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Mobility Monsters

@cynsagi
Mobility Monsters

Multiple Sclerosis was not something I anticipated dealing with. However, around 2017, I started experiencing symptoms. Tingling, numbness, burning - my arm was a mess! Four years later, I was finally diagnosed. In that time, my mobility has waxed and waned. Spasticity often keeps me from being able to do anything - sometimes causing so much pain that I feel like I could vomit, cry, or both. I take medication, stretch, do physio exercises prescribed to me, and take supplements- all the things that are within my possibility. Sometimes, I use a cane when it hurts or my balance becomes too uneasy. It is inconsistent, and I wonder if this is my future. Each time, it gets more awful. 

Around May of last year, I started to really suffer from spasticity. I went for physical therapy, and the doctor performed all the routine measurements. I did not realize how limited my ability to bend my leg was until it was measured. It was quite a shock! My strength was not there at all. It was a real shock to see the shape I was in. After a month or two, I started to see an increase in my ability to stretch. I gained some strength back too, which was great. Did it take away my spasticity? No. Did it help me find ways to work with it? Yes. 

I learned a lot of different things to do that could help me with walking, foot drop, spasticity pain, and building up my core muscles. I also bought some apparatus to help stretch since I can no longer push my quads alone. I have hand exercise tools and exercise bands to build strength. I also learned some tips to help me while in the classroom teaching so I can stretch while I work. 

After doing this for a while, I started doing it at home. I also decided to buy a three-wheel bicycle since I no longer trust my balance enough to ride a two-wheel. It would be safer for me to get some movement. I live in a gated community, so there is very little traffic. However, Florida is hot and temperamental. The heat increases my spasticity, so I can only ride a bicycle here in the winter. 

I then decided that because I had always enjoyed Zumba classes, I would start retaking them. I went to one and bending and staying coordinated was difficult (thank you, cog fog). I soon realized that I could not keep up the way I used to, which would probably end in injury. I found out that there was a Zumba Gold class for seniors, people with disabilities, and otherwise unconditioned people. Finding a class to attend was hard, so I decided to become an instructor. I went through the training and started teaching it at my work and in my development where I live. I am not going to lie- there have been many times when I have not been able to do it. I am currently unable to because my spasticity has been so bad. I can barely walk, never mind teach a class! I have been doing stretching exercises and some Chair Zumba to stay active. 

It is sometimes difficult to get away from the Mobility Monster. It keeps attacking us with Multiple Sclerosis. I am trying to fight this fella as much as I can. Some days, it wins, and some days, I win. I will not forget what my neurologist said when I told him I started teaching Zumba. He asked me to promise that I would share the importance of movement with others. He stated how so many people might need to become more familiar with the benefits of being active, both mentally and physically. While activity levels vary from person to person, just something can make a difference. While I cannot do a lot of the things I used to, there are some adapted things (like stretching and Zumba Gold) that I can do to keep myself moving. I hope to help others find their movement as well in my classes.

How will it progress in the next few years? I wonder? If I can continue working, I get more concerned about my limitations each time I have a setback. Still, I do take solace in the fact that I have some tools available to keep me moving. Whether that movement is walking to the mailbox, swimming, or making dance moves in a chair, they are all movements. Doing those little bits (and some days I do mean LITTLE) helps my psyche and gives me hope that no matter what comes, I have some form of movement to help me in this fight. 

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About the author

@cynsagi

49, US, RRMS, Ocrevus