up because they wouldn't put him back to bed when he had had enough of sitting out.
Then we waited until the end of December (from the beginning of October) to get CHC funding. Too late of course, because as I was trying to visit Nursing Homes he got aspiration pneumonia. This time he recovered according to the consultant but 24 hours later they removed all medication and fluid from him! I objected but nobody did a thing about it! So he died.
I am heartbroken and miss him so much. I can't believe someone can be told they have recovered from the infection and 24 hours later are put on the end of life pathway. This without our agreement too. Please please take care if your loved ones because I will forever live with this. My daughter was present too and she is suffering greatly as a result.
Diane, thank you do much for your response, and all the others. It seems that every area is different. What makes everything do difficult is the continuing deterioration and the feeling you are constantly trying to hit a moving and diminishing target.
I am so sorry for your loss. Your story sounds so painful. I hope you can find some peace at some point. Very Best Wishes. Amanda
From my experience I found that it too such a long time for support to be put in place. For example if my father was able to have had an I pad when he was first diagnosed, he would have been able to input key phrases to use to ease everyday life and have time to familiarise himself with functions before he deteriorated. Things take too long to happen and time is very precious for families affected by MSA.
I am so sorry that you had such a poor experience with the care of your husband Marie. We don't get much support either. Bob was discharged from speech therapy a long time ago without any assistance for his very poor speech, although we live in Stockport so could have been referred to ACE mentioned earlier. The problem is knowing what is out there to ask for. I kept asking for speech therapy and communication AIDS, but didn't get anywhere.
In Worcestershire we have a "Lead Nurse Complex Neurology & Rehabilitation" who is assigned to support Jackie. If you have such a person they may be able to help. We have found that she knows how to pull the strings to make things happen quickly. She is also a lovely person and a joy to have as a visitor.
It's such a shame that treatment appears to be so variable across the country.
I hope you and Amanda find the support you need for you loved ones. Ian
I live in Southern Ireland, where healthcare can be a bit erratic at times. Nevertheless, although we would heave had to wait 2 years to see a neurologist when we first knew something was wrong (we went private for a diagnosis). Once he was in the system , we had little trouble. Billy was referred to a speech therapist by his GP the moment he noticed his speech was a little indistinct. He went on from there to do the Silverman?? course. An intensive 8 week therapy course, and we found it helped enormously and prolonged his ability to speak. Eventually he used a portable microphone system, about the size of a Walkman, as his voice became quieter. He was a quietly spoken man at the best of times. When that was no longer doing the job he was provided with a Litewriter. A portable typewriting machine. Which also spoke. All of these enabled him to communicate for much longer. We tried the apps you can download to the iPad, but unfortunately they didn't suit him as they were too sensitive for his tremor.
None of these stopped him from losing his speech, but I do believe they prolonged his ability to communicated. All in all, the speech and language service here could not be faulted. He was regularly assessed as regards his swallow. .
If you are able to have access to them do make use. The exercises Billy was given all helped to strengthen his vocal chords. And he did them for as long as he was able. All in all, I believe we used them for around 6 years.
Be well out there. I hope you all have a good day. Beverley.x
We didn't get much help in speech therapy of any use. Mums speech deteriorated suddenly towards her end. She had previously been competent with an iPad but her shaking became too bad to use also. The more I read the more I feel she was let down with support. Her neurologist was appalling. It was frustrating not knowing where to start with having to find out for yourself for all other problems. We didn't have a Parkinson's nurse either in last 12 months.
After this therapy was prescribed by our doctor, we finally found a therapist about an hour away from us. It gave my husband some skills to work with to help his voice. It helped for a good while, but he has progressed so much with the disease. If you work on the exercises and skills at home regularly this method can help.
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