It has been 4 year since the confirmation of my genetic test that I have Lubag or XDP. In July 2015 at the clinic of Dra. Lilian Lee in Phil. Children's Medical Center me and my wife received what we anticipated as most horrible news about my condition. There she read the results as if casually to similarly case patient and suggested us to undergo sessions in a group study of which I am hesitant. She filmed me walking the corridor back and forth, turn left and right and some tests in my fingers and arms. We went to her clinic since we knew she was the pioneer in the disease, but knowing that more modern treatment is available elsewhere plus the fact that her clinic is far from our place, we searched for another neurologist closer to our place in Makati and who have the experience dealing with XDP. Dra. Cid Czarina Diesta's name came out prominently in our search. Her team performed deep brain stimulation (DBS) to one of my town's mate who suffered aggressive XDP. Then eventually, in 2018 she also performed DBS with my cousin Junel Roy Edang who has also an aggressivee type of XDP as he experience pain in just a matter of months from onset.
My case is very slow, started with focal dystonia, twisting of the neck, then gradually flexing of torso. Now my feet fingers are curling inwards involuntarily that causes pain when driving because the fingers when curled press to the floor. I can hardly stand on my two feet as my left foot would flex inward as if pressing to the floor. It eases when I begin to walk or run but when I stop to stand it again twitches to the left making my left torso to fall lower than my right. Pissing is another challenge as I need to raise my left foot so as not to press and affect my shooting of urine to the urinal. If I don't do that I will slouch sideways and my urine will land at the side of the toilet bowl.
Every day I would observe if my condition ever progressed and pray that it will not, or better no manifestation at all. But everyday as i continue to experience pain in my toenails while driving, as I continue to press my left foot and twist my torso left sideways and walk slower I know I have to accept the fact that too soon I will be put under the knife. Too soon no matter how denial I am, I will be placed under DBS. I can't tell when, it depends on the progress of my condition but as sure as the setting of the sun in the West I will have to undergo it. By then I should be ready physically, emotionally and financially. Every day I pray to God that he would heal my XDP and remove the symptoms of dystonia and parkinsons. Sometimes I wonder if He is really listening as I don't experience relief. Maybe he is preparing me big time. I hope I still have the strength to face that big time surpise.
My case is very slow, started with focal dystonia, twisting of the neck, then gradually flexing of torso. Now my feet fingers are curling inwards involuntarily that causes pain when driving because the fingers when curled press to the floor. I can hardly stand on my two feet as my left foot would flex inward as if pressing to the floor. It eases when I begin to walk or run but when I stop to stand it again twitches to the left making my left torso to fall lower than my right. Pissing is another challenge as I need to raise my left foot so as not to press and affect my shooting of urine to the urinal. If I don't do that I will slouch sideways and my urine will land at the side of the toilet bowl.
Every day I would observe if my condition ever progressed and pray that it will not, or better no manifestation at all. But everyday as i continue to experience pain in my toenails while driving, as I continue to press my left foot and twist my torso left sideways and walk slower I know I have to accept the fact that too soon I will be put under the knife. Too soon no matter how denial I am, I will be placed under DBS. I can't tell when, it depends on the progress of my condition but as sure as the setting of the sun in the West I will have to undergo it. By then I should be ready physically, emotionally and financially. Every day I pray to God that he would heal my XDP and remove the symptoms of dystonia and parkinsons. Sometimes I wonder if He is really listening as I don't experience relief. Maybe he is preparing me big time. I hope I still have the strength to face that big time surpise.
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| Result of my positive genetic test |
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