Last Friday I dove into another in a long line of treatments I have been trying, in order to seek relief for my chronic pain associated with my cervical dystonia. Since I tend to feel better in warm climates, especially when the locations are at sea level, I asked my rehab. doctor what he thought about Pool Therapy. “It certainly can’t hurt, can it?” was his response, as he wrote up the doctor’s order needed for this different kind of physical therapy.
As I walked into Courage Center on Golden Valley Road, i noticed all the people in wheelchairs in the lobby. After checking in and getting into my swimsuit (in case there’d be time to do some therapy in the pool after my initial consultation with this second physical therapist in my life), I walked out to the pool area. While there were many wheelchairs rolled up against the wall, what struck me most was seeing all of the smiles on the people in the pool. Each and every one of them had some sort of flotation device, with one man riding a blue noodle like a horse and another one treading water with his feet, the yellow noodle wrapped around his upper back for support. I can’t begin to describe them all, but they just looked happy. Those who were there to swim independently in the warm water pool could maneuver themselves without help from another person.
I could feel their joy and freedom and wanted that for myself too. Because of the bouyancy of the water, floating on my back is about the only exercise I can still do. Why? Because I don’t have to hold my head up. The water does it for me. Would I be able to swim any other way? I wasn’t quite sure, and that concerned me considering the fact I was at Courage Center for physical therapy in the pool. It couldn’t be as easy as floating on my back for an hour. I knew that.
Like any time you meet a new addition to your medical team, I was bombarded with the same questions I’ve been answering for the past 5 years. You’d think I’d have it down pat by now. But because every day brings something new and every strategy utilized to promote relief creates a variety of results, I find it gets more difficult to explain myself. Especially when someone doesn’t really understand what cervical dystonia is.
That was the case with this young woman. She was nice enough, but I struggled with trying to explain what mechanical link physical therapy is. I struggled with explaining Xeomin, a different form of Botox. I struggled with explaining dry needling. There are so many strategies I’ve tried over the years in an attempt to relieve my pain, and I’m reminded of that each time I’m forced to recall all the treatments I’ve done. It’s exhausting! It’s also frustrating, because I wonder why I took all that time to fill out the forms prior to the appointment if they are just going to ask me the same questions anyway while entering my answers into their computers. Sometimes, when I meet new practitioners, I feel like I’m speaking a different language. How am I supposed to communicate with a physical therapist who doesn’t know what dystonia is? This is a constant struggle and not the point of this post, but it just re-affirms the fact that everyone going into the medical field needs to be taught about this neurological movement disorder.
After my cross-examination and being tested for muscle weakness, rotation, and balance (all of which I most certainly failed), I heard those magic but worrisome words. “It’s time to get in the pool now. You can use the ramp, or you can use the stairs. If you take the stairs, just be aware of the wheelchair to your left.”
By now, we were at the top of the stairs, and she had grabbed some sort of flotation device that resembled a life preserver. “Do you have something you use for traction?” she asked, as I held onto the railing going down into the pool.
“Oh, no! Using traction makes my neck worse, not better.” Not allowing my head and neck to move freely will only create more problems. “If only I had my Mechanical Link Physical Therapist and Physical Rehab. doctor here to tell her why,” I thought. I wish I understood more about what my body is going through and why stopping my involuntary spasms will only create more problems. There’s just so much a person can comprehend, though. All I can do is do my best, right?
“Well, we’re going to use this to keep your head in place while in the water,” she said, as she slipped the flat “life preserver” over my head. When we got to the part of the pool where my toes could still reach the bottom, she said, “Try to sit down with it so we can see if it’s on properly.” I allowed my head to relax, so that it was resting directly on top of the hole. As I lifted my legs, I thought, “Wow! I can actually be vertical in the water without having to hold my head up with my hands.” This was going to be one of my new paths to freedom in the water. With this new contraption helping me maintain a vertical position, I wasn’t restricted to floating on my back. Even better was that it still allowed a little room for my neck to spasm when it needed to.
“Pedal yourself down to the deep end, so you can feel yourself being completely upright in the water,” she said as she held onto the metal bars behind her and I straightened my legs so I was standing with nothing below me. I soon discovered how much better it felt when I rested my arms on top of this device, about 12 inches away in front of my neck and parallel with the water. Also, I quickly learned her references to biking and pedaling didn’t mean we were going to use a real bike in the pool (now that would have been a dream come true!). She was referring to how she wanted me to move my feet.
For the last few minutes, we went back to the shallower part of the pool. My task was to walk. Not on my tiptoes. Not stomp, stomp, stomp. But rather, “Heel, toe. Heel, toe.” This took some getting used to, and I really had to slow down to concentrate. It wasn’t easy. When I’m in the water, I’m so used to relying on the strength in my arms and legs to move me through the water. But having to make contact with a hard surface was another matter. And if you think walking properly in water at about the 5 foot mark is easy, try it for yourself. Then think about what it would be like if you had any number of diagnoses involving movement disorders.
It was a workout, and to think we were only in the water for 10 minutes. Next time it will be a full hour! While I’m excited, I’m also worried. If I got that tired in such a short period of time, what will happen during an hour? And she wants to see me twice a week! I’ve always been one to try anything, as long as there’s the possibility it will produce positive results. So here I am again. Doing something totally new. Simply hoping there will be some pain relief for me in this warm pool physical therapy program. I asked for it. Now my wish is that it actually helps!
MY HOPES: I can’t say it enough, but I’ll say it again. My hope is to educate more people about dystonia. What it is…How it affects one’s daily life (even though we’re all different)…Sharing the unconventional methods that are used for cervical dystonia in particular, since that’s what I’m most familiar with…My hope is that you will share this information with others too. If you see a story about someone with dystonia, post it on your Facebook page. If you hear an interview on the radio, share the link. Or even bring it up in a discussion you are having with a group of friends. The more people who know about it, the better.
I also hope you will find the courage to try treatments that may appear to be out of your comfort zone. For me, I have been in so much pain, I’ve welcomed anything new with open arms because I hope with all my heart that it will be the one thing I can rely on for some pain relief. Be sure to advocate for yourself, and if something isn’t working for you, ask for something new. Research something new. Talk with others about their experiences. Although I’ve always been seeking new therapies, I learned a hard lesson when I kept using the same toxic injections for 5 years that didn’t provide me any relief from my pain. I had to repeatedly ask to get it changed, and finally my request was honored. Learn from my mistake, and don’t accept what’s working for “everyone else” if it isn’t working for you. Life is too short and each day a gift. Why not live it with as many tools in our toolbox that we can gather?