My Dad and MSA

[RunDMc73]

Hi I've joined this group late.... my dear Dad passed away with what we now believe to be MSA, nearly 4 weeks ago. He was diagnosed with Atypical Parkinson's 4 years ago. He deteriorated rapidly in the last few months. My reasons for joining now, I think are to understand more about this disease, for closure for me and for my family. My sympathies to all those living with MSA

[Beverley52]

Hi. I joined late too. My partner died just before Christmas. He was diagnosed with MSA 10 years ago. You probably know now that it's often misdiagnosed,so I suppose we were lucky to have a correct diagnosis from the start. The last 3 years have been tough. It's a very cruel disease.my sympathies to you and your family.x

[RunDMc73 in reply to Beverley52]

I'm so sorry for your loss. Yes I wonder whether a correct diagnosis would've changed anything and whether we would've done anything differently? I don't know if we would. His last 8 weeks I would say were the only bit that was awful. Prior to this my dad was active and tried to be positive and had a reasonably good quality of life. (We took a narrow boat trip at the beginning of September for his 70th) Back pain was one of his worst symptoms that distressed him certainly over this last year. He always said he could live with all the other Parkinson's symptoms, the poor speech, the shuffling, the stiffness and the slowness, but the back pain is what debilitated him at times. In the end the last 8 weeks saw him initially admitted with debilitating back pain, he then developed swallowing issues that became worse, so he was nil by mouth, a constant rattly cough, and terrible unstoppable diarrhoea. He was severely underweight and dehydrated by the time he passed, he passed peacefully on the 21st December and I will always be thankful that he didn't suffer for longer.

[janehey in reply to Beverley52]

TEN years? Chris had autonomic symptoms from 2009, but was only dx'd in June 2014. He died at the end of May 2016. It was pretty intense. (((Hugs)))

[Yanno]

Hello RunDMc, what a wonderful picture.

It must have been very frightening for you watching your Dad suffer and not knowing what was causing the suffering to begin with. we understand many follow other paths before they get the final diagnosis - with Jax they thought she'd had a stroke. Receiving a diagnosis still doesn't answer all the questions as it appears everyone follows a different journey and many outside factors impact on ones daily living. Nevertheless we have found it useful to have a label for the condition and the MSA Trust have been invaluable in their support. No doubt you have been in contact with them as they have some very useful booklets explaining what is known of the condition.

I hope you get the understanding you need and some closure for you and your family. Ian

[RunDMc73 in reply to Yanno]

Thank you for your kind words. Frightening, yes. Terribly distressing to watch someone you love just get worse and worse. And when you can see that the neurologist is also at a loss, this is very disheartening as I think you look to the professionals to know what to do. My dad had little response to levodopa meds. Around 10 days before he died the neurologist started talking about MSA. But yes, in the aftermath I have questioned why I would want to now seek support or information but I think it's closure and to raise more awareness. I have a meeting with my dads neurologist in a few weeks and I want to talk to him more about MSA and understand why it wasn't evident with my Dad prior to this time... I know we will never know for sure but I have joined support groups through Facebook and for years I have been part of Parkinson's forums, but with the MSA groups I can just see that the symptoms and deterioration fit so closely with my dads own progression with this disease. I feel so sad that my poor Dad died in the very hospital that he had worked in for so much of his career.

[Yanno in reply to RunDMc73]

Hello again. You know even if MSA is "diagnosed" the neurologists are not able to say for certain but it is their best judgement. If you are interested in learning more about MSA there are a number of leaflets that may be downloaded from the MSA Trust - msatrust.org.uk/support-for... Many professionals come across only a handful of MSA cases in their careers and so the specialist knowledge of the MSA Trust has been a great support for us.

You are right, one of the things you can do is help spread the word about MSA in order that sometime a cure may be found for this terrible condition.

Obviously I know nothing about your Dad, but I am sure he would know that the hospital where he worked were giving him all the care that they possibly could. He would also have know how much you loved and cared for him.

