Test Results

Talked to the doctor today and got the results. All tests including the MRI came back normal. YAY!!! Dr. office had me scared because they said he had to see me today to discuss. So, just primary generalized Dystonia in all 4 limbs now. Going on a new medicine and go from there. I was told today that if it gets worse, ...I am a candidate for DBS (Deep Brain Stimulator). We'll try this medicine first. 

So now I am on Gabapentin (Neurontin). Started Sat night with one 300 mg tab. I do that for a week, then go to 2x a day for a week, then 3x a day for another week, then add a 2nd tab to the evening time for a week, etc. until I'm at 2 tabs (600mg) x 3 times a day (total of 1800mg a day) We'll see if my system will tolerate this one.

Still waiting...

Well, still waiting for the results from the newest tests. I figure I will give the Dr a call next week.

I have been taking a lot more pain medicines lately. I hate that, but not only has stress been aggravating my Dystonia, but my lower back has acting up a lot more. I've been having spasms and wake up almost every more so stiff it hurts to even roll over. Most of the time I'm able to loosen it with a hot shower.

On the good side of things, Thanksgiving was nice. Fell asleep after dinner and now I can't sleep. And we have almost all of our Christmas shopping done already. It rocks. Thank God for the internet.

Well, that's the latest for now.

Brian MRI

Today, I had another Brian MRI with contrast. This is my 3rd one with nothing yet. Everything was okay except when he put the dye in my arm. I guess the vein collapsed and some of the dye got in my arm. OMG, that hurt like crazy. I had a big knot. Put ice on it and it's better, but sure it will bruise. They said the Doctor will have the results tomorrow. Probably won't hear anything though. That Doctor's office sucks.

Fingers crossed. 

Bye, bye Artane

Well, after 2 1/2 weeks on Artane, I am going off it tomorrow. Spoke to the Doctor's office and we agreed I need to get off this medicine. I am so grateful. I started off taking it in the evening before bed. I had fogginess, dizziness, dry mouth and tiredness. When I started the second dose, everything increased and I even had 2 hallucinations. Not a good idea when you have a two year old. i felt like it's not worth it. I'd rather be in pain than live my life like that.

Artane Cont...

I've now taken 2 doses of Artane. Joy! The pharmacist said to take it at night- best advice ever. It has really helped with side effects. It makes me so tired. Only thing I have during the day is dry mouth. This morning I awoke in a bit of a fog this morning. Pretty grateful my parents are in town right now. Less to have to worry about.

Saw a Movement Specialist

On Oct 13, I went to see a new doctor, Dr. David Song. Dr. Song is a Movement Specialist that Dr. Sheean sent me to see because everything was progressing. I had another thorough examine to which he determined that it was more than focal dystonia so he's now categorizing it as generalized dystonia. Kinda bummed about that. He also thinks that there is another, underlying condition going on as well. I definitely have dystonia, but it doesn't follow typical patterns. I'm one of those strange cases. Oh joy. So now, blood work, a  24 hour pee test, MRI of the brain again oh and a visit to an ophthalmologist. He's looking at Wilson's disease, but don't think it's it. I've had a couple cooper tests and liver tests before. Everything was fine there. But we'll see.

Meanwhile, he has put me on Artane. I picked up the script today and will start tonight. Not looking forward to it. I've heard there are nasty side effects with this one. Guess we'll see.

Yesterday, I went to get my botox injections with Dr. Sheean. He had mentioned that if my father was in town we I had an appointment, he'd like to check him out. My father has a tremor in his hands and he wanted to see if they are related. So, mom & dad went with me. He looked at dad and it's just a tremor. Has nothing to do with my dystonia. That was good. :) It was good to hear that he didn't give this to me. I was releaved for him. I could NEVER blame anyone for passing it to me, but I'm sure a little part of him worried about it. I would if my kid had a terrible condition.

I'll post more as I know more.

Disability Approved

Well, good news, my SS Disability was approved on Thursday, Oct 8, 2009 after 1 1/2 years of trying. For me, it went through during the reconsideration appeal. :) Still haven't received a letter about it, just the phone call and a large deposit in my account. :)

Such an incredible relief.

