Thinking Of Running A Dystonia Fundraiser On Long Island

After much research I still cannot find any fundraisers or organizations on Long Island for Dystonia, so I'm thinking of running one by myself this summer.  Since I've never organized one before, I reached out to DMRF to see if there's anything they can do to guide me.  They got back to me right away and told me that they'll walk me through the steps once I confirm what type of fundraiser I'm going to be organizing. Perhaps this will be the beginning of many other fundraisers that I'll be doing in the future. 

Road To Recovery

I'm going to fast forward to today, instead of going back to every detail of my past experiences.  I'm blessed and happy to say that my treatments have worked wonders for me.  I've been down to 11 shots for a while now and I've never been happier.  I'm able to bike ride again, type again, exercise again, and do all the things that I had to stop doing.  I had to take two years off from finishing up my bachelor's degree before my I was diagnosed because I couldn't type and it was getting harder for me to read my text book with my neck twisting and moving all over the place, but now that I feel good again I've gone back to school and I will be graduating this June.

Now that I'm back to exercising, yoga has been a huge addition to my daily routine.  I've been doing stretches and tried yoga many times before but when you're in so much pain, the last thing you want to do is move around.  It was very difficult for me to get motivated.  All I wanted to do was rest my head on a pillow and relax my muscles. I found a great yoga studio by my house, Harmony Yoga & Dance.  Contrary to what some people may think, yoga is not a relaxing workout.  My advice to anyone with Dystonia is to let your yoga instructor be aware of what you are, and aren't capable of doing.  A good yoga instructor will guide you into other poses that may be more comfortable for you, so you can still benefit from each workout like everyone else.  My yoga master, Mariko, not only listened to me explain my limitations, but also asked me to write it down for her so she could Google it herself and learn more about Dystonia.  By doing this, Mariko made me feel part of her studio, and not isolated and different from the others.  There are many poses that are challenging in yoga, but the Botox has allowed me to push myself further without losing my balance like I used to.  By meditating and breathing through each pose, I feel empowered when I'm able to keep up with everyone else and get through each class.  When I'm not taking one of her classes, I'm doing the workout at home.  My balance and strength has improved tremendously.

I always loved riding a bike.  I was in three bike a thons in NYC in the past, and enjoyed taking my son around the neighborhood and bike trails whenever we found the time. When I was at the peak of my Dystonia spasms, riding a bike became not only uncomfortable because of the spasms in my neck and in my shoulder blades, but dangerous because I would lose my balance.  My son never said anything to me, but I saw the sadness on his face when he would ask me to go out riding and I'd have to tell him that I couldn't because I was in too much pain.  After a while he stopped asking. Since my treatments I'm able to enjoy riding again.  When I told him that I was going to buy a new bike, he jumped in the car and went with me to pick one out.  We have been enjoying riding our bikes in the park and on the bike trail to the beach. I couldn't be happier and enjoying my life anymore than I am when I'm in this moment with him!!!! I can tell that he's happy too. 

Explaining Dystonia To Everyone Can Be Exhausting

Now that I knew I had cervical Dystonia and was getting treatments for it, I now had to explain to everyone who was there for me through all the years I was going through pain and searching for an explanation, what Dystonia was.  No one had ever heard of it.  I was asked to say it over and over again, spell it out for them, and then explain to them one more time what it was and what kind of treatment I was getting for it.  Some people were so glad that I was finally getting treatment, some made jokes to make light of it, and some made faces and tried to suggest that perhaps certain vitamins would actually work the same as Botox. LOL 

What bothered me more than the funny faces people made or the strange comments and suggestions they gave me, was that I had to tell everyone what Dystonia was.  Yet, I'm finding out that hundreds of thousands of people are suffering from this disease and getting treatment for it.  After speaking with Dr. Schwartz and doing more research online, people are being misdiagnosed every day.  There are a lot of doctor's out there that have never heard of Dystonia.

This baffled me!!!! If someone comes in your office with a condition that you're not sure of, I can understand that you try a couple of different treatments to see if you can narrow it down.  However, if that patient still isn't feeling better and their conditions are either the same or getting worse, one would think that the doctor would take the time to reach out to another doctor or refer you to another center and see if there's someone else who can put a name to what you have. One of my misdiagnosed experiences was when a spinal surgeon, after reading an x-ray he took of my neck and spine, said he didn't "see" anything on the x-ray but since I was feeling spasms he wrote me a prescription for a muscle relaxer and physical therapy.  Why didn't he think to send me to a neurologist?  It was obvious that if nothing showed up on an x-ray that it could be neurological, right?

That's when I went online to DMRF, Dystonia Medical Research Foundation, and ordered pamphlets to mail and handout to doctor's offices, or to anyone who never heard of Dystonia.  My thoughts were that if I could make others aware of what this debilitating disease was, I could save another person the heartache of being misdiagnosed and have them on the road to recovery quicker.

