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Picture of Pocatello Jim
Location: Pocatello, ID
Registered: 05-24-2008
Posts: 109
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In May, I started receiving Medicare and in June met with neurologist for the first time since I lost my employer managed insurance. The neurologist referred me to a PT and I have been going since July. The exercises I have learned through PT plus the diet changes I have made (See the nutrion forum) have made a world of difference!

I go to PT twice a week. When I started, I could do little more then stretch before I was worn out. After three weeks I working on a balance ball and using a 2lb medicine ball to exercise. I am now using a 4lb ball for my routine. My balance has improved from high fall risk to medium. I climbed two flights of stairs last wednesday (my PT was right behind me and I rested several minutes on the landing). And, next week I start in the pool. I didn't know it, but the stairs were my test. My PT was concerned about my ability to get in and out of the pool safely.

I know that Bruce has been advocating exercise for a long time and I had been using the exercises from this site for months, but having exercises designe for my specific abilities and monitored by a PT have made a huge difference. My strength, endurance, and balance have all increased. And, feeling a little cocky, I asked my PT, how much time I now spent doing cardio and how much strength training? He LAUGHED at me! He said that while I showed improvement, at my level, it is all cardio Frowner

One word of caution. In my excitement and enthusiasm and the excitement and enthusiam of my PT, I overdid it my last two sessions and spent several days in bed using muscles relaxers and pain meds. We have both agreed to more strictly follow the 70% rule. Meaning whatever he and I feel is 100% we will only work to 70%. I must be careful not to work myself so hard that I started undoing all the good that I have done in the past 8 weeks.

Pratical benefits of all this? I am standing when I shower again (with the help of handles). I am walking with my cane again (most of the time). I tied my tie for church today (I have been using zipper ties).

I am not running marathons and I still spend most of my day in the recliner, and I know that over time, KD will continue to reduce my strength, endurance, and balance. But, I will not go down without a fight. And, for the moment, I feel like I am in control, not Kennedy's Disease.


Pocatello Jim
Picture of Bruce
Registered: 09-28-2005
Posts: 654
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Jim, what a great post. Thank you for sharing.

It sounds like things are going well. That 70% rule is important as you found out.

You have come a long way.

Be safe and keep up the good work.
Picture of Pocatello Jim
Location: Pocatello, ID
Registered: 05-24-2008
Posts: 109
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Just wanted to give an update on exercise and therapy. During my evaluation yesterday my risk of fall was again updated from medium risk to low.

I am now in the pool one day per week and on weight machines one day per week. And at home, I am stretching and doing moderate exercise three days per week.

My last visit to PT is Tuesday, unless Medicare approves an extension. Keeping my fingers crossed. I will miss PT when it is over, but have established a firm exercise routine.


Pocatello Jim
Registered: 10-22-2005
Posts: 142
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What type of exercises are you doing? When I tried a PT, we exercised specific muscles, which, after two or three workouts, failed specifically. I have shied away from exercise for exercise's sake ever since. However, with winter setting in, I think I need to set up a program to minimize the losses from the enforced confinement. I will investigate Bruce's exercises. It's hard to go for a stroll when it's -30 with multiple feet of snow.....
Picture of Bruce
Registered: 09-28-2005
Posts: 654
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Jim, this is wonderful news. Thanks for sharing it with the community.

You have worked hard and the benefits are already evident. Great job!
Picture of Bruce
Registered: 09-28-2005
Posts: 654
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Cam, the physical therapist should have some knowledge of what will work with a progressive disorder. My first PT was just used to working with people who wanted to recover the strength after having lost it because of an accident or surgery or short-term disability.

I found that it is important to educate the PT on what KD is and why it is different than many disorders.

Stretching is important also. But, as Jim found out, overdoing your capabilities can be detrimental. So that is why we coined the phrase "smart exercising." The 70% rule works for most people as the disease has progressed to a point.
Picture of PeterMorgan
Location: 5001 San Julio Ave,Santa Barbara,CA 93111
Registered: 11-28-2011
Posts: 1
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I am having low testosterone , Does any exercise or any other physical therapy helps to increase it.Any kind of help would be appreciated.

