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Old 11-05-2003, 01:10 AM #1 (permalink)
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Join Date: 2003
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New Member
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Join Date: 2003
Posts: 43
johnnyd is an unknown quantity at this point
Default information to the newly diagnosed.



Topic Health

ALS. Amyotrophic Lateral Sclerosis (aka. Lou Gehrig's Disease)
This disease must be made more aware of as statistics climb.
ALS destroys motor neurons that are an important link in the nervous system, and through which the brain controls the voluntary muscles throughout the body.

During my time with this illness. I have researched this disease from caregivers to other patients living with this devastating disease. I can only offer advice to others that may get hit with this dreadful journey. When I was first diagnosed I was informed that it affected sporadically 1 in 100,000. Recently I have learned it affects 6 people in 100,000. it is time we inform ourselves what this ALS is? There is no cure. There is much information online at (ALS.CA )ALS SOCIETY OF CANADA.
My name is John Arangio and I was diagnosed With ALS in January of 2000. I had symptoms at least one year Pryor. I believe I'm close to my end. I have advice to the newly diagnosed. It is Almost like building a hockey team. You have your star players and relief key players. My wife is a flight attendant. I have 2 children still in school. My key players are first of all, my wife Rita who is with me through every doctors appointments and every test that was performed, including the MRI In London 4 years ago at 3 am in the morning as we drove from Guelph. She is the Captain. And her care can only be valued as “priceless “. As to name the rest of my team, I begin with my doctor, Dr John Turnbull who has kept my care up to date with the latest drug trials and has made this illness as painless as possible. His research resides at the ALS clinic at McMaster University Research Hospital in Hamilton, Ontario. His assistant in charge of the Clinic. Ishtar Gabriel, is wonderful and also a key person who gets to hear all my latest comments to all of my concerns via e-mail as I cannot speak. And is on top of my medication needs + more. Ishtar promptly returns my E-mails with kind words and the right answers to put my mind at ease. The mind doesn't stop. It works overtime every day and every night. It needs answers because the mind wants to control. Going down my list of team members. My daughter Vanessa and my son Sebastian remind me that I am still a father as they provide me with the normal challenges that teens could endure. They are both wonderful and of course my biggest accomplishment in life. My parents Sebastian and Maria come up from Toronto once a week as my father is still employed and my mother does not drive. And now my therapy partners team. The awesome occupational therapist. Brenda, Who has provided me with all avenues in keeping me as mobile and active with wheelchair, and all information of equipment needed for this disease. She has been one step ahead, all the way. Anne my physiotherapist, my nurse Janet and last but not the least. Virginia, my home care person provided by the Red Cross. Virginia has been with me since the first day I required assistants to get up each morning as my movements diminished. I must mention that the ALS society has been there with my team every step of the way. I am now pretty much paralysed. I have very little movement in my right leg and foot. (No strength) and little but weak movement in my neck. Which explains my only communication advantage? Through amazing technology. I have an invisible reflective dot pasted on my glasses that reflects off a device placed on my laptop to allow me to move the cursor on my computer screen and using software driven on screen keyboard. Thanks to Steven at the technology access clinic at the William Osler centre in Hamilton arranged by my occupational therapist.

What a team! I WILL REMAIN ON LINE FOR ANY QUESTIONS.

John Arangio
(aka. Downtown)
Guelph, Ontario.
johnnydowntown@rogers.com
P.S. Go Leafs Go.
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