Friday, November 30, 2012

The Gravity of Volunteering for MS


I am tired of having MS and not doing enough to help others who also have MS. I hope I never stop feeling that way. It should only motivate me to do more. What have I done? What will I do? There is so much I can do.


In the last year, I donated my body to science. I took part in a CCSVI study at the University of Texas Neurology Department here in Houston. I still don't know the results. I need to find out if they have been released. But, I believe the early/unofficial report I heard was that there is not a link between CCSVI and MS. I had this feeling that is where that idea was going. But, let's all wait for the official results before we all run off with that conclusion.


I participated in my first Walk MS! I started a team. I received lots of encouragement from friends, family and coworkers, but alas, I failed to get anyone to join my team, Team At Peace. I did raise $650 towards MS that the National MS Society is happy to have and to spend as they see fit. I walked in Walk MS at The Woodlands. I have talked by email with the lead organizer of this event, and I am lobbying to be part of the organization committee next year. I have already submitted a couple ideas on how to make the event more rewarding for participants. We'll see if they like what I say. I'll have more news on that later, especially if my offer to help is received warmly.


So, I have that going.


I can't remember if I mentioned this. We all have our personal issues, I know. A little over a year ago, I was diagnosed with prostate cancer. I'm just over 50 and relatively healthy otherwise,... what? Yeh, I have this MS thing, sure. Anyways, long story short, I opted to have surgery as opposed to radiation treatment, chemotherapy, or doing nothing. There are side effects to surgery, just like there would be with any of the other options. But, here I am a year later and still able to sit up and take sustenance. So, with the conglomeration of all that has happened to me, I suppose that has contributed to me feeling like I want to give back, give away, give out,... just give. I mean, we're all mortal, right? We can't take it with us. We have to leave it all behind when we go. Why not work towards that now, while I'm still here. I feel the need to do that and that need seems to be growing. It's timing, I guess. It's time to feel humble and realize that I'm not the only one on this planet Earth that is being held down by gravity.


Okay, so what's the plan. I actually offered to start another Walk MS in my own part of town. The reply was that there wasn't enough available bandwidth for another Walk MS. Plus, people from my part of town had no problem traveling to the other parts of town to do their walk. Okay. We can put my efforts into the other Walk MS. I thought about riding a bike in the MS 150 from Houston to Austin, but I honestly am not sure if I could make it. I was a stud at one time in my life, but that was another guy and it seems like a lifetime ago. I will let that idea go.


I thought about having a MS Texas Hold'em Poker Tournament. I like to play and I know there are a lot of other people that like to play, and a lot of them will even pay to play. So, the possibilities are there for a MS Hold'em Tournament! I recently was one of the organizers of a tournament for the United Way that raised over $40,000. I know how to do it. I think I can do it. I think I will talk to the organizers of the Walk MS in the Houston area and see what they think. I have incentive!


Okay, until later!

I'm sorry that this post and my previous post appear to not use paragraphs. That is not my doing. I have sent a message to Google to get an answer.

Sunday, August 5, 2012

A Workout For Someone With MS

For some it's rolling out of bed and then rolling to the kitchen in the morning. I'm lucky. I can do most things that people without MS can do. Sure, balance is an issue at times. My dog can attest to that. Long distance running is not on the menu. I am somewhere below that. Somewhere between housework and weight training and between the two, I don't prefer housework.

I've been slowed down lately with a heel problem and tendinitis in my elbow. The heel pain, after two months, is finally starting to subside. The elbow, ugh! Lately, it has been tough to open a bag of potato chips, it is so sore! My elbow, I can't rest. I have to use it. I have to eat those chips...

Anyways, when things calm down, and I trust they will... I will be getting back into my workout routine. I have an incline workout bench. You know, similar to the ones they sell on TV. Anyways, I love it. It allows me to use my body weight as the movable object. The angle of the bench changes the force it takes to move me. I can do it at home. I don't have to travel to the workout facility. I don't have to go into the dirty locker rooms at the workout facility. I am not working out on equipment that has seen the sweaty backs of thousands before me. My dog can jump up on my stomach and ride with me through my reps! She does! She really does! Jumping rope has become a feature of my workout. So simple, but so good for your cardio!

Coordination. Endurance.

Two years ago we had an employee Olympics. We had a relay and I chose to do the jump rope portion. I failed and was unable to complete the task. Someone literally jumped in to do it for me so our team could continue. I was embarrassed. Well, now I know that I could do it and with flying colors. So, now I am waiting to heal so I can get back into the working out that I love to do. I love it because I can see and feel the results. There is nothing better than being able to see and feel improvement, and to know that you earned it!

