Looking for hope

[CCINJERSEY]

Hello All,

I am new to this site. My closest friend was just diagnosed with MND. I am still coming to grips with this and having a very hard time. Sometimes I think she is doing better then me! I have been reading about this illness and trying to educate myself about it as much as possible. I never even heard the words Motor Neuron until her doctor first discussed it. She called me up crying unconsolable and told me she was dying, right after the doctor said Motor Neuron, but the doctor never said that she was dying, she just was extremely distraught. We have been in a state of fear, confusion and uncertainty since then. Her doctor sent her to a top specialist in this disease in NYC. This doctor did tests and bloodwork and confirmed MND. At this point in time she has weakness in her leg a some balance issues, she fell 3 times. The doctor said 'we prepare for the worst and hope for the best'. To be honest I am so very confused. I have been reading so much spoke to a support group counselor and still don't feel I understand enough. I guess that is what has led me here. What confuses me the most is life expectancy with this illness, some people say 14 months, others say 2 years, then some people say they been living with for 8, 10, 12 years! I would appreciate any and all help and info you can provide. Thank you hope to hear from you soon.
CC

 

[Tokahfang]

It's hard to know how to reply without knowing more about your friend's diagnosis - is it PLS, ALS, or another MND?

Without knowing more, it's hard to tell you what to hope for exactly, but I can say that there is life with illness, life with disability, and it can be worth living. It's harder than the usual road, but it can also be more rewarding, as it concentrates your focus on what really matters. My best suggestion would be that you help your friend live life abundantly, go out and do everything you've been putting off. You'll be happy you did whether she lives 1, 5, 10, or 100 years.

 

[CCINJERSEY]

Hi Beky

Wow what a wonderful answer! and your so right! It's all so frustrating right now and the uncertainty of it all is making me nuts. Trying to wrap my mind around it. Thank you for helping me put this in prospective. Great advice and in my heart I know this, because tomorrow is not promised to anyone of us.

Wishing you all the best
CC

 

[notme]

CC,

not all things are fatal. Is it AL?

There are many things that come into play. There are clinical trials all the time. Some choose, when the time comes, to use a ventilator. Others choose bipap for breathing.

Most that succumb from ALS do so due to breathing failure, thus the vent. We've had members here who've survived years and years. Some have passed from things OTHER than the ALS.

Enjoy today, and ever day, to it's fullest.vif in fact your friend does have ALS, there is a ton of support to be found here in this forum for you and for your friend.

One of the saddest things that happens to those with a terminal condition is their friends pull away from them...at a time when they need their friends the most.

You're obviously a good friend or you wouldn't be here at all, which is great.

Hope you find comfort and peace.

Edited to add: Falls are a huge risk with MND. they are to be prevented at all costs. She will likely need either braces or to begin using a walker or cane for support. Usually in ALS, falls are caused by foot drop. There is a brace called an AFO that helps with it.

Also she can contact the ALS association. They will help as well. Most will even help by donating equipment she may need down the road.

Tell her about the site. Folks here will help however we can.

 

[CCINJERSEY]

Hi Notme

Thanks for reply. ALS/PLS ? who knows doctor not confirming either one, so frustrating and confusing. He said definately MND. The EMG showed upper motor neuron damage and a little bit in lower motor neurons. She first started feeling symptoms in April and since then she just has weakness in one leg. Is it a good sign that in 5 months that is her only symptom? Can this illness just be limited to her leg for many years?

That is heartbreaking to hear that friends pull away. I can't imagine how devastating that would be to her and myself. I love her and always will be at her side, at least I know that ALS/PLS can never take that from her.

Thank you for all the encouraging words, very appreciated. Maybe one day she can come here herself, but at this point in time she is to terrifed to even google the words MND. Understandable. Your so right, every day should be enjoyed and lived to the fullest, that goes for every one of us, not just those suffering from this God awful illness.

Wishin you the very best!
CC

 

[Tokahfang]

Basically, there are a few pure "named" MND's: ALS, PLS, PMA, PBP, etc. But not everything that makes a progressive motor neuron problem can be diagnosed as one of those things. They have criteria for diagnosing. So it's not so much that the doctor is being evasive, it's just how the system works. If it doesn't end up in a classical pattern, she could end up in the "other MND" bucket for a very long time.

The good news about "other MND" is it can be mild, the bad news is it's hard to have a prognosis. You just sort of have to take it as it comes, day by day, month by month, year by year. Don't assume the worst, but make sure you do a lot of fun stuff in case it is the worst. If you're going to be in her life, settle in for the long haul.

 

[panguinjen]

Hi CC,
Welcome! Sorry to hear about your friend....as every one has said there is no time line, but don't put off doing what you want and need to do for a "better" time... You're a good friend, you'll all learn what matters most to you... Keep us posted!

Jen

 

[CCINJERSEY]

Hi All,

Thanks for all the great replys. So Becky I am now hoping for the 'other MND' bucket!lol great advice from everyone! much appreciated. Will keep you updated.
CC