Well, I haven't had much time to blog lately. Or even think about ataxia stuff. I've had a few things going on outside this life that have taken my mind of it. I don't care to go into it, but that's my reasoning.
Over the Labor Day weekend I took part in a tournament for a board game I play. This game is actually played all over the world and this tournament is considered the United States major. Over 70+ players took part in the tourney. They came to the Chicagoland Area from all over. Sweden, Spain, Canada, and multiple states were represented. The reason I say all this is because this group of awesome people choose a charity or organization to donate raffle proceeds to. This year they chose the National Ataxia Foundation. The raffle raised $1,280 for the NAF.
I can't express how proud I am of our incredible group of people. When they told me they were going to give to the NAF, when they told me the amount, when the donation went through, even as I'm typing this, the joy and appreciation I feel makes my eyes well up.
Thank you, thank you, thank you to all those who donated.
Tuesday, September 13, 2016
Friday, August 12, 2016
Learning to Move?
This is a bit of a rabbit hole for me. Follow me if you will...can?...will. I was diagnosed with cerebellar ataxia roughly three years ago. In that time I've made a few changes, checked in to exercises, food changes, supplementation, blah blah blah. I've looked into quite a few things that I never would have before.
Recently, I've been seeing increased information about movement coaches and specialist. I enjoy watching mixed martial arts and the new wave is these movement coaches and such. They use the knowledge these coaches give them so they don't waste movement which would cost themselves stamina and power. With the problems my fellow ataxians and I have with movement, can it help us too.
I've looked into some of these people search engines and through YouTube and the like; and I wonder how it can be applied to ataxia patients. I've seen first hand the benefit of physical therapy on my condition. I've had a couple different PT's (neither of which had a specific understanding of ataxias), and just strengthening and static balance work has helped me increase my performance on physical test I get at U of M. I think this "Movement" movement could help with my dynamic balance. Over the next few months, I'm going to work out a program and a way to test its efficacy. Short of a kinesiology class I took in college, I have no information regarding the workings of the human body. I plan on basing my program on strength training, moving, and balance workouts/exercises I research. I am still able to work and I have a family at home, so whatever I choose to do, it will need to take time limitations into account.
I'm going to post my plans and my results periodically on here and we'll see where it goes. If anyone reading this has suggestions of plans, videos, programs, that might help in this endeavor, please leave that information in the comments. Thanks!
Recently, I've been seeing increased information about movement coaches and specialist. I enjoy watching mixed martial arts and the new wave is these movement coaches and such. They use the knowledge these coaches give them so they don't waste movement which would cost themselves stamina and power. With the problems my fellow ataxians and I have with movement, can it help us too.
I've looked into some of these people search engines and through YouTube and the like; and I wonder how it can be applied to ataxia patients. I've seen first hand the benefit of physical therapy on my condition. I've had a couple different PT's (neither of which had a specific understanding of ataxias), and just strengthening and static balance work has helped me increase my performance on physical test I get at U of M. I think this "Movement" movement could help with my dynamic balance. Over the next few months, I'm going to work out a program and a way to test its efficacy. Short of a kinesiology class I took in college, I have no information regarding the workings of the human body. I plan on basing my program on strength training, moving, and balance workouts/exercises I research. I am still able to work and I have a family at home, so whatever I choose to do, it will need to take time limitations into account.
I'm going to post my plans and my results periodically on here and we'll see where it goes. If anyone reading this has suggestions of plans, videos, programs, that might help in this endeavor, please leave that information in the comments. Thanks!
Friday, August 5, 2016
Ride Time
Tomorrow is TerraTrike Riderfest in Grand Rapids, Michigan. This will be my first group ride/event. I am looking forward to it. My goal is to complete all thirteen miles of the course. I've only just started riding and maybe this will lead to more events in the future.
Because of my stability issues, caused by my ataxia, I haven't participated in anything remotely close to this in a long, long time. As a kid and up to about 5 years ago I played a ton of sports and activities like golf, baseball, basketball, street hockey, blah blah blah. But now, because of my trike, I am able to do something more active again.
My wife will be joining me on this ride (she'll be on an upright bike but...) and possibly there will be others there with movement disorders, maybe even with ataxia. We'll see. I'd love to be able to transfer this more into helping the small but way too large ataxia community, but let's get through this first "challenge" and go from there.
Because of my stability issues, caused by my ataxia, I haven't participated in anything remotely close to this in a long, long time. As a kid and up to about 5 years ago I played a ton of sports and activities like golf, baseball, basketball, street hockey, blah blah blah. But now, because of my trike, I am able to do something more active again.
