My Life with OT (Orthostatic Tremor) "Imagine being able to walk but..
Pharmacist, Proud father of 4. Active OT (Orthostatic Tremor) advocate. This blog is all about My Life with OT (Orthostatic Tremor) "Imagine being able to walk but not stand" – 41 year old father, husband, pharmacist with Orthostatic Tremor.
Hello, I know it’s been quite a while since I have written anything of use, but today something caught my attention in the OT world that I had to sit and get my thoughts out on “paper” so to speak. I happened to see a post on Facebook from someone with whom had a recent encounter with Dr. Diego-Torres. I myself met Dr. Torres almost 2 years ago and this question or post jogged my memory to his discussion of possible causation of Orthostatic Tremor. The suggestion was that OT could be a mental type phobia of a fear of falling. I’ll repeat that: The Facebook posting suggested that Dr. Torres is seriously considering that OT is akin to mental illness!
Now bare in mind that I have no access to Dr. Torres to confirm that this is truly the path that he and his team are now following, but this would be a travesty for all the hard work that many in the OT community have been raising money for and spending many hours working for. To lump this into the mess, no pun intended, of mental illness, is almost like giving up. We can’t find any concrete answers, so it must be in people’s heads.
I personally don’t believe that Dr. Torres is this kind of man or human being in the conversations that I have had with him. He is very caring, sincere and really is trying to make headway into this difficult problem. Everyone of us has some sort of mental illness, whether you want to admit it or not. People with chronic conditions like OT deal with them everyday. No one sick or not is immune to depression and anxiety. If some one says they are then they are the delusional ones.
My tremors and the pain associated with the aftermath, have never, ever been associated with any fear of falling. Now a fear or anxiety of being somewhere and not having a place to sit or lean, that’s a different story. The fact that in his own research it was found that OT patient’s fall less than the average person is further proof that we are at a standstill in finding first, a cause and secondly a treatment for OT. My Neurologist summed it up pretty well at our last appointment, saying “the wires in your nervous system are all misfiring”. They don’t know why, but attributing it to mental illness is utterly absurd.
My belief is still to keep yourself in the best shape possible. Keep moving!!!!!!! The greatest scientific discoveries have happened in an alarming amount of mistakes or side effects of other studies. With all the money being poured into Parkinson’s disease and other more prevalent neurological conditions, I think this is where our hope lies. I hope Dr. Torres continues to fight on for us and find a new way of thinking around this tremendous problem. There is so much that we do not know about our nervous system that even the best and brightest Neurologists can not explain. So it is up to us to stick together and learn from each other each and every day!
Do you believe that you have to have faith in god to be positive? Many people have told me that their faith in religion and god has gotten them through the tough times of disease, death, pain, fill in the blank. Does that mean that if you don’t have faith you might as well pack it in and prepare for misery? Absolutely, 100%, not! Positive vibes and thoughts are flowing throughout the universe. You just have to be willing to step back, take a deep breath and soak it all in.
These things are just as important, maybe more so, than traditional therapy. A good friend in the Primary Orthostatic Tremor group on Facebook makes a point of sending out a positive feeling at day’s end for just this very reason.
Disease and illness do not equal pain and suffering. I am strongly opinionated, but I am not a fool. I am often negative, but I will not break. We are not defective!! We are people. Sons, brothers, husbands and fathers (please replace gender accordingly!). These are powerful qualities that shall not be denied!!
Nobody really asks me what a day in the life of my OT means for me. Everyone’s experience is different, so I’ll try to stick to with what I know on a one day experience. No better day to start with than yesterday.
I wake for work and instantly feel fatigued and sore. I never sleep well, unless I take sleep aids prescribed or other. If I do take something, I feel more groggy, or that “hungover” effect. Once my body realizes that it’s standing up, the tremors begin. The morning routine is probably the hardest part of the day for me. Brushing teeth, showering, shaving, dressing and all that goes into it, is ridiculously hard and taxing to my body. So essentially, I’m wore out before I start.
