@gailfaith
Your story to me is extremely touching, in its own way reminds me of my MD journey!

I'm unfamiliar with Myotonic Dystrophy type 2, but I know that it is a struggle just as mine & any other disease, it has its difficulty that brings its own pain. As stated, I've been in a power wheelchair for 18yrs, but I didn't just give into it, nor have I ever had PT, in fact I never let MD take anything instead I choose to give up certain abilities for another ability that made me stronger.. I was, and still am determined that, "my MD doesn't define me, I define it" & "MD doesn't have me, instead I have it"! I applaud your determination & tenacious attitude...Maintain that for it is your strength to not give in.

I continue believing that my diverticulitis will also take a permanent vacation, I praise God for your freedom of diverticulitis & strength over Myotonic Dystrophy type 2.

Question what is "DM" & "Dx"?

Hello @gailfaith, You have certainly found a lot of creative ways of dealing with y our DM. Thanks for sharing your experiences.

Hi @dbwhitted, Dx of DX usually stands for diagnosis. I like your comment that your disorder does not define you! Great attitude. Thanks for sharing that with the Mayo Connect Community/

Hi dbwhitted....Yes, Dx = diagnosis, Sx = symptom, Rx= prescription or" write for something" be it medicine or PT instructions. As far as the DM and MD2, I am a little confused myself. The first time I abbreviated my Myotonic Dystrophy type 2, I shortened it to MyDy2 or something similiar, and someone then referred to it as DM . Now I see it as MD2 which I think is the best abbreviation. My understanding is that myotonic dystrophy is a rarer form of muscular dystrophy.
I can't help but ask why you never had PT? Did you just get your powered chair when getting around was starting to get difficult? I live in a retirement community and I was watching people with walkers and rollators and their gait appeared to me (I'm not a PT!) like it was pretty good. So I got skids and wheels for a walker but after 6 weeks, I realized my gait was poorer. So I limited my use of it. The first time I went to Mayo I had my service dog and I ended up having people push me in a wheelchair from appt to appt. So when I went back this past spring, I was not planning on using a walker and intended to get pushed around again, as my dog had succumbed to a stroke and I had him put down. But my PT said to take it, so I did. The airlines bent it beyond repair so they paid for another one from the Mayo store. But for whatever reason, probably not to deteriorate, I used the walker all over Mayo this time. When I got back home, I realized my walking again had deteriorated some more so I have NOT used the walker since! I have it in the back seat of my car, just in care. If it wasn't for how my PT motivates me, I'd probably just "give in" also. We literally have a ball together. And against his wishes, I even bring him snacks and sometimes a lunch. He says I'm going to get him into trouble, but I tell him to tell whoever "they" are that it is part of my therapy. We found out early that we have MUCH in common, everything from our favorite color, to tastes, etc, Even our phone numbers are similar. Mine ends in 8222 an his in 2228. Someday I'm afraid I'm going to get them mixed up! One difference between us he smiles a lot and I don't. But It is his smile that motivate me. Shortly after I started with him, we both had a bad tooth, and not just something simple. Shortly thereafter I got a cold and he said, "if I get a cold, you're in trouble". Frequently he tells me that he wishes all his patients were as motivated as I am, but he gets all the credit for that as far as I'm concerned.
I trust your "user name" of "dbwhitted" does NOT stand for dumb-witted as you sound far from that description! I am glad to hear that your DM does not define you! I too applaud your determination to be the master of your problems. It keeps us thinking, doesn't it?

@gailfaith You asked "I can't help but ask why you never had PT? Did you just get your powered chair when getting around was starting to get difficult?"...You are correct, I forgot that in order to get the power wheelchair I had to take a PT assessment, was suppose to be 2wks but became 1wk when seeing that my wife & I was adapting as the muscle "thief" as it stole strength from me, my wife stepped in to fill that void. In fact they watched her & realized that though she was no nurse & our method was not typical, it was better than what PT 2x week could do. The best PT is knowing that fineline between doing to much, which breaks down muscles quickly! Same goes to not doing enough, which also breaks down muscles quickly! Then maintaining dedication & a positive mind, knowing that "I can do all things through Christ who strengthens me". Then when I took my first ride in PT to 'learn' how to drive the power chair, it was like I was a veteran driver! I jumped in it & took off like Dale Earnhardt Sr.

