22

votes

Paleo and Disability -- My story, but curious about yours

Answered on August 19, 2014
Created January 26, 2012 at 8:55 PM

Hullo all,

I think I've mentioned in other posts here that I have a form of cerebral palsy. It affects my legs, and some my right arm. I also have spondelolesthesis, or a curvature in my lower spine. A doctor once told me that these two disabilities should not happen in the same person, but I am possibly the first.

Anyhow, these things mean a variety of health issues. For example, it meant that for many years I was sitting in a wheelchair all day. If I walked (rare, at certain chapters of my life), it was with leg braces and heavy metal crutches.

In college, this began to change. I, like my mother before me, was starting to show symptoms of celiac. So my family, who was already transitioning to organic, went organic and gluten-free. As I did this, I felt less lethargic, and gave more effort to walking rather than using the wheelchair. In my freshman year of college I lost ~40lbs.

As I was losing weight, I began to seek ways of improving my health. My father had gone to see a chiropractor/DO after an injury, and recommended that I do so. My first trip to the chiropractor was the first time in my life I was pain-free. Now, I don't see a chiropractor frequently anymore, but it is something I have found especially rehabilitative.

As my body improved and I lost weight, I began to walk even more, and even went to the gym. Over the last few years I have tried to be more physically active, and do what I can to strengthen my body, especially my core. The stronger my core, the more stable my gait and my spine. Over time my diet gravitated more and more to paleo, and other elements of the lifestyle. I often was barefoot in my wheelchair for comfort. But walking barefoot I did not need my leg braces.

It has now been over a year since I used a wheelchair and I am down to using wooden canes, not the cumbersome metal ones I once did. Sometimes I can get around with just one cane, which is not only convenient but something I feel more comfortable with in general.

One big change I have also noticed: in the course of my health journey I have become more comfortable with my own body, and more and more willing to embrace my own physicality, both with what I am able to do and that which I cannot (yet) do. I have never felt so determined or alive.

So now I am a lot healthier than I was. Which I know is good. Nevertheless, I wonder if there is something more I ought to do. I go barefoot (or wear Vibrams), I go to the gym, I walk every day, and I am trying to hold firm to stricter paleo, not only for energy but for how it helps my joints.

Are there any paleo people with similar stories out there? What did you do? How did/are you overcoming some of the unique challenges presented by a disability? What changes did you notice in how you saw yourself or your limitations? What are some of your hopes or objectives for the future of your health?

Bdf98e5a57befa6f0877f978ba09871c

on January 11, 2013
at 02:31 PM

hi Natasha, sorry for my delayed response. Check out the video by Dr. Wahls, linked above by Rich (Kamal fan). Though she doesn't have CP, it explains pretty well what Paleo can do for us. I know from my own experience too. Also, if she is able to walk, even just a few steps, barefooting would be good. Improving the receptors in my feet and legs has dramatically improved my gait. One final note, the less sugar she consumes, the better the results. High fat is the secret to the good life.

194d8e8140425057fe06202e1e5822a7

(3979)

on December 10, 2012
at 02:10 AM

coprophagous, do you eat nuts or seeds?

Bdf98e5a57befa6f0877f978ba09871c

on June 24, 2012
at 11:51 PM

I now recommend this video to anyone for whom it seems relevant.

Bdf98e5a57befa6f0877f978ba09871c

on June 24, 2012
at 11:45 PM

more incredible stories of how paleo helps people push back against illness. thanks for sharing, and best of luck with your fight.

Bdf98e5a57befa6f0877f978ba09871c

on January 28, 2012
at 01:50 AM

working on it, darling. Give me some time.

B1fcaceba952861d0324bdb291edbbe0

(3159)

on January 28, 2012
at 01:47 AM

Actually Claudine, he is suppose to write a Paleo song so he very well could be a paleo rockstar. <.< .... >.> ... * hint hint *

Bdf98e5a57befa6f0877f978ba09871c

on January 28, 2012
at 12:44 AM

thanks. I'm not here to inspire though. I'm here to learn. :-)

9f60b3546b0bf3a2e3a9b1b3fd021f4b

on January 28, 2012
at 12:33 AM

You are a freaking rockstar! Thanks for sharing and inspiring anyone who reads your story!