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Picture of Bruce
Registered: 09-28-2005
Posts: 654
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Peter, that is a natural side-effect of the DNA mutation. Our body just cannot process as much testosterone and it is still not determined if injections are harmful or helpful. There was a trial at Ohio State in 1999 (?) and it ended early because it appeared testosterone supplements were harmful. There has been a few research studies over the last ten years or so and one will show is it harmful and another shows it doesn't do any harm. This is something you might want to research further and discuss with your neurologist.
Picture of Dave Y
Location: Lebanon, Ohio
Registered: 09-24-2009
Posts: 20
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Peter

During the course of treatment that eventually led to the KD diagnosis it was determined that I had a very low level of testostrone which was of concern to my primary care physician. He put me on Androgel 1%(50MG). When the neurologist ran the DNA test for KD to confirm that diagnosis, I read everything I could find on the KDA and other sites. I was concerned about continuing the Androgel treatment. This was about six months after I had begun the Androgel treatment and had also started both physical and speech therapy. I was feeling better than I had in years. In particular my swallowing problems (dry drowning) were greatly diminished. I had been awakened one or more times a night and those nightime episodes were (and have remained) much less frequent. My wife attributed most of that change to the Androgel treatment.

In researching the concern about increasing testosterone when that hormone has been linked to KD symptoms, I also found that there is no clear indications, that it hurts some men and helps others. The agreement I reached with both my primary care physican and neurologist was to continue the treatment and monitor my progress or regression and make changes as needed. That was about 18 months ago. Based on my experience I would put myself in the "it helps!!" catagory.

Even with Androgel treatment my testosterone levels dropped below the normal range this summer and I have been referred to an endrocrinologist. I will be discussing other options at my next appointment and will post what I learned that may be of interest to others.

My suggestion is that you discuss treatment options with your physicians.

Dave
Location: 421 Delaware St, Jermyn, PA 18433
Registered: 01-25-2012
Posts: 1
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This is really great, people with health problems must take note of this and follow them for good health.

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Picture of Pocatello Jim
Location: Pocatello, ID
Registered: 05-24-2008
Posts: 109
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Good Afternoon, I thought I would take a few minutes and update you all on my progress. Physical Therapy ended for me in November 2011. By that time, I had a pretty good grasp on my routine. Unfortunately, with my daughter's wedding and the holidays, I did not have the $ to join a gym and continue with all the PT I was doing. I did continue the stretches and use of the weighted ball exercises (which I had at home). I also continued walking whenever possible.

I did all that I could to maintain all that I had gained in PT. But, could feel it slipping away over the weeks.

Then last week, I got my tax return and Monday, my wife, two teenage sons, and I, joined a gym. I get two free sessions with a personal trainer and he is helping me re-establish my leg and core routine and to start a chest and arm routine.

I will let you know in the coming weeks how this all goes. But, I am already enjoying the mental and emotional benefits.

By nature, I am not an exercise person, but for some reason, if I can exercise out of the house around other people, I enjoy it much more.

Hope everyone is doing well.

Jim


Pocatello Jim
Picture of Bruce
Registered: 09-28-2005
Posts: 654
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Jim, thanks for the update. I am glad to hear you are back at it again. You did so well and gained so much, it would have been a shame to lose it.

Keep it going, guy.
Bruce
Picture of Pocatello Jim
Location: Pocatello, ID
Registered: 05-24-2008
Posts: 109
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So I thought after posting my question about lapband, I would give you all an update on my exercise progress.

As I mentioned, I joined the gym in February and have going three times per week. I spend 45 - 60 minutes on the machines.

I work legs, arms, back and chest. I would love to tell you that I have had dramatic results and am lean and toned, but that is not the case.

The results I have had are significant, though.

I no longer use a wheelchair or scooter (except on rare occasions) when out or shopping. Using only a cart, and occasion rest stops, I can make it through any store including Walmart and Costco.

I used to take several medications a day. Baclofen (muscle relaxer) 3x/day. Theophyllin (bronchiodilator) 2x/day. Atenelol (tremor reducer) 2x/day. Vicodin (pain killer) up to 3x/day as needed. Amitrypillin (saliva reducer) 1/day at bedtime.

I no longer use any of the medications daily except Amintrypillin.

Exercise has not reversed the effects of KD, but it sure has improved my quality of life.


Pocatello Jim
Picture of jameson411
Location: CT - USA
Registered: 03-20-2012
Posts: 17
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Jim, the improvements that you are experiencing are great. This encourages me to get more active!
Picture of Bruce
Registered: 09-28-2005
Posts: 654
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Jim, thanks for sharing. You are an inspiration to us all and a positive example of what exercise to do to help maintain a quality of life.
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