My wife will be joining me on this ride (she'll be on an upright bike but...) and possibly there will be others there with movement disorders, maybe even with ataxia. We'll see. I'd love to be able to transfer this more into helping the small but way too large ataxia community, but let's get through this first "challenge" and go from there.
Friday, July 22, 2016
Trike
I've got a new way to get around. My girls learned to ride their two wheel bikes without training wheels, my wife got her old bike tuned up, and we thought a trike would be a good idea. We took our first ever family bike ride on Tuesday night and I loved it. If my body and time allowed we'd still be riding. I love the ability to do something active with my girls as opposed to just watching them.
The type of trike I got is a TerraTrike Traveler. There are three hinges on the frame, the seat detaches and the sway bar comes off. That allows the trike to fold up for easier packing in vehicles. When it is all collapsed it fits in the trunk of most cars. TerraTrike is located in Grand Rapids, Michigan. I ordered it from Pedal in Portage, Michigan so it didn't take long at all to arrive. The staff at Pedal were absolutely wonderful. They let me try out the trike first, showed me how to fold it up and, definitely most importantly, they took great care of making sure I was aided through the process. Like most people, none of them had ever heard of ataxia but they seemed genuinely interested in me and how the trike could be used by someone like me.
Like I mentioned before, this was the first time we'd rode as a family. First, I had to unfold the thing. It was difficult this time but from now on it'll be a piece of cake. My driveway is only about three car lengths long but it slopes down to the street. I popped of the break locks and I was off on my first trike ride. Well, almost. My wife wanted my girls and I to pose for a photo first. Now I was off! The trike is designed for recreation and has an eight speed internal gear system. They mentioned I needed to be coasting when I shift, which is not a very natural thing for me I found out. Once I got the hang of that it was smooth sailing... until my calf decided to cramp up. It was still so much fun! I cant't wait to get out there again!
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Ride number two, 1.5 hours. I love it.
The type of trike I got is a TerraTrike Traveler. There are three hinges on the frame, the seat detaches and the sway bar comes off. That allows the trike to fold up for easier packing in vehicles. When it is all collapsed it fits in the trunk of most cars. TerraTrike is located in Grand Rapids, Michigan. I ordered it from Pedal in Portage, Michigan so it didn't take long at all to arrive. The staff at Pedal were absolutely wonderful. They let me try out the trike first, showed me how to fold it up and, definitely most importantly, they took great care of making sure I was aided through the process. Like most people, none of them had ever heard of ataxia but they seemed genuinely interested in me and how the trike could be used by someone like me.
Like I mentioned before, this was the first time we'd rode as a family. First, I had to unfold the thing. It was difficult this time but from now on it'll be a piece of cake. My driveway is only about three car lengths long but it slopes down to the street. I popped of the break locks and I was off on my first trike ride. Well, almost. My wife wanted my girls and I to pose for a photo first. Now I was off! The trike is designed for recreation and has an eight speed internal gear system. They mentioned I needed to be coasting when I shift, which is not a very natural thing for me I found out. Once I got the hang of that it was smooth sailing... until my calf decided to cramp up. It was still so much fun! I cant't wait to get out there again!
___________________________________________________________________________
Ride number two, 1.5 hours. I love it.
Tuesday, July 19, 2016
Still No Clue
Well, 7/15 has come and gone and my Exome panel yielded no results. The good news for me is that my ataxia is a very slow progressing one and exercise has even helped me increase some of my abilities.
It's likely that I'll never find out the cause of my ataxia and that's ok. The biggest/most important thing to me is that I don't pass this thing down. All of the known ataxia's have been 95% ruled out. The only possibility, is that something was somehow missed in one of my myriad of test. That means it's most likely not dominate. Now, I could be patient zero for this type of ataxia but with the more stuff they rule out the less likely it is to be passed on.
What is the next step? Well, as far as testing me, it's done for a while. However, I did sign over the remainder of my exome sample to be studied by a researcher at the University of Michigan. If by some far-out-there chance they find something, I may need to do more test. But my "payment" for that could be having a say in the naming of the new ataxia-type. Which, honestly, would be pretty cool.
As far as what I can do, I'm trying to get as healthy as I can. I just got over a shoulder injury, sustained while sleeping (yeah, doing nothing) and I need to resume my workout regiment. I'm also trying to eat healthier. In the first week of that change, I lost 1.6% of my body weight, not a ton but sustainable. By getting back into my workouts, I'm hoping to increase that a little bit.
I hope to stay on track with the weight loss and exercise stuff. Getting better in those areas can only help with this whole ataxia thing.
