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Michael Piacentino Male Penfield, NY United States: Favorite

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Driving Modifications for Handicapped Accessible

Started Sep 4, 2017 0 Replies 0 Favorites

If your van has been modified for driving for our son, I would be interested in speaking with you to identify the agency or company or certified person who did the assessment for you and what was…Continue

Driving Modifications for Handicapped Accessible

Started Sep 4, 2017 0 Replies 0 Favorites

Driving Modifications for Handicapped Accessible

Started Sep 4, 2017 0 Replies 0 Favorites

Wireless Monitor or Alert device

Started this discussion. Last reply by Michael Piacentino Jul 10, 2013. 4 Replies 0 Favorites

So, my son is 19, I am in need of a device (waterproof/shockproof) that he can wear on his wrist or as a pendant that he can push on a button and have an alert signal trigger a similar device that I…Continue

Tags: alerts, alert, monitoring, monitor, Wireless

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About me:: Update:
Recently got a second chance at living, feel like 30 again.

But 20 years ago 12/31/1997 @12:30 pm, entered the office and Dr. Tawill announced your son has DMD. Yep, New Years eve, 11 days after the final test a biopsy. What a jackass, couldn't he have waited... The after the first exam in September I asked, what's wrong with my son; response "You don't want to know". So, yes doctors are three rungs higher than lawyers on my list of Cretins-4-Compost.

About my family:: My son is 24 with DMD, I'm still on the the dark side of adjusting to this disease

Almost 35 Years ago, I caused myself the worst searing emotional agony I thought possible. That was benchmark, DMD is not as hurtful; Jonathan I still have my son with me.
Really the alternative sucks.
Yep, finally, I "Got A Life", and all my emotion, energy, dollars and love is somewhat tightly focused on my son; OK a little goes into hunting and fishing, but not much.

Name(s) of child(ren)/individual(s) with Duchenne:: Jonathan

Age(s) of child(ren)/individual(s) with Duchenne:: 19 or older

City:: Penfield

State:: New York

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At 4:36am on March 3, 2013, David K said…: Hi Michael,

I certainly recognse the dark side myself, although my dark side is mostly directed towards our politicians and most parts of our incompetent public healthcare (in Sweden).

I'm very interested in your drug coctail, (ie what drugs you're giving, what dosage you're using, when you started) as my son is 6 and I can't get proper answers from our doctors (apart from using corticosteroids).

Best regards

/David

At 9:20pm on June 1, 2012, Andrea Cleary said…: I like your "dark" style Michael. Came across it doing HGH research. Thanks for giving your honest opinion, and the clarification after.

Andrea