Thanks for the support

I just wanted to pop on here to thank everyone for their support. Without support, this condition would be even more difficult to deal with. The hardest lesson in all of this for me has been to learn to ask for help. I was reminded of this again today. My daughter and I have been at the neighborhood pool the past 2 days with the neighbors. It's been awesome. However, I got a little burnt on my shoulders and back because I didn't ask for help again. I can't even put sunscreen on my own shoulders let alone the back. I should have asked my neighbor to do it, but no. I was afraid even though I know she would have. Eh

Frustration

On top of everything else, I broke a toe on my right foot the other day. I'm just grateful it's not my dystonic foot. That would be miserable. Things have been better in some ways and worse in others lately. I was actually able to write a message in my grandfathers birthday card for the first time in a long time. That is huge for me. On the other hand, I've been taking more of my Clonezpam and even Vicodin lately for my foot. It has been curling very tight and is painful. I really need to get out more too. Excercise hurts but in the long run is very good for me. Walking just for walking sake is very hard, but when my daughter and I go to the animal park or Disneyland, I do better. I think it's the distraction. Guess it's good that I am planning a trip to Disneyland later this week. :)

Spasms

Lately I have been getting spasms in my left leg. It affects my lower leg from toes to knee. It can be very painful, but at least it doesn't last long. I had heard of Dystonic spasms, but hadn't really experienced them until lately. It's kinda like getting a Charlie Horse and a back spasm combined but worse. If you have ever had back spasms, you will understand. Not fun.

On another note, I'm having more balance issues again. My left leg has been a real problem lately. It curls almost constantly right now.

The news and stuff

It's been so great seeing so many stories of Dystonia patients in the news lately. First there was the lady on Oprah, then she was on the Today show and now I understand Dateline did a story on a boy who has it. This is AWESOME. We definitely need to get the word out there.

I wish they would do more on Focal dystonias. A lot of people don't realize I have it. They think of the cervical dystonias or the generalized dystonias, but forget about those of us with focal. It's just as hard for us. With my left leg being an issue, I feel like I am drunk half the time. I think people see me and assume I've had too much to drink. Ask my wife, I hardly ever drink.

I have been getting so frustrated again. I'm having to learn things all over again. Now that it has spread to the left hand as well, I got the botox this go around there too. It definitely took away the pain and makes typing easier, I now have the weakness to deal with. Before, I just switched to the left hand for everything. Now, simple things, like opening a can of Pepsi is a new challenge. I am amazed at those things.

And now, the new challenge. My 2 year old daughter is noticing that I can't keep my hands open. Whenever she tries to hand me things, my fingers just curl inward. She doesn't understand it. Try explaining that to a 2 year old. It breaks my heart because sometimes she is frustrated by it.

Well, time to hit the hay as 7am rolls around quickly. Hopefully sleep comes quickly too.

It's a good day!

Today is starting off really good. For the first time in a long while, my hands feel pretty good. I actually have pretty good use of both hands. I've been able to type easily without a great deal of pain. I just need to wake up so I can enjoy it. My daughter woke up an hour and half earlier than normal and I'm having a hard time waking up. Suppose I should just jump in the shower and go to the store. I still struggle with wanting to go out. The dystonia in my foot affects my balance. I'm very self conscious of it too. Because focal dystonia is not obvious to the normal person, I worry about what people think.I have to learn to get over it.

Life after botox ... woohoo

Thursday, I received my Botox injections after a 5 month hiatus. (Long story short... changed insurance and had to wait.) The effects are starting to kick in and I am so happy. :)

In the last few months, I had noticed that my left middle finger was getting stiff and in a lot of pain. Then, a few weeks ago, I understood what was going on. The tip of the middle finger started pulling in towards the palm of my hand. Yeah, one of my fears, the Dystonia had spread to the left hand as well. Just when I thought I had dealt with the worst part of this disorder, I'm thrown another blow. Depressed and frustrated, I started researching this. And after research and talking to my neurologist, found out that this happens to about 50% of the patients. I was so bummed. So, now time to learn again. However, after receiving the botox in that hand, I am doing pretty good. :) Thank God.

So, because of the hand, I have decided against having botox in my left foot. I tried a little last year, but it didn't affect it hardly at all. That plus the pain involved in the injections alone, I can't see that it's worth the chance of becoming immune to the botox.

Tonight, I'm feeling pretty good about things, but know that there are good and bad days, so enjoy the good ones.

From Jan 31, 2009

Today was a rough day for my dystonia. Not only was I sick, but the nerve stuff was happening in my left forearm. It was probably from the neck spurs, but it was really painful. Nothing really helps with that except for pain killers. It just throbs and you can actually feel the forearm pulsing. This is the same pain that I was experincing in my right forearm before I had the neck surgery.

My goal of this blog is to create a histor from January 2009 on about the effects of dystonia. It really does make a difference in my life. Last night, the balance from my left foot being affected caused me to fall into the hot motorcylcle pipes (no I don’t ride) in the garage. I got a pretty bad burn on my leg. Just another daily affect of the dystonia. And all I was doing was putting trash in the cans.

What is Dystonia

Dystonia is a movement disorder that causes the muscles to contract and spasm involuntarily. The neurological mechanism that makes muscles relax when they are not in use does not function properly. Opposing muscles often contract simultaneously as if they are “competing” for control of a body part. The involuntary muscle contractions force the body into repetitive and often twisting movements as well as awkward, irregular postures. There are approximately 13 forms of dystonia, and dozens of diseases and conditions include dystonia as a major symptom.

Dystonia may affect a single body area or be generalized throughout multiple muscle groups. Dystonia affects men, women, and children of all ages and backgrounds. Estimates suggest that no less than 300,000 people in North America are affected. Dystonia causes varying degrees of disability and pain, from mild to severe. There is presently no cure, but multiple treatment options exist and scientists around the world are actively pursuing research toward new therapies.

Although there are multiple forms of dystonia and the symptoms of these forms may outwardly appear quite different, the element that all forms share is the repetitive, patterned, and often twisting involuntary muscle contractions.

Dystonia is a chronic disorder, but the vast majority of dystonias do not impact cognition, intelligence, or shorten a person’s life span. The main exception to this is dystonia that occurs as symptom of another disease or condition that can cause such complications.

Taken from Dystonia Medical Research Foundation http://www.dystonia-foundation.org/