MSA

[Rankin63]

I went to a PT group yesterday specifically for people with Parkinsons and found the exercises quite useful but was upset when I was asked to provide a long term goal. It takes me all my time to get through each day let alone set goals. MSA is a progressive illness so I don't expect to get any better. It seemed to be a lack of knowledge of MSA. Has anyone else come across this?

[Diane831]

Hi. I guess your aims/goals are to maintain whatever abilities that you have now as long as possible. I don't know how you are but maintaining best possible balance and mobility, strength and movement in arms and legs are all great goals, and will still be a long term goal even as your situation progresses and all will be helped by being part of that group. You aren't going expecting to be cured but maintenance and eating other people are great benefits that are likely to come from attending the group. You know that you are different from the Parkinsons patients and you physio should too but the exercises will still help. If you don't think people understand the difference then give them the information about the MSA Trust and they can ask for a professional pack to be sent to them.

Enjoy your exercises! Diane

[Diane831 in reply to Diane831]

Guess that should have said "meeting other people" Eating people is not generally a good thing to do!!!

[Marie_14 in reply to Diane831]

It made me smile though!! 😊

Marie

[Marie_14]

I am so sorry you were upset because of the question you were asked. You probably didn't expect it so it was a shock, and also MSA is different to Parkinson's? The reply from Diane is very good and actually what you do hope for? You want to maintain any strength, mobility etc., for as long as possible? I am sure doing exercise can only help. Especially with building up your muscles? I wish my husband had been given that opportunity but he wasn't.

As Diane has said get them a copy of the pack explaining what MSA is? Everyone knows what Parkinson's is but any other neurological condition is met with a "what is that"?

My husband had MSA and I am still telling people what it is!! One person actually said: "oh he had MRSA?! So we need to explain what it is? Very hard at times I know.

Wish I could give you a hug though as you must have felt so alone? Well you are not alone. So remember that. Post or PM whenever you want to. Only by getting the support and help you need can you face this condition.

Marie

[Rankin63]

Thanks Marie for your reply and it certainly makes me feel better to know that I am not alone and others think like me .You're right. All I want to do is maintain my strength for as long as possible .Next time I go I will give my PT a leaflet on MSA and perhaps this will help. I'm sorry to hear about your husband and that he wasn't given the opportunity to join a group. I certainly enjoy the company as I don't go out much. Thanks again for your reply. Mina

[Rankin63]

Diane Thanks for your reply and I know what I'm going to say about my goals next time I have a meeting. Just as you said, I want to maintain my strength as long as possible, that's my goal. The PT wanted me to say something I didn't already do which led me to believe she didn't understand MSA. I intend giving her an MSA leaflet to see if that helps. Thanks againfor your interest. Rankin63.

[Diane831 in reply to Rankin63]

Hi. I came across your posts on the Ataxia site too and your story is so similar to my husband, Geoff's. We too were fortunate to get an MRI scan because Geoff has a past neck problem which affected the physical examination the neurologist could do initially, and it showed the cerebellar changes. So initial Ataxia diagnosis but with some quite severe bladder issues it quickly led to a change to probable MSA. Geoff enjoyed some hydrotherapy that a local Neuro charity was running and he didn't have any low blood pressure issues so it suited him quite well. He chose to stop going when he would have had to be hoisted into the water! Our current physio has been amazing keeping us on her list and fairly regular appointments as she has been standing Geoff in a piece of equipment which is contributing greatly to keeping his ability to stand for transfers at home. She has that for the goal of the treatment and her managers have been great at allowing us to continue. Keep active and do what you enjoy doing!

Diane and Geoff

[Hidden]

I agree with you all, it can be upsetting when you find it difficult to get through the day then the health professionals get you to set "goals" to get better. My wife is the one with MSA and this has upset her also. Unfortunately these people are usually paid in a way that requires proof that they are improving peoples lives by producing "before and after" paper work to prove that what they are doing is improving your lives.

I find it best to print off the "first signs of MSA" imformation, fron the MSA trust, this gives the best imfo and fits on a single A4 sheet of paper. This usually makes the healthprofessionals be a bit more considerate towards my wife.

Kevin

[Marie_14 in reply to Hidden]

Kevin

You know I had forgotten my husband was asked the same question by a supervisor of a Care Company we had! He didn't know what to say and to be honest I was taken aback too! I had totally forgotten it until I read your post. You are right they are paid by results as it were. Totally stupid but then a lot of things are? You have to fight for everything it seems?

Marie

[Rankin63 in reply to Hidden]

Thanks for your advice about the MSA leaflet. That was what I was thinking of doing. People can be so insensitive when they don't really know what they're talking about.

Regards to your wife. Mina X

[FredaE]

I wrote a reply to you yesteday but it seems to have vanished.we had the same problem some years ago with our local Parkinsons group.

