Posts - Multiple System Atrophy Trust | HealthUnlocked

Multiple System Atrophy Trust

1,820 members•1,464 posts

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MSA Trial in early stage <4yrs patients completed. Company is now in trading halt

The trial finished in Nov, the data crunching must be complete, the company has gone into a trading halt, pending revealing topline results. We should know in...

The trial finished in Nov, the data crunching must be complete, the company has ...

•21 hours ago

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Feeling exhausted

My wife Sue was initially diagnosed with Parkinson's in September 2023 and put on madopar. The dosage has been increased over that time but she appears to be...

My wife Sue was initially diagnosed with Parkinson's in September 2023 and put o...

•1 day ago

Nursing Home

Hi, my husband is now in a nursing home, something I often feel guilty and a failure about. After posting some recent posts it was ,in one way ,so good to...

Hi, my husband is now in a nursing home, something I often feel guilty and a fai...

•1 day ago

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madopar

was hoping someone could help my husband is very stiff is taking sinemet but didn’t seem to be helping the Parkinson’s nurse is trying him on madopar with...

was hoping someone could help my husband is very stiff is taking sinemet but di...

•4 days ago

Cold hands

Hi everyone, hope it is ok to ask this here. R was diagnosed with Parkinson’s in 2021 but there have been a few doubts in my mind about whether his diagnosis...

Hi everyone, hope it is ok to ask this here. R was diagnosed with Parkinson’s in...

•5 days ago

Deprivation of assets?

Hi, sadly my husband is now in a nursing home as his condition deteriorated so much over the summer I could no longer manage him at home. we are thinking about...

Hi, sadly my husband is now in a nursing home as his condition deteriorated so m...

•6 days ago

Chuckle and groan

OMG!!! YOU WILL NOT believe what just happened!! I'm at Tescos getting my coffee just now when I walked up and notice two police officers looking at this young...

OMG!!! YOU WILL NOT believe what just happened!! I'm at Tescos getting my coffee...

Paul_and_Sue_Wood

•6 days ago

Funeral Plans

Hi, sorry to be morbid, but we have to think about these things - we are thinking of buying a funeral plan ahead of time and are wondering if others have...

Hi, sorry to be morbid, but we have to think about these things - we are thinkin...

•7 days ago

RIG tube

Apologies in advance for the graphic explanations in my post but we’re desperate for some answers. My husband was admitted to hospital on Friday last week...

Apologies in advance for the graphic explanations in my post but we’re desperate...

•9 days ago

Bristol Support Group

I will be attending this group on 27th Jan, for the first time, with a friend as my husband doesn't want to attend yet. I just wondered 🤔 if anyone else...

I will be attending this group on 27th Jan, for the first time, with a friend a...

•10 days ago

Care Chair

My husband is now completely immobile and his pressure areas are very fragile. He has a powered alternating air cushion in a tilt in space chair provided by...

My husband is now completely immobile and his pressure areas are very fragile. H...

•12 days ago

My Lovely Dad passed ❤️

Monday 13th Jan after 2 weeks in hospital my lovely Dad passed away. Dad was about 8 years into his MSA journey initially diagnosed with Ataxia but last 2...

Monday 13th Jan after 2 weeks in hospital my lovely Dad passed away. Dad was ab...

•12 days ago

Chuckle and Groan

This guy goes to the doctor and says, "Doc, I can't stop singing certain songs. All morning I've been humming 'The Green, Green Grass Of Home.' Yesterday it...

This guy goes to the doctor and says, "Doc, I can't stop singing certain songs. ...

Paul_and_Sue_Wood

•13 days ago

electric wheelchair advice

i’d value your experience on electric wheelchairs. I’ve recently been offered what is described as a power chair (the Rascal Razoo) - seems to be a cross...

i’d value your experience on electric wheelchairs. I’ve recently been offered...

•15 days ago

Discrimination

Are people with MSA coming across discrimination within the NHS? We are finding that certain services are available to people with MND but not MSA!!! For...

