Stomach Contractions

I observed lately that my body twisting is not caused by flexion from my leg but by contraction from my stomach. The contraction feels like I depress my stomach and I twist right wards. I could not stand still without twisting my torso as my stomach contracts. Other times it's okay but most of the time I twist my upper body. "Abdominal or Truncal Dystonia is uncontrollable and often painful muscle contractions in the trunk which may cause unusual stretching, bending or twisting of the trunk. Truncal dystonia is believed to be caused by incorrect messages from the brain to the muscles." https://www.dystonia.org.uk/truncal-abdomen-dystonia

I read somewhere that as time goes by dystonia diminishes and replaced by parkinsonism. I would prefer that rather than this twisting experience. But I would prefer none of both if given the choice. But sadly, I have no choice.

My Mornings as XDP Patient

I always retire at night with a prayer. A short prayer that as I sleep the Lord will watch over me and my loved ones. That He refreshes me in the morning with a miracle that my dystonia is healed and my Parkinson's removed and I live normally for the day and the rest of my days. It's been my prayers for several years now and my XDP continue to progress.

I wake up around 6:30 in the morning with my feet beginning to twist and it keeps me from sleeping again so I will just stand and begin my day.

We have 5 food cart business, one Siomai House, three Fresh Lumpya and one Superbatchoy. Three in Victory Pasay Mall, in Libertab Street beside LRT station, One in Quiapo Underpass and one in Victory Central  Mall in Caloocan.

Soon as I wake up I would open my laptop to record the daily sales of our stores. I would also record  the daily attendance of our crews and make their salaries 15/30 of each month. The constant twisting of my body would sometime delay my activities, I cannot stand straight because  my foot will twist bringing my torso to slouch lower to one side. I cannot stand longer without bending to the side and it would just ease if I get to sit down. There is no pain to my ailment unlike other XDP patients who has extreme pain like my cousin Junel. So I am still mobile.

Though still in denial, thinking that I can beat this disease by exercise and medicines I can also feel that it will not be long and I will be put to my last resort - deep brain stimulation (DBS). We are not rich but somehow we are trying to save for the operation which costs somewhere between P2M - P2.5M and it's still a very long way to go This disease has indeed disrupted our finances and a burden extending to our families. I am helpless in one corner seeing how this affected my relationship with my wife and loved ones. I do not want to be a burden to them but eventually I will progress to be incapable of fending for myself. That would be the saddest chapter of my lubag journey. I am scared of the procedure, I am scared of the financial burden it will cause, I am scared it will tear down some relationships. But God willing I will try to recover soon.. Meanwhile this. 

While waiting I will have to contend myself with the degenerative symptoms of my XDP. I can just claim on the promise of DBS' success as found in these patients experieces: https://www.youtube.com/watch?v=crXo-15DIr0
Gerard Infante: https://www.abc.net.au/news/2016-07-16/new-lease-on-life-gerhard-infante-three-months-on-surgery/7628560

And hopefully, my mornings will be different then.

On with My XDP journey

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.

Result of my positive genetic test

Foot Twisting, My Lubag/XDP Update

In less than a year I have been experiencing the urge to press or twist my left foot. The twitching will turn my upper body to the left making me to slouch a little bit and if the pressing of foot is stronger the more I slouch. I searched the internet and found only one page about foot dystonia. It says it is focal dystonia to a group pf muscle, in my case the upper left leg.

Fingers press to the floor making it painful when driving.

I cannot stand normally in two feet as I have to press my left foot. It was subtle at first but now I begin to notice it gets aggravated in just over three weeks. I just hope it doesn't turn worse in months until I find a remedy.

Yes, I continue to find remedy for my ailment, aside from my regular visit with my neurologist Dra. Czarina Diesta of Makati Med. I've been taking food supplements as suggested by some sufferers like Magnesium and Omega 3. Yesterday I purchased online Ganoderma capsule as one testimonial said it had relieved him from cervical dystonia. I assume the king of herb ganoderma would address any form of dystonia. I hope this wonder herb could reduce if not eliminate my symptoms. I can only hope. Let's see.

Foot fingers curl inwards