I founded the Carnival of MS Bloggers in 2007 to connect the growing MS Blogging Community. My vision was to become the central hub where bloggers could find each other and to feature a collection of independent patient voices.

As larger MS organizations have also begun to feature patient voices on their own websites in recent years, the Carnival of MS Bloggers is no longer the single driving force in serving this wonderful community. For that we should all be grateful.

Thank you for continuing to support me in this one-person labor of love over the years. As of now, I will be taking a break from hosting the Carnival of MS Bloggers.

Please feel free to continue to email me to alert me to new MS blogs to add to the comprehensive MS Blogging Community index.

Sincerely,
Lisa Emrich

Thursday, July 29, 2010

Carnival of MS Bloggers #68

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

Takes A Village and the Americans with Disabilities Act


There are always at least two ways to do everything. Right or wrong. Good or bad. Alone or with others.

I like to do things with others. In fact, I am certain that my life is better because of all the people in it. I can say with certainty that as a person with a disability, my life is also easier because of all the people in it.

If I need help, someone is there to help. If I need someone to talk to, someone is there to listen. If I need a laugh, someone is there to play with or share a joke. When I am there to listen to someone else, than I know that I am of value to another person.

Having people in your life and being involved with others is a great reminder that you are alive and worthwhile. It can also help one forget about their troubles for awhile and that is always a good thing.

I recently read an article about isolation (InsideMS /Healthy Living / Isolation) that was written by my friend Alison Dale. It turns out that isolation is a pretty big problem in our MS community and is often a problem for anyone living with a chronic condition. I am guessing that it is a problem for many people without a chronic condition as well. (Isolation can lead to depression and that can be a serious problem. If you or someone you know suffers from depression, please get help.)

There are many reasons why and how a person becomes isolated. Some may have to do with physical limitations or disability. Some with fatigue and sometimes it is just the belief that no one understands or cares. Whatever the reason, isolation means being alone and being alone is no way too spend all of your time.

If you are alone and don’t want to be, do something about it. Call a friend and invite them over. Go to church or temple and find ways to get involved there. Join a club or service organization. Volunteer. There are hundreds of ways to get involved with others and millions of nice, caring people in the world. Finding them is not difficult. It just requires a little initiative.

If you are not a likable person, become one. Learn to ask questions of and about others and listen to their answers. Practice gratitude. Say hello to strangers and learn to smile. You will get back what you put out and will soon find that you have created your own community.

If you are not alone, go find someone who is. Make a difference in someone else’s life. You will both be glad that you did.

Life is better when you have people to share it with. For some people that may mean marriage or family. For others, it may mean friends or belonging to a group.

Having a full, rich, meaningful life requires people to be in it. In my case, it takes (or at least I have) a village.

Participate. Make a difference. Live a life that matters.




MS Activists Attending the White House ADA 20th Anniversary Celebration (left to right): Bill MacNally of Minnesota, Patrick Vanderpool of New York, Channing Barker of Oklahoma, and Jackie Jackson of New Jersey


(left to right) MS activists Channing Barker of Oklahoma, Patrick Vanderpool of New York, Shawn O'Neail, Jackie Jackson of New Jersey, Bill MacNally of Minnesota, and Shahieda DaSilva of New Jersey

On July 26, five MS activists from around the country were invited to the White House to celebrate the 20th anniversary of the Americans with Disabilities Act (ADA) being signed into law. The ADA established a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities, guaranteeing equal opportunity for individuals living with disabilities in public accommodations, employment, transportation, state and local government services, and telecommunications.

The invited MS activists were able to hear President Obama in his remarks give due credit to the grassroots origin of the historic law, stating that “It began when Americans no longer saw their own disabilities as a barrier to their success, and set out to tear down the physical and social barriers that were.” Click here to view the full video or read the transcripts of the ceremony.