As for using it too much & relying on it instead of my abilities. As for walking, my calves weakened fast, so did my waist muscles, but my thighs were the strongest. That being said, the thighs could hold me up, but the calves couldn't keep my feet in front of me or under me, then once my gait / balance would go, my waist couldn't recover from failing. I did everything to the fullest ability, many times I carried it to far...ex. my last 2-3yrs driving, due to weak calves, I had to pick up my foot off the gas & put it on the brakes to stop! I adapted day by day, week by week, month by month, year by year...like I said MD would not take it from me, I would do it to the fullest ability & then when it was time, I'd just let it go.

My MD has definitely made me stronger, more determined, more appreciative, & more loving!

Hi dbwhitted... Sounds like you have a pretty good handle on your MD. Since my Dx at Mayo in Dec of 13, I have been in PT and I'd be lost without it. But you have heard about my great relationship with my therapist. You have your wife to motivate you, but I have no family and though you are not supposed to consider your therapist as a friend, I have fallen into that trap. But he doesn't seem to mind. I can email him with updates and questions and he responds as the spirit moves. I can't help but tell you about a book I just got, recommended by the pastor Dr. David Jeremiah. The book titled The Strength You Need, written by Robert J. Morgan, another pastor whose wife has MS. He recounts the day she asked him to hand her a bottle of an analgesic and he asked if she had a headache. She responded, no, but she needs the "extra strength" noted on the bottle !!!!!!! We can appreciate her response. Hence came the title of the book. The book is based on twelve references in the Bible based on "strength". I am starting the second chapter. It is a very encouraging book for anyone with a disability, especially those who know the Lord. Though he is apparently healthy, being a care giver does sap his own strength ! I wonder if you saw my earlier post on Connect where I give the details of "my project" here on the retirement community campus? Since mid-August (this year) I have walked 17 miles using two canes and pulling a measuring wheel tied to a cane pulled behind me. So far the furthest walk has been 0.68 mile! This makes my therapist really happy.....and that inspires me to work even harder. But as you noted, working harder is a fine line that can damage muscles. But my PT advised not to do two "long" walks two days in a row ("long" walk = 0.5 mile). But I do try to walk everyday, except if the ground is wet as I don't want the measuring wheel to get wet and rust or when it it too windy out.

Love D. Jeremiah I listen through Audible due to disability & I just added it to my wishlist.
I am fairly comfortable w my disability, but there's times of course when I have a hard time, I get sick, wife gets sick, or I just get tired of 'not doing' anything. Those times get me down, but I do good not letting others see it or hear it. You see I'm either out going (driving my chair) or fellowshipping or I'm on my laptop...those are my choices, my muscles are so weak I can't dial a phone, use a remote or tablet, write, etc. Example this week I've been sick, stomach bug, so I've been in bed a lot, now my wife's sick & it's overwhelming doing the same thing over & over...so yeah, I'm not SuperHero or nothing....I actually needed to vent that, because this week I've been bed bound 4 days...I'm tired of staring & clicking at this laptop! ...Thank you!

Enjoy the finer things in life, walking a half mile is great. I would love to go for a .5 mile walk, there's a pleasure in everything if we'll just look. I truly miss fishing & walking through the woods, when I begin meditating on that, I then begin to think "If I just had strength in my arms, physically I'd have no limits"! That's when I start thinking & acting negatively...Like I'm doing now! LOL...It happens sometimes.

I love the measuring idea determining the walking distance. My wheelchair has a mileage odometer which reads close to 1,600 miles, which I traveled in it since August 2011. On average that's around a mile a day, of course by motor power, not physical power. I've wondered sense December whether PT would profit me so far into my disease?

What hobbies do you have?

Hi @dbwhitted, I suppose the world does not really need Superheros, we just need to all be as faithful with our strengths and abilities as we can be. It sounds like you are doing what you can. (I believe that Oswald Chambers once said "God does not call us to be successful, He just calls us to be faithful.") Yes, D Jeremiah is good, I have one of his devotional books. I wish it were on Kindle, because the print is quite small. I love my Kindle because I can make the font as big as I need. I hope that you and your wife are recovering. It must be hard for you both to be ill at the same time. Do you have family/friends and a supportive faith community near you? Feel free to vent as much as you need to. Mayo Connect is a good place for that. Best wishes my friend.