Multiple System Atrophy Trust
315 members168 posts

Lost my Mum

Hi there, sadly I lost my Mum to MSA on 4 January 2018. After being misdiagnosed with Parkinsons about 5 - 6 years ago, they finally diagnosed her with MSA about 2 years ago. Throughout this awful illness she remained positive, brave and still had her humour. I can't believe she has gone, miss her so much. This is such a horrible disease and my heart goes out to anyone suffering with MSA and to their families.

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I am so sorry that you have lost your Mum. My husband was diagnosed with PSP with signs of MSA. A month before he died they said he had MSA. Sadly I will never know the truth. I wanted to donate his brain for research but the consultant in the hospital didn't follow it up. It appears that is the only way a true diagnosis can be made.

You are right that it's a terrible condition. We have to get some funding for research into all these neurodegenerative conditions.

Very sorry about what your Mum went through but I am sure you are glad she is no longer suffering. Nobody wants their loved one to suffer? We wouldn't want it for ourselves?

People need to get these conditions onto the death certificate too as others don't know what you are talking about? So we need more awareness of all these conditions.

Hope you are coping alright? Once more I am so sorry about your Mum. She sounded like a special lady.

Marie x

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Thanks for sharing. So sorry for you loss. But all the ones with misdiagnosis has really helped me. Thank you all from the bottom of my heart

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Terri

No need for thanks. We are/were all in the same boat? You have friends here and they are great people. I am so glad I found them all when I did.

Marie x

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Thanks Marie, early days but I am doing OK, I am lucky that I have a lot of support. The cause of death on the death certificate was Aspiration Pneumonia and MSA. Yes I am relieved that she is no longer suffering and feeling scared of what the future would bring. She always tried to put on a brave face for me and the family though. Thank you for your kind words.

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You have succeeded where many have failed, by getting the cause of the aspiration on your Mum's death certificate! My Husband's has the same wording. Some hospitals refuse to put the real cause on the death certificate. So we all need to ensure they are aware of what it is and what it does?

I didn't meet a single person in the hospital who knew what I was talking about! Even now I have had people say to me:" oh he had MRSA did he". This is after I have told them, so I now use the full name. At least that makes them stop and ask what it is.

Take care of yourself. I am glad you have a lot of support.

Marie x

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<3

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So sorry to hear your news. Thought are with you and your family xx

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Hello, and I'm so sorry that you are joining this community at this time. It sounds as if your mum tackled this dreadful condition in the best way possible - being positive and making the best of a poor situation. You must miss her so much and yet I am sure there will be so many, many moments from the last few years that you treasure deeply. Treasure the happy times, the fun times, the times laughter surrounded you and I am certain that's how she would want you to remember her.

We're all going on a journey and for each of us the journey is slightly different but sadly the destination is the same. Please keep in touch with the community here and I am sure that when you feel much stronger, as surely you will, your comments, support and advice will be gratefully received.

Take care, Ian

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Thank you for your kind words Ian, I will be any help that I can be to others about this condition. I really hope one day there be some treatment available and a cure.

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Hi, I am so sorry about the loss of your mum. She sounded a very brave and amazing lady. She would have found great comfort in your love and care of her. Sending my love to you and all those effected by this condition. Helen x

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You are so right. Always use the full name except for places like this. There are so many diseases with initials and most of them seem to have M. People always think it is one they know about like MS or MRSA or MN and as you say we can all help by getting this lousy disease better known.

The more information about the cause of death the better. I got MSA onto the death cetificate but it backfired a bit. Victor died as the result of a fall and I had forgotten that he had a small accidental death insurance and they said if the cause of death had been fall they could have paid out. Their advice was put both causes - probably still wouldn't have paid.

