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.
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.
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