Work is good and bad. No longer a practicing pharmacist, I still am licensed and able, but no one wants to hire a pharmacist that can’t stand no matter what the Americans with Disabilities Act says. I work in an office, at a desk behind a computer and phone. This is fine, but I make a conscious effort to get up a walk every hour or so, because that’s when I truly feel at my best. The work day doesn’t feel to bad at all, except for the fact that I can not do what I spent so much time educating myself for, so self-pity and flashback to my last day in the pharmacy are always there.
I was separated from my wife for about 9 months, so during that time I was able to go to the gym 3 or 4 days during the week after work, which really helped my body and mind. I’ve been back home for almost 2 months now and have been able to get to the gym maybe 5 times, total. Kids, family and that my wife works nights makes it a battle to get there regularly. Sacrifice, my health or my family shouldn’t be an issue, but it is.
After homework, dinner, showers, the evening is gone. The kids get to bed, my wife and I will straighten up the house a bit, maybe watch a show and that’s when the nightmare begins. My wife can sleep, sometimes. Sometimes she has to work. By that time the tremors in my legs are so severe that I have to sit. I can’t sleep….want to because of being exhausted, but cannot.
My normal fall asleep time is 230-4 AM. Get up at 630, and do it all over again. Now I’m middle-aged and can still function at this rate. Imagine being a few years older, with that routine, pain and angst. How much harder would it be? Notice I didn’t mention the meds I take. I won’t. People judge. Employers discriminate. Social stigma. I personally could care less about that or them. Other’s do and that just adds to the problem. A day in the life….still think it’s a nothing or fake disease?
I have struggled personally quite a bit in the last few months, year. I have struggled in all phases of my life. Physically, emotionally, spiritually. OT can take so much out of you and take so much away from you.
As I grew into a young man, from high school to college, spiritually I moved far away from my Catholic upbringing. I moved farther and farther away as I kept moving through my phases of life. Graduating college, becoming a Pharmacist, getting married and having children. My scientific mind would not, could not fathom a higher power in control actively or passively in everyone’s life. I tried, half-heartedly on many occasions to revisit the conversation in my mind, but ultimately I always came back to the same conclusion. Impossible!
I never begrudged anyone their faith, it just wasn’t for me. I still don’t. Then I was diagnosed with OT. My health was failing me, my employer failed me, my resolve failed me. I thought that maybe I would talk to my priest to try to find solace in faith and repair a relationship with God. To a large degree, it was successful. My Catholic faith renewed, my mind began to clear and I was helped a great deal by the comfort or the thought of God. I hoped it would help my family. Ultimately, I was wrong. I was and up until recently was hiding behind the thought of God helping me get through the toughest times of my life.
My marriage had failed. I had lost my children for long period of times. I thought trust in God would give me the strength to get through the tough times. I was wrong. Nothing helps you get through massive changes in health, family or anything that causes huge amounts of stress. People in your life help you get through. God and faith had become a false crutch for me and I am back to my original believe that people are good because people are good. People are bad, because they are bad. Faith is a great uplifting story, but like a lot of other stories, it to me is just that, a good story. How can a god allow so much pain, as a test, I won’t consider that notion. Science and Theology can not exist together and I will always be a scientist no matter what.
Although I don’t believe in an all-powerful being in the universe, I realize how important the thought it is for people, so I will not poke holes in beliefs or mention this again. My life will proceed how it will proceed, but I can not believe in an all loving being in a world filled with so much pain. It is time for me to get back to speaking about my life with OT, not my beliefs of things that I do not believe exist. People are born, die, get sick, get rich, commit crime, lie and everyday the Sun comes up the same. Now that I can believe in.
Back to OT, back to me, back to us. Thoughts and questions are as always welcome.
I’ve come to the conclusion that nobody really cares about a disease, illness or an event that doesn’t affect them directly or indirectly. Especially the rare ones.
People may care about me personally or enjoy my writing style, but that is where the connection stops.
I have some real soul searching to do before I can go on in this matter. I’m happy to say that the GoFundMe has raised $500 for research. I will gladly hand it over to Dr.Torres and his team. Other than that, I really don’t have much to say.