FredaE

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Dear brammn,

I'm so sorry about the loss of your mom. My mom also was misdiagnosed with Parkinson's for 2 years with no response to the various medications. Her diagnosis was sense change to MSA she has begun the fourth year since initial symptoms in July. From everything I read it seems like she is progressing with so many symptoms with the hypo and hyper blood pressure and a host of down conditions. I wanted to ask for anyone on this thread if you or your loved one experiences what she refers to as weakness and shaking of the arms and legs with her legs not really able to hold her not exactly like low blood sugar but sort of? She had minimal invasive of back surgery yesterday and hopes that she will be able to proceed with her first knee replacement. She's also having tremendous hip pain which the doctor feels maybe coming from this back just not sure. It is truly an awful disease. And yes, examination of the brain post-mortem is the only definite diagnosis. Since it is such a rare disease there is so little research and funds available. There is a rare Network organization that does advocate for such things. It's all about getting the word out. Again I'm very sorry for your loss.

Janet

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Hi Janet.

Very much like my Mum. She suffered with her back over the years but not so much latterly.

She was adamant to stay as mobile as possible even if it meant only a few steps. Her legs would become weak and prone to letting her go but we were always behind her with the chair to prevent any falls.

She used an iPad but struggled with that eventually because of the shaking. She took sinamet each day but nothing else made any difference.

When we had to start hoisting after needing bed rest from a pressure sore she initially caused us concern with very severe foams and violent shaking. Baclofan( I think it was) stopped that happening. With hindsight not sure if that would help with the shaking issues. Maybe worth mentioning with gp.

Good luck xx

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Alisonleicssupport,

Thank you for your help for response. It sounds as if your mom remained at home? A question I have is at what point did she I'm assuming need to move from a normal bed to a hospital bed and hoising to go along with that? They have had to remove the mattress and box springs from the bed onto the floor for easier in and out. Today she is 4 days post back surgery for some severe spinal stenosis. It was a minimally-invasive procedure so much better than her 2015 full back surgery. She is in a back brace from her breast sore tailbone for 4 weeks to prevent twisting and turning. From here she is prepared to start on her two knee Replacements there is talk of hips also I'm just not comfortable knowing that she failed the initial PT recovery practice which is so important to regain walking after knee surgery. I don't want her to end up in a wheelchair sooner the necessary but I know she's also in excruciating pain. Such a quandary. Thank you.

Janet

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Mum wanted to stay at home as much as we wanted her to be. We applied for nhcc and were told care part only. However during the investigation of my issues post death I was told she should have had nursing. From what I remember we had the profile bed quite early on. The mattress is quite important to help prevent pressure sores from restricted mobility. The beds are good as you can raise or lower either end independently as well as raising or lowering the whole thing to make getting in and out easier as well as treatment when needed.

Initially we had a mobile hoist but space was tight so our OT who was brilliant requested ceiling hoists. We had started having more days where it was difficult to manoeuvre Mum into the wheelchair. A rotunda was helpful up to this stage. The hoists were fitted just in time for when we needed them. They were a godsend and I managed to still get Mum, albeit with a struggle, to wetroom for a shower until the last week. I refused to in the end as she was in too much pain.

Maybe lots of physio as an alternative to reduced walking may be needed after knee ops.

Mum was prescribed a hysterectomy but we refused it. Not practical.

None of it was easy, though I wouldn’t do any other. I would change certain things though with hindsight.

What area are you Janet.

Happy to share my experience with you xx

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Thank you for your kindness Alisonleicssupport.

We live in the states and Virginia I live an hour south of mom but get up to see frequently and talk to her daily. I assume the trust that I keep hearing referred to as something there that is in the UK? Is that separate than this site? In hindsight isn't hindsight 20/20 wonderful? What types of things might you have done differently?

Janet

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Ah ok. Some of what I have said will not apply in the same way with you over there. However the fact sheets on the Trust site may have some useful info.

The Trust was formed by Sarah and her family 20 yrs ago when she was battling the disease.

It’s hard to be specific as to what I would do differently as we know now how let down we were personally with our health system and it has been acknowledged. I think they have learnt from it. Expect the unexpected and you won’t go far wrong. Make the most of every day as things can change overnight. Xx

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Thanks Janet for your message, yes my Mum suffered with tremors and shaking and she also lost the ability to walk as she didn't have the muscles or strength in her legs anymore. It is a common symptom in MSA unfortunately. She also was prone to passing out due to low blood pressure but she was OK as long as we kept her wheelchair reclined. I wish you all the best with your Mum, enjoy all the time you can with her, it is so precious.