It's likely that I'll never find out the cause of my ataxia and that's ok. The biggest/most important thing to me is that I don't pass this thing down. All of the known ataxia's have been 95% ruled out. The only possibility, is that something was somehow missed in one of my myriad of test. That means it's most likely not dominate. Now, I could be patient zero for this type of ataxia but with the more stuff they rule out the less likely it is to be passed on.
What is the next step? Well, as far as testing me, it's done for a while. However, I did sign over the remainder of my exome sample to be studied by a researcher at the University of Michigan. If by some far-out-there chance they find something, I may need to do more test. But my "payment" for that could be having a say in the naming of the new ataxia-type. Which, honestly, would be pretty cool.
As far as what I can do, I'm trying to get as healthy as I can. I just got over a shoulder injury, sustained while sleeping (yeah, doing nothing) and I need to resume my workout regiment. I'm also trying to eat healthier. In the first week of that change, I lost 1.6% of my body weight, not a ton but sustainable. By getting back into my workouts, I'm hoping to increase that a little bit.
I hope to stay on track with the weight loss and exercise stuff. Getting better in those areas can only help with this whole ataxia thing.
Thursday, July 14, 2016
Friday? What am I?
Maybe I'll find out Friday.
In March of this year some of my blood was sent from the University of Michigan to be researched at the University of Chicago. It was to be used for an Exome Panel to attempt to diagnose the cause of my Cerebellar Ataxia. I was given the generic diagnosis in 2013. Don't quote me on this, but I think they said there was about a 60% chance of finding out. I've had all the test, the pokes and the prods, that could yield a result (other than genetic) but they all came back negative, This panel is probably my last hope for knowing. I know this won't result in a cure for me but it may help someone in the future.
Knowing, either way, may change how I attempt to cope with and delay the symptoms and it may not. Currently, I'm attempting to lose weight and exercise. I've done a few rounds of PT and I definitely saw changes for the better in my balance, coordination and walking. I've tried to find more ways to exercise and get to a healthy weight because I want to have the best opportunity to stave off loss of mobility as much as possible. My wife (who has been such an incredibly selfless helper through all of this) has started us on a lifestyle shift to eating smaller portions and getting us away from our pop addictions.
The following weekend I should get my trike! This is extremely exciting for me as it will allow me to be more active with my girls! As of right now I can only watch the majority of their activities. They learned to ride two wheel bikes this spring and now they're all over on those things all the time. Once I have the trike we'll see how well the old man can keep up with them. We're getting my wife's bike fixed up too, so we can all ride together.
I haven't posted anything for over 15 months and it was extremely sporadic at best. I hope to post more often. Typing this stuff out helps me maintain my weak typing skills, which probably helps my motor skills. I'm also realizing it helps me remember where I'm at mentally and physically at certain times of my life.
On that note, I think I should make a goal... starting with this post, 7-14-16, I will post a minimum of once-a-month. So here's July, 247.
In March of this year some of my blood was sent from the University of Michigan to be researched at the University of Chicago. It was to be used for an Exome Panel to attempt to diagnose the cause of my Cerebellar Ataxia. I was given the generic diagnosis in 2013. Don't quote me on this, but I think they said there was about a 60% chance of finding out. I've had all the test, the pokes and the prods, that could yield a result (other than genetic) but they all came back negative, This panel is probably my last hope for knowing. I know this won't result in a cure for me but it may help someone in the future.
Knowing, either way, may change how I attempt to cope with and delay the symptoms and it may not. Currently, I'm attempting to lose weight and exercise. I've done a few rounds of PT and I definitely saw changes for the better in my balance, coordination and walking. I've tried to find more ways to exercise and get to a healthy weight because I want to have the best opportunity to stave off loss of mobility as much as possible. My wife (who has been such an incredibly selfless helper through all of this) has started us on a lifestyle shift to eating smaller portions and getting us away from our pop addictions.
The following weekend I should get my trike! This is extremely exciting for me as it will allow me to be more active with my girls! As of right now I can only watch the majority of their activities. They learned to ride two wheel bikes this spring and now they're all over on those things all the time. Once I have the trike we'll see how well the old man can keep up with them. We're getting my wife's bike fixed up too, so we can all ride together.
I haven't posted anything for over 15 months and it was extremely sporadic at best. I hope to post more often. Typing this stuff out helps me maintain my weak typing skills, which probably helps my motor skills. I'm also realizing it helps me remember where I'm at mentally and physically at certain times of my life.
On that note, I think I should make a goal... starting with this post, 7-14-16, I will post a minimum of once-a-month. So here's July, 247.
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