Feeling fed up: So yesterday my husband tells me... - Ataxia UK

Ataxia UK
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Feeling fed up

ww-wibblywobbly
ww-wibblywobbly

So yesterday my husband tells me that I need to walk more!! This is because I had a bone density scan recently and my hips aren't as solid as they should be, but they're not oestoperousis either. (Sorry about the spelling). I had the scan as I've been taking femera as I had breast cancer five years ago and I shall stop taking that in June.

The Dr after the scan explained that you need to move for the bones to absorb the calcium and as I obviously don't walk very much, that would be a factor of weakened bones. The rest of my bones are fine - it's just my pelvis.

Then today the physiotherapist said I shouldn't think of walking as an exercise in my normal life - which I do.

I feel like none of them realise just how difficult it is to keep walking. Just the action of walking is so difficult, let alone the balance problems too! I hate walking but I'm continuing to exercise and walk as much as I can as I realise how things become very limited when you are stuck in a wheelchair full time. I do have a power assisted wheelchair which I use to go out.

I'm fed up and feel that nobody understands!

I'm sure many of you on this site do

Sorry just wanted to reach out to someone who understands.

22 Replies
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I understand totally.

I had a bad fall last year and my GP sent me for a DEXA scan. I am the same as you with some deterioration in the hips, so have been diagnosed with osteopenia.

You might find this website helpful theros.org.uk

There are useful tips for diet and exercise.

I have joined for a year and they sent me lots of useful leaflets.

I am now more aware of having a calcium rich diet but it may be too late to undo the damage.

I am not one to give in easily but can understand your frustration.

Thank you cocoa for this information. I too now have oestopenia in my hips (pelvis).

I'm seeing my GP on Tues so shall see what he says. I have been taking calcium and vitamin D tablets for about 8 years now as my GP wanted to renforcé my bones as I fall over so much.

I'm feeling much better today. Think I was having a bit of a moment!

There is a good forum for bone health, which you may find useful

healthunlocked.com/bonehealth

I have nothing from the GP but have been advised to try and manage things with a healthy lifestyle.

I have taken vitamin D for years, so I am now wondering whether there is a connection between ataxia and osteopenia/osteoporosis

I don't think there probably is a link. More likely from the menopause.

I've been taking femera, a hormone blocker after breast cancer, and that can cause weakened bones. That's why I had the bone density scan. Thankfully I can stop taking it in June before it does any more damage.

But I guess immobility plays a factor, but that must be with many disabilities

Xx

Hi

I've got ataxia SCA2 and know from reading these posts some people are a lot worse than me. I think from reading other posts one of the most important to do is keep exercising. But when you're like us walking is very hard. I use a walking stick most of the time although I can't really walk far with it whereas holding my partners hand could go further although I get tired now. I totally get where you're coming from I don't think able bodied folk understand how hard it is at times to walk. You must be thinking continuously of not loosing your balance and keep looking straight ahead and not to look anywhere but straight in front. I totally understand and know totally where you're coming from.

Take care

Louise xx

Thanks Louise,

I don't suppose really that able bodied people can understand, even if I want them to, and try to explain. Really how can the understand what it's really like!

First of all big hugs. I have sent you a message :D xx

If the worst happens and you do lose the ability to walk completely like me then a standing frame would help massively with the bones etc.

Veteran250
Veteran250
in reply to Grapes12

Dear Alison....... As a Military Veteran, I attend many functions, I prefer to use my powerchair where possible, but as usual, old time Military Establishments dont cater for disabled people, Veterans or otherwise..... hence, no ramps!

When I have to walk from the car to the function in recent months, I have taken to using two walking sticks, the old fashioned sticks with the handles curving round at the top, I find these easier to grip

I find two sticks much easier to walk with, but I still walk at a slow pace, I dont try to rush it, nor do I want to fall down..... at 76 years of age, I’ve got past feeling embarrassed falling over in front of people, they put it down to old age......they dont know what Ataxia is?

We Ataxians all get fed up with this illness, but we can do nothing but our best, and keep soldiering on as best we can...... I still go “On Parade” with fellow Military Veterans as much as possible, and will continue till I no longer can...... But I will not let Ataxia bring me down. I wish you and all Ataxians, a long and happy life in as much as it is possible to do so.

Don. 😀😘👍

Dear Don,

You are always so wonderfully positive. I try to be but as you can see I have the odd blip and have a pity party.

I'm back to my normal self now.

Thanks

Alison xx

Yes I can understand what you are going through, the frustration of trying to walk without falling over, always think if you don’t use it , you lose it.

If it’s not windy I try pushing a rollator up and down the street just to get out of the house, we live on top of a steep hill , To keep myself from going round the bend I knit , listen to audio books, must say I have a very kind husband who looks after me and does the shopping , so I’m very lucky.

So don’t give up trying to do things, however hard it is.

Take care .

