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

Maybe it's Just One of Those Days
by Webster

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

New MS Device to Rehab My Swollen Feet
by Diane Standiford

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.

Awesome advocacy experiences
by Dan Digmann

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 & me getting political at the Capitol

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.

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

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

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.

Carnival of MS Bloggers #54

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

Living a Normal MS Life and Cognitive Reserve

PE Class, Wildwood Flower, and Buttons
by Kmilyun at Bifurcate in the Road

Augh you might be asking what in the world do adaptive PE, flowers, and buttons have in common. The short answer is me LOL.

Hang on to the edge of your chairs now because this is going to be one of those real exciting blog posts that you surly spent hours awaiting!

First off I could take paragraphs to go into all the things I can no longer do. Or pontificating on all the stuff you can do and I can not or things I can do and you can not. Blah blah blah it is all lip service no? (in this case keyboard hitting).

Seriously, I can not be the only person with MS that finds it highly annoying to read about some great and wonderful accomplishment someone with MS has managed. That really does not cheer me up or make me strive to reach for the the stars. And it has the rebound effect (or is it affect?) of the inevitable comments from family – gee they climbed a mountain with MS so what is the big deal about not wanting to go camping where there is no running water and the closest restroom is 10 campsites down. Obviously you should be able to do that it is not like climbing a mountain you know!

Then again should I really feel bad and guilty or be berated because I can still drive, or make it up the stairs? Is not my personal perspective of suffering good enough. I somehow do not qualify? I have come around to the conclusion/belief that each and every person who overcomes any disability whether judged big or small is busy climbing their own mountains. And these mountains can be akin to pole vaulting over mouse turds to raising a truck over ones head. They all count.

And the above being the lead in to why I really like my adaptive PE class. It is a diverse group that gathers four days a week for an hour in the short bus trailer. I have yet to hear, see, or sense from anyone in the class that someone is better or worse or crazier or sicker than someone else. It is what it is. People who can’t talk use those boxes to communicate, the blind, the wheelchair bound, the mentally disabled, the goofs like me – we all just – well are.

It is the first place I have been with people who are not close friends that when my brain has gone south and it appears I took a stupid pill where I did not feel stupid.

Moving on without a segue into the next topic – I have decided to learn to play wildwood flower on the dulcimer. I have listened to a few renditions of the song. My favorite is June Carters last recording of it. I think I have figured out the notes – well a few might be missing – but I will see. It is not easy to find TAB notation for the old style noter and drone playing. The ones I have found on the net are for chording and finger picking. Big attempt for me as I still have problems with Go Tell Aunt Rhodie LOL But I am gonna give it a try.

Rush hour traffic here in Sacramento is the pits. I really dislike driving in it anymore. But the shop where the Luthier can put the strap buttons on my dulcimers does not even get in till 4:30pm. I am getting smarter here now so give some credit, I know that it would be a bad idea for me to install them even though I have done many over the years on guitars. So I put on my brave face, kissed the dogs goodbye and ventured out onto the evil freeway – at the start of rush hour(s).

I did not get lost, I did not crash, and on the way back home in the peal of the rush I turned on my truck radio. Yes, I made it home and listened to some tunes on the way. Not really that distracting because top speed was about 20 for most of the trip. The dogs were really impressed with the strap buttons and I suspect the fact that I made it home before doggy dinner time had a lot to do with that.

Now I can hold and play my dulcimers without them shooting out off my lap like rockets headed for a crash landing!
So today I just was, I made a goal, and I did something normal.

Cognitive Reserve Hypothesis
by Shauna at Bugs, Bikes, Brains

We all know that neurological disease can lead to cognitive impairment along with possible physical impairment. For many of us with MS, we may have noticed lapses in memory, ability to find the right word (tip of the tongue syndrome), unusual moodiness. Some of these things are part of the aging process, sometimes related to stress and/or hormones, and sometimes they are related to the disease.

How do we hold off these impairments? By the time we realize they exist, it may be too late as damage may have already been done. That's the scary part. However, we also know that the human brain is amazingly plastic and that we continue to learn things as we age, so continued brain stimulation by way of physical and mental exercise may help.

There is a hypothesis called the cognitive reserve hypothesis. It suggests that "enrichment protects against neurocognitive decline secondarily to disease" (from Wikipedia). "Lifetime intellectual enrichment (estimated with education or vocabulary knowledge) lessens the negative impact of brain disease on cognition, such that people with greater enrichment are able to withstand more severe neuropathology before suffering cognitive impairment or dementia." This is from the latest study of this hypothesis.

