Pauline

[2georgepheobe]

Hi Iam 65 divorced live alone have recently been diagnosed with MSA don't fully understand it yet as it's not been explained much by my specialist. It all started in June when I noticed my left leg wasn't working properly I seemed to be dragging it my daughter's kept accusing me of been drunk as my speach was slurred. Had MRI this was outcome , 7months later I can't walk unaided need wheelchair, just about to give up driving I'm not on any treatment yet having MRI on spine then maybe some treatment.anbody else affect so quickly.

[SamanthaMSAT Moderator Staff]

Do get in touch with the MSA Trust. We can send you information about the condition and put you in touch with one of our Nurse Specialists.

msatrust.org.uk

[2georgepheobe in reply to SamanthaMSAT]

Hi Samantha I have received information about msa and one nurse rang me gave me some advice which was good , she said my local nurse would ring in a couple of weeks that hasn't happened.l just wanted to no how I contact her .And how I go about getting help with benefits if I am entitled to anything I am paying friends to help me and money is running out .

[Yanno]

Hello Pauline

I am the husband/carer for Jax. When she was diagnosed it was a worrying time as the specialists often know little about the condition as they have not come across many cases as it is such a rare condition.

I note that you live in the UK; we are very lucky to have the MSA Trust who will send you, and your doctor, an information pack about the disease. Best to look them up on their web site msatrust.org.uk. They also have nurses who are available to telephone (not visit) who we have found to be a great help particularly with advice on medication and practical help.

In Worcestershire there are some 'lead nurses for Complex Neurology & Rehabilitation' - I don't know if the NHS has them where you are but we have found the lead nurse (who will visit you at home) to be excellent at getting things sorted within the NHS system.

Feel free to ask for other advice should you need it as we understand how confusing things are when first diagnosed.

Take care, Ian

[2georgepheobe in reply to Yanno]

Thanks for replying I have printed some documents off and going to read them. I think when I no more I will feel better it's the waiting for all the results that is worrying thanks for your help it's nice to no someone with some knowledge of MSA .

Thanks. Pauline

[Glenn2014]

Hi my wife's name is Lillian and you know mine glenn. I was diagnosed in December 2014 with this illness MSA. I joined the trust straight away and they sent me a package all about the illness, the nurse, and useful information. Your sound like me I also wanted to know what this illness was all about. Firstly take your time absorbe the information slowly and remember not all you read with apply to you , each of us get affected in different degrees , secondary it's ok to cry. Thirdly now you have this illness go out and live your life . Terminal illness does meen that you have to give up just yet. Now voice banking while your voice is fine get your doctor to refer you to the speech therapy centre at your local hospital. Voice banking is free . It consists of you sitting down over a few days and recording a 1000 sentences then they are sent to America they them turn your words into a voice . It's free but in return they uses your voice for some body in the states who carnt talk usually a child. This voice fits onto an app called " predictable " which you can down load to you iPad. We had to buy our iPad and the app. It was to late for me my voice and now I have a male voice provided by predictable. I so wish I could hear my voice again it's part of who I am. Here in grimsby, Lincolnshire I seem to be alone here with this illness. However I'm lucky with neurologist and doctors at my G.P practice. And my family.

Now you should seek out a Tonning tables centre, mine is in my local leasure centre, they will help you keep your limbs moving. It's low impact but it helps me keep on my feet and mobile. Your doctor will help with all this. Just smile and remember Pauline even health people have to die sometime . Lillian and I laugh all the time but every now and again I cry. Not for me but for my wife and family. So be inspired and face what life has thrown your way. From Lillian and me.

[2georgepheobe]

Thanks for replying I have had a speach therapist come to the house spent 1hour with me left some exercises to do and said I would have to use text and computers when I get worse and discharge me my close friends can understand me but no-one that doesn't no me . I have physiotherapy at home but can't walk far even with crutches I am having to give up driving next month so I will be house bound then . I have had two neurologist already I liked my first one he explained everything but the new one doesn't have time for anything how do I get the package from the trust I haven't seen anything about that. Thanks for making me feel a little better when you haven't a partner to talk to it's hard I don't want to bottle things up .

