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

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

My XDP/Lubag Story

At 46 i was diagnosed with xdp a rare degenerative disease with origin from panay island afflicting the males 2,000 years ago. The ration of affliction is 5 in every 200,000 population in Panay Island. In a span of 5 to 10 years it can be dibilitating with focal to generalized dystonia combined with parkinsonism. 

The disease is a genetic mutation, it is not acquired or lifestyle generated, it was genetically passed on. It has no cure but can be medically suppressed. Symptoms has began to manifest even before i was diagnosed, my jaw twitches, later my torso twitches too like tic disorder. It started from a voluntary urge to twitch but my doctor says xdp may also start as a tic and progresses to focal dystonia. 

The disease is prevalent in Capiz, Aklan, Iloilo and neighboring areas of Panay Island with locals calling it by various names like sumpa, inaswang, nakulam, etc. in the absence of genetic diagnosis. But plain and simple it is sex linked dystonia parkinsonism (xdp), panay distonia or lubag. My mother is from Dumarao Capiz and my father is from Jaro, Iloilo.

I am now 47years old and is bravely awaiting for that rapid generation to strike. God willed I have no kid to carry the gene but He gave me a wife as my bastion of hope to fight it out whatever harsh future is in store. I sternly hope it wont come, that I may just enjoy life to its fullest with my wife. This 2017 and onwards Lord we are ready. May your will be done.

Back Blogging After 5 Years and My 6 Year Old Avanza

I'm back blogging after 5 years. Facebook is in, blogging is out. The social media id the new king. People are massively drawn to Facebook, Twitter and Instagram and I have have account to all but I seldom post. I am just reading, observing and never vocal. I still prefer to keep my thoughts on my own. I am a very private person so since blogs is not anymore at the center of publishing I will keep this as my private diary. I will post here things I would like to remember, things which are useful in the future for me and for others who need them since blogs are still searchable by Google.

Recently my 2009 Avanza bogged down. It went dead while traversing the skyway near Sucat exit. So  I brought it to a shop near Sucat exit. The shop's name is Asikaso along Dr. A. Santos Ave. owned by a mechanic named Dante. Initial check says my oil drainage is clogged which prevented the crankshaft from functioning. He quoted me P12,000 for overhaul labor excluding labor for machine shop which I paid after for P5,500. The machine shop could not fix anymore my crankshaft so I was advised to buy one. I canvassed at Evangelista and I found one priced P12,000 but when I brought in the size did not fit in because it was for 1.3 engine and mine was 1.5. Last recourse was to buy the crankshaft at Toyota and I found one readily available in Toyota Makati (formerly Toyota Bel-air). I was worth P33,200 and I asked for a discount. They gave it to me at P30,200 I think. Before that I also bought main bearing, connecting rod bearing, piston ring, overhauling gasket and motor oil and filter. Total repair cost me around P60,000 including labor and parts. Now my Avanza engine is good as new, ready to serve me for another 5 years. That is if I don't sell it and upgrade for a better SUV. For those who need more information about my engine please just email me at joshjaena[@]gmail.com

expansion blues

The mall manager which previously bumped off our application for cart space must be pissed off. We negotiated for a slot at the parking area and got a lease contract from the parking lessor. On first day of our operation we got kicked off by the mall technically, saying the parking lessor does not have permit from them to allow food cart tenant at their parking lot. So we packed up. But not without meeting the mall manager and passing the problem to him with our cart. Cornered, he allowed us to place our cart inside the mall subject to space availability and installation of a smoke filter. Few days later we came back, cart inside the mall with smoke filter installed and on stand by. Plan A, which was placing the cart outside with more foot traffic was disapproved, but plan B which is having the cart inside the mall was achieved. Now the pressure is on the mall manager looking for new space for us. They say if there's a will, there's a way, no matter how.

Lalakay Laguna

Allow me to advertise shortly.
We stayed here overnight, nice place, very private. For further pictures, click on title link above.

BJB Private Pool Resort, Makiling Heights Subdivision, Lalakay, Laguna
Overnight Rate: P12,000.00
Capacity: 15 pax
Amenities: Overlooking Laguna Bay. One big pool, one jacuzzi. Matresses on window-side benches. Dining and cooking area, inclusive of cooking utensils, gas stove and refrigerator. CR for men and women. Videoke and tent. Enough parking space.
For booking, Call: Ernesto Teraza at CP 09278765616 or 09179034466.