President Obama also shared his personal experience and the strength of First Lady Michelle Obama’s father, who was diagnosed with MS yet never missed a day of work and kept moving forward (viewable at approximately minute 33 of the full video). Ongoing efforts to ensure that the ADA realizes its full potential were also highlighted. These efforts include newly issued regulations from the Department of Justice protecting disability-based discrimination and requiring all new buildings to be compliant with 2010 accessibility standards; upcoming rules that will promote the accessibility of websites; and the launch of the Year of Community Living initiative to uphold the principles of the Olmstead court decision and community-based care.

The celebration ceremony concluded with President Obama signing an Executive Order that establishes the federal government as a model employer of individuals living with disabilities—with the goals of better recruitment, training, and retention.


President Obama at the ADA 20th Anniversary Celebration


MS activists Channing Barker and Patrick Vanderpool with Senator Tom Harkin (IA)


by Trevis Gleason

I’m not going to lie to you. I began writing this blog over the weekend and it was supposed to be posted on Monday. I’ve had a very difficult time trying to find the right angle to address this week’s 20th anniversary of the Americans With Disabilities Act (ADA).

There can be no doubt that the law has changed the very face of cities in which I’ve lived, sites I’ve frequented, and constructions projects with which I’ve been involved. I have also seen how non-compliance can adversely affect people more severely impacted with mobility issues than myself.

How, though, have the pages of this important legislation, now two decades old, had an impact on me?

I remember living in New England back in the 1980s, when our nephew would visit in his wheelchair, and how difficult old buildings and curbs without cut-outs could be to navigate. We learned to look at things with a whole new eye, a “less-able” eye (I should thank Jason for that opportunity. It has paid dividends on the dividends!).

I have also seen utter indigence on the part of many when shortcomings are pointed out in construction plans or when costly accommodations must be made – hell, they needn’t even be costly to ruffle some feathers.

I’ve only ever worked for one company that would have been considered large enough (some subsidiaries are even designed to be too small) to be required to comply with ADA regulations.

At this point in this piece, I should point out that I haven’t really had much need for the accommodations provided in ADA. Quite frankly, the days that I’m in that much need, I’m not likely to leave the house anyway…

But I do acknowledge that many things I have benefited from wouldn’t have been there were it not for the ADA, even if they’re not actually in the regulations.

Would cities really have concentrated so much on para-transit? Would everyone else in my community give off to the person who parks in a disabled space without sticker or need? Would the community even see as many people using walkers and scooters and chairs were it not for a 20-year old law which has made it easier for them to live a life out in the town?

I don’t know, I don’t really know, how my life has been directly impacted by ADA. Possibly many of you feel the same way, as a number of us have been diagnosed with multiple sclerosis far fewer than 20 years.

Maybe that’s the beauty of such a law; it has changed the very fabric of our country to the point where all of the changes begin to feel like the norm.

As we take a few moments to reflect on a law that (know it or not) has changed the country for all of us, I’d like to know how the ADA has changed your community, your life… your life with MS.

Wishing you and your family the best of health.
Cheers,
Trevis


This concludes the 68th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on August 12, 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, August 10, 2010.

Thank you.

Comments for this post.

Thursday, July 15, 2010

Carnival of MS Bloggers #67

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

Professionals, Patients, and the Lottery

by Judy of Peace Be With You


all over the world
committed professionals
looking for a cure

in a leap of faith,
though unsure of benefits,
patients take their shots

uncharted pathways
we explore together
hoping for the best


by Dr. Rob at Musings of a Distractible Mind

Dear Patients:

You have it very hard, much harder than most people understand.  Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like.  How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like?  How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue?  How do you decide when to believe them or when to trust your own body?  How do you cope with living a life that won’t let you forget about your frailty, your limits, your mortality?

I can’t imagine.

But I do bring something to the table that you may not know.  I do have information that you can’t really understand because of your unique perspective, your battered world.  There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you.  It’s information without which you bring yourself more pain than you need suffer; it’s a truth that is a key to getting the help you need much easier than you have in the past.  It may not seem important, but trust me, it is.

You scare doctors.

