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Reta
22nd March 2015, 21:17
Seems we have been in a little bubble and its bursting. Husband was diagnosed in Nov 13 after 12 months, prior to that he had foot drop for a year and balance issues before that. After all this time you think that it is going to be slow and not develop.
Walking had been awkward but he managed, now he can hardly stand for 5 mins, he is constantly frightened of falling when he walks ,tomorrow he goes for another orthotic brace for the other foot. He has always been very active a TV engineer but had hobbies of car mechanic and DIY, built a new home (sold it 10 years ago) could do plumbing, wiring, shift sheets of plaster and anything heavy no problem. Just doing up our bungalow with the wide doors and everything that goes with the dreaded MND. Today I have been painting all the new doors in the hall, Bill managed to take the handles off for me, but putting just one on this evening was awful, I put a seat in the right place to sit and put it on the handle. He got stressed as he couldn't stand and do it. Then stressed when he went to put the TV on as where I had moved the AV rack the eye had moved and we had no control of the TV ! He couldn't stand and couldn't bend to look and sort it out, oh the frustration. He knocked things over, if he had had the strength he would have thrown something. He ended up falling on the floor, wanting to end it all.

This is all minor to what many of you go through, how is he going to cope? How am I going to cope? I still work full time, how long am I going to be able to do this?

Sorry but beginning to get scared by what we are to expect.

Peta

Jan
22nd March 2015, 21:53
Big hugs to you and Bill Peta, i think this past week or so has woke me up too to what is happening getting more and more difficult to type now and I feel I am getting real swallow issues, thick things don't bother me much but trying to swallow saliva or even a glass of water starts me off on horrendous coughing and sneezing fits. Hopefully the new brace will help him, I was mightily impress with the on he has, good luck tomorrow xx

Trevorhb
22nd March 2015, 21:54
It is truly a dreadful disease Peta, all I can say we share your problems and please keep posting.

Terry
22nd March 2015, 22:19
Hi Peta;

I often feel like throwing things and have ended up sort of screaming and throwing a fit out of frustration. But it upsets my wife and the stress makes things so much worse for me and her, so as time has gone on I've learnt to stay calmer and try to let things go.

I'm afraid that he has to set his doing ability very low and just (it's really hard) to let things go if hard.

Sorry, love Terry

Jan
22nd March 2015, 22:32
Oh and ask him to use a walking stick, there's no shame in using it and it might prevent him breaking his hip!

Reta
22nd March 2015, 23:16
Thanks Jan, sorry to hear about the swallowing. The Orthotic brace is NHS this time, we will wait and see, the one he has already we bought privately.

Look after yourself xx

Reta
22nd March 2015, 23:30
He had been calmer for a long time after the initial shock, think the loss of strength in the hands and the fine motor side is just knocking him sideways.
Jan he is getting measured for a rollator and wheelchair


Thanks Peta

willsandco
22nd March 2015, 23:34
Reta, don't take any chances with him falling. Over the last month, I am tottering about, wobbling around and I too am frightened of toppling over. I have brought my rollator indoors and I am using it for support, which is much better. I get frustrated because I cant walk far, cant stretch, cant reach, cant pick things up off the floor, have trouble putting trousers and shoes on..............the list goes on.
Today, for the first time I went to church in the wheelchair which shocked the congregation because I always said I would fight it as long as I could. Well, this week, I have recognised my limitations! Ask an OT to come round and do a review of what adaptations you need in the house. If you haven't already done so, get referred or refer yourself to the local hospice, They are full of good advice. And, finally, if you are leaving him alone in the house, get a careline alarm in case he does fall down when he is on his own. It is scary - just got to look ahead and put things into place, I reckon. Much love Joycie

Reta
23rd March 2015, 00:32
Thanks Joycie, I think he needs to go back to the hospice they ring him monthly to see how he is. He has someone with him two days a week working on the bungalow and he picks our granddaughter 's up one day a week, he can drive better than walk. Hopefully another couple of weeks I will finish the decorating then I can setup an office in the hall with a printer, then I will work from home more. I Tell him to keep his mobile with him at all times.

Peta

Jock
23rd March 2015, 08:32
My suggestion Peta is to read up on what's coming and prepare by keeping a step ahead. As for the frustrations it's a matter of mind over matter.Hopefully with time your husband can focus on what he can do and less on what he can't do. With there being no cure it seems a pity to waste our remaining time negatively.

Night walker
23rd March 2015, 08:36
Oh Reta,
This disease sends challenges by the lorry load. It's got to be the worse thing in the world to watch your strong capable hubby lose a bit of himself to this disease. My hubby is as frustrated as yours sounds. He can barely walk, been measured for a power chair. He has had 2 leg orthotics since last July. When he first got them he could have ditched the stick but 7 months on he has to dragged his feet and uses his stick almost to pull himself along. His walking is slower then slow now and he drives ok still. The only thing I will say is because the orthotics provide such great support, the calf muscles and not used at all and my hubby' s have almost gone now, he has straight thin lower legs. He used to be a footballer had amazingly strong legs, very powerful man, he could have played professionally but was more interested in cars. Damn I could have been a wag!!!!

