Despite having had all his pills on time, Dad was having so much difficulty walking at lunch the other day that I ordered an ultralight-weight folding portable wheelchair off of Amazon.com to use when we go places with him. The wheelchair weighs about 20 lbs., light enough that I can get it into the trunk of the car alone. Without a wheelchair that light, it would require 2 people to get Dad to doctors’ appointments and social events, not a very feasible situation most of the time.
Once a PD patient reaches their maximum medication dosages, there isn’t much more that can be done other than to try to maintain the patient’s current status. Basic movements such as walking, bending, and balance become very difficult. The constant or near constant tremors and effort required to perform basic tasks cause PD patients to become easily fatigued. Even though tremors are involuntary, they still consume energy. Imagine moving constantly during waking hours and never resting, it would be exhausting. This is the point we are now at.
I have looked at used medical supply stores, but they don’t seem to carry the type of wheelchair I was in the market for. Besides the light weight and foldability of the chair, it also has a nice set of hand grip brakes, seatbelt, and foot rests. It retailed for about $150 on Amazon. Despite the cost, I think we need the chair or resign ourselves to being house-bound most of the time. This is not a happy thought, especially during the holidays.
Medicare and insurance companies will only pay for extra-heavy duty non-portable wheelchairs that even my husband cannot lift. Thus we are left with the choice of purchasing a portable wheelchair at our own cost. Forgoing such an expenditure would create a living situation so challenging that it would be nearly unbearable. Such out-of-pocket expenditures are partly what contribute to the $5000 or so per year that the average American family spends on eldercare.
Dad and I have stood in the rain for 15 minute stretches at the base of our street-to-house stairs while he gathers up the willpower and energy to climb them. Sadly, not only is there not enough room around our home to build a wheelchair ramp (a contractor took measurements and declared it impossible already), but Medicare will not pay for a wheelchair ramp because it could be used by people other than the intended recipient. Of course this rationale is completely ridiculous because someone other than the intended recipient could use a wheelchair at times also. This leaves families with room around their homes to install ramps at their own cost, or they may qualify for assistance with some programs.
Thus, we progress into a new stage of PD and learn to cope with the changes.