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Michael Piacentino
  • Male
  • Penfield, NY
  • United States
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Michael Piacentino's Friends

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Michael Piacentino's Discussions

Driving Modifications for Handicapped Accessible

Started Sep 4 0 Replies

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 0 Replies

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 0 Replies

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

Wireless Monitor or Alert device

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

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

 

Michael Piacentino's Page

Profile Information

About me:
I am the dark side of DMD Parenting. I am the one who expresses the anger, frusteration, depression and emotional pain of a parent. So my post tend to be somewhat 'tactless' and perhaps politically incorrect. Been playing the DMD games since 1997, so I know a bit about what happens.
About my family:
My son is 23 with DMD, I'm still on the the dark side of adjusting to this disease, been 19 years since diagnosis.

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. You have to man-up and cherish every moment, truly today is all we have, live it fully with love, vigor and and happiness.
Really the alternative sucks.
Yep, finally, I "Got A Life", was not what I hoped for, but playing the hand I got dealt...............
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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Comment Wall (2 comments)

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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

 
 
 

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