just need to talk to others with this condition

[Olhos]

Any tips or advice on how others deal with this . How long they have had it and how the symptoms have progressed

Anyone who is considering end of life help

Any advice at all really as I don’t have anyone to talk to here so very much looking forward to first coffee online

[Kaye31]

hiya. My fiancé and I have been together 3 years this July. We met and he was a runner.

6 months later he developed a finger tremor and slight shuffle. He stopped running and cycled on an exercise bike.

3 months later bike went. He couldn’t butter toast.

He was diagnosed with Parkinson’s December 2020. July 2021 MSA. October 2021 needed a cleaner and personal assistance. November 2021 needed a walker and care. December 2021 moved in with me.

He has a carer for personal care 5 mornings. He has assisted feeding. A motorised specifically designed wheelchair and needs help with all tasks.

His voice has massively deteriorated and very slumped.

He still smiles and enjoys company and for that I am truly grateful.

We are talking about end of life decisions now.

We also used the benefits of counselling etc from a local hospice.

Can I ask where you are on this journey?

[Hidden]

Have you talked to the MSA team about this? Have you been referred to a specialist regarding a treatment plan? My husband went through some sort of weird breathing patterns for a while. He had a sleep monitoring to check blood gases etc but nothing seemed to come if it. You might find it helpful to go to the support meetings i know my husband did. You can meet other people and find out practical ideas and just not feel so isolated. Xx

[Olhos in reply to Hidden]

Hi , I live in Portugal but I will be joining the online coffee mornings as a huge help and contact with other people with same problem . The consultant here said there really is no treatment plan apart from medication . He just said go and live your life 🤷🏻‍♀️

[Hidden in reply to Olhos]

My husband had tge same advice. Don't look for a cure... There isn't one is what we were told. Reach out to all the on line support groups you can. There's always someone to listen. Do what you can without exhausting yourself, as MSA isn't very forgiving if you do too much. The beauty about the MSA trust is you can get lots of sound advice.Live in the here and now. Try and get out and about and enjoy coffee or wine in the su shine. Xxx

[Paul_and_Sue_Wood]

Othos,

I see you are in Potential, but still nice to hear from you.

The condition is a continual deterioration of the nerve system, which I am sure you have already found out. My wife and I are over 12 years into this condition and we still enjoy life. Bluntly there is nothing you can do to stop it, you can only slow it down and adapt to a new way of life.

Not sure what back up you have in Portugal but here we all talk to out Doctors, Consultant neurologist, local nurses, care workers who help you do daily things and hospices.

It's a shock for sure, but it cal also lead to a new set of friends and a new way of life.

[Olhos in reply to Paul_and_Sue_Wood]

Hi , thank you for your reply . Yes we retired to Portugal as the sunshine is so much better than the cold and rain . The downside is that there are no support here at all . That’s why I will be going on the online coffee mornings . I understand what it is and that there is nothing that can be done . My symptoms haven’t really progressed at all so it’s like a ticking bomb

I carry on doing pretty much what I have always done to a certain extent but Obvioisly there are limitations now and I get so exhausted . My doctors knows of no one else with this condition here . My friends here are fantastic but Obvioisly they know nothing about it so hard to talk about and I don’t want to be a dolly downer when we are together and having fun . Sounds like you have a great support system , where in uk are you ?

[Paul_and_Sue_Wood in reply to Olhos]

Hi

We are in the midlands.

If you are a UK resident that has retired I would start making plans to return at some point so you get the support you need ( carers, neuro, nurses, doctors, fiends, family)

This condition is progressive but mindset and support can slow it down in my experience.

Keep doing what you can and plan for the worst.

🤓 Paul

[Olhos in reply to Paul_and_Sue_Wood]

I am a resident of Portugal . No intention of returning to the uk . I have a plan for when The time comes that I need constant care and just surviving rather than living . It’s a delicate subject but also a subject I can discuss at one of the coffee mornings .

[ReverendBadger]

Hi, I had my diagnosis in May last year. My advice for dealing with this dreadful disease is to tackle each symptom individually. Sometimes there are drugs that will help some people so try them. Sometimes a device or some apparatus is a solution. Sometimes a different way of doing things works. And always say "Yes" to any help offered by a friend.

Try me if you want advice or chat about any specific problem. i haven't been as lucky as some as my disease has progressed fairly rapidly and I have 18 different symptoms to cope with (but getting lots of help here in UK).

[Monkeyfeet1 in reply to ReverendBadger]

take care, Ken x

[FredaE]

portugal--beware of too much sun as sooner or later your temperature control may give up. Plant a tree to sit in the shade or a pergola with a quick growing vine or wisteria