Pauline

[Beverley52 in reply to 2georgepheobe]

Hi Pauline. My partner was supplied with a litewriter by the speech and language department, it helped for about a year. It's a keyboard you keep on your lap and it was very usefull for communicating with others. He had to stop using it when his tremor became to much to enable him control the keys. But was well worth having. He used to take it to hospital appointments so that he was able to answer questions for himself..perhaps you could investigate that too.

Beverley

[2georgepheobe in reply to Beverley52]

Hi that's interesting I haven't had anyone to visit me so Iam feeling completely lost hopefully as I get more information I will feel better thank you

[Beverley52 in reply to 2georgepheobe]

And do find out about the support nurse, and meetings in your area, they are so good for putting you in touch with others who suffer. We found them invaluable for help with problems such as urine infections, bowel problems. Often someone had a relatively simple solution to something, every bit of info helps. You've no need to feel alone in this.

Beverley

[Mick3849]

Hiya Mick here I was diagnosed last year. To get info pack from MSA Trusr just register online and they'll send it.

Mick

[2georgepheobe in reply to Mick3849]

Thanks for replying I have just done that so hopefully it won't be long coming and then I gets some more information

[2georgepheobe in reply to Mick3849]

I have registered on line mick not heard any thing yet ,can't get appointment at gp and I'm in agony general pain killers don't touch it

[Mick3849 in reply to 2georgepheobe]

Pauline hope you got sorted with pain I consider myself 'lucky' as I have no pain yet! If I remember the forms took about 10 days but they will arrive.

[2georgepheobe in reply to Mick3849]

Not yet mick I am going to try and see my GP tomorrow but that's not always easy, thanks for asking.

[Yanno]

Hello Pauline

I am sure the full pack will come very soon but Jax and I downloaded some documents from the Trust whilst we were waiting. there is a good general guide here msatrust.org.uk/wp-content/...

You mention that you find it difficult without crutches - have you thought of using something like a Rolator - you can look them up on line. Jax found this the best way of moving around the house for many months - sadly she now need my help as her balance isn't good enough to stand on her own even with a Rolator.

Also you say people who don't know you have difficulty understanding you - we found this frustrating as people would talk to me and ignore Jackie - the "does she take sugar" scenario. We've had a badge made with "I can't TALK...but I understand". This helps in those public situation - waiters, receptionists etc and helps them realise that Jax is 100% alert and understanding even if she can't talk well.

Take care, Ian

[2georgepheobe in reply to Yanno]

Hi Ian I have bought myself a rollator four wheel with a seat its great I have been out for a walk yesterday as it was a beautiful day not far but it was great. Thanks for making me get one .

[Yanno in reply to 2georgepheobe]

I am delighted, hopefully it will help you do loads more. It's so important to carry on doing as much as you can. There's many people in this community who will give you other advice should you need it in the future. Take care, Ian

[Mick3849]

Ian I have been using a City Roma Walker fairly sturdy and I was over 6' but I've now moved to an electric wheelchair. Havent had people not talking to me yet although phone calls are becoming more difficult and textphone is great if u can text lol. Hope u & Jax as well as can be expected.

Mick

[Yanno in reply to Mick3849]

Hello Mick, thanks for asking, we are great - presently down in Devon on edge of Dartmoor. The weather has been mixed but we enjoy Dartmoor whatever the weather!

We had a tough time before Christmas when Jax's medication was a bit messed up and she had a couple of UTIs one after the other. But advice from the Trust and a short 3 day stay in our local hospice has sorted that (touch wood) and so things are so much better at the moment. Ian

[Beverley52 in reply to Yanno]

Hi Ian. Don't know if you already know this but here goes. Billy suffered a lot from UTIs for quite some time, some quite serious, which put him in hospital. We were given a quite simple solution, and it worked so well that he was never at the doctors again for a UTI. We used a combination of Vitamin C and Potassium Citrate. Take Vitamin C daily for 2weeks, then take Potassium Citrate for 2 weeks. Keep alternating them. It changes the ph balance in your urine, acid/alkaline, so none of the bugs that normally cause UTIs can multiply enough to give a problem. Potassium Citrate is the main ingredient in medication for cistitis. But that can work out quite expensive, so I went online and found it in capsule form at an acceptable price. Hope this helps.

Beverley

[Yanno in reply to Beverley52]

Thanks Beverley

We hadn't heard of this before and so we will try it without doubt. Many thanks for the suggestion.

How are you coping?

Take care, Ian