A few days ago I went to see my doctor so that I could give blood to a national database. This blood bank makes my blood available to any doctor who wants to perform tests to help with the advancement of education on dystonia. This being said, my doctor stated that there are no existing advancements in the studies and that there are no existing clinical trials being done for dystonia. Funding and participants are an issue.
To see if there are any clinical trials in your area: click on the button below. When searching for dystonia, I did come across a few trials being done. I truly believe that if all of us who have dystonia, join forces, and contribute to science we may be able to find something that helps this rare condition become bearable. We may even find a cause. But for this to happen we need funds, time and people. I don't think anything will be found overnight but over the next few years I do believe if we push, we can find something better than what is being offered.
On another note...I went to an acupuncturist in my area today. This was the first time I had ever gotten acupuncture and I was ready for whatever they had to offer. I walked into this community facility with an open mind. The waiting room was very homy and welcoming. As I walked in, I was greeted by the receptionist. She was one of those nervous types that kept on talking but she made me chuckle as she walked me through what to expect on my first visit. I decided to try acupuncture seeing, as though, the dystonia in my hands has progressed. My left middle finger has not been cooperating lately. It has a mind of its own. The pain has increased as well making typing and other activities difficult. My main dystonia is lingual but they did diagnose me with dystonia in my hands and just until about a week ago, I never experienced any serious symptoms. Now that I am done with that tangent, lets proceed to what I experienced at the clinic...
As I waited in the lobby, the acupuncturist came out and greeted me. She was in her mid thirties and had a welcoming smile. She was very laid back and wore a blue and white hippie dress. She viewed my paperwork and asked what I would like to accomplish with the session. We talked about how I wanted to minimize the pain and discomfort I was experiencing in my hands, lingual area, back and how I recently developed chronic nausea. She nodded while taking quick notes and advised me to find a chair in one of their 4 rooms and to make myself comfortable. She told me, she would find me in a couple of minutes. As I walked around, all I could see where these recliners. Each one had a different blanket over them in different colors. The first one I spotted was in a large room already with a couple people sitting with their heads back relaxing. I liked that chair because it had a baby blue blanket over it, but I wasn't sure I wanted to share this experience with anyone else, as of yet. I found an empty room and sat in the big recliner. The chair was so comfortable it just sucked me in. The fabric was soft and delicate on my skin. After 2 minutes she came over and had me put my belongings in a little, red, plastic, box. She made sure I was extremely comfortable and made sure I was ready to start the procedure. I was ready. As I closed my eyes, I felt a minuscular pinch in my arm. Then more pinches in my hand, legs and soon I was drifting away. My eyes became very heavy and I felt like relaxation had totally consumed my body. For me it was a very bizarre feeling. I have a tough time relaxing and when I feel forced it sometimes makes me nervous. I kept telling myself that I needed to relax and enjoy the moment. And that is exactly what I did, even though, I would come back to reality once in a while and had to train myself to going back into relaxation mode from time to time. The 45 min session was finally over and the needles were removed. I felt refreshed, able to speak and minimal pain. The pain I was experiencing walking in, before the acupuncture, was severe in my back, hands and lingual area. But that has substantially reduced and six hours later, still feeling great. I do advise that acupuncture is done on a day when sleeping is ok. I took several naps after the session and also lounged around all day. I did hear that everyone has different experiences, but I wanted to share mine of having fatigue. Overall, I recommend acupuncture for those who are stressed, in pain and need to relax. Below is the link to where I went to receive my acupuncture, in case anyone is in the area. :)
Also, this week a lot of reflection has been done on my part. I have realized that......
To see if there are any clinical trials in your area: click on the button below. When searching for dystonia, I did come across a few trials being done. I truly believe that if all of us who have dystonia, join forces, and contribute to science we may be able to find something that helps this rare condition become bearable. We may even find a cause. But for this to happen we need funds, time and people. I don't think anything will be found overnight but over the next few years I do believe if we push, we can find something better than what is being offered.
On another note...I went to an acupuncturist in my area today. This was the first time I had ever gotten acupuncture and I was ready for whatever they had to offer. I walked into this community facility with an open mind. The waiting room was very homy and welcoming. As I walked in, I was greeted by the receptionist. She was one of those nervous types that kept on talking but she made me chuckle as she walked me through what to expect on my first visit. I decided to try acupuncture seeing, as though, the dystonia in my hands has progressed. My left middle finger has not been cooperating lately. It has a mind of its own. The pain has increased as well making typing and other activities difficult. My main dystonia is lingual but they did diagnose me with dystonia in my hands and just until about a week ago, I never experienced any serious symptoms. Now that I am done with that tangent, lets proceed to what I experienced at the clinic...
As I waited in the lobby, the acupuncturist came out and greeted me. She was in her mid thirties and had a welcoming smile. She was very laid back and wore a blue and white hippie dress. She viewed my paperwork and asked what I would like to accomplish with the session. We talked about how I wanted to minimize the pain and discomfort I was experiencing in my hands, lingual area, back and how I recently developed chronic nausea. She nodded while taking quick notes and advised me to find a chair in one of their 4 rooms and to make myself comfortable. She told me, she would find me in a couple of minutes. As I walked around, all I could see where these recliners. Each one had a different blanket over them in different colors. The first one I spotted was in a large room already with a couple people sitting with their heads back relaxing. I liked that chair because it had a baby blue blanket over it, but I wasn't sure I wanted to share this experience with anyone else, as of yet. I found an empty room and sat in the big recliner. The chair was so comfortable it just sucked me in. The fabric was soft and delicate on my skin. After 2 minutes she came over and had me put my belongings in a little, red, plastic, box. She made sure I was extremely comfortable and made sure I was ready to start the procedure. I was ready. As I closed my eyes, I felt a minuscular pinch in my arm. Then more pinches in my hand, legs and soon I was drifting away. My eyes became very heavy and I felt like relaxation had totally consumed my body. For me it was a very bizarre feeling. I have a tough time relaxing and when I feel forced it sometimes makes me nervous. I kept telling myself that I needed to relax and enjoy the moment. And that is exactly what I did, even though, I would come back to reality once in a while and had to train myself to going back into relaxation mode from time to time. The 45 min session was finally over and the needles were removed. I felt refreshed, able to speak and minimal pain. The pain I was experiencing walking in, before the acupuncture, was severe in my back, hands and lingual area. But that has substantially reduced and six hours later, still feeling great. I do advise that acupuncture is done on a day when sleeping is ok. I took several naps after the session and also lounged around all day. I did hear that everyone has different experiences, but I wanted to share mine of having fatigue. Overall, I recommend acupuncture for those who are stressed, in pain and need to relax. Below is the link to where I went to receive my acupuncture, in case anyone is in the area. :)
Also, this week a lot of reflection has been done on my part. I have realized that......
Life becomes almost perfect when you accept yourself the way you are and embrace what life has given you. In doing so, those around you embrace all those things that make you who you are
I hope you all can take something away from my day and my thoughts.
Thank you
Thank you