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My son has low muscle tone and motor dyspraxia and now that he is wearing a Boston brace for scoliosis it has been almost impossible to get him to exercise enough to strengthen his core muscles. Walking long distances is hard for him because of the foot pain, even though he has specially made orthotics in his shoes. Our co-pays for physical therapy would be close to $200 a month and it would just be three days a week. He needs the exercise every day.

I think I found a way that he might be able to exercise pain free--a hot tub. I have been doing a lot of reading about this lately and I read things like "water's buoyancy serves as a cushion, protecting joints during exercise routines and since water offers more resistance than air it helps people build muscle strength as they push against it."

I also read that it is good for people with sensory disorders, weakness, poor motor coordination, pain, perceptual/spatial problems, and motor problems. I think it might also be good for a mom with anxiety and high blood pressure issues.

What a wonderful thing it would be for my son to have more time to learn without being distracted by pain. He could do history in the hot tub if he started hurting. He could listen to literature while lounging in the hot tub. He could practice singing his solos for musical theater in the hot tub. He can exercise without the brace in the water making it so much easier for my son.

I think we just need to do it. We are going to try to find a way to build on an exercise room and a place for a hot tub for my son, but going into debt really scares me when my husband can't get enough additional life insurance to cover the total amount of the loan and he rides a motorcycle, had cancer, and will retire in less than three years. I can imagine what Dave Ramsey would say about this. Once again I feel like we have to choose between spending money on the disability issues or making sure my twice exceptional son can go to college. This is almost as scary as making that decision to homeschool. Am I crazy? Are we doing the right thing?

He'd get much better exercise in a swimming pool. I would start exploring your options to get access to a pool. Do you have a Y where you live? They offer scholarships and financial aid. They would also have a hot tub. His physical therapist may have other ideas where he might regularly access a swimming pool as well.

Is the PT not setting him up on a home exercise program? That's very odd. He's certainly capable of following directions and doing home exercise. It is very rare for someone to go to PT three times a week. For similar issues we were going once every three weeks and working a daily home exercise plan.

In terms of building a home exercise room, one thing I'd keep in mind with hypotonia it isn't like he needs expensive equipment to get a good work out. You could probably get everything you need for him to be exercising at home for less than $25 and certainly less than $50. Again the PT could help with suggestions including therabands (they would probably give those to you for free), inexpensive hand weights - you could even substitute soup cans, a therapy ball - sold at places like Target for $20, using free stuff like the wall and stairs.

It is really more about motivation and knowing the appropriate exercises than about having equipment. If you do decide to get something like a treadmill, check craig's list and freecycle and the ads in the newspaper. Most people who buy expensive exercise equipment don't end up using it, so you should be able to get some cheap. I would urge extreme caution though in purchasing equipment. Using weight machines with hypotonia offers a lot of possibility of getting hurt. That really needs to be planned very carefully. He could get much further with one or two pounds weights and resistance bands.

The closest YMCA is over 30 miles away in the city. We had a family membership for a while but it was hard to find the time to go there and take care of our other responsibilities.

He was in physical therapy (the only PT place in our small town) for only a month and it was difficult to afford the co-pays. I don't know why they set him up for three times a week. It was in a big open room with the physical therapists working on more than one person and they would tell him what to do and walk off and leave him. I asked about exercises he could do at home and they told him to do stretching exercises. At home he used the weight machine and we set up a Nerf basketball goal in the house that he really enjoyed playing. He also spent time bouncing a ball against a door in the house and if he didn't catch it, the dog would get it and he got even more exercise chasing after the dog. He sometimes exercised with the Wii or with Dance
Dance Revolution. He took breaks throughout the day to exercise and was looking forward to taking some kind of martial arts class. His balance, his ability to catch balls, his attitude, everything improved to the point that we were getting ready to put him into a martial arts class and he was really looking forward to this but when he had to start wearing the brace all of that activity stopped. Now it is more painful to move and he can't bend in it. No more picking up balls off the floor or running after the dog. When he wears the brace he can't do half the things he did before. It also makes him feel very hot and it is harder to breathe because it has to be worn very tight to do its job. He can't take the brace off when he does any kind of weight bearing activity which is one of the reasons why we are looking at some kind of water therapy. He can take it off when he is in the water. The only place where he could get water therapy has a long waiting list and is 45 miles away.

We have an exercise ball, treadmill, weight machine all in different, cramped bedrooms without much room to exercise. I think we as a family will exercise more if we have the room do it together. We are going to do whatever we have to do to make health and exercise a priority in our family.

