Vickie Lee Beard
  • Female
  • Bowie, MD
  • United States
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About me:
Just attended PPMD in DC and all I can say is WOW. The energy, the commitment, the unity. I am overwhelmed. I am a full time care giver for my two sons David 33 and Patrick 31. As well as a caregiver for our new addition Scott, 22 and recently out of the nursing home. I am the administrator, chief cook and bottle washer. Medical manager, insurance negotiator, transportation specialists and all around mom make it work guru. It was my pleasure to be included in the trip to the hill requesting that the MD CARE ACT BE REAUTHORIZED. I felt good about it, but we are in liberal democratic MD. I'd like a year to prepare and then the opportunity to pitch to the other side.
About my family:
As above ,my boys ,our new boy ,two bulldogs ,and the man of the house who keeps it all real, the dad Dave. We are good we are all pretty close and happy with our lot as it is.The guys have each other and their video games, their social media, fios, family and friends. We get together outside by the pool and the tiki hut in the good weather, and inside by the big screens when it's cold outside.
Name(s) of child(ren)/individual(s) with Duchenne:
David and Patrick and Scott
Age(s) of child(ren)/individual(s) with Duchenne:
19 or older
City:
Bowie MD 20715
State:
Maryland

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Vickie Lee Beard's Blog

The Biggest Rip Off Of All

Posted on December 12, 2008 at 11:23am 7 Comments

December 11, 2008

I have two sons with Duchenne Muscular Dystrophy; age 27 and 29 both have lived past their life expectancy of late teens to early twenties. Both require constant care and assistance with all daily life activities. That being said both are wonderful bright young men with outgoing personalities and great attitudes.

Both of my young men need durable medical equipment for a variety of reasons, for now I’d like to talk about David and what I’ve just discovered about DME… Continue

Home Care for DMD guys

Posted on December 8, 2008 at 4:09pm 0 Comments

Hello to All,



I am trying to establish a home and respite for DMD guys and their families. My home is accessible and I could, if need be tomorrow, allow 2 guys to move in full time. Since my 2 sons are 27 and 29 we are pretty established in our routine and have the capacity to help others do the same. I know there are a few guys in Maryland in nursing homes; one of my first goals would be to reach out to these fellows and offer them a home life. Next, guys in the community,… Continue

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At 1:08pm on February 11, 2009, Katherine M. Reynoldson said…
Hi Vicki,
Here is my contact information KMrey@aol.com. Please shoot me an email and I will make introductions between yourself and Louie Boitano RT at the U of W who is very involved in the DMD community and will be a good resource for you re: sip and puff vent. set up during the daytime. I also posted a comment on the Vent users site to you :-)
Katherine
At 4:46pm on January 25, 2009, Robyn Hoffman said…
Hello Vicki;
I haven't been on the site for a while now, we haven't resolved the distention issue. Curtis does not have a G-Tube any longer so your suggestion isn't possible, thanks. It is a constant dilema of sorting out one mangement situation to the next. Unfortunately his primary care physician is not very engaged... this makes it very difficult in acquiring the support Curtis needs. Alternate Dr's. not taking new patients in his community- there is a real shortage. As a nurse I struggle with being his health care advocate a lot! Love to get to know you-
Robyn :)
 
 
 

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