I still work full time, my hours are long and I travel quite a bit. I can work from home too. I am lucky I work for a brilliant company and have a very understanding director who lets me go to all hubby's appointments without using up my annual holiday. I have this week off as holiday to decorate the Hall. Gulp....
I feel like a servant some days, other days I am a mood booster, a surrogate mum, cook, cleaner, gardener, odd job person but very rarely do I feel like me. That's on hold at the moment, comforted by the memories the last 30 years have given us.
Big hugs to you Rita, you are not alone on here. There are lots of tricks the lads have used on here to make things more bearable for themselves which I have adopted for hubby. I read those too even if they are entitled MEN ONLY hahaha
Take care Sylv xx

Reta
23rd March 2015, 15:21
Thanks Jock, I have done loads of research but that happened to everyone else, not what was going to happen to Bill. I can see a daily change now, reality check.
Need to push for all the aids and help now, need to be ready.
Peta xx

willsandco
23rd March 2015, 16:06
Peta. What you have described is just what is happening to me - things seem to be deteriorating on a daily/weekly basis. I had wheelchair in the garage but it is on permanent standby. I never wanted that but I am so grateful for it now. The lounge has a rollator on standby -refuse to have a Zimmer frame cos I ain't no old lady (well, not in my head anyway!) I have a metal picker upper now to save me bending, my motorised scooter arrived three days ago. I have finally accepted things aren't going to improve. Peter is taking more and more of a carers role. But I am still driving - no problems in the car - and I absolutely love it because I am Independent! John is absolutely right - it is mind over matter and having a positive mental attitude. Keep checking in and letting us know how he is getting on - and how you are coping. Love. Joycie x

Reta
23rd March 2015, 19:33
Oh Reta,
This disease sends challenges by the lorry load. It's got to be the worse thing in the world to watch your strong capable hubby lose a bit of himself to this disease. My hubby is as frustrated as yours sounds. He can barely walk, been measured for a power chair. He has had 2 leg orthotics since last July. When he first got them he could have ditched the stick but 7 months on he has to dragged his feet and uses his stick almost to pull himself along. His walking is slower then slow now and he drives ok still. The only thing I will say is because the orthotics provide such great support, the calf muscles and not used at all and my hubby' s have almost gone now, he has straight thin lower legs. He used to be a footballer had amazingly strong legs, very powerful man, he could have played professionally but was more interested in cars. Damn I could have been a wag!!!!

I still work full time, my hours are long and I travel quite a bit. I can work from home too. I am lucky I work for a brilliant company and have a very understanding director who lets me go to all hubby's appointments without using up my annual holiday. I have this week off as holiday to decorate the Hall. Gulp....
I feel like a servant some days, other days I am a mood booster, a surrogate mum, cook, cleaner, gardener, odd job person but very rarely do I feel like me. That's on hold at the moment, comforted by the memories the last 30 years have given us.
Big hugs to you Rita, you are not alone on here. There are lots of tricks the lads have used on here to make things more bearable for themselves which I have adopted for hubby. I read those too even if they are entitled MEN ONLY hahaha
Take care Sylv xx

Yes sounds very similar to Bill, although he isn't dragging his feet quite yet. But he stands with his knees bent by alot, I thought it was his back, but he says no his legs just don't hold him up. Oh and I had a look at the MEN ONLY too lol

Reta
23rd March 2015, 20:02
Big hugs to you and Bill Peta, i think this past week or so has woke me up too to what is happening getting more and more difficult to type now and I feel I am getting real swallow issues, thick things don't bother me much but trying to swallow saliva or even a glass of water starts me off on horrendous coughing and sneezing fits. Hopefully the new brace will help him, I was mightily impress with the on he has, good luck tomorrow xx

What a waste of time Jan the brace is absolutely useless, waited a month again for the NHS, but it makes him walk worse than he did. I've just got on to our local orthotics specialist to buy another one for him, another 400+ gone and that's mates rates. all that time going to Canterbury twice for nothing.

Peta

Jan
23rd March 2015, 21:57
Flipping heck! What a waste of time, my running group has raised loads for local MND, bite the bullet Peta and put in a request for a donation towards the cost from the local branch, I know that money is raised for research but it also there to ease the burden. Big hugs winging your way x

Reta
23rd March 2015, 22:41
Thanks Jan, we have done the same with raising money, not sure it is the right thing to take money for. Chrissie has said the same but we wont. The annoying thing is the waste of money on the NHS, the item is useless, they didn't have one for Bill to try before hand, so until it turned up he had no idea. the best bit was after putting it on him she said stand up straight ! The one thing he cant do, he said if I stood up straight I would lose balance and fall over backwards.

Jan
24th March 2015, 12:32
I totally get where you are coming from Peta, Chrissie is always saying we should ask but like you we don't feel it is right to do so

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