WE MOVE
204 West 84th Street
New York, NY 10024
E-mail: wemove@wemove.org
wemove.org • mdvu.org
Keep Pushing
Hang in there and don't give up! Reach out to others who are struggling, and you will be blessed by sharing with each other.
– Beth Orf
I'm a 46 year old female, married 22 years with three children. I was recently diagnosed with a Hemi-Dystonia, after many different doctors and tests. I came down with a severe case of the flu a couple of years ago, and my left eyelid started spasming non-stop. At first, it was ignored and passed off as a tic, but as time went on, I started seeing double out of my left eye, and the left side of my face started spasming and became numb.I went through a round of tests for a stroke, etc. As months went by, I became very light sensitive and had piercing pain in my left eye. I was then treated for migraines, as well as possible siezures. None of the meds helped. Eventually, my co-workers and family noticed my head would nod without me realizing it, and my neck would feel really stiff. As time went on, me left arm would get very stiff and spasm, and eventually this went down my right leg and affected my gait significantly.
Today, I have periods where my entire body will tremor, and I have difficulty walking normally. I have a lot of problems with balance and coordination, and my depth perception is completely inaccurate. I cannot drive at night, because the double vision in my left eye causes me to see streaks of light that are startling and blinding. It is difficult for me to drive long distances in the day because my left arm becomes very weak and tired. We love to boat and camp as a family, and I do not know if I can do that anymore, between weakness and being uncoordinated. I had to quit my full-time job as a trainer at a large bank, because I cannot predict when I will have severe spasms, which are exhausting. Every afternoon I have to lay down to rest now, and this has been really hard on my family.
However, through all of this, I have joined a fitness club and workout 3 times a week for strength training. I also work there 2 days a week, 3 and 1/2 hours at a time so that I get a free membership. This has become my physical therapy, and I am determined not to give up the things that I enjoy or stop "moving". If I give up, I know my muscles will just atrophy quickly, and I have many years ahead to enjoy with my children, and hopefully grandchildren.
I rely a lot on faith in God to get me through the most challenging activities. I recently went through a cave with over 600 steps, because I was determined not to let this keep me from living a full life as long as possible. I just kept remember..."I can do all things through Christ who strengthens me." (Phil. 4:13). And I made it through the cave, with some arm assistance from my teenage son and my husband!
I've found that I can still enjoy life as long as I realize my limitations and take time to rest. It's also important to find others who understand and can be an encouragement or sounding board. I have found that reaching out to others with various chronic illnesses helps me take my mind off myself...