I'm trying to get a better sense of where you live. Is the 30 minute away the closest indoor pool? Is there a pool at another kind of gym or perhaps a hotel that might agree to a monthly contract for pool use. Is there a physical therapy clinic or rehab hospital that might have a pool? If you have not done so I would for sure get him on the list at the place 45 minutes away just in case it turns out you want it later you won't be starting from scratch. Could his orthopedist (or whoever is treating the scoliosis) make a PT recommendation or perhaps they could help him move up the water therapy list.

It sounds like you got stuck with a really bad PT experience. I had one like that too and I agree it was pointless. It sounds just the same - therapists wandering off, too many scheduled visits. However, we've had experiences that are 100% different from this too so I know it is worth trying to get something better. Just like any other profession there are good and bad. You should expect the therapist to stay with your son for at least 80% of the time he's at the clinic. You should expect to see steady progress. He should be given a home exercise program.

Is this the only clinic? If there is another clinic I would try another one. If this is the only one in your area I would arrange to speak with the director of the clinic and share what you did not like about your experience and be sure to mention you are considering talking to your insurance company about this. This is a good opportunity to model for your son that when you have problems you look for solutions and advocate for a change instead of just accepting getting ripped off. A good PT can be absolutely revolutionary for a person with hypotonia. It is worth trying to find one.

I understand your concerns about copays but with a mature and cooperative person like your son easily the therapist could arrange to see him every couple of weeks to start and then maybe just once a month and that would be radically less money than buying a hot tub or building an additional room. It would not be supervised exercise, but instead seeing that he understands exercises to do at home and monitoring when he's ready for different exercises. It is great your son tries to be active (at least before the brace) but really I can say from personal experience there is a world of difference between what a person gets from general activity than from well targeted therapy. Just as scoliosis is more common in people with hypotonia so are a range of other problems and that really needs attention. Again, great if he will exercise in water or out, but that is really a totally separate thing from specific exercises designed to address these challenges.

We saw the orthopedist yesterday but he didn't have time to answer a lot of questions. He only had time to say that he didn't think aqua therapy was necessary and to keep doing what we are doing because it seems to be working. There was no curve progression at all. We didn't have time to explain that the reason we are trying to figure out some kind of water exercise is because of the leg pain and foot pain that he gets with other kinds of exercise. We are trying to increase the amount of exercise he is doing so he can increase his endurance, but decrease the amount of pain in his legs and feet and I think a hot tub would help with this. Because my son finds pain distracting, we have to work around this with homeschooling. Over the counter pain medicine doesn't seem to work that well and the pediatrician said she couldn't prescribe anything stronger until he is 12. We tried heating pads and this helps a little but I think a hot tub would work even better. I think it would help him get through the 5 hour musical theater rehearsals to know that he could go home and get some relief from the pain.

Pain and fatigue have always seemed to me to be the biggest "learning disabilities" my son has to deal with. It almost seems like he doesn't have motor dyspraxia at all until the fatigue and pain start. For the first few hours, his timing and balance seem to be as good as the average kid and he seems to have the confidence that he can do well. Last week I watched him sing a solo as Hercules in Go the Distance, in front of six middle school aged girls in his musical theater class. He and I both heard one of the girls say to another girl "that was really good." They hadn't heard him sing by himself before because he was a little shy about trying it. He finally found the self confidence to do it, even though he is wearing the brace now underneath his clothing.

We don't have any hotels or gyms in our small town. The YMCA in the city is really the closest indoor pool and it is just too difficult for us to go there often enough to do him any good.

My husband found out that he has more life insurance than he thought he had so I am not as worried about the debt now. We are going to try working on this at home first with exercises we found on the internet and if it doesn't work, we will try again to find a physical therapist even if we have to drive for miles to get to a good one.

Thanks for the advice.

It is great your financial situation is better than you thought! I would strongly encourage you to use some of that to explore other PT ideas. Even if you just met with the PT a handful of times they could give him ideas get the most of his home exercise. It could save him a lot of time and pain. With the scoliosis and hypotonia it maybe tricky to find exactly the right sorts of exercises that are appropriately challenging and don't at the same time risk him getting hurt. It may be that someone else could find some easy solutions that would result in bigger improvements faster.

As far as heating pads - have you tried one of these? http://www.amazon.com/Moist-Heating-Pads-TheraTherm-Rectangular/dp/B0006NMT5U/ref=pd_sim_hpc_2 They are great. A totally, totally different thing than the sort of heating pad you get at the drug store.

Hi Lori -

I was wondering. (disclaimer: I know nothing about your situation or diagnosis of scoliosis. please excuse my ignorance)

I was just wondering if the brace is doing more harm than good. Does your son really need it if if is eroding the progress you have made on all the other fronts?

I have a pinched nerve (disintigrating lumbar disc) I get foot and leg pain if I sit too much or lift anything too heavy. (which I recently did) I sympathise with your son . Hope your family is able to work something out so your son feels better soon.
EW