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!
___________________________________________________________________________
Ride number two, 1.5 hours. I love it.
Friday, July 22, 2016
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.
Friday, March 20, 2015
Headaches, Part II - 3/20/15
The headaches I wrote about last month have continued at a slower pace and I haven't been back to the doctor recently so no new news on that front. None medical "headaches" have been popping up too often lately. Anyone who has to deal with insurance on a relatively regular basis knows it can get frustrating. So far my insurance dealings regarding my ataxia haven't been too rough, it's getting the rest of my family covered that's been tougher.
When I graduated from college I worked in the golf industry. The company I worked for owned or operated 40+ golf courses through out the USA. So it was pretty large. I was employed at one they owned. My wife was a teacher and between our two places of employment we were able to have work place provided insurance. Then when we moved we still had group coverage through her new teaching job. At that point our second daughter was born and we made a decision for my wife to be a stay-at-home mom.
When we made that choice I was no longer working at a job that provided health care so we got on independent insurance. We have had it for the last 7 years or so. With the advent of the ACA we needed to change how our insurance worked. In order to qualify for tax credits we had to change plans. Our old plan became way too expensive. Changing plans meant that my wife and I would need to be on one plan and my girls on another. This has worked out only because my girls, praise God, have been healthy. In the less than a year that we've had ACA coverage the girls have been added and dropped and added again to their coverage no less than 5 times. The most recent shuffle is going on right now. That's what has prompted this post. Hopefully the shuffle is over with this latest roundabout.
To make matters more "fun" this is the time frame in which I was diagnosed with Cerebellar Ataxia. Now we get to add that to the "fun." Actually, I consider myself extremely blessed in all this. I count my blessings all the time and they always vastly out-weight the crap. Anytime I start to get flustered about the daily grinds everyone has or the ataxia not everyone has, I get cranky (I'm human), but then I think about all that's been done for me and given to me. I'm pretty darn blessed.
Headaches of all types come and go and come and go again. Fortunately, I've got a lot more than just myself.
When I graduated from college I worked in the golf industry. The company I worked for owned or operated 40+ golf courses through out the USA. So it was pretty large. I was employed at one they owned. My wife was a teacher and between our two places of employment we were able to have work place provided insurance. Then when we moved we still had group coverage through her new teaching job. At that point our second daughter was born and we made a decision for my wife to be a stay-at-home mom.
When we made that choice I was no longer working at a job that provided health care so we got on independent insurance. We have had it for the last 7 years or so. With the advent of the ACA we needed to change how our insurance worked. In order to qualify for tax credits we had to change plans. Our old plan became way too expensive. Changing plans meant that my wife and I would need to be on one plan and my girls on another. This has worked out only because my girls, praise God, have been healthy. In the less than a year that we've had ACA coverage the girls have been added and dropped and added again to their coverage no less than 5 times. The most recent shuffle is going on right now. That's what has prompted this post. Hopefully the shuffle is over with this latest roundabout.
To make matters more "fun" this is the time frame in which I was diagnosed with Cerebellar Ataxia. Now we get to add that to the "fun." Actually, I consider myself extremely blessed in all this. I count my blessings all the time and they always vastly out-weight the crap. Anytime I start to get flustered about the daily grinds everyone has or the ataxia not everyone has, I get cranky (I'm human), but then I think about all that's been done for me and given to me. I'm pretty darn blessed.
Headaches of all types come and go and come and go again. Fortunately, I've got a lot more than just myself.
Tuesday, February 17, 2015
Oh the Headaches - 2/17/15
I know that headaches aren't often shown as part of this disorder but oh do they add to it. I have had headaches since age 5. Not just regular headaches but powerful ones that would shut me down. You'd think after having them for 27+ years I'd have figured out how to deal with them. Problem is I super stubborn. I know if I take an Excedrin type medication, drink something with caffeine, and go to sleep for a few hours it should go away. Well that works 50% of the time. Lately, I've been having headaches that are very strong. I've even started to wake up with them which didn't happen before.