9dd4d453f7ebd7fd2a82814d08fc8f17

(581)

on January 27, 2012
at 07:18 PM

i used to wake up with my shoulders feeling like i had been sleeping in a sardine can; they were pointed slight up and painful to try to pull them down. i thought it was normal cuz i slept on my sides alot. that last for 2yrs until i read somewhere that it's a form of arthritis. not eating grains completely eliminated that. but the best part was the almost 24/7 back joint grinding pain also disappeared.

Bf57bcbdc19d4f1728599053acd020ab

(5043)

on January 27, 2012
at 07:27 AM

What an inspiration. Thanks for sharing your story. I admire you for making such an incredible effort to take your health into your own hands. It sounds like you also have a supportive family.

Bf57bcbdc19d4f1728599053acd020ab

(5043)

on January 27, 2012
at 07:26 AM

Glad someone posted this talk. It blew me away, too.

Medium avatar

(3024)

on January 27, 2012
at 06:18 AM

Unbelievable. Don't know whether to laugh or cry after reading your story.

Bdf98e5a57befa6f0877f978ba09871c

on January 27, 2012
at 04:38 AM

wow. this is incredible. And makes me want to be more thorough in my balance of nutrients with paleo. Just....thanks, Rich. =)

D5d982a898721d3392c85f951d0bf0aa

(2417)

on January 27, 2012
at 02:45 AM

Thank you for sharing, Kaitlin. My husband has a severe form of muscular dystrophy and I find it insightful and comforting to hear stories of folks with MD taking good care of themselves. I'm always so bummed to see how little the medical field expects out of his self-care. Sometimes I feel like the only one cheerleading about him deserving good food and care and body TLC. There are such huge cultural disconnects about caring for a quirky body...

Bdf98e5a57befa6f0877f978ba09871c

on January 27, 2012
at 01:54 AM

will do. A lot of people with CP end up with arthritic joints, I'm told. All the more reason to pass on the successes!

Bdf98e5a57befa6f0877f978ba09871c

on January 27, 2012
at 01:50 AM

fantastic remarks, Kaitlin. Thanks for your insights. +1

Cf4576cbcc44fc7f2294135609bce9e5

(3125)

on January 27, 2012
at 01:03 AM

wow, a preemptive strike on type two diabetes, good job. i hope you can stay with the program.

B1fcaceba952861d0324bdb291edbbe0

(3159)

on January 27, 2012
at 12:39 AM

Mrawp. Just keep on keepin' on. :)

2fd93e91bb14e641a2bac9c6033e84e2

(1614)

on January 26, 2012
at 11:52 PM

You ask what more you can do?! Damn. You've done so much. Thanks for sharing!

Bdf98e5a57befa6f0877f978ba09871c

on January 26, 2012
at 10:59 PM

I like your insight on fear. I don't think enough people see fear as a big part of the psychological aspects of health when you deal with chronic issues. Thanks for sharing.

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7 Answers

11
De787530dd6cf65e2cd03ada9f4cd214

on January 27, 2012
at 12:41 AM

Thanks for sharing your story, Caleb. As another who is disabled, I often feel left out of a lot of the paleo community's discussions regarding exercise and activity. I was diagnosed with a mild form of muscular dystrophy (MD) 23 years ago. At the time of diagnosis (childhood), I had been finding it difficult to run. The disease has slowly but surely progressed, and I currently need balance assistance to walk, and can't stand from a sitting position without being lifted to my feet. However, once I'm standing, I can stand indefinitely with balance support, so I always stand and move around for at least 3-4 hours per day, to prevent muscle atrophy and osteoporosis.

I've found that when I went 100% paleo with my diet (~6 months ago), I experienced some significant neurological improvements: whereas when I was 80/20 paleo, and still eating some grains, I would always feel exhausted and almost drunk with dyskinesia post-9 pm, I now generally have great energy and neurological function, whatever time of day it is.

