05 February 2011 - by ~ 0 Comments

Well Equipped

How much medical equipment does one need? If you have DMD or a similar condition then the answer may be A LOT. I am certainty in the A LOT category. Let’s see if I can name everything I have:

  1. Primary Power Wheelchair (obviously) with tilt/recline seating, seat cushion, micro Joystick.
  2. Backup Power Wheelchair with tilt/recline seating
  3. Several boxes of old power wheelchair parts
  4. Hospital Bed with special skin-protective mattress
  5. Power Lifter and sling.
  6. BiPAP machine (times 2, one advanced BiPAP for nighttime use, one basic BiPAP for use in bathroom.)
  7. BiPAP masks: full face mask for nighttime, nasal pillows for bathroom and various other masks I tried but my face hated.
  8. LTV-800 Ventilator with mouthpiece interface including a plethora of tubing, various fittings, filters and other parts.
  9. External vent battery.
  10. Cough Assist machine with its own mask, filters and tubing.
  11. Portable section machine with its tubing and filters.
  12. Pulse oximeter with reporting capability along with finger sensors.
  13. Battery chargers: wheelchair chargers (2), external vent battery charger, vent AC adaptor/internal battery charger, vent car power adaptor, suction machine charger, power lifter charger.
  14. Tilting shower commode chair
  15. Blood pressure meter
  16. Bed call button and alarm.
  17. Vortran percussive nebulizer (rarely if ever used)

There’s got to be stuff I missed but with all I have it’s easy to forget.

Using most of this equipment everyday is not without trouble. Everything will be running smoothly and BAM, without warning something breaks, malfunctions or does something even more bizarre. And it is usually the expensive stuff that breaks the most.

My power wheelchair is the usual culprit and getting it fixed sometimes means me staying in bed for the day. If it’s more than a day then I am up using my backup power wheelchair which I can barely operate. But I don’t complain (too much) because I feel fortunate having something to sit in and not everyone has that option.

My second most popular thing to break is my ventilator and that usually gets exchanged right away because it is absolutely essential to have a working vent. That goes without saying… Before it is exchanged out guess where I am! …Bed.

But beyond the problems that arise the truth is this: without this technology those of us older guys with DMD would not be here. And that’s just the medical equipment. There is also necessary medication and other daily living supplies and equipment that improve our quality of life. Access to this equipment is absolutely essential and I am thankful to have it.