I went online and found this..."As many as 250000 people in the United States have dystonia, making it the third most common movement disorder behind essential tremor and Parkinson's ..."

 

Dr. Schwartz...My New Friend For Life

I was so anxious to meet Dr. Schwartz.  Both my husband and I had so many questions for him, and didn't know which to ask first.  He explained to us what Dystonia was, the different things that may have caused it, what treatments are out there, and how it's going to effect the rest of my life.  The bad news was that it's a disease and it's never going away, the good news was that with treatment, yoga, and meditation I could live the rest of my life comfortably.


After agreeing that Botox would be the best treatment to start with, he started the injections right there in his office.  He first had me do a couple of physical moves with my arms and my head so he could see the way my muscles were pulling, and he would know where to put the injections. My husband held my hair up the whole time, while Dr. Schwartz put 16 injections of Botox in my neck, upper shoulders and shoulder blades.  Since my muscles were so "active", the pain felt like someone was taking a lighted matchstick and putting it out on my skin.  I was told that as time goes by my muscles would start to relax and actually shrink after time, which would help with release some of the spasms.

The whole visit was over an hour, but the treatment was over in less then 10 minutes.  I can't say enough good things about Dr. Schwartz.  He was very professional and took his time answering any questions or concerns that we both had.  His sense of calmness relaxed us and we never felt rushed or as if we were just "another patient" of his.  I can't believe I'm saying this, but I was already looking forward to my next appointment.  I guess I knew in my heart that this treatment was going to work for me.

Thank you Dr. Hainline!!!!

"Torticollis, also named Cervical Dystonia, is when the muscles in the neck twist and spasm, causing the neck to move in an upward position and lean to either the left or the right."

I was given the name of a neurologist who had helped my father in-law in the past with issues on his neck.  The doctor's name is Dr. Hainline.  His practice is in New Hyde Park in N.Y.

As soon as Dr. Hainline walked in the office, he asked me to come into the hallway and walk away from him  and then back towards him. He asked me to show him the tasks that I told him were hard for me to do without my neck going into spasms, like tie my shoe or try to find keys in my pocketbook without my head moving all over the place.  He told me to sit in the room while he conversed with another neurologist who had seen me moments before Dr. Hainline. She had written down all my information and concerns for him. Moments later he walked in, sat down next to me, and told me that I had cervical Dystonia.  Immediately I got choked up and tears ran down my face.  I finally had a diagnosis!!!! I wasn't crazy! This wasn't due to stress, dehydration or exhaustion...which were many of the things that other doctor's have suggested. I was told that this was a disease that currently no cure has been found, but I can cope and feel better with Botox treatments, yoga, meditation, and joining a support group if needed.

Dr. Hainline gave me the name of a neurologist who is one of the top doctors to see for Botox treatments.  His name is Dr. Schwartz, and his practice is in Great Neck, N.Y.  Dr. Hainline spoke very highly of Dr. Schwartz, so there was no hesitation for me to make an appointment and start my treatments.

Words cannot express what I was feeling after being diagnosed.

My Breaking Point

My neck was always stiff and turned a little to the left, but I was always able to manage it enough that people didn't really notice what was happening.  I would hold my neck with one of my hands, which would set off the "sensory trick" and my neck would instantly start to relax.  I always tossed and turned during the night because the muscles in my neck were spasming, so there wasn't a morning where I would get up and didn't have a stiff neck. In 2008 the spasms were getting worse and it effected my ability to do things with my hands.  I couldn't write or type without my neck twisting and making my head turn to the left.  I also started to experience jerking motions when I looked downward.  My neck would literally move up and down as if I was nodding "yes" to someone.  My husband would have to cut my meat for me during dinner, because I needed one hand to be resting on my neck (sensory trick) in order to stop the spasms. My balance was also being effected.  I had to cancel my gym membership because using any of the machinery became almost impossible for me. One day I  lost my balance on the tread mill, and I had to stop the machine immediately before I would have gotten hurt.  I left the gym in tears that morning.  I knew something had to be wrong with me.  I was tired of hearing from so many doctors that my muscles were just tense from stress, or maybe there were nerves that were pressing on a disc in my neck or back.  It's not normal to reach for a door knob and have your neck pull to the side and than upward, and it's not normal for your neck to move up and down when trying to tie your shoe.  I thought it was pretty disturbing that spinal surgeons, neurologists, physical therapists, acupuncturists, chiropractors, and other physicians all prescribed me pain killers and muscle relaxers before sending me on my merry way.

That's when I started to Google all my symptoms, in hope that someone out there has been experiencing the same thing as me and I wasn't crazy...because I was starting to feel like I was.