Reprinted with permission from CoachCMC.com
We went to the zoo yesterday. I didn’t want to go. Let me clarify that. I actually wanted to go, to take my granddaughters (Olivia and Sophia), as well as be with my wife Stacey, my daughter Mandy (home this weekend from college) and my son, Reece. I just knew that I would not be able to walk the long distances. Stacey reminded me that I could use my cane (even though I still find using one at my age embarrassing), or if need be, she reminded me that we could rent me a wheelchair (nothing wrong with people in wheelchairs – but anyone who knows me well enough, knows that it just not me to accept being pushed around in a wheelchair.) I couldn’t bring myself to the wheelchair option. Unfortunately, I had forgotten and left my cane in my car (we used Stacey’s car). I used the double stroller that we rented for our granddaughters as my walker. I tried. I walked what seemed like an eternity and my legs became like spaghetti. My walk became a drunken stagger, and I was unable to keep up.
After coming home, I crashed. Then, the thoughts came (“you are progressing”, “you will lose the ability to do all that you do to exercise – the little bit of Judo that you do, the biking, etc.”, “you will soon be in a wheelchair”). I ignored these distracting thoughts. Yet, the reality is, the thoughts contain some truth.
I found a new neurologist. My previous doctor, a movement disorder specialist (a special kind of neurologist), had taken a teaching position and was no longer seeing his outpatients. I tried a different doctor affiliated with a local hospital chain, and she came across as lacking in bedside manner, and her rude demeanor resulted in both myself and my wife viewing her as being a complete witch. I also tried a movement disorder specialist at KU movement disorders clinic, who was very nice and young, but the KU Medical system is so big, plus I just missed my old doctor there enough to the extent of finding myself just not connecting to KU doctor (another factor was that I was sick with the flu at the time). Anyway, I found another neurologist, Dr. Samuel Lehman, whom I was referred to by my sleep disorder specialist, and doctor Lehman has over thirty years of experience in having seen numerous patients with movement disorders and all sorts of neurological issues. He did a very thorough evaluation on me and he was very likable.
One thought that I often struggle with, is one of being too young to be disabled (that is my own thinking, and something that society tends to reflects back to me by seemingly shoving it in my face). It is hard to be a male under retirement age and not going through the rest of one’s life without hearing the snide, or darkly undertoned comments indicating that people are judging me negatively for not working or being considered disabled. I hear the tone and see the expressions that indicate the judgemental persons thinking of me as being lazy or not trying hard enough. Furthermore, my own mind points out the accomplishments that I make on good days (which are getting fewer and farther apart) and focuses on those things that I can do, and my mind will fall into negative self-judgements in line with what I believe other people are thinking, which is that I shouldn’t be home not working a career job. Along with the self-judgemental thoughts, a tremendous sense of guilt or shame sets in. My mind will ignore the issues that have resulted in and continually justify my disability, such as the fact that I have had to take speech therapy to help with swallowing issues (to prevent choking) due to decreased muscle tone in my throat, or my embarrassing bladder issues. My negative mind will instead point out things which upset me, such as the fact that my wife is out there working every day as the primary bread winner. This thinking beats me up more than any of the throws, arm bars or anything else that I endured in my years in doing Judo/Jujitsu.
The new neurologist with a calm and gentle way unknowingly destroyed those guilty thoughts – with each and every discovery made during his examination. Each finding clarified what I had a passive awareness of, while supported my previous movement disorder specialist’s direction. There are many things that are out of whack. With each “Hmm” that he made, emphasized the reality of things being “off”. Plus, I already was aware that hyperreflexia, a Babinski sign, clumsiness in my dexterity, cervical dystonia, limited range of movement, and all these indicators were not good. I was totally shocked when he made the discovery that I was losing strength in my hip. My hip? “No way!”, I answered, “I have done Judo and have plenty of strength in my hips!”, I declared as if knowing more than a neurologist. He replied with an explanation along the lines of my dysfunction probably not having anything to do with gained muscle strength, but instead, more likely attributed to being a result of a loss in the signal between my brain to my hip.
There was a big surprise, as I was totally shocked when he made the discovery that I was losing strength in my hip. My hip? “No way!”, I answered, “My hip should be strong as I have many years of Judo which built strength in my hips!”, I declared as if knowing more than a neurologist. He replied with an explanation along the lines of my dysfunction probably not having anything to do with gained muscle strength, but instead, more likely with the weakness being attributed to a loss in the signal between my brain to my hip.
My new neurologist stated that he wants to run tests. Oh great, more radiological testing? Yes, he wants more MRI’s and such to see if there are lesions on my brain and spinal-cord, or to see if there are any other findings to narrow the cause. I reluctantly asked, “Are you thinking that these issues are Parkinson’s related? Or do I possibly have an alternate diagnosis?” He replied with a response indicating his preliminary belief that I may have “Parkinson’s Plus”. Sounds like the name of an insurance policy. What the term means is more sinister, Parkinson’s Plus or atypical parkinsonism actually means that I may have something more rapidly progressing, neurogenically pervasive, and destructive. An example of such illness would be having something relatively rare like Multiple Systems Atrophy (MSA). I am not going to jump to any conclusions without those radiology tests. He acknowledged that is also possible that I have two things going on, meaning two illnesses, such as the combination of Parkinson’s and perhaps another neurological illness in addition (i.e. multiple sclerosis or MS). Whatever it is that is going on, I trust him to discover a likely cause and once discovered, I must accept it. What other choice do I have?
The crappy thing is that whatever is going on, probably doesn’t have a cure. I will have to continue to treat symptoms and fight.
Fighting means staying active and continuing to exercise (to the best of my ability), all the while knowing the fighting ultimately means that I am actually working on slowing or delaying undesired inevitable outcomes. In other words, fighting most likely doesn’t equate to winning or beating. I admit, motivating myself is not an easy task. Yet, I love my family. I enjoy being around friends. I want to be around AND functioning as long as I can.
This is not the kind of stuff I would put out on Facebook. So, I put it here, in this blog, knowing that not too many people will read it (I don’t think). I place it here more for a self-therapeutic purpose. I still don’t want sympathy, and probably never will.
If anyone finds this or reads this, I figure the reason is because:
- You really care about me and wanted to know how I am really doing, or
- You don’t know me and somehow stumbled upon this for your own health reasons/research, or
- You don’t like me and were snooping, or
- You know about me and were/are curious enough to dive into reading this stuff about me in order to form or strengthen either your negative or positive opinion about me.
Either way, I thank you for taking the time to read this. You caught me in a moment of wanting to therapeutically spill what is going on with me.