Facing the ALS (english version)
Humberto Jose Macedo Soares, 42 years old, native of Joao Pessoa / PB, last 37 years resident in Brasilia / DF, Brazil, graduated at 1986, systems analyst, as market analyst for information at CA www.ca.com (world industry-leader company in management software).
LAST UPDATE: DEC 2008
dec 19- WE CAN HAVE MANY LIVES, OR JUST ONE, THE FACT IS THAT WE SHOULD LIVE IT AS FULLY AS POSSIBLE BECAUSE WHEN WE GO TO ANOTHER PLAN, FLOOR, ASTRAL, LIFE, OR WHATEVER IS THE NAME, THE ONLY THING THAT LAST IS LOVE, CARE, AFET , RESPECT FOR THOSE WHO LOVED US WHILE WE WERE HERE. I KNOW THAT THE PAIN STAYS, A VACCUM APPEARS, THE FEELING OF A LACK SHOW UP, BUT IT WILL BE LESS EVERY DAY, AND ONE DAY WILL BE JUST LOVE, GOOD MEMORIES AND GOOD MISS OF YOU..MISS YOUR LAUGHTER, YOUR FUNNY WAY, THE SONGS, THE MOVIES, THE LIFE WE LIVE.I ASK MY BELOVED ONES NOT TO SUFFDER FOR ME, I WANT YOU TO UNDERSTAND I AM IN A BETTER PLACE, DIFFERT FOR SURE, A BEAUTIFUL GARDEN FULL OF FLOWERS, WITH WONDERFUL PEOPLE WAITING FOR ME, A PLACE WHERE PASSAPORT OR VISAS ARE NOT NECESSARY,FULL OF SUSHIS, SASHIMIS, TEMPURAS, KONIS AND SAQUES (AND WITH NO HANG OVER – PERFECT!).
MAYBE THERE WILL BE THAT HOUSE, WITH WHITE CURTAINS AT THE WINDOW, A WHITE SHORT PICKED FENCE, OR MAYBE THAT BEACH WITH WHITE SAND, WITH BLUE AND ESMERALD GREEN WATER, WITH THE ETERNAL SUNSHINE, I DON’T KNOW, THE ONLY THING I KNOW IS THAT IT IS MY TURN TO TAKE CARE OF YOU AGAIN, TO WATCH AND PROTECT YOU FROM THE PLACE I AM, AND WHEN YOU FELL THAT COOL BREEZE OR THAT GOOD WARM…ITS ME HERE WITH YOU. BUT I WANT EVERY ONE TO KEEP SMILING, SO THEN I WILL BE HAPPY AND KEEP DOING HERE WHAT I ALWAYS WANTED TO DO… HELP YOU ALL. I KNOW I AM STRONG ENOUGH FOR THIS, BECAUSE THEY GAVE IT TO ME WHEN I WAS THERE WITH YOU.
19 DECEMBER 2008.
TIME OF PASS: 17:00 HS.
dec 8- BUSINESS WEEK interview
http://www.businessweek.com/magazine/content/08_50/b4112058194219.htm?chan=top+news_top+news+index+-+temp_news+%2B+analysis
oct 25- on feeding tube surgery.
oct 22- start breathing physioterapy - Juliana Pertlle - #1
oct 20- on home-care since yesterday to halt a hard cough - lungs rebelion. On meds, serum - vein - and many nebulization. Cough-assist is coming - http://coughassist.respironics.com/ UHUUU ;)
oct 12- no voice anymore.
oct 10- back to 150mg day on lithium carbonate.
oct 8- Italy- http://globoesporte.globo.com/Esportes/Noticias/Futebol/italiano/0,,MUL791193-9848,00-FOTOS+RONALDINHO+GAUCHO+MARCA+PRESENCA+EM+PARTIDA+BENEFICENTE+NA+ITALIA.html
oct 5- Went to the theater - SO FUNNY!
sep 29- Stopped Li. Didn't work for me, didn't slow my progression.
sep 25- FRS 18 - decline 2 points
sep 22- http://www.als.ca/researchnewsletter/
sep- 2 years as of the first symptom. Voice is going - really sucks!
