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My name is Gabrielle and my husbands name is Gaylund and this is our story. This page is a dedication to my husband and anyone else who is affected some way some how with Parkinsons Disease. It all started w/a tremor the year 1999 close to 2000. He had so many crazy things going on with his body. The testing started. They had to eliminate every other illness to pin point this one. There is no one test for Parkinson's Disease. He was poked, probed, zapped, medicated, questioned and so on. Our first neurologist was Dr. Shawbitz in Pesacola, Fl. 6 months had gone by and still no idea. I sensed he KNEW! I ended up making an apt. JUST me and sat down with him. I asked him what do you THINK it might be. He said Parkinson's Disease. But he is just too young (28 years old at the time). So, he had him go to a movement disorder specialist. We went to Alabama for this doc. It was a full day of poking and probing all over again. In the end....the "Specialist" diagnosed him having FIBROMYALGIA. (Which means the doc has no clue) We were jumping up for joy....NATURALLY! Our reaction stunned the doc so he asked us "What did you think he had". Ummm, we thought it was Parkinson's. He laughed (yeah, laughed) "He is much too young for Parkinson's". Then he asks why do you think that. Well, we go through all he had gone through and that he was on Sinemet (Cadilac drug for Parkinson's Disease). So, I guess he then takes it apone himself to REVIEW his medical papers in front of us. Doctor then tells my husband to go outside and walk for him. Gaylund and the doctor returned to the room and the Doctor says "Yep, he have Parkinson's" and that is how we were told (29 years old at this time). Since Sinemet was the BEST drug for PD they wanted to give him substatutes so that when he did use Sinemet it was later and worked longer. Man, he was already on Sinemet for 1 year. We tried it all...Requip, Marapex, Comtan, Selegeline..I could go on and on. There were hulucinations, throwing up, 911 calls (many times), pills that he fell asleep anywhere and everywhere, loss of appetite and more! Finally realizing it is just not going to happen we fall back on Sinemet. By the age 32 my husband was a mess. Not able to function w/out meds in the morning. I had to give them to him in bed so he could get out of bed. Many falls! Weight loss! Wow, 220 down to 130. He looked scary! Never sleeping. Always sick from meds. Taking 24 pills a day only to feel like he was trapped in his own body. That is when our neorologist, Dr. Ondo from Baylor College of Medicine recommended he have the DBS (Deep Brain Stimulation). BRAIN surgery! He was approved and got it done months later! He was so syptomatic they did both sides of the brain. He was 32 still at this point/almost 33. Ya'll, surgery was 9 long hours of my life. They do this while you are AWAKE! Can you imagine? Some of you can! Hugs! Once they turned on the stimulators in Oct. 2003 he was a NEW MAN! Oh My Gosh! I was bawling my eyes out. He was symptom freeeeeeeeeee! It was truely a miracle! Would do this surgery OVER if we had the chance. My husband gained his independence, his LIFE! It was so awesome! Shortly.....2 months later the tremor was back and it just progressed from there. My husband was approached by his work at the age 32 that he needs to start thinking about disability. Can you imagine. He was 32 with a Stay At Home Wife, a 13 year old son....getting more expensive by the minute and a 5 year old on his way to school. He was CRUSHED! He fought it for as long as he could but his work said he was a liability and he went on full term disability at the YOUNG age of 34! Things have been hard on Gaylund. He loved to work. He was a workaholic....I should know...ha! Then BAMB, nothing? He was depressed. Sitting at home while I went to wk. He was doing the laundry, dishes (until I said do anymore and I will need new kitchenware)lol! He was a stay at home Dad. He was just bummed! That is when the falling became more frequent and he was blacking out due to his heart rate. I hated being at work.......WONDERING is he on the floor, does he need me. I had to quit! I now stay at home with him. We live off of Disability and Social Security. Our sons are Brent who is now 17 and Jeremy who is now 8. My husband has severe dystonia. He is always always choking on his own Syliva........Syliva? It's crazy! He is losing his right side. That is the side DBS did not do much improving on. Luckily he is a lefty! Yeah! Anywho, he is down to the use of one hand and his walk is not so good. They are trying shots of Botox for his leg, foot and hand. He has had one treatment and still no change. My husband can no longer dance, play video games, play basket ball or even run and he is a very old 35 year old! But you know what? He is still here, he has the best personality, he still makes us laugh, great attitude and he sure can love........PLEASE PRAY FOR A CURE! Gaylund's Loving Wife, Gabrielle
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