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Brannon

Thank you for sharing and again so sorry for your loss. So I suppose the onset of this shakiness in the limb is yet another new symptom of the MSA. This is such a cruel disease. The low blood pressure has plagued her from the beginning.

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I'm so sorry for your loss. I lost my father in November. It's still raw and and still gets me everyday. They say time is a healer and it does gradually get better each day. My father also passed away from Aspiration Pneumonia with msa. You do think you it only happens to a few but you don't realise how many people do suffer with msa.

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Thank you, really do hope it gets better with time as it hurts so much at the moment and sometimes I don't think it is real and has really happened. I can't imagine my Mum not being around anymore, just gone, it is so final. The MSA nurse told me that Aspiration Pneumonia is one of the most common causes of death for MSA sufferers and said there was nothing we could have done more. That is some comfort as I kept thinking maybe we should have got her to hospital quicker, etc.

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Very sorry to hear of your recent loss. I hope you are surrounded with support at this time.

My 37 year old son was diagnosed with early onset Parkinson's 8 months ago but is now unable to care for himself and his personal care - what are the significant symptoms for MSA as we suspect that this is the problem. I understand that it is more progressive that Parkinson's.

It is heartbreaking to watch a loved one suffer in this way and to feel so powerless and worse to be diagnosed with something and have no education about what that means to the quality of one's life or relationships, ability to work etc. Any info or insight would be greatly appreciated.

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Don’t delay in going back for more answers if you have doubts.

Parkinson’s meds are good for Parkinson’s. If they aren’t working than questions need answering. Get physio going if you haven’t already. Keeping muscles going is beneficial for as long as possible. Along with speech therapy. Voice banking possibly.

Hope you get some answers soon xx

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As an afterthought get in touch with MSA Trust nurses. They will help with valuable advice x

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How do I do this, get in touch with them I mean?

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Thank you for your words and so sorry to hear about your son. There is a website containing lots of information on MSA and also contact numbers for MSA nurses who were invaluable for me - www.msa trust.org.uk The main symptoms that Mum experienced with MSA were shaking, tremors, lose of walking, restricted movement (physiotherapy does help), low blood pressure, passing out if sat upright, chest and bladder infections, bladder issues (she had a cafeter fitted), breathing difficulties and swallowing problems with food and water, she eventually had a PEG feed fitted. Everyone's journey with MSA is different though and some progress more rapidly with symptoms and others keep it at bay for longer. Looking back I think my Mum starting getting her first symptoms about 7 years ago. I hope this helps a little and please go back to your doctors if you feel the diagnosis isn't right, we had no idea what MSA even was until 2 years ago when a neurologist finally diagnosed her. Wishing you all the best. xxx

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Seeing neurologist tomorrow afternoon. Thanks for listing your Mom's symptoms (Matt has many of them) hate being held in limbo by lack of education/information/investigation

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I really hope you get the answers you need and have a look at the MSA Trust website as I found it so useful to help understand the condition further and MSA nurse was lovely, they also offer support groups.

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I am going to share some resource links here that I have found my research more of these are US based. I find it very helpful to see how things are handled between the various countries.

drive.google.com/file/d/0B8...

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PNIAuthor60

Good Sunday morning to you from Virginia. I am so so sorry to hear about your 37 year old son. I certainly hope it is not MSA especially because of his age. I am new here also supporting my 74 year old mother who went through the Parkinson's to MSA final diagnosis over about 2 years time she is now and entering the fourth year of symptoms. You will find the people here very welcoming sharing their experience and offering great information.

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I'm so sorry for your loss. What you say is so true, MSA is under reported and more needs to be done to raise the profile of the disease and how it's tracked and reported. Thank you for sharing. My prayers go with you.

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