aug- fighting to preserve the voice! Publish http://www.myspace.com/humbertofrombrazil
aug 28- sign the petition pro IPLEX - #505
http://www.PetitionOnline.com/iplex/
http://give-us-iplex.blog.com/
aug 27- has been visited by a friend Eduardo Schvinger - CA Vice President, Technical Sales – Latin America and the Caribbean - :)
aug 19- buy the Skeleton Key. Smart virtual keyboard.
aug 10- testing a smart virtual keyboard. It's look like pretty good! I'm planning to purchase one. Writing so fast and confortable. http://www.catalaw.com/index.shtml
July 23 08: receives the SmartNav4:AT
http://www.naturalpoint.com/smartnav/products/testimonials/ALS.html
July 14 08: brought the SmartNav4:AT
July 11 08: to click becomes more difficult! Buying the hands-free mouse SmartNav4:AT http://www.naturalpoint.com/
June 15, 2008: moves to take baclofen 40 mg / day to try to reduce the spasticity. Create and publish the ALS community of Brasilia´s city, Brazil. http://www.orkut.com.br/Community.aspx?cmm=57548361
June 13, 2008: beginning to use a canadian cervical collar. Great!
http://forumelabrasil.forumeiros.com/gallery/ELA-ALS-BRASIL/ELA-ALS-BRASIL-cat_c1.htm
June 12, 2008: interviewed by Andrea Polimeno - Brazilian Medical Research Magazine.
www.revistapesquisamedica.com.br/PORTAL/textos.asp?codigo=11311
www.revistapesquisamedica.com.br
June 11, 2008: planning to insist with Li til have completed 8 months. Next 25th i´ll complete 6 months on it. I´m back to 300mg of Li per day.
June 6, 2008: reduces the lithium of 300 mg / day to 150 mg / day, planning to stop completely in one week. After 5 continuous months on Li, realizes the inefficiency to slow down the ALS progression, in this case! New studies show effectiveness of lithium in 50% of samples. Begins to take Mass Hyper Dyn (super calorie) and Nutren Active.
June 2, 2008: appointment with the nutritionist, Lívia Gurgel, for inclusion of supplement to gain weight.
May 29, 2008: brazilian supreme court approves research on embryonic stem cells - UHU. Quarterly blood tests. Friends in the U.S. buy the cervical collar for me (many many thanks!):
Http://www.symmetric-designs.com/headmaster-cervical-collar--2.html
May 25, 2008: great friend, Nelson Escobar, establishing and adjusting glove and mouse with velcro to set better hands and fingers. Thanks brother! Show!
May 24, 2008: 28/maio scheduled for appointment with Dr. Maike to see models of cervical collars.
May 16, 2008: create and publish this blog.
May 14, 2008: released to take the flu vaccine by Dr. Dagoberto Callegaro, head of Neurology at Hospital das Clinicas in Sao Paulo.
8 to May 11, 2008: trip to Fortaleza with all family. Show! Special thanks to my friends Jackie-Portinho and Nélson-Mônica including all friends of friends.
http://www.oasisatlantico.com/index.php?
http://www.oasisatlantico.com/index.php?option=com_content&task=view&id=57&Itemid=117
May 2008: it is difficult sustaining the neck. Is interviewed by Peter Aldhous, PhD, San Francisco Bureau Chief, New Scientist magazine.
http://www.michaeljfox.org/newsEvents_parkinsonsInTheNews_article.cfm?ID=346
March 31, 2008: create and publish the ALS BRAZILIAN FORUM.
March 2008: can not give more or a step or run stand with support. The speech is very committed and starts to have problems with swallowing. Only to swallow the medicine mixing them with yogurt or ice cream.
February 2008: purchase of bracing for the legs to leave their feet in the position of 90 degrees for legs. It now receive the JOHREI, taught by friendly Zélia Figueiredo.
January 27, 2008: is interviewed by Leo Greene for the Daily Bulletin (CA journaideol). http://www.dailybulletin.com/ci_8089973 - video included.
January 7, 2008: create and publish spreadsheets to track all with ALS and who take lithium in the world, in collaboration with the awesome Karen Felzer, scientist (PhD, geophysics).
http://spreadsheets.google.com/pub?key=pq7l2D-lVjOcsItCl6frJMA
December 25, 2007: beginning of the use of lithium (Italian study http://alslithium.atspace.com/). Nothing to lose, only to gain! At least, we will not be sad. heh
November 2007: purchase of new wheelchairs, most appropriate for your state.
