Progression

[Pinkelle]

I was told by my consultant that I have the atrophy type of mnd. I just feel things are going too fast or maybe not? This time last year I could walk with a walker. Since December I've been in a chair due to breaking my leg. My mnd nurse said it would be safer. I can now no longer walk at all apart from transfer. That is now getting very difficult. It takes me ages as it doesn't help I have two dropped feet. So of course trying to get from chair to toilet is very frustrating. Feeling a bit low as now I'm having problems with my chest. Feel I can't take a deep breath. I had a nippy but it didn't really make a difference and they are going to review in 3months.(july) they only gave me one as I was getting headaches. I was also given a trial of the cough assist on Friday as my cough is very feeble. Now have it at home to get me used to it. I feel like as soon as I get my head round one symptom, another one starts!!

[Terry]

Hi Pink;

Sorry to hear you're feeling down. I haven't been able to take deep breaths to order for 5 or so years but I can do it sometimes and I also have a reasonable cough. I hope you can do similar. I have similar troubles moving since I damaged my rib but I hope that in a week I will be up and running around.

One little thing knocks on to affect most things with this disease.

Hugs Terry

[Pinkelle]

Sorry about your rib Terry. I've got speech therapist coming on Tuesday to check my swallow. Don't seem to have problems with that. But every now and again I get a tickle in throat but can't seem to cough strong enough.

[JAY TEE]

Pinkelle, you never know how fast MND’s going to be. I was formally diagnosed 4yrs ago two weeks after my 65th birthday. Then I was walking ok with stick I did have pain in my left hip and assumed to long playing rugby and talking ok. I now cannot walk and talk. The local councils given me good wheelchair. They have also installed and ceiling hoist. Luckily not using it yet we have sit to stand hoist and I can still pull myself around on the bed to be lifted up by my carer/wife, we have bungalow so easy to take me on commode chair to the toilet. My MND down my left side my breathing is ok and I never ever had a drag on a fag. My coughing good and swallowing still ok, did have PEG fitted year ago but not using it yet.
Best wishes John

[Barry52]

Hi Pink,

Sorry to hear about your latest problem so I do hope you get some mobility back. I know how it sets you back when you break some bones and you never seem to get back to where you started. I hope you get the breathing issues under control.

Don’t you just hate it when actors say “break a leg”.

Barry x

[Pinkelle]

Thanks guys, just wondered how people get on when they can no longer transfer? Also when your lungs are starting to play up is it normal to feel nauseous when you wake up?

[Ellie]

Hi Pink,

Progression can come in waves, so people often get a break unless they have an infection, illness, injury, or lose weight etc. Hopefully your progression will settle down when you've fully recovered from your trauma.

I don't really know what you mean by "lungs are starting to play up" - do you think you might have a lung infection or is it because you feel you can't give a decent cough and feel lungs are congested? Maybe the thick secretions are being swallowed and causing nausea? Did you get a suction machine to clear out what the cough assist brings up, or can you do that yourself?

If you can no longer safely transfer, depending on your weight bearing ability, you can be transferred by using a patient turner, standing hoist or full hoist. The full hoist can be a mobile one and does not have to involve ceiling tracks if you don't want them.

Are you still getting morning headaches?

Hope the swallow assessment goes well.

Love Ellie.

[Terry]

Hi Pink;

I have no first hand experience of either but you would need hoisting to transfer.

Sorry, I did not read your first post so well.

Were your headaches in the early morning mostly?

Have you had over night monitors and breathing tests?

I have never felt sick in the morning but often have trouble with a build up of mucus when I start to move leaving me coughing for a minute or two.

You can get a manual breathing bag that would help you to fill your lungs perhaps helping clearing those areas a bit.

Love Terry

[Pinkelle]

Hi Ellie, when I mean my lungs are playing up I mean I can't seem to get a deep breath and if I try to cough it is really feeble.
Terry, I've had the overnight monitoring (couple of months ago) the levels were good. That's why I stopped using the nippy overnight as I felt no benefit from it. (on their recommendation) It's only been the last week I've been getting these problems. I'm not congested. They gave me a cough assist machine on Friday though as they though it will help me.

[Ellie]

If the ability to take in a deep breath came on suddenly, you should get your lungs checked by GP to rule out an infection - though I'd have thought your lungs were checked before you were given the cough assist machine?

If it's not your lungs, it does mean there's weakness in your diaphragm muscle - the main breathing muscle. The cough assist will help you.

It doesn't have to follow that because your overnight Sats numbers are good, you're expelling CO2 effectively during sleep. Your Sats can be good, but you can still wake with the tell tale headache.

At least you're being reassessed next month. Did you do a SNIP/Sniff test on Friday before they gave you the cough assist, or was it due to your weak cough?