Ans Reconditioning Exercises

[firewatcher]

"All patients should be encouraged to begin a gradual program of physical reconditioning, working toward a goal of performing 20 to 30 minutes of aerobic activity 3 times a week. In addition, we also encourage the patient to engage in gentle resistance training of the lower extremities and abdomen in order to strengthen the skeletal muscle pump." --Dr. Blair Grubb on POTS

(Circulation. 2008;117:2814-2817.)

Hi everyone,

Since it seems like we have to do everything ourselves anyway, lets get a reconditioning program together!

Actually it would be more like an a la carte menu of stuff we can do to improve our daily lives.

Ohio State University had a 15 week program that has now closed, but I am trying to get more info about what they did and how it worked out.

This will not be a "fitness" thing, but a "from bedridden to functional" thing.

Anyone who has done this, please contact me! If anyone has any links to the YAZ exercises, let me know. I can't find them anymore.

I know we are all dealing with different levels of disability as well as other common comorbid disorders like EDS, so all input is appreciated!

I thought that we could put this thing together and have it "approved" by our various ANS doctors and post it as a PDF here in things that help. We could also give it to Physical Therapists so that they understand what they/we are dealing with.

Things that need to be addressed or considered (please add to this list!)

Supine exercises for severe disability (just for blood movement, improvement of tone)

Sitting exercises for the less disabled (one step up)

Standing exercises to increase the skeletal muscle pump/decrease OI

More advanced exercises to gain strength/tone/venous return/blood volume

Realistic general cardio guidelines (HR, times, how often, on/off beta-blocker)

Anti-Faint countermanuveurs

How EDS impacts exercise (what to do/not to do)

When to exercise/reactive hypoglycemia to exercise

How to pre-treat/medicate for exercise

If this has already been done, please let me know!

Thanks!

[mkoven]

Great idea! Following up on our pms, feel free to use any of that. Since Cleveland is big on cardiac rehab, maybe a call to one of the folks who works there would be useful? either in the syncope clinic or in their cardiac rehab program? I do know that I was told initially not to let my hr get more than 30bpm over resting, or I'd trigger a vagal response.

Maybe even adding some paragraphs on the physiological "normal" response to exercise, in terms of breathing, hr, bp, and things the ans can do to foul those up?

So for example, what does a normal stress test look like, and what do the tests of those of us with ans dysfunction look like? I have heard that we can sometimes look like we are having cardiac distress-- and like me, end up in the cath lab!

For most exercise physiologists, for example, plummeting bp with exertion rings all the alarm bells. They immediately think severe heart disease, not ans dysfunction. for them, bp in ans funciton is only an issue AFTER exercise. Of course, the responsible thing is to first rule out life-threatening causes, but it would be good for them to know how ans problems can also cause problems DURING-- so that we don't all end up in the cath lab. (Not a place I ever wish to return.)

My most recent treadmill test was relatively normal, though I could feel adrenaline rushes when they'd ramp it up, and I felt some bp crashes when it was over. But nothing too terrible. this, however,w as after a dozen sessions of rehab.

[Rachel]

Here is a link to Yaz Exercises. The images aren't coming through on my computer, but hopefully they'll work for others.

Rachel

[EarthMother]

Count me in, I'd like to help with this project.

I think you covered the grades/levels well.

It would be nice to have some kind of "ability benchmark" that folks could make an assessment at the onset and every few weeks thereafter in order to see progress. Because as some of us have noted, progress can be so hard to see when it is happening at such a slow pace that we often overlook that we are indeed making strides.

Something like a questionnaire where they can check off their symptom severity/frequency as well a physical ability, perhaps pain levels and other factors as well.

Unless someone has something in the can for this, I can look around and see what I can come up with.

Thanks for getting us all thinking about this. That program in OH would have been ideal ... if it had ever gotten off the ground.

[yogini]

I'm a big fan of yoga. I've been practicing for 1 1/2 years now and it has made a huge difference. One of the first forms of exercises that helped me was stretching. When I started yoga, I realized that my stretch DVD was actually yoga. Stretching really helped my strength and circulation and helped me work my way to exercising harder. There are lots of non-strenuous yoga poses that I think would be great for a POTSie starting out with exercise.

Other things that helped me were doing pilates on a DVD and working with a personal trainer in the pool, who was trained as a rehab therapist for cardiac patients.

[firewatcher]

Thanks so much! I too am still looking for the program from the "can." So far everything is absolutely individualized, which is why I think this needs to be very a la carte, some people can do what others cannot.

I think we also need snippets from people who have actually made the transition from down and out to functional again. Inspiration is important. I know for many of us that is going to slide back and forth. I really want this to be positive AND REALISTIC! not a rah, rah, get in shape thing. I found this accurate, rather painful info that I think needs to be added as well:

"All patients should be encouraged to begin a gradual program of physical reconditioning, working toward a goal of performing 20 to 30 minutes of aerobic activity 3 times a week. In addition, we also encourage the patient to engage in gentle resistance training of the lower extremities and abdomen in order to strengthen the skeletal muscle pump." --Dr. Blair Grubb on POTS

(Circulation. 2008;117:2814-2817.)

Exercise Physiology for Health Care Professionals 2001

By Frank J. Cerny, Harold Burton

??the greatest loss of muscle mass occurs in the first three weeks. This is a key point for therapists, because it takes several weeks or months to produce hypertrophic, or conditioning response. In addition, recovery of muscle mass with reconditioning, or remobilization, typically takes two to three times longer to occur than the atrophic response does.?

Bloomfield SA.

