Saturday, August 15, 2009

Dystonia and Dysphonia

Hi All!

It is Saturday and today I have all the time I want/need to write my blog and to read other blogs! Heaven!

Yesterday, Miss Cleo got her teeth cleaned. She also had a small tumor removed from her right front shoulder. I am happy to report that she is doing well. She was VERY loopy yesterday when I picked her up. She would walk and stumble and fall over. Not too much fun to watch. She was also very hungry but couldn't do the dry food - which is all we feed our cats. I pulled out some salmon and she feasted the best she could. At one point she just laid down on top of the plate and licked up what she could reach. Poor Miss Cleo!

Today she is better - more stable. I just gave her some pain meds which I hope don't make her as loopy as she was last night. For the record - it was easier giving her meds than Skor.

On to today's "real" topic.

As I am sure you know (and are probably tired of hearing), I have Spasmodic Dysphonia. Abductor Spasmodic Dysphonia to be exact. This is a neurological disorder which causes the muscles controlling the vocal cords to spasm uncontrollably. This, of course, makes speaking pretty much impossible.

Well, Spasmodic Dysphonia (SD) is a focalized form of Dystonia. Dystonia is basically the same neurological disorder but affecting other parts of the body. Most people with Dystonia have Cervical Dystonia which is the neck and shoulders. The dystonia is so bad that people end up literally twisted by the spasms. It is heartbreaking to see people all twisted AND dystonia is generally very, very painful (SD is generally painless).

Anyway, my main point is that Dystonia and SD are related. Because of that, many people with SD are also very involved in Dystonia awareness. In fact, many people with SD also have Dystonia somewhere in their bodies.

My speech pathologist gets this magazine which is put out by the Dystonia Medical Research Foundation.

Working for Susan allows to me read this magazine (with her permission of course!). So - I brought it home this weekend to read it. I came to a couple conclusions while reading and I would like to share them with you.

First - God bless all people with Dystonia. It is a terrible disorder that is often very painful.

Second - thank God for the scientists who research Dystonia. They have found several ways to manage the disorder - including Deep Brain Stimulation (DBS). DBS is where electrodes are placed in the brain in the areas where the spasms originate and then hooking the electrodes to batteries. The electrodes then send out electrical currents which basically disrupt the signals being sent by the brain to cause spasms. Most people I have read about with DBS are able to lead relatively normal lives after the implantation.

Third - there are a mess of studies about dystonia currently underway. In fact, I counted 18 listed in the magazine. With that much research going on there will surely be a cure found soon!

Fourth - a gene has been identified which is believed to be responsible for early onset generalized dystonia.

Fifth - dystonia is being researched using animal models.

Sixth - there was no mention of SD in the entire magazine. At first, this bugged me until I realized why. SD is very localized. Plus, there is no way to use animal models to study SD since humans are the only animals who speak the way we do. True, other animals have the capacity to speak (parrots, etc) but, they don't utilize their voices like humans so they can't be a good model for SD.

No gene has been located which is thought to be responsible for SD.

DBS isn't even considered for people with SD (as far as I know).

All of this sort of makes me feel like SD is the ugly stepsister in this process. Sure, it is hanging around but, it takes a back seat in pretty much everything. Now, I am NOT saying that research for dystonia should take a back seat to SD. I honestly think the research being done for dystonia is wonderful and needed since the disorder causes such pain. However, it would be nice to see just a little more done about SD.

SD is a real pain in the rear to live with. Sometimes I look at people with Dystonia and think, "At least they can talk!"

Then I realize that I am being foolish. Yes, these people can talk but they are physically "twisted" and in pain. Their plight is worse than mine. People must think that they are mentally deficient also because of their physical problems. God bless them all!

Trisha

Voice Update: A bit tired from the week but doing well. I have done my inhalation exercises and massage. I am sure that I could do a bunch more (Which I will try to do) but at least I am working on it!

3 comments:

noble pig said...

Keep researching, keep learning, keep writing about it...it will help others.

Mental P Mama said...

I cannot believe how much I have learned about it. And how prevalent it seems to be. Keep up the great work!

Irene said...

My dsytonia appeared out of nowhere 5 years ago. The medical profession tried to convince the psychiatrist that I had been seeing for 15 years on a weekly basis that I was delusional. All because they could not figure out what was wrong with me. They would look at me and say you tongue is not turning you are imagining it. My psychiatrist finally ended up telling them they were delusional. Anyway even after two neurologist dianosed me with dsytonia, it is mainly center in my tongue, but at times will effect my entire body, a third that a doctor send me to in an effect to see if she could help me, though she witnessed my tongue twisting out of control told my doctor I was delusional, at that point the doctor cut me off the medication that the previous neurologist perscribed so that I could sleep, as without it I would go days on end without sleep. When my psychiatrist moved her practice to San Diego, she referred me to a PHD who she felt would be a nice fit. As it turned out she to had once suffered from dsytonia, only with her she woke up one morning and had lost her voice. Now this is a PHD and doctors tried to convince her she was crazy. She knew she was fine mentally. She eventually turned her back on modern medical and turned to alternative medicine. Living in Seattle we are lucky to have Bastyr University here, and they offer excellent alternative care, at low cost, she was lucky enough to have as her acupuncturist the women that founded Bastyr University and she now has her voice back. She literally begged me to seek help from Bastyr as medical professional after medical professional continued to treat me with unprofound cruelty. I did and I am happy to say that I have been going to weekly sessions of accupuncture for about a year, about 6 months ago I started seeing a master who sees patients once a week, and things really started turning around for me. I can finally see light at the end of the tunnel. I have been able to cut down on my medications. I am no longer bedridden. I am able to care for my home, do some of the cooking. And there are definate signs that my condition is reversing itself. I strongly encourage anyone with a neurological illness to consider accupunture, avoid chiropractors that offer accupunture using an electronic device, seek out the real thing, a trained accupunturist, that using actual needles, and remember like with all doctors some are not as good as others, get recommendations. But it is a very powerful medicine.