To continue the story where I left off due to flood damage. I believe I left when I met Robyn online. So here I was finallycomfortable in my own skin willing to live a simple life alone with my dog. I had a great extended family who loved me. My parents lived a mile away and my grandparents about 3 miles and I often took vacations to see my aunts and uncles, one in the Chicago area, another in NJ, and the other in OH. I took my dog Bo to the park and he would pull me on roller blades to my parents and I would pull him back home. Life was fine.
It was lonely but I felt that was what dystonia had sentenced me to. I had more than most people with dystonia. To pass time at home I was online a lot, a dystonia bulletin board was one of my regular stops. Robyn made a post from Australia saying she recently got dystonia and had a dog. I don't remember now what the post said (to much Klonopin over the years!) but I couldn't get it out of my head and I kept coming back to it. So finally after about my 12th viewing of the post I wrote a reply, the fourth or fifth reply to the orginal post. A few days later I received an email from her; this was not uncommon, being a dystonia BB many of us put our emails on there and chatted via email regularly. But this was different, it started off the same; what do you do for treatment, how does your family react to it, etc. but rapidly personal questions were thrown in. And what kept it going was how quickly the responses came, both of us replied immediately and pretty soon it was hundreds of emails and me staying up way past midnight. Somewhere in this process I found she was my age, and single! She mailed me some photos of herself. All this time I was going blind little did I know she had a spy working for her; she was also emailing a woman in New Jersey whom I had met at a dystonia symposium. She had given her all the dirt on me.
After just 2 weeks of late nights of emailing I had wanted to propose to her, I am not even sure if I had actually spoken to her yet! We did speak on the phone several times but email was far cheaper and easier. I managed to hold off another week until I actually asked her to marry me, she quickly called me and said "yes!" One problem eyt - I lived in Michigan and she lived in Kanahooka, New South Wales, Australia. We decided I would come and vist for a week and we could change our minds if we wanted. I needed to get a passport and I remember my parents were in Florida so I went to their house to find my birth certificate, no luck. I would have to call my parents and explain why I needed it. It was lucky she was in Florida and just on their way out to supper when I called because it gave themm time to absorb the shock, and me an escape!
So June 2, 2001 I boarded a plane to meet my wife for the first time! I remember being oddly calm about the whole thing, like I was supposed to be doing this. I landed and it was June 4 already. She was there waiting for me and she was everything she said she was. She was beautiful, caring , and had a kind heart. I don't remember what we first talked about while waiting for my luggage and on the hour plus ride home (again I blame the Klonopin, lol but I remember feeling excited more than nervous - I knew I had done the right thing.
Yada, yada, yada . . . She is Mrs. Stephenson and we have two wonderful girls. The yadas were a lot of work getting the logistics taken care of but I indeed did the right thing. I love her more today I did in that airport.
Quote of the day: "Love is a promise, love is a souvenir, once given never forgotten, never let it disappear." John Lennon
Saturday, June 27, 2009
Monday, June 22, 2009
Flooded
Sorry for the slight delay, I am trying to keep this up twice a week but we got flooded Friday night and had to get everything out of our finished basement. A wicked storm came through and we got 4 inches in 2 hours and something like 7 inches total that night, plus the fact that it rained the night before also didn't help. We had 5 or 6 guys helping at amazing speed cleared out 2 bedrooms and a complete family room and a good deal of our storage area, the Rain came around 8 PM, I finally went to bed at 2 AM.
Up at 6:15 to get in line to rent an industrial sized fan and dehumidifier. I was there at 6:30 and was third in line, the store didn't open until 7:30. Most people were after generators as many areas south of us lost power and weren't due to have it back on until late that evening, so we were fortunate in many respects. We only lost power for a few seconds Friday night. I had to hit the grocery store because we had no food for the kids. I grabbed a few necessities like bread, milk and eggs and saw another dehumidifier on sale so I grabbed the largest one they had. I got home to find the basement floors down to cement already. Robyn and a few guys ripped the carpet and pad out with phenomenal speed and even had taken it out through the windows so it was all sitting under our deck. That was the afternoon job, taking all the carpet and pad to the curb and cleaning and the mud and debris from the area. We even sat down there to relax for a few minutes that evening.
Enough about the flood, the good news was that I got a good report from the doctor Friday, he said it was not infected and that the lead had worked its way closer to the surface and he has seen much worse. He said that a few people have actually had the wire come out in some places and that that was fine of they didn't want more surgery. The could do a plastic surgery and put a flap of skin over it or I imagine they could implant the battery pack and wire in a little deeper since mine is near or below the connection site. If it was above the site they would have to remove the connections to the brain (which could be bad!). So all in all, nothing really to be alarmed about but be careful with hats and other headgear.
