Introducing myslef

[esj20]

Hi

My name is Alec and I live in Scotland.

I was diagnosed in 2022, although my symptoms were apparent since 2018.

I'm looking to speak with others and learn more about coping strategies and share experiences .

Alec

[Ruthi15]

Hi Alec I too am from Scotland and was a caregiver for 11 years for my husband Alan I live in Fife just say if I can help

[esj20 in reply to Ruthi15]

Morning Ruthi

I'm overwhelmed by the messages of support.

It's somewhat reasusring to hear from others who have and are on the same Journey.

Something I have realised ihat it'just as difficult for those who are anaware are rrently caring forcaring who are caring with those who have MSA as we sometimes are so involved we fail to see others not oping.

Thanks for coping

Alec

[CanAmK]

My heart bleeds for you. My husband was diagnosed in 2020 but recently passed away at age 53. My best recommendations for you is to seize the day and do everything you heart desires NOW and document everything so you and your family can share those memories as time goes on. Use all the tools that are recommended for you. They will make life easier and ultimately provide you with more independence. Each of us have our own story. I am eager to tell any and all stories about my husband Bart so ask ANYTHING you are curious about even if it seems personal or inappropriate. Best wishes, Krista.

[esj20 in reply to CanAmK]

Hello Krista

So sorry to hear about your loss, and thanks for taking the time to reply.

Surprisingly, even for me, I'm still working full time although I'm winding up my company as I am no longer able to cope; fortunately, I'm self-employed and can undertake most of my work from home, but now I can only type with one finger, so it's not fair on my clients.

One thing that stands out is that we cannot put off things we'd like to do, so I intend to seize the day and do what I want to do.

I used to be an avid mountaineer and outdoor enthusiast, and it pains me I'm unable to partake in these activities.

So, I'm concentrating on the things I can do now while not dwelling on those I can.

Thanks for reaching out.

Alec

[Monkeyfeet1 in reply to CanAmK]

I’m so sorry for your loss. Bart was so young.

Great advice!

Thinking of you, Krista.

[Polesden11]

Hi Alec, sorry to see you here if you know what I mean. Do you have any support at the moment as you sound as if you're struggling alone? I assume you've joined the Trust and if you speak to the nurses there they'll have loads of info for you both generally and specifically. Lots off people suggest the local hospice but I haven't done that because I feel its too early and my local hospice isn't, local I mean. If your GP is not clued up on MSA then the Trust will happily send them a useful info pack.Do you live alone, do you have partner , family, or carers coming in?

You should also speak to the OTs if you can because they'll assess

Your house for you for your current and future needs especially if your thinking of making any physical changes they cld save you making expensive mistakes

My personal recommendation is to hang onto Yr sense of humour if possible. I rarely seem to post anything sensible,mostly relaying stories about my dog Tales from the Doghouse you might say!!

🐕‍🦺

Hang on in there, we CAN beat this Bastard Beast

Suex

[esj20 in reply to Polesden11]

Sue, Lovely to hear from you.

I know what you mean about being on hear, but on the other hand, it's also bloody marvellous that you are all here offering support

(to say to you and everyone else on here; no offence will ever be taken as I have an arid and sometimes cheeky sense of humour, and I will at times appear very un sensible too)

I am receiving lots of help and support from the MSA trust and my local care team. I live with my wife, Fiona,

My GP was and is PANTS! Initially, they told me there was nothing wrong with me even though I was losing the use of the left-hand side of my body, but I fought on, and once I accessed my consultants, they were, and are amazing. Combined with the MSA trust, the support we receive is brilliant.

I suppose with my GP it's just the case of making them more aware of this bloody condition.

I must say, though, during my now many hospital admissions they have been more than helpful.

i never go anywhere now without information and an explanation of MSA, just in case people are unaware of the condition.

Thanks for your word Sue.

[GreenJo]

Hi Alec - my husband TC was diagnosed with Parkinsons in 2019 and MSA in 2022. His symptoms probably started much earlier about 2016. We are in Glasgow. TC has deteriorated rapidly and he's been bed bound for 5 months now.We've had good support from our Parkinson's nurse and also our local community rehab team. The Community Rehab team have sorted all equipment needs and from them we've got ongoing input from physio, OT and nurse. We're also in contact with hospice - they've input re pain medication. He's currently in hospital having feeding tube fitted - hopefully will make a difference re his nutrition. Can be overwhelming after diagnosis. Has helped getting support systems in place - then one day at a time

[esj20 in reply to GreenJo]

Hi Jo,

sorry to hear about your husband.

I was diagnosed only in June last year, but looking back, I did have symptoms 4 years prior, starting with the night terrors and falling out of bed, which, at first, I did find rather amusing, especially when my night terrors meant me shouting out expletives while I was staying at my mother in laws when Fioan and I were building our home.

Fiona and I are in the Scottish Borders and have our MSA nurse and Parkinson's' nurse coming to asses our home for OT stuff and things.

We are fortunate, though, as once we finished building our home, we embarked on building a smaller holiday cottage for a pension fund for my retirement. Since we realised the diagnosis, we adapted the plans for the holiday cottage to accommodate my future needs, wider doors, wet rooms, etc.

We are not putting off now and ensuring we have everything in place before it's needed.

On the upside, though, i no longer have to worry about pensions for my retirement

Lovely to hear from you.

[Monkeyfeet1]

Hi Alec

I’m sorry you have to be here. I, too, was diagnosed in 2022. I thought symptoms began in 2021 but looking back it was in 2019 after surgery.

I’m sorry you have to give up your business. I gave up my career and not having a focus is tough.

Also, interested to hear you was previously a mountaineer - I used to run and climb . I find those memories tough but at least we have the memories!

Happy to chat . Anytime.

[esj20 in reply to Monkeyfeet1]

Hi there

Yes, giving up a career is challenging, as I fought bloody hard to get here. Education let me down. (another story for another time)

I genuinely miss my mountains as they were my solace and friends. I had plans and dreams of the mountains yet to climb and put these on hold for my career and building a home and future.

I was also an avid cyclist but recently purchased an electrical-assisted recumbent trike. Even if I have one year of use, I'm happy as it allows me much freedom.

As you say we have memories of those mountains and once I'm at my journey end with MSA I've arranged to be returned to those hills and mountains.

Look forward to chatting more.

Where are you based?

[Monkeyfeet1 in reply to esj20]

I’m so sorry. Yes, our future is robbed from us! I was an educator so will lay low 🙄

I’m in the SW.