Are people with MSA coming across discrimination within the NHS? We are finding...

•19 days ago

Sleep Study

later this month I’m having a sleep study and don’t know what to expect. My husband says I snore and he thinks I stop breathing. Does anyone have experience of...

later this month I’m having a sleep study and don’t know what to expect. My husb...

•19 days ago

Medication via gastrostomy tube

Hi, does anyone have experience of giving Madopar via gastrostomy tube? I'm finding it doesn't dissolve very well and I nearly blocked my husband's tube this...

Hi, does anyone have experience of giving Madopar via gastrostomy tube? I'm fin...

•19 days ago

Voice/speech

Hi, I've been diagnosed with Parkinsonism in 2016 and then re-diagnosed with MSA-P in 2020. Amongst all the different symptoms, my voice/speech is suffering...

Hi, I've been diagnosed with Parkinsonism in 2016 and then re-diagnosed with MSA...

•21 days ago

Vision

Does anyone have experience of difficulty finding glasses that work effectively? My husband had neck dystonia so can't move his head very much and is finding...

Does anyone have experience of difficulty finding glasses that work effectively?...

•22 days ago

hanger effect

what is the cause for hanger effect and any solutions for treatment. It doesn’t happen often but can be severe.

what is the cause for hanger effect and any solutions for treatment. It doesn’t ...

•1 month ago

low pulse

my husband who was diagnosed with MSA – C in 2017 started to have low pulse two weeks ago. From the high 40s to to the low 40s. Before that it was in the 50s...

my husband who was diagnosed with MSA – C in 2017 started to have low pulse two ...

Datesandwalnuts

•1 month ago

difficulty walking

has anyone had pains in back of head I have MSA C I use zimmer in the house but wheelchair outside finding it really hard now as if my legs aren’t working...

has anyone had pains in back of head I have MSA C I use zimmer in the house b...

•1 month ago

Christmas Chuckle

Two young boys were spending the night at their grandparents' house the week before Christmas. At bedtime, the two boys knelt beside their beds to say their...

Two young boys were spending the night at their grandparents' house the week be...

Paul_and_Sue_Wood

•1 month ago

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As Happy as Christmas as possible

I understand that, for many, myself included, this Christmas may be a challenging time, filled with memories of cherished moments from the past. Nevertheless,...

I understand that, for many, myself included, this Christmas may be a challengin...

•1 month ago

Episodes of not being able to wake although can hear

my step dad has MSA P. A new symptom has just started happening where he goes unresponsive. It’s often after a sleep. He just can’t come round, can’t open his...

my step dad has MSA P. A new symptom has just started happening where he goes un...

•1 month ago

Chuckle Time

Anyone who has ever dressed a child will love this:Did you hear about the teacher who was helping one of her pupils put on his boots? He asked for help and she...

Anyone who has ever dressed a child will love this:Did you hear about the teache...

Paul_and_Sue_Wood

•1 month ago

pain management

Hiya, My name is Keith I am 66 years old and have been diagnosed with MSA-P in November. I am looking for advice and guidance on my pain management. For...

Hiya, My name is Keith I am 66 years old and have been diagnosed with MSA-P i...

•2 months ago

cold medication

hi everyone I’ve got a really snotty nose and sore throat. I know we’re all different but what works for you!

hi everyone I’ve got a really snotty nose and sore throat. I know we’re all di...

•2 months ago

Christmas Chuckle time

Once again this year, I’ve had requests for my Vodka Christmas Cake recipe so here goes. Please keep in your files as I am beginning to get tired of typing...

Once again this year, I’ve had requests for my Vodka Christmas Cake recipe so he...

Paul_and_Sue_Wood

•2 months ago

cystitis

I seem to be getting cystitis quite a lot, was wondering if this is common on MSA- C ??

I seem to be getting cystitis quite a lot, was wondering if this is common on MS...

•2 months ago

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