While I was there we actually did what we came for! I did get turned up a notch. I have quite a big pulse width now and apparently that means that an increase or decrease in the voltage will have a much greater effect than if I had a lower pulse width. (I bought it, it made sense when he said it). I was at 1.4 and first got turned to 1.6 and felt like I had been hit with a taser gun, so we backed it off to 1.5 volts. Even that took a few minutes to get used to, feels fine now and once I actually got some sleep I will consult my wife to find out how/if my voice has changed any. The funny thing is my voice sounds perfectly normal to me and then I listen to it and it sounds all garbled. Any Speech Therapists out there? Why is this? If you hear it garbled shouldn't it sound garbled to the person speaking???
On a training note - I can proudly say that I still did my fourteen miles this weekend despite all the drama here.
Quote of the day: "Are you upset little friend? Have you been lying awake worrying? Well, don't worry...I'm here. The flood waters will recede, the famine will end, the sun will shine tomorrow, and I will always be here to take care of you." -Charlie Brown to Snoopy
Up at 6:15 to get in line to rent an industrial sized fan and dehumidifier. I was there at 6:30 and was third in line, the store didn't open until 7:30. Most people were after generators as many areas south of us lost power and weren't due to have it back on until late that evening, so we were fortunate in many respects. We only lost power for a few seconds Friday night. I had to hit the grocery store because we had no food for the kids. I grabbed a few necessities like bread, milk and eggs and saw another dehumidifier on sale so I grabbed the largest one they had. I got home to find the basement floors down to cement already. Robyn and a few guys ripped the carpet and pad out with phenomenal speed and even had taken it out through the windows so it was all sitting under our deck. That was the afternoon job, taking all the carpet and pad to the curb and cleaning and the mud and debris from the area. We even sat down there to relax for a few minutes that evening.
Enough about the flood, the good news was that I got a good report from the doctor Friday, he said it was not infected and that the lead had worked its way closer to the surface and he has seen much worse. He said that a few people have actually had the wire come out in some places and that that was fine of they didn't want more surgery. The could do a plastic surgery and put a flap of skin over it or I imagine they could implant the battery pack and wire in a little deeper since mine is near or below the connection site. If it was above the site they would have to remove the connections to the brain (which could be bad!). So all in all, nothing really to be alarmed about but be careful with hats and other headgear.
While I was there we actually did what we came for! I did get turned up a notch. I have quite a big pulse width now and apparently that means that an increase or decrease in the voltage will have a much greater effect than if I had a lower pulse width. (I bought it, it made sense when he said it). I was at 1.4 and first got turned to 1.6 and felt like I had been hit with a taser gun, so we backed it off to 1.5 volts. Even that took a few minutes to get used to, feels fine now and once I actually got some sleep I will consult my wife to find out how/if my voice has changed any. The funny thing is my voice sounds perfectly normal to me and then I listen to it and it sounds all garbled. Any Speech Therapists out there? Why is this? If you hear it garbled shouldn't it sound garbled to the person speaking???
On a training note - I can proudly say that I still did my fourteen miles this weekend despite all the drama here.
Quote of the day: "Are you upset little friend? Have you been lying awake worrying? Well, don't worry...I'm here. The flood waters will recede, the famine will end, the sun will shine tomorrow, and I will always be here to take care of you." -Charlie Brown to Snoopy
Wednesday, June 17, 2009
The early years with dystonia
When I first got diagnosed with dystonia, after all of confusion of "What is going on with my body?" and the realization that this disorder wasn't going to kill me, I got more than a little depressed. I had this strange and wacky ailment but the good news is it won't kill me, or is that the bad news. Luckily it was not long between the gradual onset and the diagnosis. For the early 1990's it was very quick, in fact my dystonia may have still been developing.
I went through the normal thoughts that I was crazy. I remember vividly one car ride where I just said "No, I am insane, there is something physically wrong with me." (which didn't explain why I was talking to myself but anyways . . ) After that I went all out to figure what was wrong, no more guessing if I was nuts.
I will go into my Botox dramas later but by 1994 I became immune to botulinum toxin type A so I escalated another step on the dystonia (Spasmodic Torticollis) treatment chart, which at that time was up to Selective Denervation. I am not sure how often this is done now if at all.
