Anything out of the ordinary?

[Steve100]

Hi Caroline

My Mothers symptoms are on right and left, she can't hold her weight on her legs and her arms are extremely bad too.

She is reluctant to see anyone else at the moment and panics a little when anyone brings it up.

How are you? Hope you're well

Steve

 

[olly]

hi

:-D im not too good at the moment, still waiting for appointment for clinic. its probably best to leave it a bit, till at least she feels ready but it will benefit her to go as soon as shes able to cope.
best wishes to you and your mum
caroline

 

[Steve100]

Sorry to hear you're not doing so well. Hope you feel better soon . Let me know how it goes.

All the best to you and yours

Steve

 

[olly]

hi steve

sorry about short reply earlier,im not doing too well at the moment and got alot on my mind. i thought about what you said about your mum,she has just got a terminal diagnosed and will panic and may be in denial but letting her know that you are there to talk to when shes ready is the best thing you can do for now.im not in denial anymore but my son and family are. i dont tell them much about whats going on, when i do they just clam up and pretend everythings ok so i keep it all to myself .how old is your mum?.i became ill at 32,i had a job i loved,full active life always fit and healthy. first few yrs i went down hill fast then stabilized a bit a few yrs then 14 mths ago i started to deteriorate again,im now 40 limited mobility,speach and especially swallowing/respitory is getting worse.
i think the best support to give is emotional over practical, doing practical things does help but emotional support is the most important. have you told her about forum?
reading about people going through the same as she is could help, if shes not ready just mention little points about people here and what they say to get her interested.
this site is a lifeline to all who suffer mnd and gives us a place to voice/vent /pour out our concerns,your mum may find its easier to talk to people on here. im here to talk to when shes ready.
best wishes to you and family
caroline

 

[Steve100]

Hi Caroline

No need to apologise, you're one of the only ones trying to help, so anything is appreciated

I am sorry to hear of your history with this disease, and that you're going through a difficult patch. Its so cruel. I hope it settles down soon. My Mother is 59, and has had a rapid decline in just a year (diagnosed in sept 07) so she hasn't really had time to come to terms with it, which of course is understandable. She doesn't like to be reminded at all, and just wants it to be over I think. I think she accepted it before anyone else. What puzzles me is that she has very little atrophy (except in her hands), her muscles just look like they have become less toned and 'flabby' , which could just be through lack of use. Other than anomalies like that, and the speed, then she perhaps she would be a textbook case. I know everyone progresses differently so maybe I'm kidding myself.

Thanks for helping me out.

Keep in touch, you can always PM me if you'd like

All the best.

Steve

 

[olly]

my muscles are the same.ive progressed slowly over 8yrs in the begining i had just umn signs/symptoms but then developed lmn involvement. my reflexes in legs were once hyper but have become less active despite still having spasms.ive also developed hypotonicity/fladdicity this is a lmn sign/symptom it means the muscle has become floppy/loss of muscle tone/loss of contraction/paralysis, this is caused by lmn lesions maybe this is what your mum has.i have limb girdle muscle weakness also.
the only lmn symptom i dont have is atrophy, only weight loss. doing research ive found that there are a number of forms of als,that is why there are people who dont fit the text book case. after yrs of tests ruling everything out and following my progress my neuro dropped bomb of it being a mnd in oct07,but wont say pls/als. ive stuck with him for 7yrs and now realise i wasted all that time on a incompitent moron.lol
but now doc refered me to mnd clinic so hopefully get emg and a definate diagnosed.
all the best to you and family
caroline:-D

 

[Steve100]

I know what you mean , My neuro and yours seem to be peas in a pod . I hope that your appointment goes well and you finally get some answers.

It looks like my Mother has some similar symptoms to you, hopefully you will both slow down in progression soon.

Best Wishes to You and Yours

Steve

 

[olly]

hi steve

:-Djust wanted to say hi and ask how your mum is doing i hope shes not too bad.
im a bit better today but had to increase baclofen,still no appointment yet for mnd clinic but its only been 3-4wks so you know what nhs is like usually about 6wks to wait.
i hope everything is ok with you and your mum
bestwishes to you all
caroline

 

[Steve100]

Hi Caroline

Glad to hear you're feeling better, but sorry to hear about your wait. When my Mother was first diagnosed we had to wait 3 extra weeks for a scan because the doctor hadn't opened the letter he was sent:?, so make sure you harass them a little bit, keep it moving forward.

My Mother's arms and hands are a bit worse, more so even than just a week or two back, but her breathing seems ok, so thats something.

All the best to you and yours, and keep in touch

Steve