Hello everyone,
I'm writing an article for the Ataxia Magazine about adjusting to lockdown and having ataxia. If you're happy to contribute to this, please just comment what you've been doing, how you've been adjusting and any tips for others. Alternatively you can email me communications@ataxia.org.uk
Thanks guys!
Leanna
Nothing has changed for me because I cannot walk anyway, also long before this pandemic and my children live far away, in other countries, so hardly ever came. My husband goes food shopping once a week, like before but now he wears a face-mask and gloves. That is the only difference.
Hello Klazien,
I've spoken to some other people who say similarly that nothing has changed for them too, compared to others who feel like their life has completely changed. Thank you for sharing.
Kind regards,
Leanna
I'm doing fine, thanks for asking! My husband is working from home right now and doesn't know when he'll be able to go back to his office. I really ENJOY having him home. He goes to the grocery store and does other errands, same as before. The only difference is he sports a mask now...,ha! I occasionally go for a drive with him to pick-up a takeout meal, as that's my entertainment these days! I was gong to physical therapy appointments weekly, but that ended due to COVID-19. Just trying to keep doing various exercises for strength and balance at home these days. ;o)
Hello February,
Thank you for sharing - glad that you are well.
Takeaway is always entertaining, so at least we have those still!
Kind regards,
Leanna
OK I can just you my version. My visitors and visiting have stopped - hair cuts, girl who does my nail cutting and eyebrow plucking, speech therapy, cleaner, neuro-physio and gardener.
Unfortunately I have been quite poorly (2 months ) - bad cough and feeling sick. I am very lucky and my wonderful husband has been talking lots to our great GP and after 3 lots antibiotics and reflux drugs, finally getting there.
My great husband does all my caring - so lucky to have him. His life has changed a lot - always at home with me. Works from home with many Skype calls, no golf or rugby. Organises all my shopping, cooking and washing (me and my clothes/bedding etc!). We have a Waitrose nearby and eventually got on their priority list for deliveries as Extremely Vulnerable (we are regulars with them anyway).
So lucky - need vaccine x
Hi Litty,
Thank you for sharing!
I'm sorry that you've been ill but hope you're on the mend!
Kind regards,
Leanna
Thanks for doing this Leanna. Without wishing to negate the many hardships people aware suffering in lockdown, there have been some tangible benefits to our family. I too love having my husband working from home all day. Homeschooling has turned out to be a real blessing for my children, and we all get to eat lunch together every day. Doesn’t mean I don’t also tear my hair out with us all on top of each other all the time! I’m very lucky as my ataxia doesn’t affect me nearly as much as some on here, by and large I can get out and about as I need to. But... reduced social engagements have highlighted how tired I was getting with things others take in their stride, and this self awareness is valuable. I’ve definitely has less ‘clumsy’ injuries. I don’t neglect my daily stretches because I’m not trying to squish everything into the evenings after a manic day. I can get out for a walk with my poles every day because I can leave the kids with their Dad, this simple thing has made a huge difference to my physical and mental health. I’ve had to seek medical help for both my kids during lockdown and each time we’ve managed with phone calls and photos to avoid a face to face appointment.
Don’t really like going on about myself, but you’re doing a good thing by writing about this so I hope my experience is of some help!
Hello MaryRH,
Thank you for your response and sharing with us.
It's lovely to hear the lockdown has brought some positives for you and your family - I think it's made people realise how much time you don't usually get to spend with your close ones!
Your experience is definitely helpful and interesting to share with others!
Kind regards,
Leanna
In many ways lockdown has not been too bad for me because I was a fairly solitary person anyway so all the Zoom and FaceTime contact has been good! I have enjoyed more ‘contact’ from my children and friends too, professionals have been more available via phone.
But, will it ever change? There’s no substitute for human contact really. Everyone needs a public life if only to face up to risks and fears!
It has been easy to mix age (I’m 71), Ataxia and Covid19 lockdown when looking at symptoms!
The Lockdown has certainly highlighted the move from independence to dependence for me.
Judy
Hello Judy,
You have highlighted some interesting points, so thank you, and for sharing your story!
Kind regards,
Leanna
Nothing much has changed for me practically except most medical consultations (GP, Consultant, Physio, SLT etc) have been on line. My adult children seem to have become closer with a cause in common! I am mostly isolated as I live alone. Most support services eg SS, are not available just now, and I have had to do a lot of ‘badgering’ to get what I need eg food! Most people seem not to have heard of Ataxia and so do not always make the correct allowances. Likewise, policies are not always suitable for my needs, or make the wrong assumptions. Getting prescriptions has not been easy. Public Transport has been out of the question. It has made me realise how dependant I have become.
How do you know what type you are??
How fast does Ataxia normally progress?
Have you joined an Ataxia UK branch or a support group in your area?If there isn't one would you like to help me set one up?
how do you get tested for Ataxia?
Thank you. 
