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.