Trust Your Gut – Take a Leap
Since I was diagnosed at 36 with MS, my plans changed for the care of my MS. In the beginning, I had a general neurologist, who handled all kinds of neurological disorders, with MS being just one of them.
He seemed to have the right answers at the time, as I didn’t really know anything else about it, and I thought it was the end of the world for me. It was a time of depression, and no hope. I didn’t really know what was on the horizon in terms of Emma‘s research and it is a whole New World for me. One that I did not know how I was going to manage. My life will never be the same.
Fast forward to a few years later, and a couple of disease, modifying drugs later, one a self injection 4 times a week that left me with welts I’d have to avoid at the next injection. The other was a pill that I would have to swallow twice a day that left me with itchiness and flushing. This was all that was on the market before my IV infusion twice a year that’s pretty hands off and has kept my MS in remission. The doctor that did this was Dr. Thomas, at Hackensack University medical center. Once I changed my care team, my MS went in remission, and I was able to get my life back, albeit one small step at a time.
Dr. Thomas took a look at my cervical MRI, which was never taken look at before, just the brain scan, and saw significant activity when I came for my first visit. That’s when we changed my drug. He gave me a few choices, which I wasn’t given before, and I don’t believe there were options at that time. I started Đoković as soon as it was on the market.
I also started physical therapy, and soon I realized that I could not drive safely anymore with my right foot on the accelerator and controlling the brake. I did my research and found out about hand controls and had my car modified. I have been driving independently ever since once again.
Dr. Thomas also gave me the opportunity to be a group leader at a new MS society chapter that was opening up at the facility, and, of course I wanted to serve. I had to give back since my life was given back to me.
But when the pandemic hit, it hit Bergen County hard. Everything sort of shut it up, and the group could not meet weekly in person anymore. The community room was shut down, and we went virtual.
In a previous post, I was kind of toying with the idea of saying some thing about how difficult it was for me to be a group leader in my home environment as a small thumbnail on zoom. I didn’t feel that I could serve in this way, and I to say something. I had my follow up appointment with him. I mentioned to him the difficulties of doing the zoom call in my home environment with my son, trying to get attention every so often, and being at the dinner table. It just didn’t work for me anymore. He said he completely understood. it was no big deal. Just like I had thought in my mind that it was going to be a bad thing, it really wasn’t after all. It was all in my own mind. I said that I would serve again once the meetings came back in person. It’s how I can give back when my life has been given back to me by Dr. Thomas.
And yesterday I had my Botox visit at JFK rehabilitation center down in Edison. It’s about a 55 minute drive for me. I could probably go faster, but I’d rather get there in one piece. It was a rainy day, and I would have to unload my scooter from the trunk and ride on in. He is in the back of the facility, Dr. Escaldi, so walking was not an option.
The day before, I decided that I did not want to get my injection. Since I had my ankle surgery last year, I have really amped up my bodybuilding at the gym, and I really thought that sticking a toxin in my body to kill the nerves in the muscle to stop them from being spastic was counterproductive. In the beginning, when I went, I would get four files. I had Restless leg syndrome, and my leg would just lock up. I’m in a much different place now, and my hamstring and quadricep are getting more balanced every day. Today is leg day actually at the gym, so when I finish this post. I’m going to do my four exercises, leg press, make extensions, leg curls, calf raises, and maybe some hip abduction and hip flexion on the cable machine if I have time. That reminds me to put on this ankle cuff on the floor behind me. Planning has been a huge help for me especially this early in the morning.
When I told the girl of my plan to tell Dr. Escaldi, she seem to be pretty happy about it. She just put the medicine on the machine that usually detect my nerve signals, and said good I can hold this for the next patient. When I came into the facility, I had never seen so many people in the waiting room. It seems like more and more people needed their help. I didn’t feel like I was in the same place anymore when I had started
When Dr. Escaldi came into the room, he seemed pretty content with my decision that he had heard about in the hall. He just had me walk and do an evaluation, along with the interns that are always there with him. And he agreed that my knee hyperextension was better than it used to be, but of course it’s still there. I have a lot of work to do. This did not happen overnight to me. And being walked in a brace did not help atrophy.
I will never know how much damage MS has done that is not correctable, unless I keep eating, clean and exercising hard. I have come along way, and I am glad to have a team that is knowledgeable in MS guide me on my journey. Never accept less than the best when it comes to your care for a chronic illness. You deserve to live with hope.