After my first denervation surgery in Montreal I still had some movement and my voice was unchanged but the greatest thing was my pain was somehow eliminated (I don't know how and why and would now recommend DBS over Selective Denervation but that was an option in 1995). Without the constant pain and agony, I could now think clearly for the first time in over 5 years. And as I thought I realized my dystonia wasn't affecting me as much as it was affecting everyone who saw me. So therefore I was affected indirectly, a somewhat of a social outcast. I was a sane person trapped in an insane body. But the view nice! It was truly bizarre seeing how people reacted when meeting me or even seeing me in a store.
After some painful lessons and lonely times I had to accept that I wasn't normal and I would have to change my thinking and behavioral patterns to accomodate. I bought a modest house and got a dog and was all set for a life of bachelorhood. When I finally learned to like myself and be content with that - then she came along.
to be continued. . .
Quote of the day: "The first step to getting the things what you want out of life is this: decide what you want" - Ben Stein
I went through the normal thoughts that I was crazy. I remember vividly one car ride where I just said "No, I am insane, there is something physically wrong with me." (which didn't explain why I was talking to myself but anyways . . ) After that I went all out to figure what was wrong, no more guessing if I was nuts.
I will go into my Botox dramas later but by 1994 I became immune to botulinum toxin type A so I escalated another step on the dystonia (Spasmodic Torticollis) treatment chart, which at that time was up to Selective Denervation. I am not sure how often this is done now if at all.
After my first denervation surgery in Montreal I still had some movement and my voice was unchanged but the greatest thing was my pain was somehow eliminated (I don't know how and why and would now recommend DBS over Selective Denervation but that was an option in 1995). Without the constant pain and agony, I could now think clearly for the first time in over 5 years. And as I thought I realized my dystonia wasn't affecting me as much as it was affecting everyone who saw me. So therefore I was affected indirectly, a somewhat of a social outcast. I was a sane person trapped in an insane body. But the view nice! It was truly bizarre seeing how people reacted when meeting me or even seeing me in a store.
After some painful lessons and lonely times I had to accept that I wasn't normal and I would have to change my thinking and behavioral patterns to accomodate. I bought a modest house and got a dog and was all set for a life of bachelorhood. When I finally learned to like myself and be content with that - then she came along.
to be continued. . .
Quote of the day: "The first step to getting the things what you want out of life is this: decide what you want" - Ben Stein
Sunday, June 14, 2009
Core workout
In my last entry I said hiccups and teeth chattering were early signs of my dystonia. I had both and they seem like spasms to me but not even the best dystonia doctor in the world would have diagnosed me as having dystonia back then. So even if you get the hiccups once a week or more, like I did, I would hold off on the worry until your head moves so much you're scared to see a barber. Why worry about something that will either happen or it won't but there is nothing you can do to stop it?
We started our core training this week and my tummy still hurts. There were about forty exercises written on a piece of paper and I saw one word I recognized as an exercise - pushups, the rest were in some sort of code or weird name that Coach Woj had made up like Superman, bridge, butt kick (not what you'd think but it did kick my butt!). We did 45 minutes of these and then started our normal workout. I tried to remember a few of the exercises so I could practice some since I was so bad at them. All that seemede to come back to me were the easy ones and the situps and pushups. So I did a couple quick sets of situps.
This Saturday was also the big dance recital for our girls. The oldest did three dances, each with about 5 other girls while the youngest only had 1 routine but was only dancing with 1 other little girl. They were adorable! Our 4-year-old looked absolutely tiny up on that big stage, their was a collective, "aaaw" from the crowd as the curtain rose.
This week Friday is the day I have been waiting for for about six weeks. I go to get my DBS settings checked and more importantly will get to ask about a possible infection. The lead on my left side is either infected or much closer to the surface than I'd prefer. I am skinny but they got the right one in fairly adequately. Behind my ear there is abou an inch where it feels like I am touching a rubber coated wire, it is that close to the surface.
Quote of the day: "Always and never are two words you should always remember never to use." - Wendell Johnson
We started our core training this week and my tummy still hurts. There were about forty exercises written on a piece of paper and I saw one word I recognized as an exercise - pushups, the rest were in some sort of code or weird name that Coach Woj had made up like Superman, bridge, butt kick (not what you'd think but it did kick my butt!). We did 45 minutes of these and then started our normal workout. I tried to remember a few of the exercises so I could practice some since I was so bad at them. All that seemede to come back to me were the easy ones and the situps and pushups. So I did a couple quick sets of situps.
This Saturday was also the big dance recital for our girls. The oldest did three dances, each with about 5 other girls while the youngest only had 1 routine but was only dancing with 1 other little girl. They were adorable! Our 4-year-old looked absolutely tiny up on that big stage, their was a collective, "aaaw" from the crowd as the curtain rose.
