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."

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Keep on Chooglin'

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.

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."

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.

You might just motivate someone to keep trying Snubby.I think you should do it.

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...

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RIP Shipmate

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.

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Real men love cats!

Prayer for them ?
Blessings

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TEXAS, by GOD

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.

With your attitude you might just beat this problem. My hats off to you Sir! I need a new J frame holster. I'm PM specs.

I had a cousin that was severely disabled for most of her life by arthritis,but somehow she was able to produce some beautiful artwork and calligraphy despite it.The human will can be amazing.

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.

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It's Alive !!

You got some good advice. Run with it.

Oh, Cheers.

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Dum vivo cano

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.

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Keep on Chooglin'

Sure, let me know.

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Keep on Chooglin'

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.

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Regards, Ron
USASA 1965/69

I enjoy reading your posts, your attitude is inspiring and I like seeing pics of your leather work. I agree that a positive attitude goes a long way towards improving ones situation.



Jim in Iowa

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.

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I'm with the banned ...

I think Hillbilly77 and Mydogmax nailed it on the approach most likely to be helpful.

The poor-me stuff can be wearing to be around, especially from people who feel a need to top you. I have a neighbor who, no matter what ailment someone else reported, had it worse at that very minute. I was always tempted to tell her I had prostate trouble and see what she would do with that, but never did. Now she's dying of bone cancer, so I'm very glad I held my tongue.

Point is, I couldn't really know how she felt--her or anyone else. But I can tell someone with health problems similar to mine what has worked for me. That's really all I have to offer.

You're a damn good man, Snubby. I'm sure you inspire and help a lot of people, and will continue to do so. Offer what you have--it's plenty.

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Oh well, what the hell.

This..... folks appreciate leadership by example. Outright criticizm seldom getz good results.

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Even older, even crankier....

Snub- I have more conditions than a stick can be shook at-- Bottom line, you NEVER give up-- when I had a heart attack 17 yeas ago I thought my life was over-- went through the whole thing, feeling sorry for myself etc., for a month or two-- I learned in the Marines, you DON"T QUIT, works for me, every day is a gift. I still get excited at what to some might even go unnoticed, a good photo op, time at the reloading bench, company of a good dog, or just going for a ride in the country. Hang in there.

I'll take a slightly different tack here....I'm sure most of these folks have people that coddle them and encourage them, but with kid gloves. Maybe they need a bit of "tough love". Perhaps a little more subdued that your original thoughts, but strong enough to get a spark lit in their bellies. All the while using your successes as examples.

Turn on the snubby charm you routinely grace us with and you'll find the right way to help them out. If it comes from the heart, what's the worst that can happen?

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paws for friendship

If your experience can inspire others with this horrid condition, tell them that you have staved off some of its effects.

Knowing that you can fight back and slow the progression may be news to many who suffer as you do.

I would suggest that you "keep it at the I level" that is, share what you do, how you manage things. Better to share with folks than try to tell them what THEY should do. JMHO

Snubby, you were smart to avoid the "Rascal". When I did my seven month extended stay a couple of years back, one of the doctors said I would need one, or maybe a wheelchair. The therapist came back into the room after everyone left & told me that if I got into a motorized chair, I would probably never get out of it. She also told me that if I was willing to work hard, they would get me back on my feet. And thank God, she was right!

By the way, everything is tagged up!
Thanks again!

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Lounge Lizard Extraordinaire

A comment on powered wheelchairs: Just before Mom passed, Dad started having trouble with his knees. He began using a cane to get around but still got out and worked in the yard quite a lot, something he always loved. Mom lost her 3rd battle with cancer that year, and Dad kinda gave up on stuff. Since he wasn't up and around his knees got worse. He figured a powered wheelchair like the ones he had seen on tv, and ordered one in. It let him get everywhere he wanted, and there was no motivation to get out of it. So, he didn't. Ever again. He passed away two and a half years ago, having never walked again in his life.

Please, if possible, stay out of them.

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Even older, even crankier....

To be an encourager, and I gather this is your intention, it is well to know how an individual is encouraged. My Dad was a powerful encourager for me but I do not recommend his technique for many others.

I totally agree there is far too much "poor me" attitude in our world today. I would think a simple statement " I will not let this disease/condition/situation/whatever control my life and well being and I call upon everyone to join with me in getting on with our lives and live to the fullest we can."

That is encouragement from my viewpoint.

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I am a sheep dog!
1601 (ret)

I would say the very fact that you want to encourage others and share your knowledge with them shows the kind of person you are. I applaud you and your efforts. Thank you for being a part of this forum and sharing with us.

Post what you do and how it makes you feel to accomplish your goals.Maybe it will inspire them to try a little harder to get a little better. Accentuate the positive,talking down or lecturing will surely turn many folks off or stoke their self-pity. Nick

Depends on what a person is trying to accomplish. Some people are more interested in talking about and bragging on themselves than delivering an inspiring message for others. Folks are generally perceptive and read between the lines one way or the other. I would not worry about the precise wording. Good intent will shine through regardless after a few postings.

I agree completely. This is also Sales 101.

Your attitude is likely to be a breath of fresh air around the place, and just what some people there need. But of course you've been around the innerwebs enough to know that there will always be some in the crowd that, like my father used to say, could screw up a steel ball with a rubber mallet. But you don't strike me as the type of man who lets that sort bother him.

I like the draft and think anyone that reads it should appreciate it.

If some don't. To bad, Their attitude isn't gonna change.

If it helps only one of them it's all worth it.

Rock on snubbyfan. You'll feel better for helping.

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Dum vivo cano

That's the way I felt, when the doctor mentioned getting a scooty chair my reaction was basically "screw that! I'm getting back on my own two feet on way or another."

I'm glad to hear ya got all the tags on and I'm so glad they suited your needs. You made it easy by telling me exactly what you wanted.

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Keep on Chooglin'

You have a good attitude and probably why you're doing so well. Sharing about yourself with others with like problems will help them too unless they want to wallow in self pity.
My Dad had MS and was told he'd soon be in a wheelchair for life. Dad went to some MS support groups but couldn't handle them as they were doom and gloom affairs and you'll soon be here too sort of meetings. He was determined to beat MS and did most of his life and only in later years developed a lean but even then wouldn't use a cane even. He was fortunate with his MS and attitude had a large part of it too.
He died a few years back but it wasn't MS but lung cancer that took him out.
My wife was concerned last year when I started using a cane when my back was at it's worst thinking I'd be dependent on it too. After my second surgery on it I've been able to put the cane up and now walk very well. Yes I'm limited in what I can do now but expect to live my life best as I can.

Go out kicking and screaming. If at some point you really NEED the wheelchair, get it.

I've been on some of those forums and despise them. One I was on for people taking a certain medication (made from Gila Monster venom) for diabetes it was either 'Woe is me' or people bragging that they were on some radical medication. But what REALLY killed it for me was when people kept asking to do things that are CLEARLY spelled out in the instructions NOT to do. I avoid those forum because they are useless and disgustingly based on self pity wanting somebody to whine to.

Snubby, keep putting out your positive attitude. Share it with the others on that forum let them know what is that your doing that helps you win those daily battles and keeps you going forward. Let them know it doesnt have to be doom and gloom all the time staying positive is the message so relay it.