Old 11-05-2003, 02:10 AM #1 (permalink)
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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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Old 01-27-2004, 03:48 PM #2 (permalink)
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Hey John aka Downtown,

Just read your post, it made me cry. I lost my mom to ALS on November 8/03, they diagnosed her on October 24/03, but they figure she had it for about 2 years.

I just wanted to comment on your courage and strength of character...it's amazing! It reminds me of my mom she was brave right up to the end.

I was her caregiver and it was so difficult at times to be that. Some days I just wanted to be her daughter and have someone else do the hard stuff. But as hard as it was I would not have had it any other way, it was a privilege and a blessing to be able to care for her. The only thing I would change if I had it to do all over again.... I would just do it better.

John, I'm a Newfie so you know I lived in Toronto for a while, even though I live in BC now I'm still a Leaf's fan. Go Leafs Go!

God bless you and your wonderful family.

Sonia
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Old 01-27-2004, 11:58 PM #3 (permalink)
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THANK YOU for your thoughts. It is rough for both parties involved.
i"M glad to see that we are all hockey vans. we have all lived in the great city of Toronto. This has to be the year for the leafs Kathryn Boeyen and Sonia. otherwise I'll never will get to see the Stanley cup in my life. Last chance for me. 1967 i was 6 years old. So it doesn't count.

god bless
John
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Old 01-31-2004, 08:33 PM #4 (permalink)
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Hi Downtown
I have read with enjoyment your postings since I joined this forum. I haven't participated in many of the discussions since others, more sensitive than I are able to say the kind words that soothe. (I'm still not in touch with the right side of my brain.)
I lost my wife two years ago to ALS... she slipped away one night when we weren't looking! Like you, she was at peace with herself... but still dug in wringing the last of life out of her body. I am truly amazed at the human spirit... and you only seem to strengthen my beliefs. Hang in there. Nothing is more enjoyable than your dissertations.
I am Italian as well... and a Leaf fan! I sit here with my plate of pasta and a fine chianti (my wife's favorite chanti) and reminisce about the last cup win (I was 16) My dad (also a Leaf's fan) told me that there were two kinds of people in this world... Italians and those who wish they were... you make me proud!
I hope that you can see your way clear to staying with us, but if you decide it's time to check out... perhaps you might help out the blue and white from the other side!
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Old 01-31-2004, 09:54 PM #5 (permalink)
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Hi Carol:

I have read, with delight, your postings as well. Your dynamic bed bouncing position changing technique, and, I believe you are the Grand Bend red stringed bikini woman leads me to believe, that, somewhere in your ancestor's deep, dark past, some rogue Italian blood has found its way and is coursing through your veins. All Leaf fans have a sense of humour... a requirement over the past 36 years... although a 5-1 drubbing of the Sens tonight is more than satisfying! Take care... cherish the humour... don't lose it.

John... I hope that you are enjoying the butt kicking at the ACC!
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Old 02-01-2004, 02:40 AM #6 (permalink)
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Thanks TBear for your thoughts. I'm sorry to hear about your wife. It is a shocking disease. Then we have our leafs. It is just as well they haven't won the cup. It would shock us so bad that some of those season ticket holders would probably have a heart attack.
I feel ok. The morphine must work as I'm not gasping for air. My sense of humor is pretty good although my wife doesn't think so. What does she know? Lol.(everything) .
Carol lets here your shower techniques. Poor Henry. My wife punished me. She said after all she does for me. She wanted help to bathe me. So she got the Red Cross to send me home care to shower me. I was very shy and embarrassed 4 years ago. But I got used to her after I saw her for 5 minutes. As my wife was expecting an older woman with plenty of experience. She was older all right. Older than my 16 year old daughter. Hahaha. Every morning my 20 year OLD home care worker comes to get me up and brush my.....ahem....teeth. .. Damn she is 24 now. But I will bare with it since it helps my wife Rita.

5-1 leafs over Ottawa good for any day of the week.

l8r
Friends.

John.
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Old 02-01-2004, 02:50 AM #7 (permalink)
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sorry, that's hear not here. I can't wait to hear how Henry gets showered. T-Bear , hang onto your seat.

John
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Old 02-01-2004, 09:23 PM #8 (permalink)
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I read John's reply about his 24 year old shower buddy and promptly spilled my bran flakes on the floor! My dog made a bee line and got most of it before I managed to gain my composure ( 5 second rule my a__) and get it back in the bowl! It is gratifying to know that, at least ALS does not rob the libido.
I even went to church today as a precaution for finding out Carol's shower technique! John, I hope that you're hanging in there and are not over-filled with the anticipation.
Super bowl... beer... wine... and possibly the best chili that I've ever made. Something that I'm sure to pay for tomorrow... that and whatever the bran flakes do my golden retriever. The more I watch the game... the more I like the commercials... and the cheerleaders.
take care all.
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