The latest

Sorry for the lack of updates. I have been going through some big changes. I had to start using a cane to walk. Also I recently got a disability placard for my car. Both of these items have been really hard to stomach. I'm realizing that I need to utilize these aids in order to stay healthy. I've been tiring easy and falling a lot. So far just bruising and cuts, but it could be worse and i can't do that to my 2 yeaar old. :(

So, I've had those adjustments and now realizing there is more going on. Lately, my mind has been off. I will start to talk about something and then up and forget it mid stream. Talk about frustrating. And now starting to realize that the dystonia might be moving to my right foot as well. That will make all 4 limbs. Eh!! I am going to see a movement disorder specialist next month and hope that he can shed new light on what is going on. I'm becoming more and more scared with everything going on.

Disability update - I filed the reconsideration appeal in June and just found out that it just made it to the state for the reconsideration. On Friday, the office called me for information and told me that they were just getting ready to get the updated reports from my doctors. So, 3 months after I filled the claim. I'm so frustrated by the system. If I was someone who desperately needed the money, I'd be up a creek without a paddle. It's now been 2 1/2 years since I stopped working. Anyway they are telling me December now. Frustrated.

I'm going to try to do a better job of updating now.

The video

http://www.youtube.com/watch?v=lJlUDCDaBUg

Here it is ... now everyone can see what this thing called Dystonia is for me.

I dropped off my SS appeal on Monday, so we'll see how that goes.

Things have been very, very stressful lately. I think my plate has been too full and I can't seem to recover. Good news is that Grammy is taking Miranda for the day on Friday and I am doing everything possible to just make a me day. I really need it.

The more physical things that I do (ie Disneyland), the longer I have to recover. And now, it's affecting my left knee. All the twisting is putting stress on my knee. It's very painful to straighten it right now. And I can hear a grinding under my knee cap.

I should be updating more, but just not in the mood tonight.

San Diego Dystonia Benefit Concert

Dystonia Awareness Week June 1-7

Hi all- it's Dystonia Awareness week. I am busy trying to share my story with others. If you are reading this, thanks for your interest in learning more.

Update on me: I was denied the disability. Of course, the decision was made in late January 2009 and I just found out last week. They never notified me. I had to call them. Good news is that I had a good reason so that I can go ahead with the appeal process. I will be filing that tomorrow. Plus, I have retained a lawyer that was recommended by the SD Dystonia group. FYI, 60-70% of all disability cases are denied the first go around. My doctors are confident I will get it.

The botox is wearing off and I am becoming increasingly in more pain. My left hand middle finger is really throbbing and curling. I am due for botox the first part of July. Typical stuff. I'm back to dropping more stuff again. I've been having more difficulty with walking again and even getting spasms in my back again. Have been considering a cane for support. Going to talk to my dr this month about that.

Depression has crept in more. It's been a very busy time and frustrating. It seems like the busier I get, the more stress it puts on my body and the more I want to just shut down. I have to find a middle ground on this.

More later...

Injuries

OMG, I have been so accident prone lately. The latest in my ongoing drama. Kitchen knife stab wound to the palm of my hand. Yep, good one. I was pitting an avocado when the avocado slipped out just as I went to stab it. Instead, I stabbed my palm. Not that big of deal, but I couldn't move my middle finger. So, I cleaned it and iced it. Went to bed. Next morning, lots of pain. So, after talking to my doctor's office, I was told to go to the hospital's Urgent Care. Joy. They wanted me to go for fear of tendon damage. As I understand, there is a small window of time to treat hand injuries like that. Got lucky, the doctor said I just had a small hemotomia and swelling. The finger was able to move, just painful. So, I got more Vicodin and on my way. He said it would be fine when the swelling went down. :) It already feels much better.

I am so tired of being hurt or in pain all the time. EH! I just want to feel good again. Oh and of course the middle finger is my dystonic finger.

Crosses finger that this next week will be better.

Good news today ... I won a free 30 minute stress release accupunture session. :) I've been wanting to check that out for relief of pain and stress. Now, here is my opportunity. YAY!

Speech

Today, I realized how much my voice has changed. When my daughter was born, I really didn't have much trouble saying her name. Today, I was introducing her to someone and had to say it 3 times to just get her to understand. I almost starting crying when I looked back and noticed that it has been a problem for awhile. I get so frustrated. I have even noticed that my wife doesn't hear half of what I say anymore. I think it comes out so mumbled at times, she doesn't know that I am talking to her. This really hurts dealing with speech. The physical pain is nothing compared to emotional pain I deal with. Sometimes, I just want to curl up in a hole and never talk again. But I have to work on this for my daughter.

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/