Of Elections and Contributions

National elections on May 10, 2010 is fast approaching. Candidates are growing frantic, more so with Presidentiables Noynoy Aquino and Manny Villar being neck and neck in surveys. Most likely they will have less sleep if not sleepless, thinking, and doing the best they can to turn opinions in their favor. All PR, advertising, political and financial machinery are being utilized to win voters for the one stake each candidate has filed for- position of power and influence- or public service as they humbly claim.

But I do not care. I am not voting this election. I never did. We had a dozen elections already and we have not moved forward. Simply, we have not learned our lessons and we keep repeating the same process that does not guarantee us radical change. Officials and bureaucrats are willing victims of the system so as to protect if not enrich their business and influence, in the guise of serving the people. As one article put it, P35,000 monthly salary will not suffice for a Senator alone, so where else do they get the rest for their official operations? It was Einstein who said doing the same thing over and over again but expecting a different result is insanity. Filipinos in that sense are insane, hoping that with the change of leadership their lives will also somehow change. But it's sheer baloney repeated every three years!

I derive my hope not from public officials, though, but from economic opportunities that abound for those who strive to improve their lot. In tiger economies like Singapore, Japan and Taiwan, its the politicians/officials that ensure economic growth is protected with nationalist incentives. The economic benefits cascade to the people resulting to less hunger and crime.

My personal contribution for this country to take off is not my vote. It is my sales work, providing sustainability of jobs to the company I work for. It is my small business, creating job for the crews that work under me. After all, it's not the government that feeds my family. It's still me, regardless of whoever wins this election. William Ernest Henley aptly captured it when he said:
I am the master of my fate:
I am the captain of my soul.

thinking

There's emptiness in every corner,
A wish leaping out but cannot be told.
I wonder when this can be over,
I wonder how may I ever her hold.

pent-up

Sometimes silence speaks better than words.
Its better that way, for the greater good.

After All The Years

It's been a while. Time swept me by and here I am-- bigger, bolder, balder-- and about to be married. My girlfriend for 14 years and 11 months has finally agreed that we settle down. Not because her fine taste for what is creative and beautiful has deteriorated. They say man as he grows older gets more valuable, and she grew wiser, too. That's what I believe, at least.

Force majeure and some touch of Divine intervention prompted us to terminate our single blessedness. Recurring myoma, which can ease up during pregnancy, but will eventually come back, was a major factor. I had been blamed for not doing it earlier and I guess they were justified. The period of contemplation as to when and how wasn't long. We were about to hear the next Sunday mass when a priest approached us and as if possessing divine clairvoyance, announced "you shall get married soon!". Not exactly his words, but the instance we talked to this priest we immediately had this gut feel he will officiate our exchange of solemn vows before the Lord.

To cut the long story short, this scholar priest of the Salesians of Don Bosco postponed his trip to Vatican and visit to his parents just to be our Ninong and at thesame time our wedding mass celebrator. Twenty seven days to go and this giddyness will finally be over.

Lately...

Here are some things I'd been up to, or has encountered lately:
1. I recently learned that UniOil Gasoline Station doesn't accept any credit card specifically from BPI. I had a full tank fill at their Evangelista station in Bangkal, Makati when the attendant returned my BPI Express Card saying their machine doesn't accept BPI (Bank of Philippine Islands) credit cards. Unbelieving, I got out of my car and verified with their cashier to which she insistently replied that their boss instructed them not to accept it because BPI is not a good payer- "matagal magbayad sila". It was hell of an inconvenience that I was not informed before hand. They should have posted a placard at their pumping stations "BPI Credit Cards Not Accepted Here!"
2. My girlfriend was diagnosed yesterday with Adenomyosis. It's horribly painful for us both as we still want to have babies. Her last operation for myoma removal was last February and a small pain still lingers on her lower left abdomen. Despite the odds, I still hope we can make it. Yes, why not, the good Lord hears me every time.
3. We are up with something that keeps us moving, working and busy. Our little franchise with a dimsun company will start operating end of November this year. My girlfriend will be on top of this, being her pet project after her resignation as Art Director. We are also trying to put up a similar business which will be our own, this time in Iloilo, my home town. I'm trying to put things together and God-willing, we will be up first quarter by next year.
4. I'm selling my LPG-fueled car. It's a very good sedan, smooth and super frugal. I bought a second hand Honda City, not for its economy but for its power steering and suspension. The old makes me more muscular, sans the pumping irons...