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!
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!