No, I am not talking about the fear of disease, pain, or death.  I am not talking about doctors being afraid of the limits of their knowledge.  I am talking about your understanding of a fact that everyone else seems to miss, a fact that many doctors hide from: we are normal, fallible people who happen to doctor for a job.  We are not special.  In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help.  We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.

But chronic unsolvable disease stands square in our way.  You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you.  We don’t want to face things we can’t fix because it shows our limits.  We want the miraculous, and you deny us that chance.

And since this is the perspective you have when you see doctors, your view of them is quite different.  You see us getting frustrated.  You see us when we feel like giving up.  When we take care of you, we have to leave behind the illusion of control, of power over disease.  We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress.  You are the rock that proves how easily the ship can be sunk.  So your view of doctors is quite different.

Then there is the fact that you also possess something that is usually our domain: knowledge.  You know more about your disease than many of us do – most of us do.  Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing’s disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder – your defining pain -  is something most of us don’t regularly encounter.  It’s something most of us try to avoid.  So you possess deep understanding of something that many doctors don’t possess.  Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease.  It’s like a parent’s knowledge of their child versus that of a pediatrician.  They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.

So when you approach a doctor – especially one you’ve never met before – you come with a knowledge of your disease that they don’t have, and a knowledge of the doctor’s limitations that few other patients have.  You see why you scare doctors?  It’s not your fault that you do, but ignoring this fact will limit the help you can only get from them.  I know this because, just like you know your disease better than any doctor, I know what being a doctor feels like more than any patient could ever understand.  You encounter doctors intermittently (more than you wish, perhaps); I live as a doctor continuously.

So let me be so bold as to give you advice on dealing with doctors.  There are some things you can do to make things easier, and others that can sabotage any hope of a good relationship:
  1. Don’t come on too strong – yes, you have to advocate for yourself, but remember that doctors are used to being in control.  All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion.  That’s a good thing in the long-run, but few doctors want to be greeted with that reality from the start.  Your goal with any doctor is to build a partnership of trust that goes both ways, and coming on too strong at the start can hurt your chances of ever having that.
  2. Show respect – I say this one carefully, because there are certainly some doctors who don’t treat patients with respect – especially ones like you with chronic disease.  These doctors should be avoided.  But most of us are not like that; we really want to help people and try to treat them well.  But we have worked very hard to earn our position; it was not bestowed by fiat or family tree.  Just as you want to be listened to, so do we.
  3. Keep your eggs in only a few baskets – find a good primary care doctor and a couple of specialists you trust.  Don’t expect a new doctor to figure things out quickly.  It takes me years of repeated visits to really understand many of my chronic disease patients.  The best care happens when a doctor understands the patient and the patient understands the doctor.  This can only happen over time.  Heck, I struggle even seeing the chronically sick patients for other doctors in my practice.  There is something very powerful in having understanding built over time.
  4. Use the ER only when absolutely needed – Emergency room physicians will always struggle with you.  Just expect that.  Their job is to decide if you need to be hospitalized, if you need emergency treatment, or if you can go home.  They might not fix your pain, and certainly won’t try to fully understand you.  That’s not their job.  They went into their specialty to fix problems quickly and move on, not manage chronic disease.  The same goes for any doctor you see for a short time: they will try to get done with you as quickly as possible.
  5. Don’t avoid doctors – one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address.  I can’t work that way, and I don’t think many doctors can.  Each visit should address only a few problems at a time, otherwise things get confused and more mistakes are made.  It’s OK to keep a list of your own problems so things don’t get left out – I actually like getting those lists, as long as people don’t expect me to handle all of the problems.  It helps me to prioritize with them.
  6. Don’t put up with the jerks – unless you have no choice (in the ER, for example), you should keep looking until you find the right doctor(s) for you.  Some docs are not cut out for chronic disease, while some of us like the long-term relationship.  Don’t feel you have to put up with docs who don’t listen or minimize your problems.  At the minimum, you should be able to find a doctor who doesn’t totally suck.
  7. Forgive us – Sometimes I forget about important things in my patients’ lives.  Sometimes I don’t know you’ve had surgery or that your sister comes to see me as well.  Sometimes I avoid people because I don’t want to admit my limitations.  Be patient with me – I usually know when I’ve messed up, and if you know me well I don’t mind being reminded.  Well, maybe I mind it a little.
You know better than anyone that we docs are just people – with all the stupidity, inconsistency, and fallibility that goes with that – who happen to doctor for a living.  I hope this helps, and I really hope you get the help you need.  It does suck that you have your problem; I just hope this perhaps decreases that suckishness a little bit.