[Beverley52 in reply to Yanno]

It's true Yano. That diagnosis is only their best judgement. When I read up on the symptoms, I can only say that I agreed totally with our neurologist. Everything fitted. So much research into this disease, and " related" diseases is needed. With that in mind, my partner donated his brain to MSA research. He decided to do it 18 months ago, after a particularly bad spell in hospital. I carried out his last wish. Hopefully it will, in time, help to find a treatment, if not, cure, for MSA. I'm very proud of him, for making such a momentous decision.

Apparently I will get a full report, in a few months time, on exactly what they found. And a definate diagnosis. I will then make an appointment to see his neurologist, who will get the same report, for him to explain the more intricate details to me.

In our experience, other than his neurologist, nobody had come across MSA before. One nurse was overheard on the phone to say " he has a cross between MS and Parkinsons " . It was often hard to get people to understand the complexity of it.

[janehey in reply to Beverley52]

Chris had made the decision to donate his brain to the NNH brain bank at Queen's Square. Paperwork in place - all done.

Always contrary, he then died suddenly at home on a Bank Holiday Saturday. Tissue donation not possible, which is a regret but out of our control.

[Beverley52 in reply to janehey]

That's sad that you weren't able to donate. Billy died on 22nd December, but we were able to go ahead with his wishes, and he was back in the funeral home within24 hours of his death. I somehow find it a bit of a comfort that he may be helping someone one day. Even tho some of his family were unsure. It's just the thought of what they do I suppose that some people find scary..

[Beverley52]

Hi RunDMc,

I'm sure that having a correct diagnosis would have made little or no difference to either medication , or the course of this awful disease.

We were lucky enough to have a good diagnosis from the start. Possible only because our neurologist had come across MSA before.

Billy was good for the first 5 years, in that he was reasonable mobile and had no major problems, other than bad bladder control. After 5 years he became less able, and needed more help in everyday tasks such as showering. He drove up until about 4 or so years ago, when he realised he was no longer safe.

His mobility became a problem about 4 years ago, when he started to use a mobility scooter, and around that time, his speech became very indistinct. 18 month ago he had a very bad stryder. And we thought we'd lost him, but he bounced back. From that point though he became gradually frailer. He was in hospital 3 times with pneumonia. He passed away peacefully on 22nd of December, in hospital, again with pneumonia.

Out neurologist once said, that the best that could happen for him, was that he had a heart attack, or that pneumonia took him. So I guess that was a blessing, even tho it doesn't quite feel like that at the moment.

The MSA trust have been great, with information, and advice, especially Katie Rigg. We met her a few times at support meetings.

If My experience can be off your help to anyone, that's ok with me, tho I think all are different.. I wish all of you the very best with your journeys,just make memories while you can.

[RunDMc73 in reply to Beverley52]

Hi again Beverly and Yanno

I feel so much comfort from reading about your experiences. I'm not sure why, because you have both suffered so much as carers of someone with this awful disease but maybe it's just that I don't feel so alone in my grief. My mum and I have an appointment to see my dads neurologist in a few weeks. He was also the one that started to talk about MSA being a possibility towards the end. Beverley what a brave thing your husband did allowing his brain to be used for research, what an amazing man. This is a hard thing for any family to go through but to decide that you want to go on to help others is truly inspiring. Over the last year I have raised over £2000 for Parkinson's UK however today I have created a new donation page in memory of my Dad for the MSA trust. Any fundraising I do from now on will be for them. They probably get a lot less publicity than Parkinson's UK and therefore less funds for research. It's too late for my Dad but if I can help raise funds for research to either understand causes or find a cure then this is what I will do. Thank you for the links to the literature about MSA I still need to look through these thoroughly. I have done some reading but have mainly relied upon carers and sufferers experiences to understand more and also to feel more certain that this is what my dad had.

[janehey]

Sorry, I don't know your name, but I send you condolences anyway. Christmas must have been so difficult for you and your family.

Everyone experiences MSA uniquely, so this site is probably more helpful for people still living with the disease. I hope it can develop to be supportive to those newly diagnosed, which is when we are all most scared.

[Beverley52 in reply to janehey]

Yes, not knowing what's around the corner is scary, and I don't think anyone really is prepared for what this disease can bring, but there are people who know how you feel, and if that's a help, then this site is doing its job.