Dystonia Neuro Movement Disorder

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Comment by beka 1 day ago

If you go to foundationgroups.com, look up the DMRF and you will find that only 31 cents of a dollar has gone to dystonia. And there's some 6 figure salaries at the top of DMRF.

There is the startings of a new group for dystonians, by the people, for the people.
Any suggestions would be greatly appreciated.

Lizabeth

Comment by beka 1 day ago

Myrna Dettellbach would like to connect with someone who also has anterocollis and receives Botox. Her email is myrnadett@yahoo.com. Please help her out !

Comment by beka 1 day ago

Got this from an ICU RN :
Oh my, LOL. I so enjoyed your article and your sense of humor.
I was a full time critical care nurse and can identify with each of your scenarios. I love the nurse in scrubs and your frustration over the pharmacy lacking the antibiotics. I often say "Guys we can launch a jet from England Air force Base ( in Alexandria, La) and bomb Iraq in a few hours, yet we cannot in this day and age have..... On hand".

Your issues with Dystonia caught my eye, as I have something weird going on, and some of the s&s sound like what you described. Years ago I had a 2 level foraminotomy after a car wreck. Last year I ruptured a cervical disc, which healed. I stayed out of work for 6 months, had issues with walking etc. My great neurosurgeon, from Houston Texas is so wonderful, my poor family doctor is ready to choke me, he will not say this but it is evident. I insisted on returning to work. It was great for a few weeks, then the spasms, pain and weird symptoms began. I have not confessed to the G.P.
Luckily I landed a job teaching at a local university and hope the issues resolve with a less stressful job.
I can be walking, and my right hip will twist and pass up the left side of my body. My thoracic area will spasm and I think it will pop my spine. LOL Oh my, now try to explain all of this, and much more, to
A doctor. My saving grace is baclofen, and prayer. I am far from well, but it makes the spasms somewhat tolerable.

Thank you for writing your story, I will look into this disease process. Thanks for the laughs as well. I wish you well.

Freida

Freida Fontenot, RN
LSU- Eunice, La.

ffonteno@lsue.edu

Comment by Canary3 on October 22, 2009 at 10:06am

No problems receiving care4dystonia website here in Detroit metro-area. Like new format,easier to use. beka when does your new book out? When do you find time? You are amazing.

Comment by noelv on October 22, 2009 at 9:53am

I have gone the entire gamut of treatment options: PT, chiro, acupuncture, and saw Dr McLaughlin, a top neurosurgeon who is the editor of the Neurosurgery Journal. I was hoping that the root cause was mechanical or physical that can be fixed. An MRI of my spine showed healthy disks up and down and good supply of spinal fluid. That's when a movement disorder was suggested. A kindly old neurologist in his 80s saw me and confirmed ST at the very least. He tried to treat me with Myobloc until I could get to a top notch neurologist. The Myobloc changed things but didn't abate much of my symptoms. By serendipity, my 25h college reunion came up and many of my friends are at Mass General and Harvard Med School. I got a neurological exam in the lobby of the Amerisuites and 3 days later I was making a trip to Boston for a full neurological workup including a brain MRI to confirm that there was no tumor, trauma, or aneurysm. I spent 2 hours with the top diagnostician from Harvard Med and he identified ST, blepharospasm, and oromandibular plus right arm involvement. Since Boston is 6 hours away, they suggested that they not treat me on a regular basis because the best places are an hour from me: Columbia Presbyterian, Cedars-Sinai, and UPenn. I got into Columbia the next week and had to wait for my current Botox to wear off until I could start treatments. It's been 2 years and I am still unable to work but my qualify of life has improved. Before Columbia, I was flat on my back all day in pain. I was stressed out because I couldn't be at my computer repair store 8 hours a day and my lease had another 8 months to go and closing it was a daunting task. I spent an entire Christmas on my back. Now, I still can't work without pain which stressors magnify. I can get around, drive a few minutes to run quick errands, meet friends for lunch, and enjoy a decent quality of life. Not what I had when I was healthy but way better than being a vegetable. Be active in finding the best care for you. If I had to endure a 6 hour one way drive every 3 months to get quality care, I would do it. Even my trips into Columbia, I turn into an outing since the endorphins are flowing in anticipation of getting treated. It'a an hour train ride and a 45 minute subway ride so the long day is broken up by something fun to do. Lots of things within a few blocks of a subway stop.
I needed some pain relief for the other muscles that react to the Dystonia so I looked for a Dystonia specific therapist. I couldn't find one so I helper train one. Turns out normal massage is not good for CD patients, the right method is counterintuitive to the therapists' training. My therapist now gets me about a week's worth of pain relief. I am not pain free but the pain level drops a couple of notches and I am thankful for that.

