I lost my husband almost 4 years ago on 23/12/17. He had a sudden heart attack and died right there on the bedroom floor. It took me sometime to rebuild my life.
The. I met Jon last July and fell in love. We planned a life and he’s currently moving counties to be with me.
December 2020 diagnosed with Parkinson’s. July 2021 diagnosed with msa.
Moving to me next month.
The deterioration is massive. I’m really panicking. How long do we have? What happens? How do I prepare?
Reading the recent losses it breaks my heart. He’s just 50. All our plans no longer. How do you all cope? How long do we have?
Nonsense really but I needed to say it.
To all you sufferers, carers and partners - you are all remarkable people xxx
Written by
Kaye31
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Heart breaking story - I don’t have any words that will make it better but hope that venting will help. I read so many insightful, energising, enlightening and hopeful posts here along with the down right cruel and crushing stories. It’s a roller coaster but it helps to know others are going through the same.
Wish some one could answer the questions we all have on time and how to cope.
Stay strong for him and use the forum to vent as much as you need to.
life can be so cruel There is no cure yet but there is lot of help but you need to learn enough to know what to ask for. TheMSATrust in london shoul be your first port of call if you have not already found them
Hi Kaye I'm so sorry to hear this, do you have any support in place, a neuro specialist nurse for perhaps? They can help to co-ordinate for you. This is the crucial thing for both of you, I know people are scared about hospices but they really can help you both, practically and emotionally. It is sadly a roller-coaster and so unpredictable. I cope trying to have a plan of people to call whatever happens. One thing for us has been a specialist consultant, medication can be very challenging and because of how rare MSA, a lot of doctors get it wrong. Please come back to us if you need anything, or just to vent, it does help.
Hello KayeWhat the others have said is so true. You never know what to expect tomorrow with MSA, let alone next week.
However having said that, we have found it best to make plans for, but not to worry about, the future. Don’t think about what was and what could have been, just what you and Jon now have.
My Jackie was diagnosed in 2015 and we’ve had some glorious years since then. Yes, we’ve had sad times; yes, we’ve had difficult times; yes, this isn’t the retirement we planned however it’s not all been bad. The opposite is true, we’ve had some wonderful times. We constantly say how lucky we’ve been and for that we are forever grateful.
Enjoy your time with Jon, make every moment count; and keep positive!
Do join a local MSA Support group if you can, you will meet others there and gain some valuable tips.
Hi Kaye31, I agree with all of the replies you have had from the wonderful people on here. I am so sorry that life has dealt you somd terrible blows. It helps to have a vent and I am sure the people on this site will have done the same at some point.
We always had the mantra that dad was "living with MSA" with the emphasis on the living! We tried to make the time we had left with him as joyful as possible. Despite his mobility problems towards the end of his life, we managed to make sure he had access to nature which he loved. Most of all, he loved us being there and hearing our laughter. It was, in the end, the little things that mattered to him.
I agree with building a support network around you, however you can do that. If you have a hospice nearby, it would be worth contacting them. They aren't just there for the last few days of someone's life, but provide invaluable support for complex conditions, sometimes over years as in my dad's case. There aren't any standards in these complex cases unfortunately, as each Health Trust seems to offer differing support, but it would be worth asking what is available in your area and getting it started. As Freda had said, the MSA Trust offers advice and information and would be a good place to start.
I wish you well. Please let us know I how you are getting on.
Thank you so much for taking the time to reply xxx it’s so hard in just 4 days since I last saw him his deterioration is drastic. It’s so so sad and he’s in so much pain 😢
I am so sorry to hear that. Is he getting help with his pain? There are specialists in pain management in most areas. Although dad was in pain, he was able to function as he had medication to keep the pain in check. It is so hard watching someone suffer in this way. I hope you can get help with this.
I feel for you, but none of us know what's around the corner. You've already had to pick yourself after losing your husband. You can do it and you will. My hardest struggle is trying to get the doctors to realise that there is something wrong with me for nearly 4 years. I have recently signed up for research through a project which is run by Exeter university. They need volunteers aged 70 or less. The details are under the MSA trust org website under research and synapses loss. Eduardo de Natale is the lead doctor. It may not help me but I'm hopeful that it will help others. Live each day as it comes and find something pleasurable every day, however small.
Wishing you all the best, do ask if you need to know anything at all.
Hi, there's some sound advice given already. My only addition is learn to live in the now. Make plans and do what you can. Medically, see you neurologist, parkinson and GP pain management will filter down to the GP who'll prescribe. He should be more comfortable. The occupational therapy team will help with any advice for adaptations to help around the house. Just vent here will give you a safe place. I'm scared all the time. But i read here lots of advice and just knowing I'm not alone. Sharon xx
Hello, and welcome to the club no one wants to join- as some of the others here say 🧡. on a different note if he's having an unusually sharp decline this week, it may be that he has an infection brewing. The MSA nurses can advise. Kx
Hi Kaye, obviously everyone is different and if you are like us you’ll have no luck getting a prognosis other than something vague like ‘advanced and aggressive’. You’ll read optimistic guidelines of 6-10 years. Martin was diagnosed in April and died end of August and I wished I’d known it was going to be that quick and I hope beyond hope you two fare better. Just treat every day as special. Xx
6 weeks now and I keep expecting him to show up. Yes no matter how prepared you think you are it’s still a shock. No not really, he had some minor balance issues this time last year. Then he had a hernia repair operation in November and then things sped up. He went into hospital again in February for tests to see why he was becoming urinary incontinent, was in hospital for 3 weeks which didn’t help things further. Diagnosed in April, told to stop walking early July due to the number of falls, averaging 12-15 a month. Once he stopped walking things sped up even faster, suspected pressure sore on coccyx which I think was way more, probably from a previous fall. Consigned to bed early August, being turned every 2 hours. We had Marie Curie Carers 3 times a day for last 3 weeks with a daily district nurse visit to dress the sore/ulcer. Hardly eat or drank once in bed and didn’t respond to anything during the last week. It’s shocking but I understand your need to know, so you can somehow prepare. Just remember every one is different but if you can learn from what I think were our mistakes, having an operation, staying in hospital too long for tests and not guarding sufficiently against damaging falls early on then I hope this helps you.
In retrospect I wonder if there is anyway to slow this down but the majority of other sufferers seem to have had much longer. Good luck Kaye, hugs sent xxx
I was diagnosed last year and found this very useful, packed with resources for the different situations that MSA brings. They global MSA conference was just over but on the "Resource" tab - there is an incredibly useful compilation of information and self help that you may find useful
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Fitness seems to be so important?
A retirement we couldn’t have imagined. 
Struggling :( 