Just to clarify, I didn’t want any one to get the idea that I was blaming my friends for anything. Without my friends, and you know who you are, I wouldn’t be alive today. I have friends that I can call brothers or sisters. They love and support me and I would and have done the same for them for years. They are family, and I thank God for them. People say you can learn a lot about someone by their friends. They have done for me what I can never repay, and they wouldn’t take it if I tried. If that saying is true, then I am truly blessed!!
It seems like it has been forever since I have written about what this blog is intended. I wanted to do two things when I started this, bring attention to a rare disease and share some insight into what my life is like because of Orthostatic Tremor. Most of the time, I have given my best version of the goal. Sometimes I have failed, including going into a brief hiatus from writing altogether. Those times were not fair to me and definitely not fair to all of you who have praised me for not only for my writing, my attempt to be an advocate for OT, or for the bravery that I’ve shown by putting my life on the smallest of stages. I’m here today to state that some of that is a fraud. Yes I have OT, Yes I do share my life and feelings on a public forum, and yes I do believe I have some writing ability. What I haven’t been true to is in the sharing of my personality, my family life and the failure that I have been at many levels. While I have shared a good bit of my personal feelings, I have not shared as much as I believe I should have in some instances. I have not shared my family’s feelings towards me with this disease or my own feelings about them.
Last year, 2018, was one of the worst and one of the most influential years of my life. I had probably dropped to the lowest points of personal depression that I have ever felt. It affected most areas it has continued into the present. Hard to believe from someone whom my audience has claimed to be so positive. I do try to stay positive, but most times I err on the side of thinking things will never work out in my favor. Notice I didn’t say my family or my support group, but in MY in favor. Most of you do not know me very well. Like all people I have a side that I let people see and a side that is private. Known to only myself and my immediately family. For those of you who do know me, what you see most times is what you get. I do not sugar coat my feelings or opinions that I may have. I hate the era of political correctness that we live in these days. People need to have thicker skin. Your going to die because someone doesn’t like what you like, think like you think, say or do what you say and are doing? Surprisingly enough most people don’t care about anyone or anything unless it is directly happening to themselves. Which leads me to another point.
If you know me very well, I have an eclectic variety of interest. I am one of those people who has too much useless information, or at least that’s what I believe. One of those interest is in not only practicing organized religion, but to the history of religion and faith itself. One of the topics that has fascinated me for a long time is the origin and the discussions regarding the 7 deadly sins. These are the most vial of sins that a human can commit to their selves according to the early works of Chaucer and Dante. I will not continue on a history lesson that nobody but me would care about, so I’ll just list the seven in no particular order: Pride, Greed, Lust, Envy, Gluttony, Wrath and Sloth. I’m sure most of you have heard of at least some or all of these sins. If you don’t, Google them. Why do I or why would I think that any of this is relevant to this blog? Because, I am guilty of one of these sins and it will and has already destroy me as an individual.
Greed, yes I would like to have the finer things in life, but to be honest, I’m writing this entry from a make shift office in a dormer in my parents house. Every person’s dream. Lust, we are all guilty of this mildly, don’t lie to yourself. Envy along with greed are close enough for me. I and you have thought about having what others have. Gluttony, I love to pig out as much as anyone else, and I’m not always talking about food. Wrath, is tricky. I don’t want to harm anyone that I have come into contact with, al least I don’t think so. Sloth, we are all lazy at some periods of our lives. That leaves one, the one that is leading to and will ultimately lead to my demise, so to speak. PRIDE
So what’s the big deal. You should be proud of yourself and your accomplishments. No, this is not the Pride that we are referring to at this point. Pride, to the extent that I believe that most of the time I am right and if you don’t agree, well basically you are wrong and at worst an idiot. Sounds great for your all around great positive guy. An individual that recently, and many other times, people have said, “that Matt is such a nice guy, everybody just loves him”. Now, I’m not the anti-Christ, at least I haven’t been confirmed as yet. I love talking to people…..strangers. My family a different story. I am very tuned into shutting out the most important people in my life, my family. My friends I truly believe love me. They should, I pay more attention to them than my family, by a long shot. I have built a gigantic wall around myself, that no one can penetrate. You will not hurt me. I won’t let in to do so.