October 30, 2007: appointment and follow-up with top nutritionist. Change in food.
September 27, 2007: begins the home care of Occupational Therapy. You can not enter more, is to use a virtual keyboard (1 click for each letter or digit). Need help position the mouse in hand and can only with a click of the finger left. It gives only a few short steps with extreme difficulty and with help.
September 12, 2007: Physiotherapy, Acupuncture and Speech therapy sessions will become household as the displacement has become extremely difficult and tiring. The home care is even more expensive. Buying the first wheelchair.
September 5, 2007: 4th. and last (so far) appointment with Dr. Dagoberto in Sao Paulo. Need wheelchair to get around the airport. Come with extreme difficulty and very short distances with assistance.
August 28, 2007: the speech starts to be compromised (weak and difficult to talk about some phonemes). It starts with the speech therapy.
August 2007: the company changes its function so that it can work from home only on the computer. Come with great difficulty, only short distances and with the help of another person. The cane does not help more. You can not eat more, bathe or go to the bathroom alone. Need help to turn in bed, sit and lift. Only now are working from home (home-office). God bless you Mr. Ken Arredondo!
July 12, 2007: moved to block 108 north (through a friend-brother) because of the need to be close to doctors and hospitals. The left arm and right leg are also compromised. Stop driving cars.
May 2007: hand and right arm and left leg very committed with greater commitment. It starts to use the cane to walk to (slow, medium distances and with some difficulty). Already unable to write with the right hand, needs help to dress and wedge shoe, can not pass or deodorant abotoar the shirt. Types with only one finger of the left hand.
April 14, 2007: donates 10ml of blood for research into ALS and mapping the DNA to the centre of studies of the human genome - department of genetics and evolutionary biology - Office of biosciences - University of Sao Paulo - USP - http://genoma.ib.usp.br / (biologist Monize Lazar Magellan).
April 13, 2007: appointment with Dr. Acary in Sao Paulo (Sao Paulo, Hospital neurologist, a specialist in ALS), confirms diagnosis and prescribes new tests.
April 9, 2007: begins to do acupuncture.
March 28, 2007: begins to do physiotherapy.
March 20, 2007: appointment with Dr. Elza Dias Tosta, PhD neurologist expert in ALS in Brasilia, confirmed diagnosis, new tests and prescribes new medicines.
March 12, 2007: appointment with Dr. Dagoberto Callegaro, head of Neurology at Hospital das Clinicas in Sao Paulo, which confirms the diagnosis of ALS and prescribes new tests carried out during the week in Sao Paulo. Already presents atrophy in the hand and shoulder and right commitment beginning of the left leg. Starts "treatment" with Rilutek (single cure for ALS own but not very much result) and other medicines. Second and last EMG in Sao Paulo. A terrible KNOCK DOWN!
March 6, 2007: orthopedist diagnosed disc hernia, but explains that this has no relation with other symptoms. Neurologist in Brasilia suspected Amyotrophic Lateral Sclerosis - ALS and suggests an appointment with specialists in Sao Paulo. First EMG in Brasília.
February 2007: in addition to the tremors (fasciculations) in the right arm, realized that he was losing the strength of the right hand. Can not open a coke can using the right hand. Lose the balance and falls during the bath, suddenly. Right hand hangs when writing.
December 2006: colleague realizes slighty tremors on the right hand while holding the cell phone.
September 2006: the left leg hangs while a football with friends.
First symptom: 09/2006
Diagnosis: 03/2007
PS. MISSION AND / OR PUNISHMENT? THAT´S THE QUESTION! God enlighten the scientists and researchers!
-- - --
DRUGS AND SUPPLEMENTS
What had used:
Minocycline-100mg 2xday> slow the development of ALS [never] showed that it accelerates!
Tamoxifen-50mg 1xday> slow the development of ALS [never]
Creatine-5gr 1xday> strengthen the muscles?
Nutren Active 1xday one or two full spons mixed on milk, etc> strengthen the muscles and to gain weight
What uses:
Rilutek-50mg 2xday> slow the development of ALS?
