Taking Back Control with Assistive Devices and Physical Therapy
My journey in 2017 with MS. Working full time traveling as a nurse consultant for a great company. I noticed when I went to the gym that I could no longer walk the treadmill without holding. I would stumble and fall if I didn't hold on to bars. I didn't really think anything of it at the time. I would leave once a month to go home, and I noticed when walking I was becoming unsteady so I would walk pulling a small rolling bag to steady me in the airport. That worked for a while but then in the airport I started falling up the escalator several times and thank God, I didn't hurt myself.
When I received my MS diagnosis
At home I would fall going to bathroom, and sometimes trying to clean the bathtub and it would become challenging to get up. I told my sons, and it didn't sit very well with them. I became very ill, and couldn't walk or get up out of bed. They got me to a neurologist, and he diagnosed me with MS. I had tinnitus so bad I could not lift my head nor could I use a cell phone without becoming nauseated and dizzy. After that bout was over, I had to go to Physical Therapy. I wasn't supposed to drive myself, but I grabbed a cane and drove myself anyway. They chastised me at PT for doing that, but I didn't have any other way to get there. I was on short-term disability, and thank God again, for I only had to pay $35.00 each visit.
Even after physical therapy, I remained unsteady
After 8 weeks they sent me to DME store for a rollator and told me not to go anywhere without it. My insurance paid for it that was in 2018 and yes there was a co-pay. I still kept falling at home and my sons decided that I could not live alone so my oldest son said it would be best to come live in Columbia, SC with him and my lovely daughter-in-love. I did and even though I had the rollator and nice hardwood floors to ambulate on my gait became more unsteady. I guess I was having another bout with MS, or it was progressing faster than I had hoped for. My daughter-in-love would take me to my appointments and to the store. Well, the neurologist there decided I needed more physical therapy and sent me to PT that specializes with MS patients, because this hospital was not in network, I had to pay $107.00 2x a week. I was still on short term disability. This time 12 weeks of PT.
I worked really hard in this session of PT
I was working my but off because I wanted to walk with a cane again. They also had thought about fitting with an assistive device for my left leg due to foot drop and me dragging left leg. I was not having that, so I worked even harder. By the 10th week I was doing so well with left leg I did not have to have device for my leg and balance improved and gait. After 12 weeks the rollator was recommended again. My son got a promotion on his job and guess what? It was time to move again. Now I would have both of my sons in the same state and only living an hour apart. I went back to my Neurologist I had there in the beginning in Atlanta continued my infusions of Ocrevus. Well, after 3 years and starting on Medicare, I'm back in PT again.
I shared my goal and mapped out what I needed to do to get there
At this rehab facility they asked me what my goal was, and I told them to walk with a cane. They did my evaluation and she told me it was feasible, but I would have to work very hard to obtain it. I told her I was willing. She even gave me exercises to do at home. I can tell you this was the most difficult session I have ever had. They worked with balance, on gait, upper and lower body strength and equipment different. I had ordered a cane and they wanted to see it and how I handled myself around their track with the new cane before recommending it. At the end of my 14th week, they said it was a great cane and I could use it.
I'm so proud of my hardwork
I have graduated from my rollator back to my cane and I am doing an awesome job. She also made me promise to use the rollator if I am feeling unsteady for safety measures. I did and I am loving my new cane and new freedom. If I can walk in Sam's for 2 hours using cane, you know it's alright. Ya'll I finally made it. I hope this is a story of inspiration to others and can help you get on the path to healing and using assistive devices. Everyone is different and needs are different, but with PPMS this was my way of taking back some of my freedom and control. Thank you for reading my story.
Team Member Cynthia
Were you misdiagnosed with something else before receiving a MS diagnosis?