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[Kiwimagic]

Good morning all

Just checking in on everyone.

Hope that you are all keeping well.

Just to let you know that I’m thinking and praying for you all.

Much love

X x

[Rafaina]

Thanks Kiwi,

We’re doing ok. Looking forward (not quite what I mean but !) to a hospital appt. next week which we hope will answer some questions and tweak the meds. My partner feels like he has moved into a different phase - he is just about working 2 days a week but can’t go on. That has lots of consequences for us but quality of life and keeping as well as he can is more important. Giving up work will be just another step in a direction we don’t want to go. But there is no point fighting it - it would take up too much energy. Best to concentrate on what we can do and adapt.

Thanks for your thoughts and take care x

[Yanno]

Hello Magic!

What a lovely thought. We are in wet old Worcestershire, puddles everywhere but thankfully dry indoors - if we were to flood half the country would be under water!! Our bridge out of the village is flooded however which entails a diversion through local villages but nothing compared to what some people are going through.

I love the Kiwimagic name - my email address is magicfizz.com!!

Take care, Ian

[Kiwimagic]

Rafaina

MSA is so unpredictable, so I would say take each day at a time. There will be good and bad days ahead, but try not to worry about the future.... embrace it ....like you say adapt. Take all the aids/assistance offered early on then you have things in place should you need them.

Yanno

I’m in Cheshire and it’s full and lashing rain!

Kiwimagic .... my husband is a kiwi (from NZ!) thanks very much for sponsoring Robyn... very kind of you.

Keep going everyone x

[Rafaina in reply to Kiwimagic]

Thanks !

I am on a train to Durham - looking a bit grey and damp.

No connection with NZ but would love to go there one day !

[Daleston10 in reply to Rafaina]

Hi is that Durham Uk and do you live up this way

[Rafaina in reply to Daleston10]

Yep! Where are you?

[Daleston10 in reply to Rafaina]

Hi I live in Hartlepool

[Rafaina in reply to Daleston10]

Oh dear - purely for football reasons ! We are in Darlo !

[Kiwimagic in reply to Rafaina]

I’m in Cheshire but my best friend lives in Durham I’ll be up there in 2 weeks time

[Daleston10 in reply to Kiwimagic]

We spent a lot of time in Chester enjoy your football I’m not a great fan of it

[Hidden]

Hello. I was thinking of everyone yesterday, when I saw an article in the newspaper. About a lady in Germany who has worked out how to construct bespoke wheelchair ramps out of lego You can Google it.

Kx

[Rafaina in reply to Hidden]

I have just googled it - something so simple. Great idea!

[Daleston10]

Good morning hope you are well xx

[Hellebelle]

Hi, thank you for your post. Its comforting to know that people understand and know what you are going through.

Dad's funeral was last week and although it was so very sad, I think we did him proud. I am slowly getting myself up and running again, although it's hard knowing he isn't there anymore.

It has been such a support knowing that people in this community really understand about this condition.

Helen xx

[Kiwimagic in reply to Hellebelle]

Aaah Helen you will definitely have done him proud. Thanks for all the support you’ve offered everyone on this forum,

It’s the absence, the emptiness the grief.

We will always miss our dads forever.

When I think of my dad now, I do not see him with MSA I see him before that, strange how the mind works.

What is keeping me going right now is that he’s not suffering anymore.

May our dads rest in peace forever.

[LaCrosse87]

You are so kind and your personality shines through like a ray of sunshine even in the midst of what you and your family has been through. Your father must have been very proud of you.

[Kiwimagic in reply to LaCrosse87]

Thank you so very much, that is so kind.

My mission now is to spread the word about MSA and to be able to raise funds for vital research so that one day a cure will be found.

It’s such a cruel unforgiving disease.

Everyone on this forum is so lovely and I refer to you all as my MSA family.