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Multiple System Atrophy Trust

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My darling husband Tim

With a heavy heart my loving strong courageous husband Tim sadly passed away on the 6th of April aged 62 yrs peaceful at home surrounded by his loved one's. He...

With a heavy heart my loving strong courageous husband Tim sadly passed away on ...

SandieH64

•4 days ago

24 Replies

Feeling very weak after meals

Hi all, my husband (64) has MSA, diagnosed last year in July. We have had 3 incidents recently where we went out for a bite to eat - just a light lunch - and...

Hi all, my husband (64) has MSA, diagnosed last year in July. We have had 3 inci...

Cinnamon40

•6 days ago

4 Replies

Dystonia in my feet

Hello, I think I have this dystonia in my feet and sometimes my legs and even my jaw last night (it was a long night). The have been quite powerful and even...

Hello, I think I have this dystonia in my feet and sometimes my legs and even m...

fixedit

•6 days ago

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my darling Jon

I’m so sad to say my darling husband Jon passed away last night just 54, 4 yrs after diagnosis. He put up such a fight, determined not to leave me but in the...

I’m so sad to say my darling husband Jon passed away last night just 54, 4 yrs a...

Kaye31

•7 days ago

19 Replies

Thank you

Hello everyone.I just wanted to say thank you for being such a wonderful group. After a long battle, and managing to get a referral to the National...

Hello everyone.I just wanted to say thank you for being such a wonderful group. ...

Hidden

•11 days ago

5 Replies

MSA-C?

I think my husband has MSA. He has not been diagnosed. He has been sick for 6 1/2 years. He’s been out to Mayo, down to U of M, and now doctors through...

I think my husband has MSA. He has not been diagnosed. He has been sick for 6 1/...

evamariejohnson

•12 days ago

7 Replies

book club

https://www.facebook.com/share/g/1AFrq4fvg3/?mibextid=wwXIfr I am setting up a book club for those who are affected by MSA and/or their carers (if they...

https://www.facebook.com/share/g/1AFrq4fvg3/?mibextid=wwXIfr I am setting up a...

PaulaG3

•13 days ago

2 Replies

Runny nose after every meal

Hi all, My husband has MSA and he has a runny nose after everything he eats. He has tried anti-histamines but they don't make a difference. Is this something...

Hi all, My husband has MSA and he has a runny nose after everything he eats. He ...

Deepblueoceans

•20 days ago

10 Replies

What is wrong with me?

I’ve been ill for one year. Started with insomnia and daytime grogginess to the point of stupor. In the past year I have had various add on symptoms. (Taking...

I’ve been ill for one year. Started with insomnia and daytime grogginess to the...

LoveMyGod

•24 days ago

2 Replies

Lots of research going on down-under

“Scientific breakthrough on brutal brain disease”...

Janeyl

•25 days ago

2 Replies

Parkinson's breakthrough

Undiscovered cause of Parkinson’s found for first time by scientists in huge breakthrough - The Independent https://apple.news/ApxDeIPGtRsaW3LX6FeAW0Q

Undiscovered cause of Parkinson’s found for first time by scientists in huge bre...

Groovyag

•26 days ago

1 Reply

Chuckle time

A cat died and went to Heaven:God met the animal at the Pearly Gates and said. "You have been a good cat all of these years. Anything you want is yours for the...

A cat died and went to Heaven:God met the animal at the Pearly Gates and said. "...

Paul_and_Sue_Wood

•27 days ago

3 Replies

where to go from here?

hi this is my first time posting. I care for my mum who was diagnosed with MSAp about a year ago. She was being treated as a Parkinsonism patient for 18m prior...

hi this is my first time posting. I care for my mum who was diagnosed with MSAp ...

HelpingMum25

•28 days ago

9 Replies

GI problems——how do you eat?

Is this normal for MSA patients because of dysautonomia (or possibly ataxia)? Have both starting around 2015. I’m sure it’s not easy with MSA but when or...

Is this normal for MSA patients because of dysautonomia (or possibly ataxia)? H...

neveronabike

•29 days ago

3 Replies

Oximeter Readings

What numbers do MSA patients typically get on Oximeter at night and during the day. I’ve been getting a lot of 94-95 readings. Thoughts?

What numbers do MSA patients typically get on Oximeter at night and during the d...

LoveMyGod

•30 days ago

4 Replies

Skydive

I was diagnosed with MSA two years ago. I am still mobile and in order to raise funds for the MSA Trust, I will be doing a Skydive on 10th May’25...

I was diagnosed with MSA two years ago. I am still mobile and in order to raise ...

iPad4

•1 month ago

1 Reply

Blood pressure

Does anyone with MSA have experience with blood pressure being high with lying, sitting and standing? Going up higher as you proceed from sitting to 3 min...

Does anyone with MSA have experience with blood pressure being high with lying,...