Ampyra Arrives Tomorrow

I think the comments I have read about Ampyra are split right down the middle. I have read that Amprya is a wonder drug that gives people the ability to walk that MS took away. I have also read the opposite, that the symptoms of MS have sped up. What else? Oh, the sick feeling and pain of taking Ampyra is worse than MS and not worth any insignificant gains. How about this? Nothing.

So, here I am. I am very worried about taking this drug. The side effects scare me. I do not want MS to be sped up by taking something else that is meant to help. I don't want pain and extreme discomfort when there is none to start with. I can see myself receiving the drug and sitting and waiting and reading more, researching more. Then I will decide what to do with it. Decision time in 24 hours.

Enjoy your day. I'm off to the country for an ATV ride.

Wednesday, August 1, 2012

No Link Between CCSVI and MS. Ampyra Is Coming. Other News.

I had my semi-annual MS doctor visit last week. Booooo!!!

I go the the Department of Neurology at The University of Texas Medical School at Houston. I have learned to like my doc there. But, she, like myself, is always fighting an uphill battle. While there for my visit, she reads back what I told her were my ailments from the previous visit. So, what I found out was, I was ailing from pretty much the same complaints that I was ailing from a year ago. So, Betaseron seems to be working and I will continue that treatment. But, this year, something was added to my arsenal. I was prescribed Ampyra. Ampyra is called the "walking drug" in the MS circle. At least, it is by me. I can already walk. So, why am I getting it? I have some increased numbness in my lower legs, more so in my left leg. Reading some of the reports on Ampyra on Trevis Gleason's Everyday Health Life With Multiple Sclerosis Blog I am a little concerned about the side effects and also whether I will actually experience some benefits. Most of the reports are from people with serious MS that require the aid of a cane or walker, to start with. I need no help to walk. I have experienced numbness, a slight lack of control and balance issues, when it comes to walking. I still jump off the tailgate of my truck.

We all know there is no cure. We all know that the symptoms of MS are destined to get worse as time goes by. But, I can still do things. Do I really need Ampyra? Anyways, long story short, Ampyra is delivering two months supply and it will be here next Monday.

Next subject. Is there a link between CCSVI and MS. Will it surprise anyone to know that the study recently done at UT, "probably says that there is no link"? I don't think it is official. But, I took part, and I had the feeling that there was no link. I received indication that it appears there is no link. This was just one study. I will leave it at that, because I am not a doctor or researcher. I am just a MS patient and I donated my body to this study and let them do what they wanted.

So here I am. I have not found love. I am still searching on that front. It will hit me some day, I'm sure. Who will I be when it does is the question.

Tuesday, March 13, 2012

The World Is Still Turning


It’s been over a year.

What happened? Living my life, I guess. What do I do when I’m not blogging, which has been rarely?

I have been playing way too much poker. I joined a recreational poker league in Houston and I did get up into the top ten in the standings before the league sort of left my area of town and I stopped playing with them. Now, I’m in another league and doing okay. I play with a lot of the same people, so not much has changed.

I’ve been exercising, trying to stay one step ahead of the MS. I have an incline bench that I use at home. It’s much more convenient than hopping in the truck and driving to a workout facility and using their sweaty equipment and stinky locker rooms that are breeding grounds for athlete’s foot fungus. Sorry, but that is my opinion of workout facilities. I find the incline bench is a blessing. I can jump on it and whip out a workout in no time. And, I do see the difference compared to what I was before I started working out.

Traveling to see family also consumes a lot of my time over the past couple years. Vacations to the Outer Banks and the shores of Delaware have been great! Other trips to see Mom and Dad in Florida for holidays are beneficial to my peace of mind.

Hunting takes up a lot of my time, too. I’m a big-time hog hunter. If you are a hunter and you live in East Texas, the hogs almost call you. I have a big hunt for hogs lined up for this coming weekend, as a matter of fact. Poker will have to go on hold. Two falls ago, I went to New Mexico for a week of black powder elk hunting. I climbed a few mountains while I was there. My brothers came out to join me as helpers and to make sure I didn’t get lost. It was a self-guided hunt. We saw elk, but all the elk we saw are still walking. Also, being in Texas, dove-hunting is a staple and I take part in that kind of hunt once a year, traveling to South Texas for that.

About the MS. I took part in a CCSVI study with the University of Texas, Department of Neurology, headed by Dr Wolinsky. Some of you may know him. Some may know of him. I have never met him. But, it is that department that I see for my MS. They take very good care of me. I don’t know the results of the CCSVI study, but my part is complete and they are analyzing the results now. Rumor has it that they have not established a link between MS and CCSVI. I have had that same feeling about this.

Anyways, I will make this brief and finish this entry. But, I hope to write more in the future about all of the above.