Today, I Feature a Guest Post for you!

Turning Frustration into Power
by Jennifer Digmann

I still can hear Jim saying, “If it has wheels, it’s going to give you problems.”


That phrase repeats over and over in mind, and I smile. I smile because Jim always will be very special to me (he was my first male caregiver who was not my husband or my brother). I smile because thinking of Jim  brings back good memories of cheesy jokes and great baseball games.


I smile at the irony of having wheels equalling having problems.


In my case, wheels are necessary for my independence. Since 2002, my MS has progressed so that I’ve become reliant on using a power wheelchair. And thus, the wheels I’m referring to are on Grape Ape. Yes that Grape Ape, the name I gave my power wheelchair that is not even 3 years old!


Got wheels? Yes, big problems indeed.


I started using that chair specifically for pressure relief. Grape Ape “tilts in space,” which is just a fancy way of saying, “reclines.”  This chair is supposed to take pressure off my tush, thus alleviating painful pressure sores that come with sitting in a wheelchair for several hours each and every day.


But sometime last week, Grape Ape would not recline. Instead of tipping back, it stayed stationary and started grinding much like when your car doesn’t turn over after the battery just died. You know that sound, right?


And this meant I needed to make the hour-long drive with one of my caregivers to Saginaw Medical Supply, which is where I got the chair and is the closest possible place for me to have it repaired. Roger, my favorite Saginaw Medical Supply contact, warned me, “Fixing this will probably be expensive.”


Roger always has been straightforward with me and sets my expectations when repairs for my chair can be costly. And after further investigating the car-battery-gone-dead-grinding noise Grape Ape was making, he confirmed that yes, this repair was going to be expensive.


I was disappointed to hear that the part I needed no longer was covered under a warranty. Disappointed, but not surprised.


What surprised me was this: I had to pay up front to fix the chair that Medicare purchased for me because there is no guarantee that Medicare will fund such a repair expense.


That was where my frustration and confusion grew. I questioned Roger, “So Medicare would likely pay the expense incurred because I developed a pressure sore (i.e., reactive) but not pay to fix the chair to avoid such a sore (i.e., proactive). Does that make sense to you?


I wonder if Medicare is still trying to recover from the Scooter Store fraud that was uncovered earlier this year. According to an ABC News report,  “The government audit found that seniors with no medical need for a power chair had nonetheless gotten one through the Scooter Store—an outcome due in part to the company’s skill at badgering doctors to prescribe its products.”


So why do I, and countless others who actually need such a chair have to pay for this?


But I am turning this frustration into power. I am contacting my state and federal legislators to see what I can do to ensure this sort of abuse does not happen again. And I encourage you to join me in helping to protect our independence and the rights of those who cannot defend themselves.


And now I’m smiling because of a different kind of irony: I’m standing up for myself and others, and I haven’t stood on my own (link to http://www.healthline.com/health/multiple-sclerosis/effects-on-the-body#_blank) for more than 12 years.




*****


Thank you Jennifer (and Dan), for sending to me your well written article. I was happy to share it on  my blog.

I also am having issues with a wheelchair -- that is, getting the assistance I need to procure one. For now all I can say is, "Argh!!!"

Good Night, TTYL, and Be Well