Living my life

Living my life

Hi all. Just wanted to share my feelings and hope everyone is as well as they can be.

My symptoms were gradual after suffering complications following surgery but just coincidental as mine was confirmed as SCA6 hereditary Ataxia following genetic testing. My Mum's had the same problem for years but her GP diagnosed Vertigo and has been treating her as such for 10 years and seems fairly blasé even after showing him my results. So far he's sent her to a falls clinic but she never tells him the whole story as she's old school from a generation that doesn't want to make a fuss so she just believes she has Vertigo!!!

I'm 52, diagnosed 3 years ago. Fairly steady ATM but I lost my job as a care home manager for a disabled charity as they wouldn't make any more reasonable adjustments. 15 years and that was that!!

I've struggled with severe depression including two admissions to a psychiatric hospital as I can't come to terms with this, the illness has taken my life away and everything that I enjoyed. I've even struggled with my family and put them through hell and back. Heavy drinking etc.

I was lucky enough to be referred for counselling which helped immensely. He made me look at my condition differently and although I'll never accept it or come to terms with it, that was a different me and even though I'm the same person I'm different and I have to do things differently. That was then this is now.

It's like going through the grieving process and even though I still have the odd meltdown I'm managing better.

I've just been to New Orleans, Memphis and Nashville with my bestie, visiting Graceland, a paddle steamer on the Mississippi, The Grand ole Oprey amongst other things. Yes I struggled at times but I did it. I do what I can when I can and get help with things when I have to.

I'm much more relaxed about it now but will never accept or come to terms with it and this site and others helps as we're all the same and understand each other as we can vent, support and ask. It helps and my motto is

I have Ataxia it doesn't have me!!!

Route 66 next year for my silver wedding anniversary should've been on a Harley but that may prove a bit dodgy if I got a wobble on so it's a Mustang convertible instead

Life is tough but it's to be lived and by God I intend to do just that

Much love to all and take care


11 Replies

  • Hi B😊

    I saw your pics on Facebook, you had a grand ole time😉xB

  • Hi B

    It was amazing and I managed to walk round Graceland with just my stick

    I loved it xx

  • thanks for sharing.

    Yes we must do what we can and remember to enjoy ourselves. Enjoy route 66 next year 😊

    We are planning a trip to Iceland next winter. No hiking for me but can be driven about in massive 4x4s to see the geezers and waterfalls etc.

    I feel my illness is part of who I am. I def think of before and after all the time

    Alison xx

  • I like your saying '.I got Ataxia , ataxia didn't get me. I am surely using it. I read a article it said Ataxia invited itself to stay I didn't invited him.. 😊

  • Dear Bevvick1964, You're definitely an inspiration! I'm glad you're more relaxed with your ataxia, as that allows you to be more open and enjoy life! My best to you...,;o)

  • Hi, that,s the spirit, you are absolutely right, your positivity shines through. I find that a sense of humour it what gets me through, I laugh at myself everyday. I have just completed a course named 'The expert patients programme' which was a great way of meeting other people with hidden illnesses, and bounce ideas off each other. Also you realise that so many people are in more difficult positions than ourselves, and helping them, helps you. So, enjoy, live and make the most of every day. Love Ali xx

  • Inspirational not to let it rule your life. Shows the power of positive thinking and being able to adapt to situations. Enjoy your silver wedding anniversary!

  • Hi - thanks for sharing, it was very honest and brave actually. You hit the nail on the head when you compared your illness to the grieving process. This is absolutely right and I think that there is a great lack of support for addressing this.......especially if symptoms are slowly progressive. People don't realise they are then in an 'abnormal grief response' because they have not had opportunities to work through the process from anger to acceptance. Having a positive outlook and laughing often is as good as any medicine as it helps rid the body of bad chemicals and produces good ones - stay positive and enjoy the moment!!

  • Hi Bev, like the other comments your positive attitude is to be admired, before my problems arose my active life and hobby was backpacking/camping, but sadly it will be no more, I have to use a powerchair when I go out.....l use a walking stick when transfering from car to house and vice versa, and use walls and furniture for walking around indoors.

    My new powerchair gives me more freedom to get out on my own and find the quiet of places like Woodlands Park, and it also gives my wife time away from me. Hoping you enjoy Route 66.

    Don 🌺🌸😀 xx

  • Just noticed I have responded to an eleven month old post. Oppps!

  • Lol we went to Florida instead as Route 66 proved too difficult

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