Hi - I'm new to the group

[HOL69]

Hi there, my Sister was diagnosed with MSA-C in June 2018.

This awful condition has progressed but she has managed to keep her spirits up and take everyday as it comes. She is single who lives on her own with one of her son's sharing his time between her and her ex-husband. Her eldest son doesn't seem to care and barely sees her at all. I don't know why but some of her closest friends do not keep in contact these days which I find so sad. She is still the same fun-loving person and is really social but she doesn't go anywhere without me. I have tried to encourage her to join support groups but she says it's not for her at the moment.

The diagnosis was quite quick in comparison to some people that I have read about but in our area no-one has been familiar with this illness and the support has been limited. However she has now been referred to a different hospital and I do feel that there is someone who understands and is now taking more care and interest in my Sister.

Any advice in trying to ensure my Sister has the right care would be welcomed along with any tips to help her (and myself) in getting her out and about. I feel like we have kept our heads above water so far but with her mobility getting worse I feel like I'm getting out of my depth and not sure where to go for guidance.

Thank you

[Hellebelle]

Good morning HOL69, Welcome to the group, I hope that you find it helpful.

First of all, it's good news that your sister is getting some help from the hospital that she has been referred to. It makes such a big difference if a health professional has knowledge of the condition and is taking a real interest.

You will find that the condition has many effects on the different systems in the body and advice and support on how to manage this , in my experience, is crucial. We had the support and professional expertise of a local hospice which proved invaluable. The staff were so caring and compassionate and seemed to have the time to really connect with us as a family. They had the expertise to manage this very complex condition and provided physio, occupational therapy, speech therapy and consultant support. I don't know whether you have a hospice in your area, but it might be worth contacting them. Otherwise, all hospitals should have a palliative care team who would have more experience of complex conditions.

If you are concerned about your sister's mobility, it would be worth contacting your GP or social services dept to ask for am Occupational Therapy assessment. The OT will be able to prescribe equipment that could help with mobility and transfers on and off the toilet or bed for example as well as adaptations to the home to make it easier/safer to get around.

I was also wondering about finances and whether your sister might be eligible for any benefits? Again, it would be worth asking for an assessment from social services to look at her care needs. Unfortunately, there is usually a wait for these services so the sooner you can get in touch with them the better.

I am sorry to hear about some of your sister's friends not being in touch, but we also found this to be the case. Just at the time a person with MSA needs the support of their friends, it is often not forthcoming. There are many reasons why this happens but it could be that they find it too distressing to watch their friend suffer and/or it reminds them of their own mortality? We were just grateful for those people who remained supportive.

Last, but not least, the MSA trust have a wealth of information about the condition on their website as well as specialist MSA nurses whom are available to give telephone advice and support. The nurses often attend support group meetings and although your sister is not interested in support groups at the moment, she might be in the future.

We found that dad really responded to trying to keep things as normal as possible and enabling him to participate in everyday activities such as cooking or washing up. We did eventually have to get an adapted vehicle for dad to carry his wheelchair so that we could get him out and about. He still retained his sense of humour and enjoyed a good laugh. He didn't want to focus solely on his illness.

Wishing you and your sister lots of love and strength

Helen 💕

[Paul_and_Sue_Wood]

Good morning HOL69

We are both sorry and pleased you are on the forum. It is a great place to learn that you are not alone and you can rant, moan, and ask as many questions no matter how trivial as you would like.

We are all going on the same journey but everyone's route is different and that is something you will learn quite quickly.

We have all found that friends and relatives deal with the condition differently as some help, some cope, and some ignore it.

The one thing I always stress is to get as much help as you can from professionals and pay if you need to as what else are you keeping money or assets for? Look at care companies and use the local council for financial support.

The MSA Trust is a great resource for professional and medical advice.

Getting out and about get a wheelchair and if your sister is struggling getting in and out of a car look at Motability cars that are funded if you have full PIP or DLA and they can be adapted to make it easier, we have a car with a crane fitted into it for Sue.

Any other questions fire away on the group or you can do direct.

Paul & Sue

🤓