Metachromatic Leukodystrophy (MLD)

Some of my energy has returned. And as i was driving to work this morning I thought about all the positive changes that have been made.  Yes, I meant positive.  In spite of Laura's horrible condition we are grateful that she has now come to accept her condition as well as willing to talk about her condition and go "public".  This was evident last month when she insisted on going to a Leukodystrophy medical symposium in Buffalo, NY  where she was ready to say, "Hi, I'm Laura and I have MLD". 

Other changes have occured that have made our life easier. 

I manage more of the administrative side of dealing with this disease (Darlene manages the medical end such as appointments and medications).  So looking back over the past year we've successfully navigated through the system and set-up the following safegaurds:

• Laura was fast tracked by Social Security under their compassionate care program to receive benefits.
• Laura was moved into the Maryland Medicaid program and later upgraded to Maryland's R.E.M. (rare and expensive case management) program.
• We had a wheelchair ramp built.
• We installed an umbrella with a 9' circumference on the back deck that allows Laura to spend time outside without risking exposure to the sun.
• I installed safety grab bars in both bathrooms and in some of the main hallways that are used.
• We had a stair glide installed so Laura could stay in her bedroom
• We have a special hospital bed which makes transport into bed easier and sleeping safer.
• We bought Laura an i-pad to engage her in activities and intellectual activities.
• We have on order a "standing turntable" and will soon buy a "sitting turntable".  These can also be called "pivot boards".  The standing turntable is a 17" wide disc that is placed on the ground. Laura will stand on it and with the help of a cargiver will be rotated in the position required.  This will especially help when putting her in the car or taking her out.  There are times when her legs do not respond to the commands that her brain sends (just one of the many short circuits). I typically have Laura wrap her arms around my neck while I hold her around her chest while picking her up to reposition her.
• We have a couple of wheelchairs - one used on the first floor and the other, which is narrower and lighter, used on the second floor and when we are out and about.  The lightweight chair makes transport a lot easier and reduces strain on our backs when we put it in or take it out of the car.
• One of the manufacturer's rep's that works with my company, Douron, Inc., donated a commercial grade health care chair that tilts, has a foot rest, high back with headrest and is covered in healthcare vinyl

Otther things that we are currently setting up:

• modify one of the bathrooms to allow roll-in showers.
• build an accessible "garden table" so Laura can access a table full of plant and flowers, water them regularly, prune them when needed and watch them flourish.
• complete a ground level patio so Laura could join us while relaxing in the backyard and enjoy the firepit.
• Setting up a caretaker team with the involvement of grad students of Towson University's Occupational Therapy department.