Just do a little each day and build on that. Don’t set the target high to start with only do what you can do. Start with five mins one week and then six mins. Cx

Oh wibbly, I have been guilty of doing this. I got so panicky about Beth not using it and losing it that I pushed her to walk, when I now doubt that I should have. It made life so stressful for both of us. She would be turning the air blue and I'd be getting all hot and bothered. Being a carer is never the same as being the person with the condition and I don't want to minimise your situation. But, in a bid to explain us carers, I know that even when I've got it wrong my intention has often been good. Accepting when the condition has progressed is something I really struggle with. It brings such a cycle of strong emotions: fear of losing that bit of my loved one makes me determined to fight, then angry it's not working, then so gutted it's not working until the slow acceptance comes that we are in a new phase. I think this cycle is probably quite normal, but exhausting for all who go thro it, in whatever capacity. Take care of you and that man, I suspect he doesn't mean to be harsh, he's just maybe not got to the accepting bit you have and that's only because he's scared and worried he could've/ should've done more. It's just all a steep learning curve isn't it? Take care x

Hi, thanks it's interesting to hear things from the carer's point of view.

I know they only want the best for me, and that they care deeply, especially my husband.

And no they can't feel what it's like. Thank goodness!

I'm feeling much better today. I think I'm entering into another phase, which is always difficult. So I guess I'm having a few pity parties. My hubby has been really helpful today. I waited in the car while he popped into a shop this morning and came back to find me crying. Which I did a lot yesterday, which he didn't know.

It's frightening each time things get worse. And because of fatigue I don't think I can work any harder than I do. I think I work really hard. If I work any harder then I won't be able to do anything else - socialise or anything!

Never mind. We'll see what ataxia will bring me this time! ;)

When I was in the hospital there were several women with broken pelvises. They had been taking ‘Allendronic Acid’ like me against ‘brittle bones’ It has not helped any of us. None of the others had any movement disorder, were widows living alone and took care of themselves, walking etc. so presumably moved a lot. It did not stop any breakage so I do not think walking a lot is the answer.

Big hugs wibbleywobbly. My thoughts are it's OK all the professionals telling us all to do this and that, but your body is the one telling you can or cant. They can advise and so can your hubby, but it's you what us important. Have you thought of anything like a sit down exercise machine small which you use like bike. I have one it's great to exercise my legs cost me £10.

Have a look around for different ideas.

My hubby is my carer but a good hug and cuddle can be good for both of you.

Take good care I Hope your feeling somewhat better. Xx

Thanks Pacitto,

I'm feeling much more positive again today. I don't have any exercise machines at home, but I do go to a physiotherapist twice a week and spend a total of 4 hours per week exercising there.

After trying to do extra exercises at home this summer as well as the physiotherapist sessions, I have realised that it's too much at home as well. I'm just too exhausted.

The physiotherapist sessions are good.

I have realised that I'm working twice as hard as I used to just to be the same. In fact things are progressing, unfortunately!

we all here to listen to each others positives, negatives etc & there for each other

Dear Ww-wibblywobbly, I understand EXACTLY were you're coming from, as I've had ataxia 20+ years! It's progressed, slowly but surely! I have Osteopenia and have fallen A LOT over the years. The only things I've fractured are my pelvis and two ribs! Thankfully, I feel like my bones must be really hard, as I've taken so many falls. I've had 8 staples in my head and most recently, 10 stitches in my elbow, but no broken bones. I know how hard you have to work just to walk, as no one would know unless they had ataxia, You're husband just cares about you, as does mine, but there's no way they can possibly realize how hard we have to work! Also, when I fell and cut my elbow I was using my rollator at the time...,ha! It fell over and I went down with it!You're NOT ALONE in your ataxia journey. I sincerely hope that brings you some comfort! My best to you..., ;o)

Dear Alison

First of all thank you for admitting to your need for moments of self pity. I too get these and rather than ‘pulling myself together’ let the pity have it’s say. Then I can get back to being horribly positive again!

When I get out of a chair, at home or in public (Costa) I do pelvic rotations to loosen up my hips and engage my brain so I don’t automatically set off, a very dangerous thing to do, as my auto system will trip me up.

It’s particularly tiring knowing that ataxia only gets worse, despite our attempts to combat it. I ought to spend more time working on my speech, and in discussion with my wife have decided to use a warm up phrase of no value to get my mouth moving before I launch into a speech which has to be repeated! The phrase is ‘Mary had a little lamb’, if I’m feeling mischievous I might add a line or two from the politically incorrect or downright smutty versions! If I’m up to it, and remember, adding inner music to this helps make my voice more lyrical!

Glad to hear you have regathered your equanimity.

Nigel xx

Check your local pool for accessible pools that offer shallow water aquafit. It gives you the low impact exercise your body needs while being in shallow water so you don’t have to worry so much about balance.

Hi wibbly-wobbly.

Every sympathy. I'm sure my condition is not as bad as yours, but who's comparing.., but like you I find standing and walking rather painful not to mention lose my balance numerous times every day.

It's difficult to get people to understand so I stopped talking about it. Otherwise, in my experience of living in Sheltered Housing, is that you can end up spending every conversation discussing your collective ailments.

The only way I can be relatively pain free is to avoid standing or walking as much as possible, so of course my body has stiffened up. The physio exercises I do each morning do help a bit, but I couldn't make it to the bathroom without also rubbing pain relief gel where needed. This lasts long enough to get ready in the morning, although by the time I've made the coffee I'm ready to collapse in my comfy armchair and listen to ClassicFM.

Know how you feel

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