Monday, October 14, 2013

MS Has Made an Appearance


Prior to about two months ago, MS was in my life, but it was easier to live with. I had many of the usual symptoms: difficulty with heat, headaches, some slight tingling in my legs, balance issues, and other minor annoyances. Well, that all changed. Two months ago, I was out in my backyard cutting a couple trees down. This is Houston, so weather is always an issue that time of year. It was 95 and I was feeling it. Anyways, something bit me on the neck and I didn't realize it when it was happening. What I remember, I took a shower that evening and my neck, shoulder and chest were feeling numb. I didn't think about it much, just that it felt strange. I forgot about it.

Friday night, man, it felt very noticeable and it was up in the side of my head and arm now, too. Okay, this is MS! This is what it's supposed to feel like! I emailed my MS doc early Saturday morning. Okay, I have to stop and say that at this time, I still didn't realize that I had been bit on the neck by something, an insect, a spider, something. I was just thinking, this is MS. Anyways, Monday, I realize there is some itching on my neck and I see about 5 or 6 red marks that look like bites. Your asking how do you feel itching when you are numb? Well, I'm not 100% numb. It's about 60% numb on my neck and shoulder. It decreases in level of numbness the further you go from that area, except my forearm, index finger and thumb are about 60% numb, too.

So, my MS doc responds that she is not recommending steroids, because I still have some feeling and I have full movement. Okay, the side effects of steroid treatment isn't something that people are bragging about, so okay, I guess I don't need that. Perhaps, when things calm down, the numbness will dissipate and go away, and the feeling will be restored, I hope. So, I will wait.

That's my story.

We Just Lost Track of Time, That's All


Where have you been, you ask?

Just trying to keep up, I suppose. I do things once in awhile. I'm involved more these days in trying to be a responsible MSer and volunteer my time and money. I posted a picture of last year's MS Walk at The Woodlands. I did it. I raised some money for the National Multiple Sclerosis Society. I trust that they are using it wisely. I trust them so much, that I volunteered to help with the organization of this year's MS Walk! Yes, I did.

So, I'm on the committee. I quickly realized that these folks know what they are doing. They have done it before and they have it down. My involvement has been minor, admittedly. But, I am paying attention and trying to take part when the occasion arises. I have actually contributed and as the date gets closer, I see my commitment becoming bigger. I will be manning a team t-shirt give-out next week prior to the walk. I will be at the walk-site on the evening before the walk, setting up for the next day's activities. Then, I will be at the walk-site at 5 am, the morning of the Walk! Ugh! It's a big day and we have to get it ready for the 9 am start time. Haha! I will be there!

Anyways, I formed a team again: "We Just Lost Track of Time, That's All" is our team name. Again, I am trying to recruit team members and I think I have a few ready to jump! Sometimes you just gotta jump! Right? I do have some news on the team front. Last week we made a push to raise more funds. I won the award for most funds raised! And, I won the award for most emails sent out! The prize for the funds was a two-night stay at the Omni Westside here in Houston. I turned it down and they awarded it to the 2nd place person. I wouldn't have used it and I hate to see it go to waste. But, I did claim the prize for the most emails sent out. That was a dinner coupon to El Meson and dessert at The Chocolate Bar. I think I can use that, so there you go!

Anyways, long story short, the countdown for the MS Walk at The Woodlands is started. We will be walking Saturday, October 26 at 9 am. Oh, here's hoping for a nice, clear Fall day!

Thursday, February 14, 2013

My First MS Support Group Meeting

I went to my very first MS Support Group meeting today. As expected, I was well received. The folks were absolutely wonderful. We had people from all walks of the MS journey. We had wheelchair users. We had cane users. We had people like me, who can still walk without help. We had spouses and caregivers. We had all been affected by MS in some way. We all had support as our main purpose for being there.

They let me talk for a bit. I, very briefly, told them my story. We had an hour and a half. There were three other new members. If they let me I could have kept them there all day and into tomorrow, but I had to squeeze my story down to a few precious minutes. Somehow, I managed that. I think I apologized more than once for dominating the conversation. They were very forgiving. I brought up a few things that they seemed interested in hearing about.

I told my Support Group about my MS doctor, getting diagnosed, that whole story. I told them about my involvement with MS Walk. I think one of the ladies sat at my table last Fall following the Walk. One of my ideas that I presented to the MS Walk organizers was to start an MS Walk in my community. That idea was met with a negative, but I may have parlayed that into a seat on their organizing committee for the next MS Walk. Later this month, the organizers are throwing a party for the contributors and I am invited. I'm going.

What else. I had volunteered for that CCSVI study with UT, and the Support Group liked hearing about that.

I asked about Ampyra, the Miracle Walking drug. There was a story told at the start of the meeting about one Group member who couldn't attend, because he was at an MS-sponsored function and he had fallen, breaking his hip. He was out of action. He had been wheelchair bound, then started taking Ampyra, and now he was walking! His fall is totally unrelated to Ampyra, by the way. Anyways, he is one success story when it comes to Ampyra. My story does not have me taking Ampyra. I have two months supply, but because of fears about the side effects, I have not taken it. Besides, as I stated to the Group, I can still walk without Ampyra, so why do I need to risk the side effects? Okay, enough on that. Except, let me say, we all personally signed a get well card for our fellow member who's hip is broken. Nice touch!

Okay, so far, this is mostly about me, but believe me, other people got in their two cents. It wasn't all about me. It was a good morning spent well. I will be going back. I enjoyed the people. They made me feel good about going.

Wednesday, February 13, 2013

MY MULTIPLE SCLEROSIS POSTER



This is my MS Poster. I made it several years ago. I didn't necessarily create it. I stole a lot of it from around the web. I can definitely attribute some of the quotes from the very creative MS blogger Brain Cheese who has a great and humorous twist on the way she sees things. I wish she would write more because she writes about life and reading her stuff always always brings a smirk to my face. There are quotes from obscure people in history. There are quotes that can be attributed to anonymous, too. Anyways, why did I make a poster? Because, I was feeling down and I felt like I needed something to raise my spirits. Making it provided it's own brand of therapy. Going back and reading it provides another. I have a need to do things and I have a need to appreciate the things I've done. Don't we all have this need? I have shared the poster with a select few. I have made very few changes to it over the years. I think it's done. Now, I'm sharing it with the MS world.

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.