It is not helpful to call MSA a parkinson's plus. They are two very different diseases. Parkinsons is a failure of onepart of the mid brain. It just so happens that many MSA patients include in their multiple systems that same part and so are oten initially diagnosed with Parkinson's (Pd)

Parkinsons is a slow disease with plenty of good times to come and because search for a cure can be concentrated in a specific area there are more treatments, some like deep brain stimulation or stem cell transplants looking very promising, it is the policy of Pd UK to be relentlessly upbeat. You do not suffer from Parkinsons you are a person living with it.. This like you we found very hard to take and felt very isolated. We were much better with the MSAT support groups which are also upbeat but in a more appropriate way

Thhe advice from Diane and Marie is just right. people don't want to be insensitive and need all the help we an give them to understand.

And Oh those initials!!!!!. You can get so fed up with explanations that don't register with people. We found it better to use the full name which is more distinctive and conveys something of what it is

FredaE

[Rankin63 in reply to FredaE]

Freda, Thanks for your thoughtful reply. I liked your idea of using the full name. This will at least make people think hopefully. I have a group meeting with fellow sufferers next week so I hope I will get more information and understanding there. Thanks again for your reply. Mina X

[Diane831 in reply to Rankin63]

We have also resorted to always using the full name rather than the initials. keeps things clearer even if it is a mouthful, but it usually means you get to explain what it is which is a great awareness tool and opens up more conversation.

[Rankin63 in reply to Diane831]

Thanks for your thoughtful reply. You're right!

The more we can talk about MSA the better .

We need to make our illness known. I have to say that I had never heard of MSA until I got it.

Mina x

[SamanthaMSAT Moderator Staff]

Hi Rankin63. I am sorry you experienced this.

Parkinson's groups can be very helpful as there are many more than there are MSA groups. However, as MSA is a rare condition (for every 45 people living with PD, there will be one person living with MSA), many people including professionals haven't come across MSA. What the PT wouldn't realise is you can join in the exercises, but as fatigue is an issue, you may not be able to do them all at one time. 20 mins is often enough-I usually suggest people try to do regular exercises at home, (daily if possible, to maintain muscle strength) but break them down to shorter sessions, more often.

As the other helpful replies have said, take our literature with you wherever you go, we are trying hard to raise awareness!

Kind regards,

Samantha MSAT Nurse Specialist.

[Rankin63 in reply to SamanthaMSAT]

Thanks for your reply, that is exactly how I feel in that I can do the exercises but feel exhausted afterwards. I will take the MSA leaflet with me next time I go to the session. I suppose I just expected the professional to know but I have to get used to having such an unusual illness.

Thanks again, Mina.

[Yanno]

Hello Mina. I think the responses of everyone have been spot on. I particularly would agree with using the full name; we also follow up by immediately saying to health professionals "I expect you havn't heard of it because most health professionals haven't. Even one of our neurologists had only come across three instances in his career". This tends to make them stop, think.... and recognise that this isn't Pd, MS or MRSA which they all know well!

It's not all bad news however. We have an excellent hospice locally in Worcestershire and they hold a monthly clinic for people who have Parkinsonian conditions. They are very alert to the differences between Pd and MSA and have been phenomenally supportive. I mention this because they introduced Jax to seated Tai Chi which she loves. Jax joined in for two series of ten sessions at the hospice and now we have found a local Tai Che instructor who has included Jax into his class. Jax finds that Tai Chi not too tiring, as Samantha mentions above, but is good exercise that she is able to do in her wheelchair. You may find you have a Tai Chi group local to you.

Take care, Ian

[Rankin63]

Thanks for your kind words, Ian.

I have a group meeting of fellow MSA people next week so will let you know how I get on. I have not been to one before.

My circumstances sound similar to yours in that my husband and I were looking forward to a retirement different to the one that we 've been landed with. We have adapted and manage each day as it comes doing what I am able to do depending on how tired I am.

We just have to live as best we can. I hope your wife is as well as she can be at the moment.

Kind regards Mina

[Yanno in reply to Rankin63]

Hello Mina. We are enjoying life, we really are. Most days there are things we could and should moan about and many days when we have a little cry together. But...there is also however so much to enjoy in life. We are together all day and every day, we still travel and do loads together. I'm learning to cook whilst Jax is learning to put up with my cooking! As you say, not quite the retirement we had our eyes on but we cope.

I hope your MSA group is okay next week; we have one in Worcester on Thursday. Take care, Ian (&Jax)

[FredaE]

I shall be running the next Hertfordshire MSA Support group at the Hospice of St Francis in Berkhamsted later this month on Monday 26th at 11 - 1. We know that this is not the best time for eeryone but we do a light luchtime snack rather than cake although there is some of that too. The hospice physio will do a short (optional) session of chair exercises and Samantha plans to be there. Everyone welcome

FredaE

[Rankin63]

Thanks for your message about your run . Unfortunately I live in Aberdeen, Scotland and won't be able to be there but I wish you well in your efforts. Mina X