For me, it was all about finances and our capability to provide what Heidi needed. With every trip down to UCLA (every 6 mos) Heidi had lost bits and pieces of mobility and with every trip came the same recommendation..Figure out how you are going to keep Heidi safe and comfortable as the disease takes over her body.
At this time, Heidi had a PPO insurance carrier through her work, so there were no issues with seeing doctors that she needed to see. Getting the "durable equipment" we needed for her comfort and mobility was a different story.
One thing you have to be wary of, there are a lot and I mean a lot of unethical companies out there that will promise you the world, oh don't worry about your insurance covering this, we work with them all the time and will make sure that things will get covered. This only happened one time, but it was a $5000.00 one time that hurt. We had bought our beds with that promise and after 6 mos. of wrangling and finally no call backs from this company I realized I had been duped. The beds by the way were one of our best investments into Heidi's care, oh yeah the owners of that company were bought out by a larger company that I understand are a tad more reputable. Heidi talks about this bed in one of her earlier blogs
Besides the bed, the next biggest thing was her wheel chair..my recommendation is, work with a company that is local and or within a 1-2 hour drive...service capabilities are huge. Next make sure that company works with your local MDA chapter. Superior Mobility out of Ventura CA was the company we ultimately went with, as they were one of the MDA "closet" providers..As people pass,families would donate items such as hoyer lifts (we were loaned an electric system to use) it was on loan to us for 6 years. I recently gave it back, along with Heidi's wheel chair and every other durable piece of equipment that made Heidi's life better. Chairs are extremely expensive, this is an expense that most insurance companies will only pay for once.
MAKE SURE YOU GET A CHAIR THAT WILL ADAPT AS YOUR DISEASE PROGRESSES
The chair must have belts and straps to maintain stability in the chair, it must have the capability to change from hand control to other methods for control, one method is the puffer where you puff into a control mechanism to steer, go forward,back etc. Heidi still had great control of her head, neck but her breathing was starting to get shallow and labored, so we went with the head control mechanism instead. The chair also should have a hand control for the caregiver, as over time, all body control will be lost and it will be up to the caregiver to motor you around.
After having this chair for 4 years, Heidi and I had only a few regrets. 1) We opted for the feature which would allow Heidi to raise herself up ~ 12". She really enjoyed getting eye level with people while in her chair. The only limitation to having this is that you give up the cradle for the eventual respirator, Our other regret was not getting real wheels (rubber with air) We got wheels with molded rubber, very unforgiving on bumps, no traction when things are wet. Working with Superior was for the most part a great experience. Very knowledgeable, provided feedback quickly on what had to be adapted next on the chair and always worked with our insurance for approvals..okay.
Thats it for now, Ashton complained that my entries are too long...I will talk about things we did to our home next...thank you for reading.