PLEASE VISIT MY NEW WEBSITE: http://www.fighting-dystonia.com

Hello, my name is Agapito "Jun" Buenaflor III, born on January 26, 1971. I'm from the province of Iloilo located in Panay Island, Philippines. I have a disease called X-Linked Dystonia-Parkinsonism with Blepharospasm.

I would like to be in touch with people who have the same condition or medical professionals who are willing to help. Please feel free to send me an email.

Contact Information:
Jun Buenaflor
[email protected]

My Doctors:
Dr. Manuel Gayoles Jr.
Physiatrist
Our Lady of Mercy Hospital
Bacolod City, Philippines
Tel. No. 0063.34-434.1031 Local 128

Dr. Michelli Mae D. Gose-Yusay
Neurologist
Suite 414 Riverside MAB
Bacolod City, Philippines
Tel. No. 0063.34-433.7331 Local 7414

Dystonia Links:
Dystonia Foundation
X-Linked Dystonia-Parkinsonism
Blepharospasm
National Institute of Neurological Disorders and Stroke (NINDS)

 

My doctor is Christopher Kenny, a neurologist at the Baylor College of Medicine in Houston. His evaluation is almost the same with my doctors but he has several tests that was not done to me in the Philippines. He placed me under medication, he gave me a stronger dose of Sinemet for 1 month, 1 tablet 3X a day for the first week, 1 and 1/2 tablet 3X a day for the second week, 2 tablets 3X a day for the third week and 2 tablets 4X a day for the last week then scheduled me for another check up on July 7, 2006. If the medication would not work he will try Botox injection.

Based on my history below, Botox does not work for me, it does not stop my parkinson-like constant head movement to the left and also it does stop my Blepharospasm.

There is a clinical trial going on in Maryland, Deep Brain Stimulation (Brain Surgery) for Dystonia and I have already enlisted, they ask for me to wait 10 days from now for them to contact me since they are gathering a group to undergo the clinical trial.

Sa mga tega Pinoynet at sa ibang nag sign-up sa guestbook, maraming salamat sa suporta.

I will be going to Houston, Texas on May 30, 2006 to undergo a possible brain surgery called Deep Brain Stimulation. This surgery might be able to stop the progress of my Dystonia.

I was overwhelmed at the sign ups I got from my guestbook, thank you very much for all your support. I will keep you posted once I'm in Texas. Thank you very much.

March 18, 2005
I had my second BOTOX. Click the following link to see the sites and doses of my BOTOX injection. I noticed that I'm slightly doing "sud-sud" (an onomatopoetic term denoting the sound of sandal slapping the pavement) when the gait is shuffling (a feature of parkinsonism). Dr. Yusay also noticed that I'm beginning to have signs of Cervical Dystonia or Spasmodic Torticollis. She increased my medicine dosage.

Sinemet - 1/2 tablet once a day
Akineton - 1/4 tablet 3 times a day
Rivotril - 1/2 tablet 3 times a day

February 21, 2005
My fracture is gradually healing, the pain in my shoulder is now tolerable and I am now able to move my right hand slowly. My blepharospasm I think is worsening, there are times when I have to open my jaw widely in order to force my eyes to open. From what I have read, 90% of those injected with BOTOX experienced complete relief from blepharospasm. I think I belong to one of those unlucky 10%.

February 10, 2005
I was very unlucky. I had a motorcycle accident due to my blepharospasm. I hit a wall when my eyes closed and failed to open. I fractured my clavicle which made me very hard to move. Then my blinking intensify, I have a very hard time in opening my eyes. Luckily, I didn't undergo operation the doctor just bandaged my shoulder.

February 7, 2005
It has been a month and one day since my BOTOX injection and I feel like there's no effect on me, I still blink a lot especially in the morning when I wake up until around 4pm. But my right foot especially on my toe, the numbness seemed to die down a little.

January 31, 2005
I went back to Dr. Yusay, she prescribed another medicine. So my medicines now are:

Medicine:
Sinemet - 1/2 tablet once a day TTHSat, 1/2 tablet twice a day MWFSun
Akineton - 1/4 tablet 3 times a day
Rivotril - 1/4 tablet 3 times a day
And still taking DNP and Stresgon

Still the effect of BOTOX is not as I've expected. I'm still blinking but then not as heavy as before.