LoveMyGod

•1 month ago

3 Replies

Chuckle time

One day in the Garden of Eden, Eve calls out to God."Lord, I have a problem!" "What's the problem, Eve?" "Lord, I know you created me and all of this beautiful...

One day in the Garden of Eden, Eve calls out to God."Lord, I have a problem!" "W...

Paul_and_Sue_Wood

•1 month ago

1 Reply

Short introduction

Hello, Thank you for accepting me on this forum. My husband has recently been diagnosed with MSA, after an initial diagnosis of Parkinson's Disease and...

Hello, Thank you for accepting me on this forum. My husband has recently be...

Deepblueoceans

•1 month ago

12 Replies

Wheelchair Accessible Vehicle and wheelchair size.

I'm after some advice regarding a wheelchair adapted vehicle and wheelchair please. My wife is using a standard wheelchair at the minute but we're expecting...

I'm after some advice regarding a wheelchair adapted vehicle and wheelchair plea...

Seasider12

•1 month ago

20 Replies

Flying with walking poles

I have MSA and have found walking poles to be helpful with my terrible balance and slow, shuffling walk. I’d like to take the poles with me when I holiday...

I have MSA and have found walking poles to be helpful with my terrible balance ...

Gill-C

•1 month ago

10 Replies

Others experience

Sorry to post given everyone here is going through this but I just wondered about others experience. MiL diagnosed 4 years ago. Despite upping meds etc she is...

Sorry to post given everyone here is going through this but I just wondered abou...

GP1988

•2 months ago

10 Replies

Breathing

Does anyone have inspiratory sighs? Tell me how you know if your breathing is going south. If I understand it the message from the brain is faulty in...

Does anyone have inspiratory sighs? Tell me how you know if your breathing is ...

LoveMyGod

•2 months ago

2 Replies

Sunday chuckle

I went to tesco today and I have to tell you this story:I was behind a grandfather and his badly-behaved grandson. He has his hands full with the child...

I went to tesco today and I have to tell you this story:I was behind a grandfath...

Paul_and_Sue_Wood

•2 months ago

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I passed out!

What could this be? We are awaiting delivery of our WAV van but today as it’s so sunny i wanted to go out. We had a nice afternoon out. But I had trouble...

What could this be? We are awaiting delivery of our WAV van but today as it’s so...

Monkeyfeet1

•2 months ago

16 Replies

Chuckle time

A Vicar entered his donkey in a race and it won.The Vicar was so pleased with the donkey that he entered it in the race again and it won again. The local paper...

A Vicar entered his donkey in a race and it won.The Vicar was so pleased with th...

Paul_and_Sue_Wood

•2 months ago

2 Replies

Orthostatic Intolerance

I had a Autnomic Reflex Screen in 2008 which showed b/p drop, but all the other things looked okay so it was dxed as orthostatic intolerance. Flash forward, I...

I had a Autnomic Reflex Screen in 2008 which showed b/p drop, but all the other ...

LoveMyGod

•2 months ago

4 Replies

The CUE1, created by Charco Neurotech, is being used by former BBC technology correspondent Rory Cellan-Jones

I've been reading some articles about this piece of equipment that you stick to your chest. It's supposed to help with freezing in Parkinson's patients. I was...

I've been reading some articles about this piece of equipment that you stick to ...

Soco74

•2 months ago

5 Replies

Central Sleep Apnea

Have any of the patients here been diagnosed with Central Sleep Apnea? Is it part of the REM Sleep Disorder? How is it addressed? Thanks

Have any of the patients here been diagnosed with Central Sleep Apnea? Is it pa...

LoveMyGod

•2 months ago

10 Replies

Self propelled wheelchair

I got self propelled wheelchair off NHS find my hands really sore today trying to work it am I better with motorised one can anyone help please

I got self propelled wheelchair off NHS find my hands really sore today trying t...

weemaisie

•2 months ago

6 Replies

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Posts - Multiple System Atrophy Trust | HealthUnlocked

Multiple System Atrophy Trust

My darling husband Tim

Feeling very weak after meals

Dystonia in my feet

my darling Jon

Thank you

MSA-C?

book club

Runny nose after every meal

What is wrong with me?

Lots of research going on down-under

Parkinson's breakthrough

Chuckle time

where to go from here?

GI problems——how do you eat?

Oximeter Readings

Skydive

Blood pressure

Chuckle time

Short introduction

Wheelchair Accessible Vehicle and wheelchair size.

Flying with walking poles

Others experience

Breathing

Sunday chuckle

I passed out!

Chuckle time

Orthostatic Intolerance

The CUE1, created by Charco Neurotech, is being used by former BBC technology correspondent Rory Cellan-Jones

Central Sleep Apnea

Self propelled wheelchair

Search posts

Pinned Posts

Latest poll

Have you ever been advised on what benefits you and your family may be eligible for?

Topics

Archive