After My Deep Brain Stimulation (DBS)

Three weeks after my brain surgery I went back to Dr. Oropilla to turn on my battery. It was just like that and I can walk properly already. I still occasionally have stomach contractions but now I can walk straight without bending. I feel I'm 80% well, because some symptoms of parkinsons still manifest. I can now swallow my food and my speech improved, The curling of my right foot slightly disappeared and I can walk normally, There is a small bulge in my skull due to the wiring  that goes to my battery. The battery in my right chest has protrusion and it's where I place the charging device.

For now I start counting to 10 years as life span of the battery before it could be changed. 10 years of quality life because every moment is now more precious as I will not know what happens in between. Without DBS I might have just lived 5 years because the progression symptoms of my XDP is aggressive, I cannot eat, I cannot walk, I cannot sleep. Thank you Lord for the miracle of DBS though its not a cure, it can manage the symptoms to prolong my life. Thank you for all the people who helped me raise fund and for those who prayed. Thank you Dr. Cid Czarina Diesta for all the help. Most specially to my wife Paulette who never gave up when the going gets tough. Here is the video before my battery is turned on and after it was turned on.

Of Prayers

I am done with the first test towards my DBS surgery, a neuropsycho test. It was a 3 hour activity with Dra. Holamdes of the Makati Med. Now I am waiting for the psychiatry test followed by cardiopulmonary test. Then there will be a team meeting with my family and the doctors involved with my operation. The schedule is still tentative on first week of June.

Meanwhile prayers continue to pour and I thank you all for the prayers. I know that they can only be effective as my personal faith goes. I pray that God increase my faith each day for such is His desire that I convert my trials into more obedience, humility and love.

Last Sunday we went to St. Padre Pio National Shrine in Batangas to hear mass. Then in the afternoon we had a short worship prayer at the house of our former home cell head in Familia (Family Life Apostolate). It was heart warming and joyful to be praising God in worship songs again. I know I  have to renege on my calling to serve again in a community of faithfuls such as Familia. And yes, hopefully not in wheelchair anymore.

Good Friday and Me

For years we have been expectant of Good Friday during Lent season. It is the day that the family would visit seven churches and recite Stations of the Cross. We would start in Caloocan, then go down to Manila, Makati, Pasig and lastly to St.Pio of Pietrellcina Chapel in Libis where we would traditionally carry wooden cross on our back as we recite the Station of the Cross. Many would tell me just surrender your ailment to God. Claim that you are healed Jesus is your healer and he loves you. Before they tell me all these hopeful counsel, I have been praying them already miles ahead during the onset of this disease. It's not that I lack faith that this ailment would not go away. I have faith that God would heal me in His time. He will heal me with what ever is best for him be it through prayers, science through DBS or medications. Yes He will heal me in His perfect time. Meanwhile I just have to be patient and keep my faith.

This year's Visita Iglesia though is different. My wife, instead of carrying the wooden cross would carry me through a wheelchair literally the cross she bear for many years now. This year's Visita Iglesia was cut short due to limitations of the physical activities of our elderlies and myself. I can no longer walk far. I can only walk 10 steps and my stomach would start to contract then I go bending again. There is still progression of my truncal dystonia that the Botox given me April 5 failed to activate. From Station 1 to Station 14 I am on wheelchair and my prayer is I can stand again, walk every station just like the former days. I just really hope my DBS will remove all the symptoms and restore me to a new life.

14 Days Since Botox, No Effect Yet

My Doctor said the Botox will start to take effect after 7 days from injection. I read somewhere it's 7 to 14 days. So when there was no effect in 7 days I said it could be in 14 days. Now is the 14th day since April 5 but the stomach contractions remain constant. Now I researched further how much longer Botox for muscle spasticity takes effect. Another source says: two to four weeks. "Botox is given by injection directly into the affected muscles. However, nerve endings usually grow new connections to muscles that have not yet been exposed to Botox. So, treatment may be repeated as often as every three months. Botox usually takes full effect within two to four weeks after injection." So there, I need to wait until 4 weeks or one month to  see the benefits of Botox. Meanwhile I can't walk, I can't stand longer and I just sit or lie down the rest of the day. For some one who is used to be up 6:00am and do hundreds of chores before retiring this is not acceptable. But here I am helpless, unproductive and mired in self pity. I really hope the Botox works so I can do pending jobs before my scheduled DBS. I really hope to get to my normal life again.

The World Outside

For days I was just confined at home due to difficulty walking. On the forth day after Botox injection to my stomach we tried to explore Zoobic Safari for a change. The Botox has not activated yet The new environment allowed me to forget for a while my condition although I still walk with difficulty. There is big relief if I sit every once in a while and when I start to walk my stomach contraction begin to manifest and my legs would flex. and I perspire heavily. Here's the video taken during the trip above crocodile pond, I look forward to more of these when my DBS is successful.
Other xdp patients: Neck dystonia: https://www.youtube.com/watch?v=ye-PId_E1DI
Generalized dystonia: https://www.youtube.com/watch?v=3AE9obE9dbM
and more: https://www.youtube.com/watch?v=Dy9opygDOiw

Botox to my stomach

Last April 5, 2019 I went to Dra. Cid Diesta for scheduled consultation. She was surprised to see me dragging my feet and bending forward as I walk. I was't like that last December 2018, my progression came faster in February to April so she immediately scheduled me for the psycho-neuro tests before gathering her 10 man team for DBS.

I immediately got mixed feelings, I am not yet ready to bore my skull, have no fund to finance the cost but the symptom gets worse everyday, with DBS the only remaining option to relieve my dystonic and parkinsonism symptoms. XDP has no cure and medicines can only alleviate certain symptoms but since its progressive medicines can only be effective to a certain point. Accordingly, DBS is most promising because it can be programmed as the symptoms changes over time.

My neurologist set a tentative date of May 2, 2019 for my DBS. I am now preparing for the preconference tests, the fund and all support that I need and we will meet again Dra Diesta on April 24 for the final evaluation. Meanwhile I just hope the botox can help ease my muscle contractions as I prepare for the preliminary requirements of my DBS.

Difficulty Walking

In a span of one month since my last visit to Dra. Cid Diesta my abdominal contraction progressed. She checked me last December 7, 2018 and gave medication of Tidomet 2 tablets 3x a day and Stilnox 1/2 tablet 2x a day. My next scheduled visit will be April 5, 2019 or almost 4 months for the next consultation. From that span of time my stomach contraction progressed rapidly. I was seen by my doctor December and by January the abdominal contraction started to show. Today is March 15 and this is how I look now. I bend down while walking due to contraction of my stomach.I don't feel it while sitting or lying. I can still drive without pain. It's only tiresome when I stand longer. No matter how I force my self to walk erect my effort is powerless to this pressing feeling in my stomach that makes me bend forward. I think I need to suggest in my next doctor's visit a Botox injection to my stomach. Botox injections work by weakening or paralyzing certain muscles or by blocking certain nerves. The effects last about three to twelve months, depending on what you are treating.

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