Thursday, July 1, 2010

Carnival of MS Bloggers #66

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Motivation, Exercise, and Advocacy

I am feeling rather depressed today. My PT, Shannon, pointed out some truths to me about my "lack of compliance" with my exercise routine. She sees right through me. She's good. And she isn't even a specialist with MS! Still, she certainly hit on my buttons, in a very kindly way, as we discussed the ebbs and flows that is MS.

Why am I not doing my home exercises? I don't know. Because I don't believe that they will keep me from getting worse, I guess. In my heart of hearts I feel it is inevitable - getting worse. I have seen it - too much of it - it will happen to me, too. And I guess I feel that there's not anything I can do that will change that. So, I don't bother. I started out with high hopes, and I was getting stronger. . . THEN, I got that damned sinus infection which pretty much put me back where I was. I guess I'm feeling, "What's the point?"

Of course, I know that  if I continue the way I have been - not doing much of anything - I WILL get worse. So then, if I do the work, and don't get better, perhaps I'll just stay the same. Like treading water: sometimes it takes a lot of effort just to stay afloat.

So, I've been feeling a little blue today, just shy of crying. Thinking about what I have to do to change my thinking. Oh- and I have been taking Ampyra for five days now, and have not noticed a difference. There's that, too.

And then I read this, which leads to thoughts of the BP oil washing up on the once pristine beaches of Florida, and Louisiana, and these thoughts do nothing to make me feel better about my situation, at all, but just seems to be a swirl of negativity circling the drain.

I didn't get enough sleep last night; I woke up  feeling like crap. But I went to PT and I walked in water for 25 minutes, and the treadmill somehow pushed the speed up a notch to a six, when Shannon set it at a five, so it was no wonder I was feeling the difference.

Anyway, we made a plan. Do one thing: the Roll for Control. Every day. It takes, what?, five minutes? Then throughout the day do little things like standing balance exercises, or pulls with the TheraBand, or seated marching during commercials. But those things are all extra. The Roll for Control is what I must do  every day, without fail.

I'm going to go to bed. Tomorrow has to be a better day.

Good Night, TTYL, and Be Well,

Always trying something new---this cheap, plastic device (that probably made someone millions) lets your feet simulate walking, while you are seated. It will keep the blood circulating, lightweight, sounds super! I don't have the foot strength or calf strength to move the left one. I had hoped it would have a teeter-totter effect...but, no.

And off I head in search of the next affordable device to help my MS.

Jennifer and I, along with her care coordinator Rochel Genge, R.N. and others from Region VII Area Agency on Aging, interacted with many elected state officials at the third annual Older Michiganians Day in Lansing on June 10.

Self portrait of 
Jennifer & I getting political at the 
Self portrait of Jennifer & me getting political at the Capitol
Jennifer & Rochel after our chance 
meeting with Rep. Caul
Jennifer & Rochel after our chance meeting with Rep. Caul
We even have photographic proof that we advocated for the MI Choice Medicaid Waiver Program through impromptu conversations with influential legislators Sen. John Gleason, Sen. Deb Cherry and Sen. Roger Kahn on the lawn in front of Michigan’s State Capitol Building. While we have met Sen. Cherry and Sen. Kahn before (see related post here), this was the first time we met Sen. Gleason.

Jennifer followed up with Sen. Gleason after he spoke to the more 
than 600 OMD participants to thank him for supporting the Waiver 
Jennifer followed up with Sen. Gleason after he spoke to the more than 600 OMD participants to thank him for supporting the Waiver program.
But we forever will get giddy when we think and talk about our chance meeting for which we have no picture. No picture because we never expected to run into our State Rep. Bill Caul in the House Office Building hallway as he was rushing to get to a meeting in the Capitol Building across the street .
Sure, we were on our way up to his office to remind him of MI Choice Waiver Program and how it saves the state millions of dollars and how it is making it possible for Jennifer—one of his constituents—to continue living in her own home and positively contributing to her community. But as we made our way to get in line for the elevator, Rep. Caul made his way around the hallway corner and I whispered to Jennifer, “That’s Bill Caul right there!”
Jennifer made a split-second pause to increase the speed of her power wheelchair and, without saying a word to me, sternly rolled forward and called out, “Excuse me, Representative Caul?”
The noticeably tall representative who has served our district since 2004 stopped, looked down at Jennifer and smiled. “I don’t know if you remember me, but we’ve been down here before to advocate for the MI Choice Waiver Program that provides the services for me to continue living in my own home …” Rep. Caul was shaking his head and kindly cut Jennifer off.
“Of course I remember you,” he said with a smile.
Perhaps he says this to all his constituents but we’ve never felt someone, especially a politician, offer such a genuine confirmation that he knew who we were. They say pictures are worth a thousand words, and I’m wondering if the reason we have no picture of our meeting with Rep. Caul is because a thousand words wouldn’t be enough to describe this moment.
Knowing he had to get going, Jennifer told him we would leave some MI Choice information in his office. While he needed to get going, Rep. Caul stood there for a few more seconds to thank us for coming and for what we do to advocate for the needs of Michigan’s elderly and disabled citizens.
He shook our hands and then made it to his session a few minutes late, all because he took the time to listen to what we had to say.
We came home feeling so empowered and excited about the work we had done that day.
A powerful meeting: Jennifer with Sen. Cherry, who spoke about the
 power of advocacy
A powerful meeting: Jennifer with Sen. Cherry, who spoke about the power of advocacy
But it not only was for the work we had done to help ourselves, it was knowing our efforts also helped the people who weren’t able to be there to speak for themselves.
We always tell members of our MS self-help group they should be their own best advocates, and we encourage you to do the same.

Our fifth time we've met with Sen. Kahn to talk about the MI 
Choice Waiver Program
Our fifth time we've met with Sen. Kahn to talk about the MI Choice Waiver Program
Find your passion and be a voice to make things better for yourself and for others like you. For example, if advocating for the needs of people living with M.S. is your passion, a great place to start is registering for the National MS Society’s Action Alert to receive news and information about M.S. advocacy news and legislative issues.
To borrow the line our respected fellow blogger Michael Gerber uses to conclude each of his posts at Perspective is Everything: “Participate. Make a difference. Live a life that matters.”

This concludes the 66th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on July 15, 2010. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, July 13, 2010.

Thank you.

Comments for this post.


  1. I love this post. The "Roll for Control" is something tangible I can see myself working towards. I admit I have become quite inactive.

    I want someone to kick my butt.

  2. Yeah, that roll for control can't lose---cheap, easy, and what can it hurt to try? Sherry, you must kick your own butt or you don't get any exercise...try a yoga position...good luck.

  3. Diane, Maybe you could kick both our butts! It couldn't hurt! AND, it'd be good exercise for YOUR left leg!

    I could use your little gizmo; my ankles are swollen!