Feeling Alone

Hi all, new to this.

My mother was diagnosed with Hereditary Ataxia around 5 years ago with recently things getting progressivly worse. Along with the ataxia she seems to suffer with severe anxiety. The last week or so she has become increasingly confused & unstable. Im not coping very well and no one around me understands so I have no one to talk to. I have no idea how to help her, im doing my best but I feel as though im losing her. Im 25, a mother of one and pregnant with my second. I hope to be able to talk to someone who knows how I feel. Can offer advise or support or anything. Thank you for reading xx

8 Replies

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  • Hello Charlotte

    AtaxiaUK has a medical pack aimed at GPs etc; there are only 10,000 cases in this country apparently so the average Dr is perhaps not as well informed as we would like. Best if you approach the doctor first, see if they'd like to be sent the professional medical pack in case there are any 'i's and 't's to be dotted or crossed... Pride can be funny stuff!

    The GP can also prescribe to help sort out the anxiety, I didn't like that but I'm assured that quite a few older people take something, not least because the end slowly approaches!

    I was about to make a separate forum entry, I'll put it here as well.

    It's easy to say but many people seem to feel that help means asking on here or somewhere similar but much of this Ataxia thing can be beaten, or at least held at bay, by application of practice which can come down to willpower

    Look at the website walkingwithataxia.com it's worth a thorough exploration but start with "Basic Overview" to get started. It's helped me already in the last few days. It's an American surgeon who has our problems but has worked out what can be done to help. Unlike many of his countrymen he's not selling videos, he's giving away advice and assistance. Believe me it's all good stuff and should not be ignored.

    I'm anticipating bringing him over here next year when I've achieved what I can from his website. That's what you'd call putting your money where your mouth is but what else is rainy-day money for?

    Regards Ant

  • Thank you for reading and responding with all of this information. Very much appreciated. Already upon a breif look on that website I already feel more positive, very grateful thank you again :)

  • I'm sorry you have to deal with this. I also have a Mother who suffers from Ataxia. Things she used to enjoy seems to bother her now. It's like she can't deal with a lot of the outside influences. Even my children seem to bother her now (They talk too much and are too loud). Everything needs to calm, slower paced and one thing at a time.

    The dokter has prescribed her meds, I'm not sure what. Seems to help a bit. My father takes care of her. It helps a lot for her to know that someone is talking care of her and the things that need to done. Things like: groceries, house cleaning and paying the bills. She can't deal with too much at the same time. Remarkable because she used to run her own succesfull company.

    This seems to go in cycles beacause one day she can't handle anything and a week later a lot of things don't seem to bother her. Don't understand how or why but that's how it goes.

    I wish you strength and patience in dealing with this. It isn't easy and it isn't anybody's fault.

  • Thank you so much for your reply and kind words. I wish you all the same x

  • Hi Charlotte,

    I'm sorry to hear that your mother and yourself are having a difficult time. May I recommend getting in touch with Ataxia UK, if you haven't already? We have a group on Facebook which is another community from which you can feel supported and less alone. Our helpline, available from Mon-Thurs 10.30-2.30pm can offer you both a lot of advice and support, both practically and emotively (helpline@ataxia.org.uk; 0845 644 0606)

    We also have a long list of local support groups across the UK which offer a direct community of people who have ataxia, or support those who do. You can find a list of groups here, and their contact information, if you want to get in touch: ataxia.org.uk/a-list-of-bra...

    Just remember that you're not alone, and we can help you find ways to feel less so.

    All the best,

    Steph, Ataxia UK

  • Thank you for this information, I will look into everything you have mentioned

  • Hi Charlotte😊

    Somewhere else to unload, and get support 🙂 On Facebook, search 'Caregiver Support Community'. This is a closed group, so reliably confidential. Caregivers need to be able to give vent to their fears and feelings just as much as we do 🙂 The group comes under the 'umbrella' of Ben's Friends' which offers online support for many conditions including Cerebellar Ataxia. See also livingwithataxia.org for people coping with the condition.

    🙂xBeryl

  • Aww thank you for your support. Its nice to hear things from people who understand the emotional side to this. I just want the best for my mum I wish I could click my fingers and make everything ok again! But I know now to take every opportunity to open up, speak to people and not be afraid to ask for help. I got onto our local social carers today, we had visits from occupational therapy but nothing more came of it so after spending a while on the phone to a wonderful lady she realised the amount of help we need (and are not getting) so im expected a call back tomorrow to take it from there. Every little step we take in helping my mum toward a more comfortable way of living gives me a small sign of hope. Its amazing how much it can all weigh down. This forum has been amazing I cannot thank each and everyone of you enough for your time to write to me. ☺️

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