You can think of it this way. Two people contract a cold. One person is a health nut, eats right, exercises every day, gets the appropriate amount of sleep. The other person is a junk food junkie potato couch. The health nut has a good body reserve to fight off the cold within two days. The junkie, though, has no reserve and suffers for a week. The health nut has an "enrichment" of his health, the junkie doesn't.

The cognitive reserve hypothesis doesn't state that enrichment protects you from cognitive impairment; it simply lessens the negative impact. The two people I mentioned above both caught a cold, but one was impacted less than the other.
Cool, eh? I thought so. And it's related to the current study I'm in, the one about cognitive impairment and brain connectivity. You can bet your boots I'll be watching for more studies on this topic.

Let's face it. We have MS. We know it's neurological and degenerative, affecting physical and cognitive abilities. Some of the damage we have little control over. But there are also some aspects over which we do have control. We can get on a disease modifying treatment as soon as possible. We can eat right, reduce stress, get the proper amount of sleep and rest, stimulate our minds and exercise smart.

I have talked about exercising smart before but will sum it up for new readers or to prod those of you who may have forgotten. Stimulate your mind: do puzzles, but do different ones every day. Mix 'em up. The brain is stimulated by new things. You can do a Sudoku one day, a crossword the next, maybe some logic puzzles the day after, but mix it up. By doing the same ones every day, you become good at those kinds of puzzles, but the brain isn't doing anything new, so doesn't get the same stimulation.

Exercising smart is a pretty easy one. If you go for walks or hikes or whatever and don't have an Ipod or MP3 player, try doing multiplication tables as you exercise, compose a letter in your mind, try to recall a favourite recipe from your childhood. If you have a portable media player, listen to an audiobook, or Spanish lessons, or music that you normally wouldn't listen to. You can download free stuff from the library. Take different routes when you walk or hike. Remember, the point is to give your brain something new to work on. In other words, exercise your mind and body at the same time.

Another way to think of it is like this: your brain looks for patterns, whether it's music or words or what you see. These patterns are ingrained in our brain after years, kind of like the beaten down paths from base to base on a ball field. your brain will take the path of least resistance. If you expose yourself to something new and different, your brain first goes "What?" and then starts to search for familiar patterns. Not finding any, it gets down to the business of processing the information, beginning to lay down a new path. That is stimulation. And it's a good thing.

S.


This concludes the 54th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on February 11, 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, February 9, 2010.

Thank you.

Comments for this post.

Carnival of MS Bloggers #34 - Expressions

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

"No words to express....."

Disintegrating
by Mon Voyage, Ma Chrysalide

dis-in-tə-grāt = To become reduced to components, fragments, or particles.

I have undoubtedly avoided writing about my Multiple Sclerosis for the past year. It makes me sad. I feel like writing about it makes it real and THAT makes me sad. Truthfully though, just living with it makes me sad. Not every day but often enough to be a thing I want to avoid. There are other things more putrid that I would rather do lately than discuss, talk or write about than what MS is doing to my body.

I need to start by stating that I felt compelled for the first time this year to fundraise for the MS Walk. Compelled because I began to feel a new sense of urgency I never felt before and it was brought on by a very upsetting new change in the landscape of my young body caused by…MS. First it was my left foot that started to look strange. Later it was confirmed by the Physical Therapist that I had atrophy of my left leg, ankle, foot and toes. Followed by a month ago, when I noticed after I got out of the shower that I had a massive dent in my upper thigh/hip area. I was informed that this is also an area of atrophy caused by MS.  

Informed. No one even attempted to soften the blow to my youthful and appropriate vanity. No, “I’m sorry, this is what MS does.” Just: “Yup, it’s the same as your foot.” So, god only knows if I will wake up tomorrow with another gap in my muscle on that leg. I hate MS.
There are no words to express how I feel about what MS is doing to my body. I have been struggling with another MS related change. My left foot no longer stays flat when I walk due to spasticity. I just tried out my custom fit AFO for the first time and although it needs some adjustments, it does help to keep my foot flat. The problem I have with it is that it makes wearing shoes impossible. Will I ever wear the thing? Probably not. It’s bulky, and due to my Dysautonomia I can’t walk that far anyway.

It is difficult to explain to people what it’s like to be almost 34 years old and not be able to walk with a normal gait, if at all. Or to be steadily losing your vision. Or to watch your young body be slowly disfigured by a disease you can’t understand and you can barely even pronounce.

I try to stay positive and most of the time, I am told by people that I am positive but somedays the effects of this disease on my life and body are hard to ignore. I truly hope in my lifetime they find a cure or something close to it.

