I was raised on the premise that money matters should not be discussed in a public forum. It was best to keep such things close to home.
Multiple Sclerosis and money, unfortunately, go hand in hand, and it's difficult to have meaningful conversation about MS without mentioning money.
We've often addressed the financial reality of living with multiple sclerosis as it pertains to health insurance. But there are are many budgetary considerations above and beyond medical insurance and related expenses.
The most obvious and devastating financial consequence of MS relates to employment. Many of us can no longer function at our previous jobs. The switch from full-time employment, with its associated benefits, to lesser employment or part-time work hits hard. Just as our medical and financial needs grow, our income declines.
In many cases, family members also see a drop in income due to the role of caregiver and the restrictions it places upon them.
There are other expenses, such as the purchase of assistance devices and home renovations that may need to be made. My own list of purchases, large and small, looks like this:
$ cane + folding cane for travel
$ lightweight, folding wheelchair
$ tall kitchen stool for working at the counter
$ lightweight, floor-gripping slippers
$ "sensible" shoes
$ device to help open jars and cans
$ special "no-grip" writing pen
$ shower chair
$ laptop so that I can continue to work even when I can't sit up straight
$ magnifying glass for close work
$ Wii Sports and Wii Fit -- we probably would have purchased this anyway, but it has proven to be the single best route to movement and exercise for me
Additional spending for MS patients includes:
$ sturdy wheelchair
$ grab bars for tub and shower
$ wheelchair ramp or other home renovations
$ necessity to move to home with no stairs
$ blow dryer stand (probably the next item on my list - for those days when I simply cannot hold the blow dryer up long enough)
$ assistive devices for vision and hearing impairment
$ computer based technology
$ a variety of devices to assist bathing, toileting, traveling, dressing, cooking, eating, and sleeping
$ vehicle alterations
$ home health care workers and other helpers
$ air conditioning or fans to avoid overheating
No matter how you slice it, money matters when you have MS, and it involves the whole family. The encouraging news for someone like me -- and perhaps like you -- is that there ARE a lot of things we can do to maintain or improve our quality of life. Similarly afflicted people of previous generations had no such advantages.
If you are in need of assistive devices but cannot afford them, please contact your local chapter of the National Multiple Sclerosis Society for information on local services and programs.
What have you, as a patient or as a caregiver, had to purchase in order to deal with MS?