Sincerely,
Dr. Rob

[Although not an MS blogger, I thought that Dr. Rob's post was extremely important and applicable for many of us in the MS community.  If you haven't discovered Dr. Rob's blog, I highly recommend it.]


by Judy of Peace Be With You


Let us be honest.
None of us would have chosen
to contract MS.

To be practical,
what is the point in asking
why this thing happened?

The pressing question,
how to deal with what we have
in the here and now.


by The Wheelchair Kamikaze
Questions
Image by Oberazzi via Flickr

Though I've never seen any research studies proving this, I'd wager that one of the most commonly asked questions by those struck with chronic illness is "Why me?" They may not express it very often verbally, but using myself as a guide, I'd say this little two word query crosses the mind of most patients several times a day. I find that it often leaps to the forefront of my consciousness as I watch the evening news, with its daily parade of murderers, child molesters, and assorted miserable scoundrels, all sauntering along under their own power without need of a wheelchair, cane, or brace. Certainly, the universe must be upside down. Granted, I'm no angel, but the fact that Charles Manson can do jumping jacks to his heart's content, and I'm stuck relying on a set of wheels sprouting from my backside to simply get across the living room is just plain wrong. Is there no justice?

Well, the short answer is, no, there is no justice. Justice is a human construct, an invention we use to placate the need we have to see perceived bad punished, and good rewarded. The question of whether or not we live in an ordered universe has been a subject of puzzlement for mankind since we developed the mental capacity for self-awareness. My Zen leanings have me wanting to believe that somewhere a universal accounting is taking place, but there's a considerable part of me that can't shake the notion that this is all just one big jumbled game of pickup sticks, a tangle of randomness and happenstance in which we are caught up like the silver ball in a pinball machine, being buffeted from bumper to bumper. Still, shoving all rationality out of the way, the mind screams insistently for an answer, why me!

I get my hair cut by a delightfully wacky Thai woman who practices a strange sort of evangelical Buddhism. I've always had a knack for attracting the eccentric, most of whom I develop some real affection for, this lady no exception. She told me that her meditations have revealed to her that I suffer from Multiple Sclerosis in this life because in my past life I was an alcoholic who was cruel to animals. She also told me that my wife Karen is stuck as my caregiver this time around because we were together in my previous inebriated incarnation, and Karen was the dastardly miscreant who kept me swimming in booze. Due to these previous shared misdeeds, we're both paying the piper in our present manifestations. Her advice: stay away from the firewater, and carry around breadcrumbs to feed any birds I encounter on my wheelchair excursions, committing some random acts of kindness to make up for whatever heinous violations I visited on our furry and feathered friends in my previous life. I'm not quite sure I buy this story, but my mind shrieks for an answer to "why me?", and, lo and behold, the universe has provided me with one, along with a pretty decent haircut. So there.

A funny thing I've noticed about human nature (at least, this human’s nature) is that when awful things befall us, we're quick to ask "why me?" but when fortune smiles upon us, we don't question our deservedness, or the astounding wisdom of the universe. Back in June, 1994, I won $14,000 in the Florida lottery. The night before, I'd gone shopping in the supermarket on my way home from work, and then realized I'd forgotten to buy some butter. I stopped at a grimy little convenience store near where I lived to rectify the situation, and while waiting on line to pay for my item, I got stuck behind a guy buying what seemed like hundreds of dollars worth of lottery tickets. Figuring what the hell, when I finally made it to the cashier, I spent a buck on a Fantasy Five ticket, letting the lottery machine pick my numbers for me. The numbers on the ticket read 10, 15, 20, 24, and 25. I made mental note of the relative symmetry of the randomly generated numbers, and put the ticket in my wallet.