This week Friday is the day I have been waiting for for about six weeks. I go to get my DBS settings checked and more importantly will get to ask about a possible infection. The lead on my left side is either infected or much closer to the surface than I'd prefer. I am skinny but they got the right one in fairly adequately. Behind my ear there is abou an inch where it feels like I am touching a rubber coated wire, it is that close to the surface.
Quote of the day: "Always and never are two words you should always remember never to use." - Wendell Johnson
Wednesday, June 10, 2009
I have done 5 marathons now and if you have ever done one you know how your body just craves rest afterward. Well, unfortunately I don't get to do that. I just finished the Bayshore marathon in May and now I am staring at another 18 weeks of training. It looks daunting! As daunting as the thought of running 26.2 miles sounds to a non-runner. I mean I just completed this process and now I have to do it all AGAIN!?!
The speed work and the hills are tough but the long runs are mentally tough. So I started out slow and easy Monday morning going 10 at a nice easy pace. Since I got calf cramps in past marathons including Bayshore I want to specifically address that issue so I am wearing some compression socks I got from the hospital after my most recent surgery. I have no idea why I kept them but now I am glad I did. You can buy some calf sleeves they're called but I wanted to do a little test first. So I took off for my first 10 mile run in what felt like pantyhose. I saw a friend of mine 5 miles in and much to my surprise she didn't laugh or even comment on them, not that I would have cared, I had just finished a very hilly stretch and was glad to be going downhill finally. First 10 miler in the books.
I was asked this week if my kids had dystonia. That was an issue for us, especially since my wife also has dystonia. My thoughts on this are: since I have primary dystonia and she has secondary dystonia it would be the same odds as me having kids with any "normal" woman (the quotes purely hypothetical since I know there is such thing as a normal woman! kidding, Robyn, what are you doing with that . . . OUCH!) Where was I, oh yeah, her reply is if they get dystonia who better to know how to help them deal with it than 2 parents with it also. As yuo can tell my wife is way smarter and deeper than me. (or is it I?) To answer the question - no. They are 4 and 6 now and show no signs of any dystonia yet. And believe me I look and I am sure Robyn does as the same. Every once in a while I will watch them closely to see if notice any hint that they might. For instance, when I was 6 I had the hiccups much more than other kids and when I was cold I would shiver to the point my teeth would chatter.
Quote of the day: "Live as if you'll die tomorrow, learn is if you'll live forever." - Gandhi
The speed work and the hills are tough but the long runs are mentally tough. So I started out slow and easy Monday morning going 10 at a nice easy pace. Since I got calf cramps in past marathons including Bayshore I want to specifically address that issue so I am wearing some compression socks I got from the hospital after my most recent surgery. I have no idea why I kept them but now I am glad I did. You can buy some calf sleeves they're called but I wanted to do a little test first. So I took off for my first 10 mile run in what felt like pantyhose. I saw a friend of mine 5 miles in and much to my surprise she didn't laugh or even comment on them, not that I would have cared, I had just finished a very hilly stretch and was glad to be going downhill finally. First 10 miler in the books.
I was asked this week if my kids had dystonia. That was an issue for us, especially since my wife also has dystonia. My thoughts on this are: since I have primary dystonia and she has secondary dystonia it would be the same odds as me having kids with any "normal" woman (the quotes purely hypothetical since I know there is such thing as a normal woman! kidding, Robyn, what are you doing with that . . . OUCH!) Where was I, oh yeah, her reply is if they get dystonia who better to know how to help them deal with it than 2 parents with it also. As yuo can tell my wife is way smarter and deeper than me. (or is it I?) To answer the question - no. They are 4 and 6 now and show no signs of any dystonia yet. And believe me I look and I am sure Robyn does as the same. Every once in a while I will watch them closely to see if notice any hint that they might. For instance, when I was 6 I had the hiccups much more than other kids and when I was cold I would shiver to the point my teeth would chatter.
Quote of the day: "Live as if you'll die tomorrow, learn is if you'll live forever." - Gandhi
Friday, June 5, 2009
Gruelling workout
My training group runs meets at 6:30 PM and I got there at 5:30 after moving some cement from my cousins house yesterday so I decided to do a warmup lap around the lake, about 4.32 miles, or so I am told by all the Garmin wearers of my group. This item has becoming more of a runner's accessory than the iPod. A watch that tells you exactly how far you have gone and the time you did it in, some even give you maps that help you find your way home. Very handy, will have to look into getting one.