Baclofen-10mg 2xday> reduce the muscle spasticity
Anafranil-50mg 1xday> control laughter and / or cry
Lithium carbonate-150mg 1xday> slow the development of ALS?
Vit. E-400mg 3xday> strengthen the muscles
Vit. B12-100mcg 1xday> slow the development of ALS
Ômega3 DHA500-1000mg 2xday> anti-oxidant
Diazepan-5mg before sleeping> relaxing muscles
Mass Hyper Dyn (super calorie) 1xday one full spon mixed on 150 ml of water/day> strengthen the muscles and to gain weight
-- - --
THERAPIES
Acupuncture: Excellent for muscle relaxation and balance - as needed. (physician and acupuncturist: Dr. Maike Schaden Ishida, excellent professional and person).
Physiotherapy: So important to keep the joints and stretching, ONLY liabilities - 3x/wk. (physiotherapist: Adriana Oliveira Carvalho, excellent professional and person).
Occupational Therapy (OT): So important to keep the FINE movements - as needed. (Occupational Therapist: Claudete Monteiro, excellent professional and person).
Speech Therapy: Massage voice and facial excellent. Thankless fight to recover the voice - 2x/wk. (Speech therapist: Marici Cauchioli, excellent professional and person).
Nutritionist: 1x/mth or when necessary. (Lívia Gurgel, excellent professional and person).
JOHREI: Customer religious - 1x/wk. (Zélia Figueiredo, awesome person). www.messianica.org.br
Apiterapia / Apipuntura (Bee therapy): Do not! Extremely dangerous.
Self-hemotherapy: Do not! Extremely dangerous.
Salt Asian black bear bile powder: Illusion, in addition of animal cruelty issues.
http://en.wikipedia.org/wiki/Bile_bear
Chinese Herbs: Pure illusion.
Put your mouse over the images below and click. Ah, comments are most welcome. MANY MANY THANKS FOR YOUR VISIT AND COMMENTS!
STATISTICS MAY 31 2008
LAST UPDATE: DEC 2008 dec 19- WE CAN HAVE MANY LIVES, OR JUST ONE, THE FACT IS THAT WE SHOULD LIVE IT AS FULLY AS POSSIBLE BECAUSE WHEN WE GO TO ANOTHER PLAN, FLOOR, ASTRAL, LIFE, OR WHATEVER IS THE NAME, THE ONLY THING THAT LAST IS LOVE, CARE, AFET , RESPECT FOR THOSE WHO LOVED US WHILE WE WERE HERE. I KNOW THAT THE PAIN STAYS, A VACCUM APPEARS, THE FEELING OF A LACK SHOW UP, BUT IT WILL BE LESS EVERY DAY, AND ONE DAY WILL BE JUST LOVE, GOOD MEMORIES AND GOOD MISS OF YOU..MISS YOUR LAUGHTER, YOUR FUNNY WAY, THE SONGS, THE MOVIES, THE LIFE WE LIVE.I ASK MY BELOVED ONES NOT TO SUFFDER FOR ME, I WANT YOU TO UNDERSTAND I AM IN A BETTER PLACE, DIFFERT FOR SURE, A BEAUTIFUL GARDEN FULL OF FLOWERS, WITH WONDERFUL PEOPLE WAITING FOR ME, A PLACE WHERE PASSAPORT OR VISAS ARE NOT NECESSARY,FULL OF SUSHIS, SASHIMIS, TEMPURAS, KONIS AND SAQUES (AND WITH NO HANG OVER – PERFECT!).
MAYBE THERE WILL BE THAT HOUSE, WITH WHITE CURTAINS AT THE WINDOW, A WHITE SHORT PICKED FENCE, OR MAYBE THAT BEACH WITH WHITE SAND, WITH BLUE AND ESMERALD GREEN WATER, WITH THE ETERNAL SUNSHINE, I DON’T KNOW, THE ONLY THING I KNOW IS THAT IT IS MY TURN TO TAKE CARE OF YOU AGAIN, TO WATCH AND PROTECT YOU FROM THE PLACE I AM, AND WHEN YOU FELL THAT COOL BREEZE OR THAT GOOD WARM…ITS ME HERE WITH YOU. BUT I WANT EVERY ONE TO KEEP SMILING, SO THEN I WILL BE HAPPY AND KEEP DOING HERE WHAT I ALWAYS WANTED TO DO… HELP YOU ALL. I KNOW I AM STRONG ENOUGH FOR THIS, BECAUSE THEY GAVE IT TO ME WHEN I WAS THERE WITH YOU.
