[becky]

Hi Leah.  This is good to know.  Thanks for sharing.  I have been taking a cleanse more pill daily for about 10 years.  It is all natural and a non stimulant.  I have often thought about switching to Miralax but I cannot seem to make myself start a new regime when something else is working.  However, there are other GI issues that have me thinking it is time.  I thinking about seeing a GI doctor in the future.

[becky]

So glad you shared this story.  I have LGMD and would like to reach out to Ralph Yaniz but not sure how.  I am not so tech savvy.  I want the lawmakers to reinstate the option for those disabled people that work the option to buy Medicaid as a secondary insurance to cover PCA services.   That is how I paid for PCA until it was removed in 2014 with the Obama administration healthcare. Currently Medicaid is weighed down by all those people on Medicaid that are able bodied and can work, by those that use the PCA service for housekeeping only or transportation to the store and by those with significantly less severe impairments than mine.  For example, a 9 year labeled as ADHD getting PCA services so they help him with homework, getting a bath, etc, so the mom can have a break. Are you serious.  The child gets the same hours I get, 30 hours.  I am wheelchair bound and my getting help is a matter of life and death.  A mother with no job and already on welfare and has a child with ADHD which they label so many children.  It is known in most lower class communities that a parent can get an SSI check if their child has this. SSI is the new popular welfare. And they learn through people that work at these PCA agencies that they can basically get a babysitter through Medicaid so now I am competing with a child to get services because the people they hire are lazy and want to do as little as possible.  Since I require more help, of course they choose to help a child who has some attention probs.   This needs to change. The rules need to change.  We have created a monster as far as I am concerned.  The people that really need the help cannot get it and I am sick of it.  I also want the private and Medicaid and Medicare to pay for DME that we need like shower chairs, standers, seat elevators on our electric wheelchairs, etc.  I also want private insurance to pay for me to have  physical therapy, whenever I need it to maintain my function.  I should not have to wait for a contracture to cause pain.  I want my voice to be heard but I am tired and do not know who to speak to.  I work full time and deal with every day issues that able bodied people deal with in addition to my issues with my LGMD.  I am tired.

[becky]

I really never thought about disability pride or being proud of my accomplishments until recently.  Like you Dani I have just tried to navigate through life the best I can.  While this amazes and inspires some people–that I work and drive and have been well cared for–I feel I am doing normal things-certainly nothing special. I have recently accepted me for me and I try not to compare myself to others because I think we are all special and amazing without doing anything extraordinary.  I am proud that I earned my bachelor’s degree in business administration, that I am a productive member of society for 23 years and that I can drive modified.  I amaze myself  that I can do quite a bit of cleaning from my wheelchair.  This makes me proud. I am very weak and tire easily but I am not a lazy person.  This makes me proud. My parents have been my inspiration.  I hope I inspire others to appreciate their mobility and not be lazy.  People are more proud to be disabled within the last several years but it was not like that when I was growing up.  I consider myself a work in progress.

[becky]

I agree.  Does anyone know if there are any trials for LGMD type 2A.  I saw one for type 2D.  Why did they choose 2D?  It appears 2A is the most common type because more people have it.