Then the actually training started, we were to start with a 2-mile jog to the park followed by 4-8 laps up a hill and then the same 2 mile jog back to the meeting place. This 2-mile jog to get there was easy until we hit the last half mile, which was all up hill, a slow incline that just kept going up. We did a few running stretches or exercises really because as you will find out I abhor stretching, more on that later. Now time for the real workout, a decent sized hill not too long but pretty steep, a great sledding hill in the winter. Coach wants us to run for about 50 yards to the hill and be near full speed as we hit the hill and hit the hill with everything we have and then coast along the top and down and start again (I will take my camera next time as I hear we will be doing this one quite often this summer). After 8 of the I was about ready to puke and we sill had to get back, and better yet I had to carry the water jug (those gatorade size jugs football teams throw over a coach's head) home for a comment I made about ice cream during the exercises. At least they emptied it first! I jogged back the 2 miles with that jug over one shoulder and in front of me and over the other shoulder, switching when I got sore. It wasn't that heavy but quite awkward to carry while jogging. They joked that I was the mobile aid station and asked for a drink. I told them they would have to get their drinks at the bar just like everyone else. Many of our crew like to hit a local brewery after the workouts.
I got home and I still had to empty the cement chunks out of my car and walk the dogs. What took me 20 minutes to put into the car, took me twice that to remove from the car. It is for a project for my backyard, we are trying to alleviate some of the dampness way in the back. The dogs were so pent up by now that I gave up after a quarter mile and just let the leashes go and ran along side of them. They know the only purpose of the leash is to keep me with four feet of them. The pull the leash taught and drag me down the usual route unless there is something interesting to smell. Last time I weighed them JoJo, a German Shepherd, was 63 pounds and Clancy, a Kelpie/shepherd mix, was 56 pounds, so 120 pounds of dog that sometimes wants to go 2 directions at once, or worse if JoJo smells a rabbit or squirrel she will go full bore after it and Clancy will freeze in the middle of the sidewalk. I usually end up trip over Clancy and jerking both dogs by the neck back to me, 1 from each direction. It is always important that I watch and see the rabbits and squirrels before JoJo and the small dogs before Clancy (he hates yappers as much as I do!)
Quote of the day: The tragedy of life is not that it ends so soon, but that we wait so long to begin it. -- Anonymous
Then the actually training started, we were to start with a 2-mile jog to the park followed by 4-8 laps up a hill and then the same 2 mile jog back to the meeting place. This 2-mile jog to get there was easy until we hit the last half mile, which was all up hill, a slow incline that just kept going up. We did a few running stretches or exercises really because as you will find out I abhor stretching, more on that later. Now time for the real workout, a decent sized hill not too long but pretty steep, a great sledding hill in the winter. Coach wants us to run for about 50 yards to the hill and be near full speed as we hit the hill and hit the hill with everything we have and then coast along the top and down and start again (I will take my camera next time as I hear we will be doing this one quite often this summer). After 8 of the I was about ready to puke and we sill had to get back, and better yet I had to carry the water jug (those gatorade size jugs football teams throw over a coach's head) home for a comment I made about ice cream during the exercises. At least they emptied it first! I jogged back the 2 miles with that jug over one shoulder and in front of me and over the other shoulder, switching when I got sore. It wasn't that heavy but quite awkward to carry while jogging. They joked that I was the mobile aid station and asked for a drink. I told them they would have to get their drinks at the bar just like everyone else. Many of our crew like to hit a local brewery after the workouts.
I got home and I still had to empty the cement chunks out of my car and walk the dogs. What took me 20 minutes to put into the car, took me twice that to remove from the car. It is for a project for my backyard, we are trying to alleviate some of the dampness way in the back. The dogs were so pent up by now that I gave up after a quarter mile and just let the leashes go and ran along side of them. They know the only purpose of the leash is to keep me with four feet of them. The pull the leash taught and drag me down the usual route unless there is something interesting to smell. Last time I weighed them JoJo, a German Shepherd, was 63 pounds and Clancy, a Kelpie/shepherd mix, was 56 pounds, so 120 pounds of dog that sometimes wants to go 2 directions at once, or worse if JoJo smells a rabbit or squirrel she will go full bore after it and Clancy will freeze in the middle of the sidewalk. I usually end up trip over Clancy and jerking both dogs by the neck back to me, 1 from each direction. It is always important that I watch and see the rabbits and squirrels before JoJo and the small dogs before Clancy (he hates yappers as much as I do!)
Quote of the day: The tragedy of life is not that it ends so soon, but that we wait so long to begin it. -- Anonymous
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