Over recent months I have developed a percolating need to share, with those who care, an overall description of “my” MonSter- Multiple Sclerosis. I am possessive about the disease because what I experience isn’t necessarily what other MS-ers experience, but I am fairly certain that Progressive MS-ers, like me, deal with much of the same debilitation. I am actually envious of Remitting / Relapsing MS-ers because they have treatment choices to "possibly" slow the progression of their version of the disease. Progressive MS-ers have no choices. Counter intuitively speaking, our version of Multiple Sclerosis is the same, but different and we are all heading in the same direction without a cure.
Before launching into my description of my disease, let me say I am extremely fortunate- much more fortunate than many MS-ers . I have an incredibly supportive and loving wife (and Mother In Law) who I know will do anything to help me. Many MS spouses leave their MS-er because it is quite an undertaking to care for a person with this disease. The sacrifices are enormous and life changing for everyone in the family.
Due to my own personal vanity and general desire to be positive, I have not been completely honest with everyone. When, and if, you have seen me in 2011, 2012 or 2013, I was probably using a cane which my kids call “Harvey”. We all love Harvey. In 2014, Harvey is exclusively used within our home in conjunction with walls and furniture. Outside of the home, where I don’t necessarily know the terrain, I use a walker called “Johnny Walker Red” by my kids, if my anticipated area of ambulation is roughly 100 feet or less. Even with Johnny Walker, more than 100 feet is difficult from a leg strength perspective. Even using a walker requires a certain amount of walking gait coordination and that alone is physically draining. If I anticipate ambulation needs of more than 100 feet, my scooter, called “Scooter McQueen”, is employed. Scooter McQueen is portable and he rides in the back of our minivan. Scooter McQueen was granted to me by the National MS Society, Connecticut Chapter and I am so grateful to this great organization. Scooter McQueen allows me to get to where my kids play, practice and compete as well as do mundane, but challenging, things like grocery shopping. Assembly and disassembly of Scooter takes about 2 minutes both ways, which isn’t too bad. In public, I am frequently offered assistance and I am so appreciative of complete strangers doing so, but I am usually just fine sitting on the tail gate of the minivan assembling, or disassembling, the four 30 lb pieces. Can you see where this ambulation progression is heading?! I think it’s scary and I live with this fear every day. That being said, the progression may stop and I truly hope it does, but the general history of MS progression says otherwise.
Progressive Multiple Sclerosis leaves me in a constant state of physical fatigue. I can be forced into a state of motionlessness at any point of the day because my body will just shut down and not move. This can happen with little, to no, warning. This doesn’t just happen to my lower extremities, but also my fingers which are currently struggling to type this missive. In short, what I increasingly experience, on a daily basis, is a pervasive fatigue for no apparent reason except for the existence of MS in my central nervous system.
Heat and humidity are my nemesis. The only weather conditions I feel comfortable in, and can nearly function, is 65 - 72 degrees with low relative humidity. That should put me and my family in some area near Laguna Niguel, California, but MS economics will not allow this (more to come on this point).
Normal body functions betray me constantly. I remember when “nature called” there was ample time to work out a reasonable evacuation plan (tongue firmly placed inside of cheek). Now, nature doesn’t call. It barges in, unannounced like a home invasion. Consider the stress levels that this constant potentiality creates?! I hate to say it, but the home invasions have increased and law enforcement is unprepared to handle the scourge.
Now, let me talk about the financial side of the MonSter. I am fairly sure my financial situation is like most Progressive MS-ers, because I cannot physically work. But because I am disabled by Progressive MS, I was approved for Social Security Disability Benefits relatively quickly (approved in 18 months which they say is quick). But here’s the Catch-22. The Social Security Administration does not treat Disability benefits like Social Security Retirement benefits. Even though there is a confusing formula if a retiree wants to earn income above and beyond social security retirement benefits, they can still collect additional income albeit ridiculously taxed. When it comes to Disability benefits, they have determined that the most I am allowed to make per month is their taxable check of $2,200. If I legitimately earn $100 more, my disability check is adjusted down to $2,100 and the adjustment continues until my Disability check is adjusted down to $1,400 at which point any further downward adjustments cause the automatic cancellation of all Disability benefits. I guess because if I can earn $800 per month on my own, I am clearly not all that disabled (tongue in cheek again). Basically, I am on a federally funded poverty program until I reach 65 years of age (12 years from now) at which point I can add to my income without too much penalty. I am not really complaining. I am somewhat grateful for the financial safety net that I paid into, and created for myself, for 3 decades. But, it’s just a theoretical Catch-22 that if I think about too much it will piss me off.
Now there's a couple of serious safety issues my family must address with very limited funds. I need to get a stair lift for my home to get from our garage to where I mostly live in the house, as well as hand controls for our minivan because I can’t count on my feet to work safely, especially after 30 minutes of driving. Other than all of what I have written here, I'm doing okay. I am making it work one day at a time. Basically, I sit behind a computer pretty much all day and try to raise money for an MS cure. Yes, I have a debilitating chronic disease, which has no known cure, but I don ’t have a terminal condition other than the one we all have which is called “life”. Thanks for reading this and please support anyone with Multiple Sclerosis in any way you can. Their daily challenges and stories are not too different than mine. We depend on the kindness and support of fellow members of our “global village” who have a little extra left at the end of their day, week, month or year.
The Jake 2017
To Benefit MS Families and the National MS Society, Connecticut Chapter