Ataxia UK
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Carers need support themselves🙂

Although it’s a natural instinct to care for the needs of a loved one, we’re all aware that Carers themselves often need empathy and support from people in similar situations, within a safe, confidential environment. A new group has been set up specifically caregiversupportcommunity.org 🙂 This group is supported by BensFriends.org 🙂xB

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I am a caregiver for a very sick wife, who is in heart failure. I, also have Diagnosed Ataxia and Parkinson’s, so I don’t know what group I’d fit in best with. I take care of my wife and myself. Some days, I have no idea how I make it through the day! I do know that this forum is helpful to me. Happy New Year to all!

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🙂 The new Caregiver Support Group has just recently been launched, and ‘someone’ has yet to be the first to post to get the ball rolling 🙂

Ben’s Friends covers a variety of Rare Diseases, Ataxia is included but not Parkinson’s. Anyone can scroll down the list, click on a specific group and read the posts, no-one can actually post until their application to join the group has been approved 🙂

It’s good to hear positive comments about Support Groups 🙂 My first foray into online support was actually on healthunlocked ataxiauk, I’d just been diagnosed and was in complete turmoil 😏 It was a revelation to find other people who coped with similar challenges, I can’t tell you what a difference it made to feel I wasn’t alone 🙂 Just a post of a few kind words can brighten someone’s day 🙂

Best wishes to you and your wife 🙂 xB

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Hi. ddmagee1 first of all a warm welcome to this 'club' and a good New Year. You are to be admired how you are coping

I would suggest that you write down as much as you want and you will get endless help and advise from those of us who have Ataxia. It's reassuring to hear of other people who have various forms of ataxia and how they cope

Very best wishes. Ted

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Thanks for the warm welcome Ted. I mainly have Cerebellar symptoms with Ataxic gait. Because of balance difficulties etc. I’ve had a few falls, over the years. A positive attitude, and having to be a caregiver means that I’ve had to find a way to cope. Some days are easier than others, of course. I do not have an inherited form of Ataxia, rather, mine is due to a birth defect, where blood vessels have impinged upon the cerebellum, where important nerve roots enter, causing my Ataxic Cerebellar symptoms. Happy New Year to you and all Ataxians on this forum!

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Sending best wishes to DD, Beryl and Ted for a very Happy New Year 2018....,Take care and Stay safe.

Don 😀 For Beryl 🌹

Sorry Guys!

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✈️ Happy New Year✈️ 😉xB

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Hi, im Maureen, I set up this profile for my sister n law who just moved in with us do to fall precautions. She has MSA-C. We are aggressively researching any and all treatment and trials going on around the world. Obviously we are looking for ways to help her maintain till cure can be found. We are looking forward to all contact here! Thank you

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Hi Maureen🙂 If you weren’t already aware, there is a group on Facebook you might be interested in. MSA Coalition Public Discussion Group on Multiple System Atrophy. 🙂xB

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