I'll admit that I'm disappointed that I haven't seen any gains in muscle strength, despite trying to follow the recommended paleo lifestyle very closely. However, I believe that my muscle weakness also involves other factors, such as gut health (I recently learned that I have a gene for gluten intolerance, so who knows how much damage I did to myself over the decades of eating grains); taking antibiotics 2 years ago resulted in the loss of ~50% of my muscle strength, and I've been trying (so far unsuccessfully) to restore that strength by the use of pre- and probiotics and bone broth.

It sounds like your lifestyle is ideal! If I had any recommendations for you, I'd suggest experimenting with supplements, which may further augment your functioning. As for myself, I had discovered years ago that, just by taking a good-quality multivitamin, my time to get up a flight of stairs was reduced from 1+ hour, to <4 minutes! And that change happened within 2 days of starting the multivitamin. Since then, I've found that ubiquinol, b-complex, potassium citrate, selenium, good-quality vitamin E, and assorted protein poweders all seem to help my muscle function. Since you have different issues, it's worth doing some research to see which supplements could benefit your health challenges.

I'll also note, for the benefit of the paleo community, that I've had great success with fasting; I aim to do 2 24-hour fasts per week, and on most other days, try to stick to a 4-6-hour eating window. As someone who is trying to lose fat (and it's really difficult when you can't exercise much!), fasting has really helped me. If someone with a degenerative neuromuscular disease can fast regularly with no decrease in muscle strength, I believe that pretty much anyone (who doesn't have an eating disorder) can benefit from fasting.

Bdf98e5a57befa6f0877f978ba09871c

on January 27, 2012
at 01:50 AM

fantastic remarks, Kaitlin. Thanks for your insights. +1

D5d982a898721d3392c85f951d0bf0aa

(2417)

on January 27, 2012
at 02:45 AM

Thank you for sharing, Kaitlin. My husband has a severe form of muscular dystrophy and I find it insightful and comforting to hear stories of folks with MD taking good care of themselves. I'm always so bummed to see how little the medical field expects out of his self-care. Sometimes I feel like the only one cheerleading about him deserving good food and care and body TLC. There are such huge cultural disconnects about caring for a quirky body...

10
6714718e2245e5190017d643a7614157

on January 27, 2012
at 04:16 AM

Caleb,

Have you seen this video?

http://www.youtube.com/watch?feature=player_embedded&v=KLjgBLwH3Wc

I think you will enjoy watching it. It is very moving.

Bdf98e5a57befa6f0877f978ba09871c

on January 27, 2012
at 04:38 AM

wow. this is incredible. And makes me want to be more thorough in my balance of nutrients with paleo. Just....thanks, Rich. =)

Bf57bcbdc19d4f1728599053acd020ab

(5043)

on January 27, 2012
at 07:26 AM

Glad someone posted this talk. It blew me away, too.

Bdf98e5a57befa6f0877f978ba09871c

on June 24, 2012
at 11:51 PM

I now recommend this video to anyone for whom it seems relevant.

7
Cf4576cbcc44fc7f2294135609bce9e5

on January 27, 2012
at 01:12 AM

im 55. i had rheumatoid arthritis for thirty years. the pain , discomfort and lack of range of motion were gone in three to four days on strict paleo. trying to add back any of the former foods has been meet with disastrous results. i have been paleo for about 6 months. when i walk past a mirror i cant help but to notice the smile that was never there befor. please share my experience with anybody you can that is suffering needlessly with RA.

Bdf98e5a57befa6f0877f978ba09871c

on January 27, 2012
at 01:54 AM

will do. A lot of people with CP end up with arthritic joints, I'm told. All the more reason to pass on the successes!

Medium avatar

(3024)

on January 27, 2012
at 06:18 AM

Unbelievable. Don't know whether to laugh or cry after reading your story.

