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Ataxia Support Network

My Story


#1

Hi, my name is DJ and I am 78 years old and I live in Oxford, NC. I have just joined this network. I hope I can meet friends.

Around 2010 late in September, I started to have tremors in my hands that would last awhile and go away, some time for months and months but they would always come back. I was told they were non-epileptic seizures. No cause was ever found so no meds were ever given.

In September of 2014, I was in my doctor’s office and I had a seizure that put me in the hospital for a good part of the day. I remember having nurses and my doctor around me and a nurse saying I can’t get a pulse. Later in the hospital, I lost consciousness again and woke up with my clothes gone. Later my wife came to see me. My eyes were wide open with no recognition. Again nothing was found and later that day I was allowed to go home.

Later I was sent to Neuroscience at Duke and kept overnight and was told I have non-epileptic seizures. Over the years they have been called, tremors, non-epileptic seizures, conversion disorders, involuntary movements, and psychogenic movement disorders. I also have Sleep Apnea and after 8 sleep studies the doctors call my sleep apnea complicated.

It has been more than eight years I have been trying to find out what is causing these tremors, spasms or seizures. During the summer and fall of 2015 into 2016, for about six months my health deteriorated so badly that I was confined to use a walker inside of my home and a wheelchair outside of my home. MRI’s and other tests showed nothing abnormal until I went to see a new general neurologist that specialized in diseases other than nonepileptic disorders. The doctor told me my symptoms represent an involuntary movement disorder, which is sometimes also called a functional movement disorder or abnormal involuntary movement. The dendrites in my brain were disappearing and scattering and with therapy, it will bring them back. We discussed treatment for these symptoms by trying to learn to better control my body’s physiology through techniques including biofeedback, and working with Physical Therapy, Occupational Therapy, and Speech Therapy, to retrain my brain. I had many symptoms of MS, PD., and other diseases, I have a problem with my brain that was causing the problems I was having for the last eight years. The therapy worked for a while but the spasms always come back, and when the symptoms return they are always worse. I continue to do exercises.

Every time my movement disorders start again something is different, they are far worse. I have trouble with my speech and I get very fatigued and I am always cold. I am experiencing more weakness and sometimes I can’t control my arms and legs. I now use a walker. My left leg often gives out when I walk a distance of only a few feet. Also, my legs often knock together or go up and down uncontrollably. Unexpected touch or a loud noise will bring on a movement disorder. Today as with any of my medical problems, being cancer free for 13 years, my involuntary movements with the dendrites not making connections with my brain stem, and my sleep apnea with my small airway disease, keeping a positive attitude is most important. Attitude is everything.About the New Member Introductions category


#2

#3

:slightly_smiling_face: DJ, you have much in common with the rest of us, not that it’s any comfort but you realise you’re among friends. Despite there being such a wide disparity in the type, or way in which each of us has contracted or inherited ataxia, we are ‘birds of a feather’ :blush: xB


#4

Thanks Beryl, I have really enjoyed this network and have learned a lot!


#5

DJ, welcome. It is good for all of us that you joined and told us your story. We all share your frustration, and it is so good to gave others who really understand and empathize. I know that I have learned a lot here, too.


#6

Thanks, Linda4, I always hear all around me “How do you feel”? or “How are you”? Most of the time I try to say., “It is always a good day, some days are better than others.”


#7

Welcome. The more I hear others’ stories, the more I realize I have in common with them. It makes me feel so much better when all the doctors look at me and don’t know what to do :slight_smile: I read the part about your leg giving out after a short distance and it made me smile because that’s what mine do and very few understand me when I explain it. Just know you have someone out here who completely understands and is here to listen! Again, welcome.


#8

Hi Spritdarter, you are so right. If you want a good laugh. The next time you go to a doctor and the door is closed waiting for the doctor. When he comes and knocks on the door say “Who is it?” My doctor never stopped laughing. Have a great day.