When I was in inpatient physical therapy in 2015, I had already been diagnosed with MS for three years. I never received any physical therapy before because I did not have health insurance. I was able to get DMT which stopped the progression and kept away the relapses. However, after a fall which hurt my back in 2014, I could not move very well. The subsequent lack of movement created muscle disuse atrophy, which is common in MS.
I had four weeks to return to approximately two years of functioning. I had very large gains at inpatient physical therapy, but the time was so short that it did not make a very long lasting impact. It would require many months of intensive physical therapy. I was deflated. I had Medicare Advantage which made the therapy visits a whopping $50 co-pay. Then, after scanning loads of online research I was introduced to the standing frame.
During my inpatient hospitalization, I was introduced to the standing frame on the first day. I noticed an immediate, positive sensation when I used it. I stood for about 15 minutes, then I started noticing that the circulation to my legs improved. The next day I noted that the positive impact increased my performance on the physical therapy bike. I was discouraged when I asked for more standing frame time. They told me it was important that I begin standing up on my own, and I never revisited the standing frame again.
Typically used for paraplegics and quadriplegics, the standing frame is used to make the body as functional as possible for people who simply can’t be mobile. I learned that many people with mobility issues use a standing frame. I also learned of the many benefits, including preserving bone mass which is critically important as women age.
I wondered if it would work for me, so I consulted with the physical therapist who thought it would be a fantastic addition to my recovery process. After many hours of insurance research, I found that getting the standing frame approved would be quite difficult and could take many months. Through what I would consider a “miracle” I was provided the funds to buy this critical piece of equipment. In the process, I also learned that there are many places who offer donated equipment carry standing frames.
When the standing frame was delivered, I was taken aback as to how it looked in my home compared to the hospital environment. It was a HUGE contraption which literally took up the entire dining room in our home. It looked daunting but I was ready. It took some sort of finagling to get me on the thing from my “sit to stand” transfer device. It was actually scary every time I try to get on it. It required excessive help from my husband and at certain points he had to actually lift me on the device.
As scary as it was some days, it didn’t take long for this equipment to start making me feel like this was the answer to my prayers. I stayed on it for 10 or 15 minutes. My standing frame came with an “A Glider” – a helpful tool to allow your arms to move in conjunction with your legs. I was too weak to use that feature for at least a month. Improvements where unexpected and happened more quickly than I thought they would. I saw increased strength and stamina within 10 days. I also had a greater range of motion in my legs and trunk. It became easier to transfer onto the device too. After a month of use, I was transferring on it like a champ. I learned that transferring off the device required stretching and a certain amount of rest time, but once I adjusted to that, it started working super well. I eventually started using it for “interval exercises” which immediately improved my cardio output and stamina. I had truly missed working out and this gave me the opportunity to work out again.
These are some of the changes I experienced:
- Greater lung capacity
- Improved muscle strength in both legs and arms
- Increased coordination
- Improved circulation
- Increased cardiac output
- Improved confidence and mood
- Increased stamina
One of the most surprising improvements was with my skin – it was more smooth and soft . After further research, I discovered that standing aids improved lymph node function. It was actually a visual confirmation that the standing frame was working. Another unusual improvement was reduction of motion sickness. I have dealt with pretty bad motion sickness since 2012. It made traveling in the backseat of a car impossible. Since my wheelchair attaches to the back seat of the van, I have no choice but to travel in the backseat.
After about eight weeks of standing frame therapy, I was sitting in the car without motion sickness. What a wonderful unexpected improvement.
Like everyone’s experience with MS, mine is unique. In my particular situation I have very weak legs that make it difficult to work and move. In my case the standing frame trains me to stand up and get ready to walk. In the case of the others, it may serve to improve overall function from the general benefits of standing.
About two weeks ago, I stood for the first time independently. From my “real” chair, I grabbed the arms of it and stood straight up. Where to next? WALKING!
In May 2015 I did not believe there was any hope that I could really walk or stand again. I credit my MSpals and the consistent support they offer with my ongoing recovery. I use my standing frame and physical therapy exercises every day without fail, and I notice improvements every single day. I had such a positive experience I really become an advocate of the standing frame. In fact, one of our other MSpals administrators, Jessica was able to get a standing frame and experienced improvements as well.
There are doctors who tell us all the time that there is no room for improvement when you have MS. My experience proves them wrong. Never stop trying to make your life better.
Here is some research that supports standing:
If you’re interested in a standing frame ask your PT. If your insurance doesn’t cover it or if you lack the funds, there are options with assisted equipment donation groups.