I urge everyone not to settle for the most convenient but to seek the best treatment. Chiropractic treatments are useless in dystonia patients unless some spinal problems were caused by the Dystonia. The root cause originates in the brain.

I am rambling but I want to emphasize that the euphoria one feels after feeling they got some help can be misinterpreted as success. Once it wears off, you are back to square one.

Comment by JOSE GARCIA on October 22, 2009 at 9:15am

I am a Chiro guy ;-), with Dystonia

I have 100's of hrs in post grad work in Neurology.
Personally I am happy if the patient with Dystonia, including myself has a decrease in pain and some improvement in range of motion. So far I have found that the results of chiro care have not been that great for me. That is why I study and take so many courses in neurology. Hoping to find something.

Beka, I remember when you went to the Chiro. Neuro. You were very supportive of his treatment. I don't know if you recall, I was the one who doubted that he could cure you.
As you know there is no cure for Dystonia, yet. All of the treatment choices available are for palliative care. Like you said " How can you reverse symptoms of Dystonia when you have no identifiable cause" I agree with you that would apply to all the treatment choices out there. Whether Chiro, Medical, Voodoo,...... ;-)

Have to keep a sense of humor. My best to you and thank you for all that you do. Jose

PS: If you are being treated by whatever method. As long as it is not causing you any harm and it is making you feel better or perhaps easing your symptoms, my personal opinion is go for it. Just use common sense. And share with others.

Comment by onmom on October 22, 2009 at 8:06am

What a week! It has been one thing after the other since Friday last week. Which of course sits right on my shoulder making the cd worse and worse. I swear I haven't had a decent night's sleep in...forever? Doesn't look like it is going to get better any time soon either...my younger son started getting sick in the middle of the night last night - fever, coughing, vomiting - which means I need to take a third day off so far this week. And, the biggest stress, I finally got the approval for Botox, but can't get the neuro's office to return any messages (left 2 so far) on booking an appt for the clinic next week.
How does everyone handle stress??? I'm getting through, but suffering physically. Where is the rewind button???

Comment by beka on October 22, 2009 at 2:27am

Hi TJD - I went to a chiro guy a few tiems and they promised me the same things that you mention - how can you reverse symptoms of dystonia when you have no identifiable CAUSE ? Everyone think about that line. unfortunately dystonia is what is..Many insurers dont cover chiro costs, plus think their practices can cause more damage to the spine. That's just my opinion. So, not sure if I would repeat my visits wtih them.
50-50 opinion about them among neurologists. Talk it over with your neurologist first.
beka

Comment by TJD on October 21, 2009 at 9:06pm

Has anybody else ever experienced care with a neurological chiropracter. I would really like to know. I am going to this type of chiro and seems to at least offer some relief. He states that he can keep the dystonia from getting worse and even reverse the effects I have so far. He seems to help but I would like to know if I should be seeking other care as well. I asked this question before and nobody answered. Thought maybe I was posting things wrong. Can't find many answers from Dr.s so would like to hear something from all of you.

Comment by Canary3 on October 20, 2009 at 10:22pm

Dear Robin. Living in the now,so very important. I have limited ROM of Lft. should,arm and have been living in fear of Rt being effected soon. But after viewing your blog,you have inspired me to keep pushing harder, and harder. Daily, you try to keep one step ahead of your muscle spasms,which in it's self is exhausting,and yet you still inspire us with your beautiful art. All I have to do is view your blog and I'm out in Ariz. with you near your beloved lake. Thank You

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