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, eventually I think we could accommodate 6 including my 2. We have big screen TV's, 2-Playstation 3's, A bathroom capable of the full spa treatment, including a whirlpool tub for relaxation and therapy, electric hospital beds with specialized mattresses, and last but not least home cooked food to die for. Interested or know someone who might be, please contact me. Payment for services can be co-op or wavier or as negotiated. Should this prototype work there could be homes all over the country to assist others in need. I know my next one would be in Myrtle Beach South Carolina. I will be completing my nursing degree in the near future and am well experienced in all care for Duchenne including Trachea care for vent dependant young men. Yes, I will be hiring additional capable help.
Will we need funding, you ask? I am sure that we will and my thoughts on the subject are as follows. I would love to hear yours:
My basic thoughts are, MDA does a miraculous job of fund raising for the cure and we all want a cure for all types of MD. But, and this is a big BUT, you have to survive while waiting for a cure, you have to try to have a life while waiting for a cure. You are tried, frustrated and fighting the system, be it health care, or the schools, or whoever. You need to know there is somewhere you can turn to when you need help, the person, the family, not the disease. I read a couple of blogs where parents are trying to fund raise for themselves. Let’s pool those resources and raise funds for each other, for our quality of life. Let’s help each other, when you can’t afford groceries, or medications, or a shower chair, or a new wheelchair or an adaptation to your home. I have many people who tell me they won't give because it all goes to research or to administrative costs, let's remove that argument and offer an option of giving to help a family directly. A not for profit organization could fund additional respite for families instead of just one week a year or when they are older, no weeks a year. This could be an arm of MDA, or PPMD to assist the actual person and their families. Long winded aren’t I? Obviously, I have a lot to say after all these years. I am trying to think outside of the box or the wheelchair as it were and I would appreciate your views as well as others who are interested in making a quality of life change. Thank you for reading my blog and I look forward to many new friendships through PPMD.