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Picture of Pocatello Jim
Location: Pocatello, ID
Registered: 05-24-2008
Posts: 109
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I started using your new exercise program this past Monday. I am doing only the daily exercises right now and complete them in about 10 minutes (so you know the amount of reps I can do are very few).

My schedule for now is Monday & Tuesday, Wednesday break, Thursday & Friday, Weekend break.

Because I am just starting, I am still very weak, but the benefit for me right now is, "I am doing something!" So often, I feel like a helpless victim to SBMA. But with the exercise program, I have a sense of control and I love that feeling.

Thanks Bruce.


Pocatello Jim
Picture of Bruce
Registered: 09-28-2005
Posts: 654
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Jim, congratulations! I think it is great you are trying something new. As you know, it has worked for me. Take a look at today's blog. It is about exercise and endorphins .

Let me know how things are going for you. If you have any questions, I will try to find the answers also.

Good Luck!

P.S.
The key to any exercise program for those of us living with KD is to use our head ... exercise smartly and do no harm.
Picture of Dave Y
Location: Lebanon, Ohio
Registered: 09-24-2009
Posts: 20
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Bruce

I could not agree more with your comment on using your head first. It has been almost one year since I started following the exercise guides with hands-on guidance from both a physical and speech therapist.

My current routine is to start most weekday mornings with the about 10 minutes of mouth and throat exercises and then 15 minutes working on stability (legs) and arms. I have found it better to vary the exercises day to day instead of trying to add more.

Over this year I have learned the hard way that it is more important to be slow and deliberate and not to worry about how many times I do an exercise.

Jim -- Keep up the good (smart) fight. I agree with your comment that it feels good to have something to do that can help.

Dave
Picture of Bruce
Registered: 09-28-2005
Posts: 654
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Dave, thanks for commenting on your program. You cannot imagine how good it makes me feel to see others exercising (smartly) and finding benefit from the program.
Picture of Pocatello Jim
Location: Pocatello, ID
Registered: 05-24-2008
Posts: 109
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I have been using the exercise program for a month now. I am still only doing the daily exercises, but I have increased the number of reps by at least 50% and have double the reps of a couple of exercises. I have also increased my frequency to 5 days/week.

The most exciting thing for me? I can now take 2-3 trips down the hallway (doing the walking) without a my cane and I can even stride out a little (not just heel, toe).

Also, the throat exercises have helped reduce choking when eating/drinking and strengthened my singing voice (I love to sing hymns at church on Sundays) though I am still not ready to try out for the choir.

I'm excited.


Pocatello Jim
Picture of Bruce
Registered: 09-28-2005
Posts: 654
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Jim, great news! It is amazing what a little discipline will do. Continue to exercise "smartly" and watch your muscles come alive again.
Picture of Pocatello Jim
Location: Pocatello, ID
Registered: 05-24-2008
Posts: 109
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I cannot tell you how excited I am about exercise. BKD (Before KD) I invested hundreds of dollars into exercise bikes, weight benches, etc. and would work out for a couple of months with little to no success. I mentioned a few days ago that I had increased the number of reps and frequency of the daily exercises.

Well, today, I added additional exercises from the smart guide and exercised for 45 minutes. I feel great! And so excited! Where I once dreaded exercise, I now look forward to it.

Thanks Bruce for all you do to help us.


Pocatello Jim
Picture of Bruce
Registered: 09-28-2005
Posts: 654
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Jim, once again thanks for keeping us updated on your experiences with exercising. I believe your enthusiasm will help others take that first step to begin exercising smartly.

I have included some of your comments from this forum in my Thursday's Living with Kennedy's Disease blog. I want others to hear from you on the personal benefits you have experienced so far.

Great Job!
Picture of Pocatello Jim
Location: Pocatello, ID
Registered: 05-24-2008
Posts: 109
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The exercising continues and today I enjoyed a benefit beyond simply exercising longer and increasing repetitions. Today, I walked from the parking lot into KMart, past the scooter, and to the pharmacy, picked up my kids prescriptions, walked back out to my car, and was not completely exhausted and my back was not killing me.


Pocatello Jim
Picture of Bruce
Registered: 09-28-2005
Posts: 654
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Jim, thanks for sharing your great story. It was not too long ago when you commented, "So today my son pushed me into the building in a manual wheelchair and I came home feeling great! Except for one thing, I feel like I am giving up. By not, walking will the legs atrophy more? And even faster? Even though I was physically exhausted every week, I did it. So, am I quitter for using the chair? Shouldn’t I man up and walk until I at least fall once? My head tells me no, that I am not giving up or being a wimp. But, my ego says I am now less of a man and a bigger wimp."

Look at you now! Your comment about bypassing the scooter was a great one, guy.

You reap what you sow.

It has to feel wonderful to take a step backwards in the progression process. Just remember to take it slow and steady. And, thanks for keeping us updated on your progress.
Location: San Luis Obispo CA
Registered: 10-10-2005
Posts: 161
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When I was going through the transition to a power chair I used some simple guidelines. I continued to walk as much as practical. A major deciding point between walking and riding was did I know what I was getting into. For example I knew I could stand an walk long enough to do the routine grocery shopping using the cart as a walker. If I was going to a meeting place I had used before I knew the way was clear and the seating was acceptable I would walk.

For those cases where the duration (how long I could free stand was more of an issue than distance in many cases) and unknowns - would I run into obstacles, no seating available, I could use, etc. - I would go with the power chair to be safe.

I guess I was lucky in that I don't have any pride issues with using a power chair. Seems silly to me but I guess it bothers some.


=================
email:rheitzman at gmail
Picture of Pocatello Jim
Location: Pocatello, ID
Registered: 05-24-2008
Posts: 109
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Thanks Bruce and Bob, I guess I should tell the rest of the story. After picking up the prescriptions at KMart, I had grocery shopping to do at Wal-Mart. I did use the Wal-Mart provided scooter there. I knew I did not have the strength to push a cart through Wally World. Especially since I was alone and then had to drive home. But, just a couple of weeks ago, I would have used scooters at both places.

Also, I am still using the chair at church, at the zoo, the mall. I think I will always rely on mobility aids. Even at KMart I was using my cane. But, it was sure nice to use my legs for more than shuffling down the hall between the bed, the recliner, and the toilet.

I also want to take a moment and thank everyone who participates on this site. I check this site everyday. I read every comment that is posted and I receive strength from each of you. Thank you all for sharing your experiences.


Pocatello Jim
Registered: 10-22-2005
Posts: 142
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Hey Bruce. Can you provide me with a link to your exercise guide II? I don't seem to be able to search it out.
Thanks
Cam
Picture of Bruce
Registered: 09-28-2005
Posts: 654
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Registered: 05-07-2012
Posts: 29
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Could you please re-post the link to the PDF of the "Smart Exercise Guide - Part II" or email it to me. The link below does not work. I would like to print it off and give it to the trainer I am working with. Thanks.

NEVER MIND. I FOUND IT. THANKS.

This message has been edited. Last edited by: C.D.Harris,
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