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Multiple System Atrophy Trust
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MSA progression

Hi All, I hope that you are managing to enjoy the sunshine as much as possible. I haven't been active on the site for a while as things have progressed with dad. Dad is now in a hospice as he had been sleeping a lot and we were worried about dehydration and the risk of UTI's as be is prone to them. He had been sleeping for days on end and we did think that he was end of life. When he is asleep it is impossible to rouse him for food and drink and because of his swallowing difficulties, he has to be fully awake otherwise it is dangerous. The hospice have been trialling dopamine patches to try to keep him more aware but after a good initial response, it has lost its effectiveness. When he is awake, at times, he seems to be on different plane and we aren't sure how aware he is of what is going on around him. At other times he seems aware and will join in the conversation as much as he can with his speech difficulties. We have become very attuned to working out what he is saying most of the time.

As dad was diagnosed with MSA a number of years ago and he is 81 years old, we really aren't sure how long we have left with him. However, the Consultant at the hospice says that he is a very strong and determined person and so the plan is for him to return home with a much increased package of care and respite for mum. This will take a number of weeks to put into place.

The main issue is dad's difficulty in communication and although he has had a Speech Therapy assessment and despite several requests for follow up, dad still hasn't been provided with any communication board or aid. Dues anyone else have any suggestions that seemed to have worked as it is getting to the stage where dad's speech is so faint and slurred that we are afraid he will not be able to communicate his needs. I would be grateful for any advice.

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I am so sorry to hear of your dad’s issues, it must be so hard.

Jackie and I are, as of today, enjoying the sun in South Africa for two weeks. It was a bit of a gamble how the long haul flight would be for Jax. However, fingers crossed, all seems to have gone okay so far. Jax is resting and I am having an early evening beer and so all’s good(ish) in the world!

Getting back to your Dad. Whilst Jax thankfully is still managing to speak (sometimes translated by me!!); we have in the past looked at various speech aids etc. In the end we deduced that non-electronic aids were as good as anything else. I created a communication booklet for Jax but there is a very good one on the MSA Trust site at msatrust.org.uk/wp-content/...

Good luck with this and I do hope your Dad is able to satisfactorily come home.

Will we see you at the Three Counties (Herefordshire/Gloucestershire/Worcestershire) support group meeting in April?

Take care, Ian

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Hi Ian, Thank you so much for your reply. I hope you have a lovely holiday. What a great thing to do. I will have a look on the MSA trust website as you suggest. Unfortunately, I won't be able to make the meeting due to work commitments. I will try to make the next one. Sending lots of love to you both and thank you once again for your advice. Helen xx

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Hi, my mum has virtually no speech now except we have just discovered that if she talks in her sleep her speech is clear. Which I find quite strange but is lovely to hear her voice again. She has used various voice amplifiers in the past which when her speaking voice was just quiet, she also tried an app on her tablet which seemed a good idea in theory but she never got on with it because she struggles holding things and could never manage with the touch screen. We now just rely on a basic alphabet board provided by the SALT it can take a lot of time for her to point to the letters to make words up and must be really hard work for her but at least it gives her some means of communication. Wish you all the best with your dad hope this helps x

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Hi, Thank you for this and I am sorry that your mum is going through this as well. Communication is so important isn't it and it seems so cruel. However, we are at the stage where we just have to find some sort of solution to the problems that are presented to us to make it as good as we can. We will try your suggestions. It is very interesting that you mention being able to understand your mum's speech if she talks in her sleep. A few days ago my sister visited dad when he was very sleepy. He was aware that she was there but couldn't quite open his eyes. He did manage a conversation with his eyes closed and she said his speech was a lot better than she had heard for weeks. Thank you again for your reply . Helen

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I wonder if it has something to do with the muscles being relaxed. My mum often has her eyes closed and sometimes think she is asleep but she isn't and is aware of everything going on. She finds it hard to open her eyes by herself so we sometimes have to lift her eyelids up to encourage her to open them. It's horrible to see the people you love struggling with this condition every day.

Kathryn x

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Yes, it is so distressing to see dad struggle, especially when he was such an energetic, intelligent and capable person. The hospice have been very good in helping us to understand that dad does get some pleasure from life even now and that the care he receives and the time we spend with him really matter.

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sorry to hear your dad is going through all that , we are hoping to also get a speech aid for my dad who is 82, so hard to understand him , but only had msa for 4 years , it is so hard to get him to drink enough - he is so stubborn

he does love to get out in the sunshine

but haven’t managed it yet this year

i hope your dad is back home soon

sending lots of love

elaine x

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Hi, sorry that your dad is experiencing this also. I really hope your Speech Therapy Dept is responsive. Many thanks for your response. It really helps to have support from others who are unfortunately in a similar situation . Helen

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Hello, our speech therapy folk are lovely, but we kinda tell them what works. when dad is too difficult to understand or too tired to speak we have found the following can work: carer puts their fist inside his hand and says 'squeeze my hand if you want...' or 'blink your eyes if... ' or some version of that. Or we can get a clearer yes or no if the question is simpler(less brain processing needed) eg:'tv?' or "hungry?". His speech has improved since coming off madopar. Some people try holding up a board with yes and no and getting the person to use their eye gaze, but that hasn't worked for us. Best of luck!

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Thank you very much for your advice. I will check his medication as I am not sure if the hospice has changed it. Much appreciated. Helen

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Anytime. Guessing from context and from subtle facial expressions has got us a long way. I hope it serves you too. (I'm finding this post-madopar phase so remarkable that I will try and do a post about it. He was on a faint yes or no if we were lucky. Now, from time to time he comes out with a whole sentence again. Also begun talking normally in sleep). I guess the persons degree of cognitive slowing comes into it too. He can take anything from 20 seconds to 20 minutes/2 days to respond to a question. Kx

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Yes, the processing time for dad has increased massively. It's difficult for people visiting to wait for the response and to understand why this is happening. It's definitely a steep learning curve for us.

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That's interesting I have really noticed how long it takes my mum to process what I have said recently too. She also sometimes seems like her hearing has deterioted and we have to keep repeating things and turning the volume up a lot on the tv. Wonder if it is her hearing or her processing or a bit of both. Has your dad struggled with hearing at all?

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Yes, he has. He has the TV volume up very loud but can hear us when we talk normally. It is very difficult to work out what is happening.

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My son's speech is very indistinct now but he was given a light writer which is a great help when we can't understand him. He types what he wants to say and it appears on a small screen that we can read. Sometimes I wonder what we would do without it. It causes frustration on both sides when he can't make himself understood. I hope this helps.

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Thank you for this. Unfortunately dad has lost the ability to type. It makes it very frustrating for us all. I am awaiting a call back from Speech Therapy to organise an assessment. Wishing you all the very best.

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