I could use some advice on this

snubbyfan

snubbyfan

Member
Silver Supporter
Joined
Jul 11, 2012
Messages
29,356
Reaction score
84,158
Location
WVa East Panhandle
As many here know, I have a degenerative peripheral motor nerve condition called Multifocal Motor Neuropathy. It's rare, affects 1 in 100,000 people(lucky me) but there are enough that I've found an online forum.
I've found out that there are some that have had the condition for over 20 years and the degeneration hasn't been too extreme in that time so I may not get too much worse.
MMN effects the peripheral motor nerves, making normal everyday things a chore. Generally it affects one side more than the other. In my case, my right side. I've worked hard reteaching myself to walk using the muscles that still work and exercising with resistance training, water aerobics and riding a stationary bicycle. This summer I plan on hiking the area mountain ridges. After examining me my neurologist said that I should be in an electric wheelchair by now. I told him,"that's an interesting thing" and walked out. I've also found that leatherwork is excellent therapy for my hands.
My life has most definitely changed but I feel my quality of life has not degenerated, rather I appreciate things more. My wife encourages and applauds my little "personal triumphs," like I managed to open a can of green beans all by myself with a hand operated can opener yesterday and today I opened my own beer.

Here's what I'm gettin' at. I haven't posted on the MMN forum much. There's too much "woe is me" and "Aw, poor baby" for me. People keep posting on how they're fatigued all the time and short of breath.
Would it be too rude of me to post something like,
"that's because you're just sitting around feeling sorry for yourself, you need to exercise. Get up off your lazy butt and do something."
 
Register to hide this ad
Well that's a tough call, because diseases affect different people differently. It is important for them to hear what works for you, since you are in the same boat, though.

I guess I would state it a little differently, but I think the core message is good.
 
snubbyfan said:
Would it be too rude of me to post something like,
"that's because you're just sitting around feeling sorry for yourself, you need to exercise. Get up off your lazy butt and do something."
Click to expand...

I am a member of a 12-Step program.

Generally, a message like that is better-received and more constructive if delivered in a first person context.

Such as:

"I was just sitting around feeling sorry for myself...
I had to get up off my lazy butt and do something."

That type of delivery won't (shouldn't) be considered rude.
And if it ruffles some feathers, a guy told me once "If it pissed you off, you probably needed to hear it." ;)
 
Last edited:
Yes, too rude. You may have the same disease but you ain't wearing their skivvies. You never know what else they have on their plates or how long they've dealt with this. I'm betting on you to find a more positive way to encourage them. An 80 year old sick widow should not be treated like a 20 year old Marine.
 
That's tuff Snubby. BUT. I feel like you just gave us some really good advice. Your positive outlook, great attitude and refusal to give in is a good example for all of us, on how one should live life. You should pass that on...
 
snubbyfan said:
Here's what I'm gettin' at. I haven't posted on the MMN forum much. There's too much "woe is me" and "Aw, poor baby" for me. People keep posting on how they're fatigued all the time and short of breath.
Would it be too rude of me to post something like,
"that's because you're just sitting around feeling sorry for yourself, you need to exercise. Get up off your lazy butt and do something."
Click to expand...

Ask yourself how receptive you are to being lectured. It's been my experience that people will find their own motivation. Browbeating someone online who's depressed will probably only compound the problem. On the other hand, sharing your life's positive experiences may just strike the chord that will convince them that taking that bike ride might not be such a bad idea after all. I am posting here because it keeps me off the cancer forums. But I like living in denial. ;)
 
People are like puppies. Some respond to getting rapped on the nose with a rolled up paper, others to having their belly scratched. What they need depends on how they got to this point. What they need tomorrow might be different.
 
I would never publicly minimize someone else's pain. The comment may be justified and even appropriate but generally speaking folks on message board don't really know each other and a comment like that could be considered inflamatory or even down right offensive. I'd just bite my tongue and let it slide.
 
I'm not aware of the condition you have but I do know people with other debilitating diseases for which there is no cure. I admire most of these people for doing what needs to be done to improve their condition. You seem very motivated to do what helps you and improves your quality of life. I would never make light of a situation such as yours but I have to say, as long as you can keep opening those beer bottles, all is not lost.
 
Learned something many years ago.
Feel, Felt, Found.
I know how you feel. I've felt that way before. Here's what I've found works for me.
You're relating to them and offering advice on what works for you. Will it motivate them? Hard to say. At least you get your point across in a gentle way. BTW. I like your approach to your health issue. Exactly the way I handle mine.
 
Last edited:
Good advice, I knew you guys'd be upfront and honest.
I don't like to use the word disease but rather condition. If I say disease people back off like I'm a leper or something.

How about something like.
When I first came down with my condition, it was tempting to just sit around feeling sorry for myself.
However, being one to never give up on a challenge, I decided to develop an exercise plan to maintain my general health, reduce atrophy and improve my mobility.
I've found that regular aerobic activity along with resistance training has improved my ability to walk unaided and has improved my overall health.
I have a stationary bike in my livingroom that I ride to help with leg strength and keeping myself healthy.
I have drop foot on my right leg and weakness in my left hip flexor. My neurologist is willing to help me get one of those scooty chairs but I want to stay on my own two feet. I knew that I couldn't walk using the affected muscles so I spent a large part of last summer relearning to walk using the muscles that still worked. I don't use any special supports, just light sturdy 6" hiking boots with good ankle support.
I live near a resort that has an indoor aquatics center with lifecycles, resistance training equipment, an indoor pool, sauna and hot tubs. Plus they have affordable yearly memberships.
They also have water aerobics 5 days a week and hiking trails ranging from strenuous to handicapped accessible. At first it felt odd hopping around in a swimming pool with a bunch of biddies but it's a great way to get caught up on the local gossip. My wife goes with me when her work schedule allows and she's benifited from the exercise. I'm lookin' forward to strappin' on my boots and hitting the trails this summer.
 
Snubby, I have had four heart attacks, I have emphysema (my own damned fault) and peripheral neuropathy to the point that I can barely feel my feet when walking. My wife says I walk like Clyde the orangutan. Except for a short while after the fourth heart attack I've kept my chin up. Exercize is pretty much out of the question but I get out as much as I can. My wife has absolutely been a positive force. But I can understand how some people kind of give up. It ain't easy.
 
Snub ... Your proactivity and positive outlook will be a blessing to some, and fall on deaf ears to others. If you can inspire a single person on that forum with your words, then you've done right. The heck with the ones who tune you out.
 
You must log in or register to reply here.

Similar threads

snubbyfan
New Pedal Assist Bicycle
2
Replies
25
Views
1K
ladder13
L
snubbyfan
February is Multifocal Motor Neuropathy Awareness Month
Replies
4
Views
315
CAJUNLAWYER
CAJUNLAWYER
SLT223
There's not a single new car I would buy at this point
5 6 7
Replies
120
Views
5K
GypsmJim
GypsmJim
chief38
The Cow skunked me this evening - because I was lazy!
2
Replies
23
Views
1K
cowboy94916
C
Austinpaulster
How Do You Use Your Revolver(s)? Favorite Things?
2 3
Replies
58
Views
3K
Rocketmedic40
R

Latest posts

Back
Top