9dd4d453f7ebd7fd2a82814d08fc8f17

(581)

on January 27, 2012
at 07:18 PM

i used to wake up with my shoulders feeling like i had been sleeping in a sardine can; they were pointed slight up and painful to try to pull them down. i thought it was normal cuz i slept on my sides alot. that last for 2yrs until i read somewhere that it's a form of arthritis. not eating grains completely eliminated that. but the best part was the almost 24/7 back joint grinding pain also disappeared.

194d8e8140425057fe06202e1e5822a7

(3979)

on December 10, 2012
at 02:10 AM

coprophagous, do you eat nuts or seeds?

4
D57cf94412731d505527a1acb53c958e

on January 26, 2012
at 10:25 PM

I am just beginning my Paleo Diet and Im relatively healthy, this is more to take a preventative measure as my family is plagues with diabetes and high blood pressure. I also hope to be an example to them and hopefully change their eating habits and improve their lives. I just wanetd to thank you for sharing your amazing story and progress.

Cf4576cbcc44fc7f2294135609bce9e5

(3125)

on January 27, 2012
at 01:03 AM

wow, a preemptive strike on type two diabetes, good job. i hope you can stay with the program.

3
775bc83a7c54975e77a8500e065a24c3

on January 26, 2012
at 10:57 PM

I've gone through multiple surgeries and lost 4" of my sigmoid colon. Maintaining a paleo diet and lifestyle has greatly improved my overall health. My motivation for continuing my current lifestyle is slowly becoming less fear based (being or avoiding illness) and more focused on self acceptance and spiritual health. Thank you for sharing your story and personal journey towards health and wellness. Best Wishes.

Bdf98e5a57befa6f0877f978ba09871c

on January 26, 2012
at 10:59 PM

I like your insight on fear. I don't think enough people see fear as a big part of the psychological aspects of health when you deal with chronic issues. Thanks for sharing.

2
03a4ec34751186201a56da298ac843ce

on June 24, 2012
at 12:58 AM

I am 36. Between the ages of 22 and 34, I have had 5 back surgeries for things like multiple slipped discs. There were times, after surgery, when I was in so much pain I literally spent 3 months on the floor and would crawl to the bathroom I have some hardware in my back, but, even with 5 surgeries, I was always in constant pain. I was always a gym rat, but working out left me in terrible pain for the days after. That is one issue. The other is cancer and the high dose chemo, which is worse than the disease.

When I really tighten up my Paleo diet, my back does not bother me as much. I can walk more and hike more. I can work out. You would never know that I had had multiple back surgeries.

he other is that the chemo seems to have less of an effect and I feel much less tired than other people I know. People that know I am sick always tell me they are amazed at how good I look and other than being bald, they would never know I had chemo.

Bdf98e5a57befa6f0877f978ba09871c

on June 24, 2012
at 11:45 PM

more incredible stories of how paleo helps people push back against illness. thanks for sharing, and best of luck with your fight.

1
86979eff228f3e4bbda8df98d54d410f

on December 09, 2012
at 08:12 PM

Hi

I am really interested in finding out more about the effects of paleo on cerebral palsy. My best friend has cerebral palsy ataxia which is very rare. She was diagnosed with it when she was a child. Her gait is unsteady and she is shaky. As she uses so much energy just getting around and doing everyday things, she gets tired very quickly. She is already very slim. Her family are Italian, so a large part of her diet has always been bread and pasta. She also relies a fair amount on sugary foods to provide her with energy.
I was wondering if anyone had ever heard of paleo making a difference to people with cerebral palsy or ataxia? Thank you in advance for any information or ideas.

Bdf98e5a57befa6f0877f978ba09871c

on January 11, 2013
at 02:31 PM

hi Natasha, sorry for my delayed response. Check out the video by Dr. Wahls, linked above by Rich (Kamal fan). Though she doesn't have CP, it explains pretty well what Paleo can do for us. I know from my own experience too. Also, if she is able to walk, even just a few steps, barefooting would be good. Improving the receptors in my feet and legs has dramatically improved my gait. One final note, the less sugar she consumes, the better the results. High fat is the secret to the good life.

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