Update : Dear friends As many of you... - Multiple System A...

Multiple System Atrophy Trust

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Update

Bea6 profile image
Bea6
17 Replies

Dear friends

As many of you know I was alone at home and struggling. I am now in my local hospice and although very poorly they are trying to get on top of my symptoms.

Life is a challenge right now thinking of you all

Much love bea xx

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Bea6 profile image
Bea6
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17 Replies
phamwales profile image
phamwales

Dear bea

You’re very much in our thoughts at the moment

I’m sure you’re feeling the care and love at the hospice

P

Bea6 profile image
Bea6 in reply to phamwales

The hospice are lovely and I am so very grateful xxx

Hellebelle profile image
Hellebelle

Hi Bea,

I have been wondering how you are doing since your recent struggles with trying to get help.

I am so pleased that you are being cared for at the hospice. In my experience with dad, they were excellent in helping him manage his symptoms. Do they have a social worker attached to them or some other professional who could help with your home situation? You might also qualify for CHC funding?

Please update us when you are up to it.

Sending lots of love and strength to you.

Helen x

Bea6 profile image
Bea6

I feel very very blessed that I came here as I have now had my continuing healthcare assessment and they agree I qualify that’s a big weight off my mind and yes eventually when I’m stable they will put a care package together for me so the future is looking better once I’m stronger. Thank you so much for your kindness and thoughts much love Bea

Hellebelle profile image
Hellebelle in reply to Bea6

So pleased that things are looking brighter for you Bea. Helen xx

FredaE profile image
FredaE

That is such good news. We know that this beast is bad enough with someone living with you to look after you but to be inadequately funded and trying to be your own carer must be unimaginably worse.

Hellebelle profile image
Hellebelle in reply to FredaE

I totally agree. As much support is needed with this condition as possible, especially when living alone.

Yanno profile image
Yanno

Hello Bea,

I'm so pleased that the hospice are helping you to get on top of things. A few years ago Jax went into our local hospice for a short time to sort out her medication etc - it was so very helpful and they have continued to give us support ever since.

We will be thinking of you, take care, Ian

Dear Bea I was sorry to hear that you were now in hospice but pleased that they are helping you. Thinking of you x

chester2107 profile image
chester2107

i’m very pleased to hear this and that they are looking after you , it is such a scary disease , sending you love xx

Diane831 profile image
Diane831

It is really good news that you are getting some care and attention. It makes all the difference doesn’t it. A time for you to try and relax whilst the staff there look after you and work out with you the best plan for your safe future.

Best wishes, Diane

Kiwimagic profile image
Kiwimagic

Good morning Bea

Delighted to hear that you are in the hospice as I know from the posts you were struggling at home.

I’m sure that you will be receiving the care that you need and deserve.

Take care and keep us updated x

Rafaina profile image
Rafaina

Thinking of you Bea.

Best wishes Clare x

Spanishholidays profile image
Spanishholidays

So sorry to your not well,hope you get better soon and can return to your home ready for the sunshine,take care

Really glad things are coming together now. Hope you get pampered in there. Kx

TK-67 profile image
TK-67

I was only wondering earlier how you were - I'm pleased you're in the care of a hospice, from our experience they are amazing places and especially at the moment you're in the best place possible! Take care and let us all know how things are.

Gammertosix profile image
Gammertosix

Bea6, I am thankful that you are in a place where you can be cared for. I am still able to take care of my husband, and I know that he just would not be able to do a whole day alone at any level. Blessings on you as you adjust to being there. Thank you for letting us know too.

Gammertosix

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