19 DECEMBER 2008.
TIME OF PASS: 17:00 HS.
dec 8- BUSINESS WEEK interview
http://www.businessweek.com/magazine/content/08_50/b4112058194219.htm?chan=top+news_top+news+index+-+temp_news+%2B+analysis
oct 25- on feeding tube surgery.
oct 22- start breathing physioterapy - Juliana Pertlle - #1
oct 20- on home-care since yesterday to halt a hard cough - lungs rebelion. On meds, serum - vein - and many nebulization. Cough-assist is coming - http://coughassist.respironics.com/ UHUUU ;)
oct 12- no voice anymore.
oct 10- back to 150mg day on lithium carbonate.
oct 8- Italy- http://globoesporte.globo.com/Esportes/Noticias/Futebol/italiano/0,,MUL791193-9848,00-FOTOS+RONALDINHO+GAUCHO+MARCA+PRESENCA+EM+PARTIDA+BENEFICENTE+NA+ITALIA.html
oct 5- Went to the theater - SO FUNNY!
sep 29- Stopped Li. Didn't work for me, didn't slow my progression.
sep 25- FRS 18 - decline 2 points
sep 22- http://www.als.ca/researchnewsletter/
sep- 2 years as of the first symptom. Voice is going - really sucks!
aug- fighting to preserve the voice! Publish http://www.myspace.com/humbertofrombrazil
aug 28- sign the petition pro IPLEX - #505
http://www.PetitionOnline.com/iplex/
http://give-us-iplex.blog.com/
aug 27- has been visited by a friend Eduardo Schvinger - CA Vice President, Technical Sales – Latin America and the Caribbean - :)
aug 19- buy the Skeleton Key. Smart virtual keyboard.
aug 10- testing a smart virtual keyboard. It's look like pretty good! I'm planning to purchase one. Writing so fast and confortable. http://www.catalaw.com/index.shtml
July 23 08: receives the SmartNav4:AT
http://www.naturalpoint.com/smartnav/products/testimonials/ALS.html
July 14 08: brought the SmartNav4:AT
July 11 08: to click becomes more difficult! Buying the hands-free mouse SmartNav4:AT http://www.naturalpoint.com/
June 25 08: FRS indicator stable in 20 points. New lithium tool http://www.patientslikeme.com/als_lithium
June 20/21, 08: watch and monitor remotely the VII Brazilian Symposium MND / ALS in São Paulo city. http://www.tudosobreela.com.br/arquivos/programa.pdf.1.pdf
June 20/21, 08: watch and monitor remotely the VII Brazilian Symposium MND / ALS in São Paulo city. http://www.tudosobreela.com.br/arquivos/programa.pdf.1.pdf
June 15, 2008: moves to take baclofen 40 mg / day to try to reduce the spasticity. Create and publish the ALS community of Brasilia´s city, Brazil. http://www.orkut.com.br/Community.aspx?cmm=57548361
June 13, 2008: beginning to use a canadian cervical collar. Great!
http://forumelabrasil.forumeiros.com/gallery/ELA-ALS-BRASIL/ELA-ALS-BRASIL-cat_c1.htm
June 12, 2008: interviewed by Andrea Polimeno - Brazilian Medical Research Magazine.
www.revistapesquisamedica.com.br/PORTAL/textos.asp?codigo=11311
www.revistapesquisamedica.com.br
June 11, 2008: planning to insist with Li til have completed 8 months. Next 25th i´ll complete 6 months on it. I´m back to 300mg of Li per day.
June 6, 2008: reduces the lithium of 300 mg / day to 150 mg / day, planning to stop completely in one week. After 5 continuous months on Li, realizes the inefficiency to slow down the ALS progression, in this case! New studies show effectiveness of lithium in 50% of samples. Begins to take Mass Hyper Dyn (super calorie) and Nutren Active.
