Lead Legs

[Jacqui-A]

Hi All,

My legs feel like lead today, very heavy and aching at the thighs even when sat. I have felt the progress of this decease the last couple of days. I am wobbling more.

I nearly fell indoors yesterday, but managed to save myself.

I like to use my legs and walk as much as possible but I do struggle with the return journey.

When is the time right to use a wheelchair? I have a mobility scooter as well as a rollator but only use the scooter really to give the dogs a walk and don’t use the rollator.

I suffer from Cerebella Atrophy and I’m due for some treatment shortly, hopefully it will slow things down (IVIg).

Stay safe and take care. Jacqui

[cocoa]

Have you been referred to neuro physio?

They should be able to give you exercises to improve your core strength. It is always a case of not overdoing it though.

My own personal experience is that no two days are the same. If I have done too much one day, I will pay the price the following day or two.

The main thing is to stay safe and it is best to keep active as long as possible.

[Jacqui-A in reply to cocoa]

Hi cocoa

Yes I do have a neuro physio, she came the other day with a list of exercises but I’m unable to do them as my kitchen has been ripped out so she is coming back in a few weeks.

You mentioned doing too much, maybe that’s the problem as I mentioned I don’t have a kitchen at the moment and the plasterers came yesterday.

I certainly don’t want to be resigned to a wheelchair and want to keep active as long as possible. Jacqui

[Grapes12]

Hi Jacqui,

My legs have given up I have kept fighting for as long as I could as I did not want to end up in a wheelchair full time. Sadly my body has decided its time. I can still stand but very wobbly so going to try and do as much as I can in standing to maintain this and make transfers easier. I am very sad that I have lost the ability but I have so many bruises etc from falls that I think its the right time as it was becoming dangerous. It is amazing how much more I can do in my chair. But it has hit my parents hard and they do not agree with me! I like to think this will only be temporary but we will see what happens I have contacted my Physio and will hopefully hear from them next week.

I really hope the treatment helps. Try and do little and often. I also do a lot of exercises to try and keep my core as strong as possible and my legs and arms as strong as I can. Sorry I cannot be more help. Good Luck

[Jacqui-A in reply to Grapes12]

Hi Grapes12, so sorry to hear of your struggle and your many bruises. I think unless you live with this dreadful disease then nobody fully understands.

Thank you for the good wishes It may slow things down I hope so.

I still have strength in my arms and legs but my balance when standing is not good, my speech goes at times usually when I’m tired. I think I could cope with a wheelchair but not being able to talk is frightening.

Take care. Jacqui

[Edwardparsons]

JACKIE, welcome to the club! Although walking will become more and more difficult, you can carry on swimming even using disabled club time towards the end of your mobility. Let's hope that will be a long time coming!

[Jacqui-A in reply to Edwardparsons]

Edward, Thank you I had forgotten all about swimming. Take care, Jacqui