Department of Health & Kinesiology, Texas A & M University, College Station 77843-4243, USA. sbloom@acs.tamu.edu

Prolonged bed rest produces profound changes in muscle and bone, particularly of the lower limb. This review first addresses the various models used by researchers to study disuse-induced changes in muscle and bone as observed during prolonged bed rest in humans. Dramatic change in muscle mass occurs within 4-6 wk of bed rest, accompanied by decreases of 6 to 40% in muscle strength. Immobilization studies in humans suggest that most of this lost muscle mass and strength can be regained with appropriate resistance training within several weeks after a period of disuse. Significant decrements in bone mineral density of the lumbar spine, femoral neck, and calcaneus observed in able-bodied men after bed rest are not fully reversed after 6 months of normal weightbearing activity. Importantly, the lost bone mass is not regained for some weeks or months after muscle mass and strength have returned to normal, further contributing to the risk of fracture. Those who enter a period of bed rest with subnormal muscle and bone mass, especially the elderly, are likely to incur additional risk of injury upon reambulation. Practical implications for exercise professionals working with individuals confined to bed rest are discussed.

PMID: 9044223 [PubMed - indexed for MEDLINE]

The point of an exercise program as a treatment option for EDS is to improve joint stability. Exercise accomplishes this by strengthening the muscles supporting the joint. Speak with your doctor for the best exercises for you, because you should avoid any exercise that puts stress on your joints.

Joint stability may be improved through prescribed exercise programs that strengthen the muscles. But avoid weightlifting. It puts too much strain on your joints. In fact, any exercises that cause you to put pressure on locked joints should be avoided. Check with your doctor or physical therapist to learn appropriate strengthening exercises and the proper way to do them.

Keep it coming!

If anyone wants to help, or has greater computer skills (most of you!) please PM me, so I can give you my email!

Jennifer

[Ernie]

Hi,

You can add balance exercises because after being bedridden for awhile and in a wheelchair you have balance issues when starting to walk again.

For the diabetic or hypoglycemia issue patients car measure their blood sugar before starting exercises and eat if necessary or adjust their insuline level.

Exercising decreases insuline level.

[corina]

i thought swimming would be the key for me to gain some strength back. i have tried at rehab but after about 5 months i had to admit that i can't swim anymore. i can be in the water on my back and, with the help of floaters, move my arms. although that is much less than i expected (2 years ago i could swim and build that up from 10 meters to 40) i really really enjoyed every minute of it!!!

maybe it's not for me but i do think that people can benefit from swimming exercise!

corina

[firewatcher]

i thought swimming would be the key for me to gain some strength back. i have tried at rehab but after about 5 months i had to admit that i can't swim anymore. i can be in the water on my back and, with the help of floaters, move my arms. although that is much less than i expected (2 years ago i could swim and build that up from 10 meters to 40) i really really enjoyed every minute of it!!!

maybe it's not for me but i do think that people can benefit from swimming exercise!

corina

Vandy suggested just walking in a pool, that the positive pressure would help (almost like a g-suit) but I found it just exhausting. And I don't like the sight of myself in a bathing suit right now anyway (Thar' she blows! )

[yogini]

Did you walk with a flotation belt? All of the exercises I did with the trainer were with a flotation belt - it makes things much easier!

[mountainsunflower]

What is Yaz exercies???

thanks

[EarthMother]

That's the problem with the Internet, things go away. And the now very old link to Yaz exercises that I used many years ago is no longer working, as Rachel pointed out above the images are not loading. Seems they linked the images to an external site that is no longer hosting the graphics.

And of course now if you Google YAZ you get lets of BirthControl information!

If I come across them again, I'll post a new link.

[flop]

I've searched as best I can for Yaz exercises but all the leads link back to the same link that Rachel posted which has no pictures anymore.

Flop

[cma]

Hi,

I also took a peek at YAZ exercise website the one that doesn't display images.

I don't think that this is what people with orthostatic intolerance need, most of the exercises are for upper body part and as I've read it is recommended to strenghten the lower body part more. Especially the military press, in my opinion this would make many people more dizzy and lightheaded. I

In my opinion more stability improving exercises on bosu or stability ball would be much better. I don't say that YAZ exercises are of no value they are general exercises that every PT would teach you.

[mkoven]

this is just my experience, but I find squeezing my abs super hard-- (essentially sucking in my gut, pulling my navel to my spine, as in pilates) will often help me feel like I'm getting more blood to my upper half. I

[cma]

I found a link with in my opinion pretty good exercises for someone who is not able to do squats and lunges. I think these are very gentle and effective exercises to start strenghtening legs.

http://www.sld.cu/galerias/pdf/sitios/reha...ion/leg-str.pdf

[flop]

Thanks cma - they look really helpful and most of them can be done in bed or sitting on the edge of the bed, a brilliant starting point that should avoid people going dizzy!

Flop

[Katja]

Thanks cma - I've been looking for something like this!

[all4family]

Count me in, I'd like to help with this project.

I think you covered the grades/levels well.

It would be nice to have some kind of "ability benchmark" that folks could make an assessment at the onset and every few weeks thereafter in order to see progress. Because as some of us have noted, progress can be so hard to see when it is happening at such a slow pace that we often overlook that we are indeed making strides.

Something like a questionnaire where they can check off their symptom severity/frequency as well a physical ability, perhaps pain levels and other factors as well.

Unless someone has something in the can for this, I can look around and see what I can come up with.

Thanks for getting us all thinking about this. That program in OH would have been ideal ... if it had ever gotten off the ground.

Hi Earth Mother,

I think that is a great idea. If you need any help with the computer making a graph or something my mother is really good at that stuff. Let me know.

Suzy