The next day, I started feeling sick at work (the result of the convenience store butter?), and went home soon after lunch. Once home, I started to climb into bed, newspaper in hand, when glancing at the front page I noticed that the Fantasy Five winning numbers included 10, 15, 20, and 25. Relatively sure that those numbers matched the digits on my ticket, I reached for my wallet to see just how close I'd come to winning the jackpot. I quickly confirmed that four of the numbers on the ticket matched those listed in the newspaper, and saw that the fifth number was 24. Checking the newspaper, I was shocked to see the number 24 nestled between the 20 and the 25. I had won the big one, all five numbers on my ticket miraculously matching the winning numbers listed in the newspaper. A quick call to the phone number listed on the back of my lottery ticket confirmed that I was indeed a winner, and I was told that if I made it to the local lottery office before 3 PM, I could have a check that day. My illness mysteriously lifted, I was soon on my way to pick up a nice big juicy check for over $10,000, the amount of my winnings minus the mandatory sacrifice to the tax man.

I'd imagined winning the lottery millions of times in the past, just as I had imagined being told I had some dread illness innumerable times (I was a very accomplished hypochondriac). My reactions when both situations passed from fantasy to reality bore little resemblance to the scenes that had played out in my mind. Upon winning the lottery, I wasn't shimmying around my apartment, caught up in ecstatic convulsions as I had pictured. I had a good laugh, called a friend to tell them of the news, and then got in my car and picked up my money. When told I had Multiple Sclerosis, I didn't collapse sobbing to the floor or sink into a sudden and permanent state of catatonia, as I had so many times in my mind, but experienced a stab of dismay, a sudden recalibration of my life's priorities, and a resolve to fight this freaking thing with everything I had. Perhaps because of my hypochondria, my diagnosis felt almost like a confirmation of something I'd known my whole life, that I was indeed sick. In retrospect, maybe I wasn't a hypochondriac after all, maybe I innately sensed that something just wasn't right.

Theoretical physicists, starting with Dr. Einstein, have known for quite some time that we live in a universe whose ultimate secrets lie far beyond our powers of comprehension. We can seek to tease apart the intricacies of the universe, but on a very basic level, though we may someday be able to describe them, we will never truly be able to experience them. The most current hypothesis, which draws closer to being proven with each new collision of speeding electrons in a particle accelerator, is that we live not in a universe but in a multiverse, the possibility of infinite parallel universes existing alongside our own appearing ever increasingly to be reality. We very likely exist within a framework of 11 dimensions, of which our puny little minds can only perceive three. There is much that is unseen, but very near.

Perhaps then there are answers to "why me?" somewhere amidst the vast incomprehensible, but they will forever be beyond the powers of our minds to grasp. As my diagnosis with MS and my winning the lottery illustrate, extremely unlikely events happen to each and every one of us, and our efforts to discern some deeper meaning or some recognizable pattern from that which befalls us have about as much chance at success as a beagle has at mastering calculus. Ultimately, the answer to "why me?" is probably best answered by its corollary, “why not me?” Good and bad are meted out to the deserving and undeserving both. Rather than struggle to understand, we must accept, and in that acceptance find the inner strength that is the fuel for the hope that drives the will to fight for that which MS has taken from us, and triumph, if not in body, than in spirit (but hopefully in body).

Be strong, my friends. The answers lie within.



This concludes the 67th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on July 29, 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 27, 2010.

Thank you.

Comments for this post.

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,
Webster




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 
Capitol
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 
program.
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.

MS Bloggers A-D

MS Bloggers E-L

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MS Bloggers N-S

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