after the fall

[kd1]

Looking for advice...Till last week, I was using a walker indoors and wheelchair out, but fell(#34) midweek and sprained my ankle. But this fall was one of those horrible ones where the whole leg just gives way and I haven't had one of those before. No one knows what will happen as I heal and whether this is now the emd of shuffling round. I am instructed to rest so am only standing for transfers but can so far weight-bear there. My question is this: has any one experinced a loss like this but found they could still function for a while, or is this always a game-changer?
Kate

[Ellie]

Hi Kate.

34 falls, that's not great for your body, mentally or physically

I guess time will tell if your latest fall will end your shuffling or not but, if you continue to fall and injure yourself, you may end up quickening your progression, which is not ideal.

I am sorry you're at this crossroads, it's a horrible place to be. Your OT & Physiotherapist will likely have their opinions too re your safety and using mobility aids.

In my case, once I accepted it was unsafe for me to continue shuffling around the place and moved to using a powerchair full-time, I had much more freedom & independence, both indoors & outdoors, not to mention no more falls.

Of course it was hard to acknowledge that the time had come but it's fair to say that I didn't realise how much my fear of falling held me back from doing things...

As you can weight bear, if you did use a wheelchair, you can continue to do standing transfers (with aids/turners, if necessary)

I hope your ankle recovers quickly.

Love Ellie.

[kd1]

Thanks for this, Ellie. Always helpful to get someone else's take. Currently without an OT, which is a big loss but the MND nurse is picking up some of the slack. And I am aware that although my flat was all geared for a walker-user, some things are actually easier in a wheelchair. It's the rest that perplex me! And no carers yet...

[Deb]

Hi Kate,

I am sorry for your fall and all the repercussions, it's so scary mentally and physically and it really knocks us back.

I had a bad fall a few weeks ago and fractured my leg, whist using my Walker. Like you my leg completely gave way without any warning. As Ellie said this is a really hard stage of MND because we want to stay mobile and yet stay safe

I am now in my powerchair/ riser recliner full time although I am still healing but I do not want to risk that sort of fall again.I feel safer, more independent and I do more things even around the home . I can however still transfer sideways eg to the bed or toilet as my arms are OK ish.

On a slightly different note I had conflicting advice from the orthopaedic doctors and the MND team. The orthopaedic doctor wanted me to rest and keep my leg perfectly straight. I kept explaining that I was unlikely to walk on it much if at all but he wanted me to think long term mmm !!! . The MND physio, nurse and OT were keen to keep me moving joints and for passive physio. They were keen for me to weight bear to transfer asap, as long as it wasnt painful.

I really hope you feel better soon, Kate. Keep chasing up any mobility aids or help you need around the home to make life easier for you.

Take Care,
Love Debbie x

[Lynne K]

Hi Kate. I'm sorry about your fall. I'm not quiet at your stage yet but soon will be so watching the responses to your question. I hope that you heal quickly. Lynne

[Kayleigh]

Hi Kate,

Sorry you've had a bad fall. I think you are being very sensible by thinking ahead a bit and considering the use of your wheelchair indoors. There might be other equipment that could be provided for you and hopefully your MND nurse will be able to advise and provide anything suitable, in the absence of having an OT.

Like you, I haven't got paid carers yet. At some stage we might get Continuing Healthcare (CHC) which is fully funded by the NHS - but before then, there might be the possibility of getting some funding from the local authority towards the cost of carers (which, unlike CHC, is means tested).

If you havn't done so already, it might be worth considering a referral to your local authority for a 'needs assessment' and/or a 'home assessment' and your MND nurse might be able to do the referral (or you can self refer if you would like to). Further information is on the NHS website link provided below:-

http://https://www.nhs.uk/conditions/social-care-and-support-guide/help-from-social-services-and-charities/getting-a-needs-assessment/

I had to start using my wheelchair indoors more and more because it became the safest and most comfortable option. Although I could shuffle with a walker I found my legs would start to feel weak and tired easily and I also had episodes where one of my legs would suddenly give way without warning.

Although we might want to carry on using a walker as much as possible for as long as possible, I don't think it should be at the expense of our safety or comfort. Using a wheelchair not only cuts down the risk of falling but it also helps to preserve our energy, which can be used up very quickly if we find using a walker tiring.

MND in itself can make us feel tired more easily and so we need to be kind to ourselves by not pushing ourselves to do too much in one day. Also, I think its a good idea not to delay using whatever suitable equipment and mobility aids are available - so that, hopefully, our life can always be as safe and as comfortable as possible (although, sometimes easier said than done - because it's not always easy to come to terms with needing more help or additional equipment).

I hope your ankle gets better very soon.

Love Kayleigh x

[kd1]

Thanks, everyone. I've found the responses helpful and yes, to be safe and comfortablr has to be the priority.
But one thing i have learnt - do not have a crisis in the 'annual leave' time of year. Personnel keep disappearing!

Kare

[Barry52]

Hi Kate,

Sorry to hear that you have injuries following a fall. In answer to your original question it is not unusual to have a weakness in our limbs which may result in a fall. Safety first is important and recognising when it is time to use an aid such as a walker is wise. We sometimes try too hard to be independent and allow our pride to override our head.

Whilst it is just my opinion based on my own experience I believe that the injuries sustained following a fall actually accelerate the progression of the disease. I feel that once you have recovered from the injury you find the condition more challenging but this may be a result of losing confidence.

Best wishes,
Barry