June 2, 2008: appointment with the nutritionist, Lívia Gurgel, for inclusion of supplement to gain weight.
May 29, 2008: brazilian supreme court approves research on embryonic stem cells - UHU. Quarterly blood tests. Friends in the U.S. buy the cervical collar for me (many many thanks!):
Http://www.symmetric-designs.com/headmaster-cervical-collar--2.html
May 25, 2008: great friend, Nelson Escobar, establishing and adjusting glove and mouse with velcro to set better hands and fingers. Thanks brother! Show!
May 24, 2008: 28/maio scheduled for appointment with Dr. Maike to see models of cervical collars.
May 16, 2008: create and publish this blog.
May 14, 2008: released to take the flu vaccine by Dr. Dagoberto Callegaro, head of Neurology at Hospital das Clinicas in Sao Paulo.
8 to May 11, 2008: trip to Fortaleza with all family. Show! Special thanks to my friends Jackie-Portinho and Nélson-Mônica including all friends of friends.
http://www.oasisatlantico.com/index.php?
http://www.oasisatlantico.com/index.php?option=com_content&task=view&id=57&Itemid=117
May 2008: it is difficult sustaining the neck. Is interviewed by Peter Aldhous, PhD, San Francisco Bureau Chief, New Scientist magazine.
http://www.michaeljfox.org/newsEvents_parkinsonsInTheNews_article.cfm?ID=346
March 31, 2008: create and publish the ALS BRAZILIAN FORUM.
March 2008: can not give more or a step or run stand with support. The speech is very committed and starts to have problems with swallowing. Only to swallow the medicine mixing them with yogurt or ice cream.
February 2008: purchase of bracing for the legs to leave their feet in the position of 90 degrees for legs. It now receive the JOHREI, taught by friendly Zélia Figueiredo.
January 27, 2008: is interviewed by Leo Greene for the Daily Bulletin (CA journaideol). http://www.dailybulletin.com/ci_8089973 - video included.
January 7, 2008: create and publish spreadsheets to track all with ALS and who take lithium in the world, in collaboration with the awesome Karen Felzer, scientist (PhD, geophysics).
http://spreadsheets.google.com/pub?key=pq7l2D-lVjOcsItCl6frJMA
December 25, 2007: beginning of the use of lithium (Italian study http://alslithium.atspace.com/). Nothing to lose, only to gain! At least, we will not be sad. heh
November 2007: purchase of new wheelchairs, most appropriate for your state.
October 30, 2007: appointment and follow-up with top nutritionist. Change in food.
September 27, 2007: begins the home care of Occupational Therapy. You can not enter more, is to use a virtual keyboard (1 click for each letter or digit). Need help position the mouse in hand and can only with a click of the finger left. It gives only a few short steps with extreme difficulty and with help.
September 12, 2007: Physiotherapy, Acupuncture and Speech therapy sessions will become household as the displacement has become extremely difficult and tiring. The home care is even more expensive. Buying the first wheelchair.
September 5, 2007: 4th. and last (so far) appointment with Dr. Dagoberto in Sao Paulo. Need wheelchair to get around the airport. Come with extreme difficulty and very short distances with assistance.
August 28, 2007: the speech starts to be compromised (weak and difficult to talk about some phonemes). It starts with the speech therapy.
August 2007: the company changes its function so that it can work from home only on the computer. Come with great difficulty, only short distances and with the help of another person. The cane does not help more. You can not eat more, bathe or go to the bathroom alone. Need help to turn in bed, sit and lift. Only now are working from home (home-office). God bless you Mr. Ken Arredondo!
July 12, 2007: moved to block 108 north (through a friend-brother) because of the need to be close to doctors and hospitals. The left arm and right leg are also compromised. Stop driving cars.
May 2007: hand and right arm and left leg very committed with greater commitment. It starts to use the cane to walk to (slow, medium distances and with some difficulty). Already unable to write with the right hand, needs help to dress and wedge shoe, can not pass or deodorant abotoar the shirt. Types with only one finger of the left hand.
April 14, 2007: donates 10ml of blood for research into ALS and mapping the DNA to the centre of studies of the human genome - department of genetics and evolutionary biology - Office of biosciences - University of Sao Paulo - USP - http://genoma.ib.usp.br / (biologist Monize Lazar Magellan).