January 26, 2005
Its my birthday today, I am now 34 years old. I now feel numbness on my right toe and sometimes mild pain. The BOTOX injection is not as I've expected, I am still blinking but not as hard as before, and still, I find it difficult to drive a vehicle.

January 25, 2005
I tried the food supplement from E. Excel International called DNP and Stresgon, these are the medicines that have on their label "No Approved Therapeutic Claims". For more information, visit their website at http://www.eexcel.net

January 6, 2005
I had my BOTOX injection at around 1:30PM Philippine time, the procedure was smooth enough, I didn't feel any pain in spite of 8 injections per eye. Click the following link to see the sites and doses of my BOTOX injection. Dr. Yusay prescribed another set of medicine to me. So, I now take the following medicines:

Medicine:
Sinemet - 1/2 tablet once a day TTHSat, 1/2 tablet twice a day MWFSun
Akineton - 1/4 tablet 3 times a day

I started to notice that my toes are pointing upward whenever I am not aware. So far, if I wear sunglasses, I looked normal even when I walk.

January 5, 2005
I went back to see Dr. Gayoles and I was ready for BOTOX injection. He referred me to Dr. Michelli Mae D. Gose-Yusay, a neurologist for my BOTOX injection. He then increased my medicine (Sinemet) to one more half tablet per week.

Medicine:
Sinemet - 1/2 tablet once a day TTHSat, 1/2 tablet twice a day MWFSun

December 21, 2004
I went to see Dr. Manuel Gayoles Jr., a former professor of my sister during her college days as a Physical Theraphy student. He suggested that I should have BOTOX injection. Then he prescribed a medicine to me.

Medicine:
Sinemet - 1/2 tablet once a day MWFSun, 1/2 tablet twice a day TTHSat

November 14, 2004
I accidentally forgot to take my medicine and for the first time after those weeks under medication, I felt alive, since them I stopped taking medicines and my blepharospasm stopped for about 5 days then resume again.

November 09, 2004
We went back to the neurologist and she increased my medication.
Serenace - 1/2 tablet 3 times a day
Benadryl - 1 tablet twice a day
Valium - 1/2 tablet 3 times a day

Having these medication I felt that will die since I cannot stand nor sit, I just laid on my bed everyday and I do not even have the strength to eat. I thought my condition was due to my illness since the neurologist never told me that this would be the effect of the medicine.

November 05, 2004
I undergone EMG-NCV test and the result was given 1 month after and here it is:
Pertinent Physical Examination: Patient was alert, coherent and ambulatory. No objective weakness and sensory deficit. Deep tendon reflexes were hypoactive bilaterally.
Motor and sensory nerve conduction study was within normal limits.
Needle examination showed mild to moderate denervation changes on the muscles indicated.
IMPRESSION: Normal Conduction Study, Consider a primary neuropathic or motor neuron disorder.
Click the following links to view the EMG and the NCV results.

November 01, 2004
There have been no improvement on my condition, instead the blinking intensifies so we went to another ophthalmologist. Again the ophthalmologist said that nothing is wrong with my eyes but referred us to a neurologist because he said it might have something to do with the nerves in my eyes.

So we went the the neurologist and she asked questions about my roots, I told her that I have 2 uncles who have what we call LUBAG. Then, the neurologist said to me that I have the same condition as them. My blinking or blepharospasm was a symptom of that disease. Of course I felt devastated, I have two young kids, what will happen to them if I will be disabled.

Medicines prescribed to me were:
Serenace - 1/2 tablet twice a day
Benadryl - 1 tablet twice a day
Valium - 1/2 tablet twice a day

The neurologist than asked to me to undergo EMG-NCV test.

October 18, 2004
I went to a doctor, an ophthalmologist to complain about my excessive blinking. The doctor told me that nothing is wrong with my eyes and gave me a prescription for Ocuvite and Tears Naturale II.