Three times in my life I've "broken down" and sought professional help. The first time was about eight years ago. The neurologist ordered an MRI of my head and prescribed two drugs. One as a daily and one to take only when I felt a headache coming on. The MRI came up with no answers regarding the headaches (tumors, etc.) and the medication made me feel very bad so I stopped taking either.
The second time was when I went to the ataxia specialist and I told him my aversion to medication so he prescribed a medication to take only when I felt a headache coming on. I got that medication, felt a headache coming on and took it. I proceeded to have the second worst headache of my life. When it finally slowed down and I could safely take more I did and it ramped right backup to as bad as it was.
This caused me to miss two and a half days of work. So I went back to my family doctor and he prescribed a daily medication but it was one that you should be on long. For a glorious week I didn't have any headaches! Then came yesterday, the first day without the medication and it started absolutely fine. When 1:30 in the afternoon rolled around along with it came another massive headache. It lasted until about 9:00 this morning and as of right now at least, it's gone.
These headaches most likely don't have anything to do with my ataxia but they sure make it harder to deal with. Back to the drawing board.
Three times in my life I've "broken down" and sought professional help. The first time was about eight years ago. The neurologist ordered an MRI of my head and prescribed two drugs. One as a daily and one to take only when I felt a headache coming on. The MRI came up with no answers regarding the headaches (tumors, etc.) and the medication made me feel very bad so I stopped taking either.
The second time was when I went to the ataxia specialist and I told him my aversion to medication so he prescribed a medication to take only when I felt a headache coming on. I got that medication, felt a headache coming on and took it. I proceeded to have the second worst headache of my life. When it finally slowed down and I could safely take more I did and it ramped right backup to as bad as it was.
This caused me to miss two and a half days of work. So I went back to my family doctor and he prescribed a daily medication but it was one that you should be on long. For a glorious week I didn't have any headaches! Then came yesterday, the first day without the medication and it started absolutely fine. When 1:30 in the afternoon rolled around along with it came another massive headache. It lasted until about 9:00 this morning and as of right now at least, it's gone.
These headaches most likely don't have anything to do with my ataxia but they sure make it harder to deal with. Back to the drawing board.
Tuesday, January 27, 2015
Specialist 1/27/15
I finally had my first appointment with an ataxia specialist at the University of Michigan. I went to the National Ataxia Foundation conference in Las Vegas in 2014 and they suggested strongly that seeing a specialist is the best way to go. Now that I was able to do that I very much agree. This is the third neurologist I've seen and though I was correctly diagnosed to an extent. My first Neurologist told me he was out-of-his-depth, the second was too proud to admit she was also, and now this one has what seems like a plan.
I gave more blood and hopefully these test will yield the answer the doctor needs and we'll have a plan of attack. If they don't have the answer then we'll move on to more tests.
For the time being I'll just have to wait and see. But from where I sit know, I'm very happy that I started seeing a specialist.
I gave more blood and hopefully these test will yield the answer the doctor needs and we'll have a plan of attack. If they don't have the answer then we'll move on to more tests.
For the time being I'll just have to wait and see. But from where I sit know, I'm very happy that I started seeing a specialist.
Wednesday, January 14, 2015
What's Up - 1/15/15
Okay, okay so I didn't do anything for more than a year. I thought I was ready at that time, I was wrong. Am I ready now? I have no idea.
I have an appointment, latter this month, at the University of Michigan. They are one of the very few places that specialize in the study of Ataxia. I am blessed to be located close enough to UofM to make an appointment easy to attend. I've been poked and prodded a ton of times so hopefully they'll (the doctors) have most, if not all, of the information they need.
I'll attempt to keep this up this time. For now I'm going to shoot for one short post a month. (Tough, I know) If I'm able to do that, maybe I can do more.
I have an appointment, latter this month, at the University of Michigan. They are one of the very few places that specialize in the study of Ataxia. I am blessed to be located close enough to UofM to make an appointment easy to attend. I've been poked and prodded a ton of times so hopefully they'll (the doctors) have most, if not all, of the information they need.
I'll attempt to keep this up this time. For now I'm going to shoot for one short post a month. (Tough, I know) If I'm able to do that, maybe I can do more.
Subscribe to:
Posts (Atom)