I have been torn lately about how to confront my MS and I have some important choices to make this week. I have been off Tysabri since July 2008, taking my time to choose which disease modifying drug to go on. I realize I have taken too long because I have had a few small flare ups. I am thankful they have been nothing serious. Next week I see my Neurologist and I may choose Avonex. I am apprehensive about it because I had a bad reaction to Betaseron and they are so similar. I wish there was a better answer to treatment.
Time to choose…

MS'er Faith says
Here's to you...

This Thursday and Friday marked the end of my ski season (in a different way--keep reading), where I did improve (and hopefully will improve next year too!) By being up in the mountains, I missed the front range blizzard in Colorado.

A week or 2 ago I got a message from the old sprint coach at my high school, who I also felt gave me some pointers, was a motivator, and is one of the most beautiful people I will ever have the privilege of meeting and having as a motivator when I was in high school. I exchanged the usual how are you when she contacted me, and the surprising answer was she was not so good. While I have MS, she now has been diagnosed with ALS, or Lou Gehrig's disease.

So I have been thinking a lot about her--some anger, sadness, tears, etc. The thing I will never forget about her was what she told me after I finished 2nd in a 2 mile track race, at a big meet where I was really supposed to finish 5th or 6th. I don't remember what anyone else told me after that race, but I remember her taking the time to take me aside and tell me that I could have won that race. And I knew it. I'll never forget that.

This Thur and Fri her words from way back in high school continued to go through my head. I got to a point on the slope that I always somewhat miss and all of a sudden I heard in my head, "Beth, you could have won that race." With that, I sat up, leaned as I should, and nailed that point on the slope, and then never missed it the rest of the 2 days. There were other points too where her words came into play, and it made the 2 days of skiing more meaningful and more memorable.

Here's to you, Coach. This race I did win! And then I smiled one of my biggest smiles, ever!

Lazy Julie is Whining my way to a grateful heart...

Instead of sharing how I worked my way through my process to get to a place of humor, perspective, and gratitude, I thought I would share the mucky part before that and see if it makes me feel any better.

I am at the MS Center getting my monthly solumedrol drip, except I had to wait a half hour after the start of my appointment since I missed my March appointment. I am being punished for my non-compliance even though I am here which means I am trying to be compliant. Too late. I'm in the slot and there I will stay.

My feet are still numb and cold and even though I left a message for the neurologist yesterday, I have yet to receive a call back. And even though I am actually present in her office, she has yet to come by to see me and respond to my message about the numb feet. More punishment? I'll show her. She misses the solumedrol and her feet get numb, let her suffer because she deserves it. She brought it on herself.

I am alone. Lots of people are here alone but there are also people who have loved ones with them. It's probably 75% alone and 25% with people. So why I comparing myself to the minority and feeling bad?

The woman who is getting an infusion in the next pot just went to the bathroom. Her husband lifted her from the recliner into her wheelchair and then took her into the bathroom. I'm assuming he had to pull down her pants, put her on the toilet and either empty her cath bag (is there such a thing) or wipe her after she went to the bathroom. Who, exactly, would do that for me? Not that I want to be in a position to be having ANYONE take me to the bathroom but, God forbid, who will take me?

I am feeling like I have no loved ones that love me THAT MUCH. I am filled with self-pity and devoid of all gratitude. I am missing my dad and started crying when the nurse asked me why I missed the March appointment. I am missing that he was a person related to me who gave a shit and who I could count on no matter what. He would never let me be homeless. But I am not homeless. I have a job and a home and a refrigerator full of food.

I am missing Ken, too, not just as my boyfriend but HIM in particular. I am missing his eyes and his voice and his kindness and his hands and his love and his body. I'm not sure why I am missing him here and now. He never came to solmedrol drip appointments with me at this place. He probably would have tried to come if I asked but he never, ever would have offered on his own. Maybe I'm missing who I wish he could have been for me. In our relationship, he gave me a lot but he could not or didn't want to give me his whole self and his whole heart as a life partner. I am missing what he NEVER could give me. But then again, I hate when people feel sorry for me and cling to my independence at all costs so why am I craving that kind of support?

I am tired and want to fall asleep but I'm supposed to be working which I'm not doing anyway, so I should probably stop whining and either do some work or shut my eyes. I keep switching screens from this one to work email and feeling resentful about that.

I am, in short, not in a good place. I am sad, mad, scared, and, generally pathetic. I know that this too will pass. I know that because I am sharing my feelings, they will be halved I will get relief from the poison in my brain.

A woman just came in with a three-month old baby and I feel better looking at his peaceful face asleep in the stroller. Thank God.

I am not asking for help and I should be. I just closed my eyes and asked but I was not hit by a bolt of spiritual lightning.


This concludes the 34th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on May 7, 2009. 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, May 5, 2009.

Thank you.

Comments for this post.