I was broken well before I started having noticeable OT symptoms. Did anyone notice that I said I was writing from my office in a dormer in my parents house? There is a simple reason for that. Since July, my wife and I have been separated. I was tossed out because, I was miserable to live with. I didn’t communicate on a personal level. I can talk to you from this blog as easy as walking down the office hall. I can have stimulating conversation with someone I just met, but didn’t have the time to talk to my wife about anything. Why would I do that? I was always the most important person in the room because I have OT and people should only worry about me and my needs. I have three great biological children. They are young and I worry that they are not as great as people think, because their mother and father can not have a 5 minute conversation about how the day went, what needs done, how are you today? My fault again. I also had a step-daughter who is 16 and I have basically helped “raise” her whole life. She can’t stand me. I was too hard on her, much more than the younger kids. I didn’t know that until I was told after it is now to late. You should be asking me how I feel, what I need, what you can do for me? Now many from the outside in my circle, make comments that she left me at my lowest point, and forgot about the in sickness and in health part of the vows. Some of that I believe is true. She was not getting the help or attention she needed, because I am the one who is sick. Does that make it okay? No, I don’t think so, but do I understand? Maybe. I think she left me at my lowest point. But, :then again if I am a terrible husband, father, and partner, maybe it makes more sense. Will we be able to mend fences? No, not completely. There are many scars and we won’t even talk very civilly now at this minute.
So what the hell does all this have to do with my OT. I think I made a few points in all this rambling. Some people (ME) who are sick with either a terminal or life long disease forget that we are not the only ones are sick. When a family member is sick, the whole family is sick. You would think that I would know that seeing that my sister was killed by cancer and died at the age of 36, after fighting for 5 years. Us sick folk are self-centered. My sister was the least that I know of, but she wasn’t perfect either. This is the Pride that is killing me faster and has made OT the boss in my life. Nothing matters if someone is not thinking about my illness. If you are not, I’ll make sure it comes up not so casual. Don’t get me wrong, OT sucks. It sucks more because people can’t always see it or don’t even believe there is anything wrong with you. But, sinful pride runs my life most of the time. What am I going to do for me today, because I might not have that many good days left. There was a bible verse that was part of mass, this past Sunday, 1, Corinthians chapter 13 that talks about love. You know it. It is from the Apostle Paul whom describes what love is in 15 simple statements. I was going to break that down, but since I have been writing for 7 hours, joke, I will save it for another time.
My long-winded point is that if you have character flaws when you are healthy, they become much more exacerbated if you are chronically ill. For me Pride has ruined my life thus far and I did it to myself, because I am more important. Sounds terrible when you write it down and read it. There are no apologies, because nobody believes you anyway. This makes it worse for me obviously and by the way that’s all that matters, my feelings.
I hope you are still awake after this book. I thank you for reading and sharing my message for myself and all other chronically ill people. That I do believe. I will get back to OT, but things need to be said.
My most recent conversation with my Neurologist was this morning. To get it out of the way, Fycompa is not a treatment I trust. I too am interested in the work Dr. Craig is doing within our OT group, but for me the choice is no. I want analytical data not emperical data. Although, I realize that this case could shed some light on OT and the more information out there is always positive.
My plan will continue be weight bearing exercise, cardio also, and Klonopin. I’ve been on high doses for years now and have no visible side effects. Now this could change certainly, but for now my brain is able hold all of my pharmaceutical information, plus my new venture, getting my MBA in finance. I will trust the Lord with everything else.
Short blog. Just wanted to give my reason for a treatment plan I think is best for me. I will be working on a more personal blog this weekend, God willing and the creek don’t rise. A saying of my late Grandfather.
Until next time. God bless, get physically active and forge your own path.
Just a small blog reminder that any long term illness affects your family dynamic. In my case it affected everything. My career, My marriage, my personality. Just give people the benefit of the doubt. You have no idea what’s going on in their mind. In the case of OT, dealing with an illness that not many can see physically can wear you down emotionally.