April 13, 2007: appointment with Dr. Acary in Sao Paulo (Sao Paulo, Hospital neurologist, a specialist in ALS), confirms diagnosis and prescribes new tests.
April 9, 2007: begins to do acupuncture.
March 28, 2007: begins to do physiotherapy.
March 20, 2007: appointment with Dr. Elza Dias Tosta, PhD neurologist expert in ALS in Brasilia, confirmed diagnosis, new tests and prescribes new medicines.
March 12, 2007: appointment with Dr. Dagoberto Callegaro, head of Neurology at Hospital das Clinicas in Sao Paulo, which confirms the diagnosis of ALS and prescribes new tests carried out during the week in Sao Paulo. Already presents atrophy in the hand and shoulder and right commitment beginning of the left leg. Starts "treatment" with Rilutek (single cure for ALS own but not very much result) and other medicines. Second and last EMG in Sao Paulo. A terrible KNOCK DOWN!
March 6, 2007: orthopedist diagnosed disc hernia, but explains that this has no relation with other symptoms. Neurologist in Brasilia suspected Amyotrophic Lateral Sclerosis - ALS and suggests an appointment with specialists in Sao Paulo. First EMG in Brasília.
February 2007: in addition to the tremors (fasciculations) in the right arm, realized that he was losing the strength of the right hand. Can not open a coke can using the right hand. Lose the balance and falls during the bath, suddenly. Right hand hangs when writing.
December 2006: colleague realizes slighty tremors on the right hand while holding the cell phone.
September 2006: the left leg hangs while a football with friends.
First symptom: 09/2006
Diagnosis: 03/2007
PS. MISSION AND / OR PUNISHMENT? THAT´S THE QUESTION! God enlighten the scientists and researchers!
-- - --
DRUGS AND SUPPLEMENTS
What had used:
Minocycline-100mg 2xday> slow the development of ALS [never] showed that it accelerates!
Tamoxifen-50mg 1xday> slow the development of ALS [never]
Creatine-5gr 1xday> strengthen the muscles?
Nutren Active 1xday one or two full spons mixed on milk, etc> strengthen the muscles and to gain weight
What uses:
Rilutek-50mg 2xday> slow the development of ALS?
Baclofen-10mg 2xday> reduce the muscle spasticity
Anafranil-50mg 1xday> control laughter and / or cry
Lithium carbonate-150mg 1xday> slow the development of ALS?
Vit. E-400mg 3xday> strengthen the muscles
Vit. B12-100mcg 1xday> slow the development of ALS
Ômega3 DHA500-1000mg 2xday> anti-oxidant
Diazepan-5mg before sleeping> relaxing muscles
Mass Hyper Dyn (super calorie) 1xday one full spon mixed on 150 ml of water/day> strengthen the muscles and to gain weight
-- - --
THERAPIES
Acupuncture: Excellent for muscle relaxation and balance - as needed. (physician and acupuncturist: Dr. Maike Schaden Ishida, excellent professional and person).
Physiotherapy: So important to keep the joints and stretching, ONLY liabilities - 3x/wk. (physiotherapist: Adriana Oliveira Carvalho, excellent professional and person).
Occupational Therapy (OT): So important to keep the FINE movements - as needed. (Occupational Therapist: Claudete Monteiro, excellent professional and person).
Speech Therapy: Massage voice and facial excellent. Thankless fight to recover the voice - 2x/wk. (Speech therapist: Marici Cauchioli, excellent professional and person).
Nutritionist: 1x/mth or when necessary. (Lívia Gurgel, excellent professional and person).
JOHREI: Customer religious - 1x/wk. (Zélia Figueiredo, awesome person). www.messianica.org.br
Apiterapia / Apipuntura (Bee therapy): Do not! Extremely dangerous.
Self-hemotherapy: Do not! Extremely dangerous.
Salt Asian black bear bile powder: Illusion, in addition of animal cruelty issues.
http://en.wikipedia.org/wiki/Bile_bear
Chinese Herbs: Pure illusion.
Put your mouse over the images below and click. Ah, comments are most welcome. MANY MANY THANKS FOR YOUR VISIT AND COMMENTS!
STATISTICS MAY 31 2008