MS Fund Raising Walk 2010

Three weeks from today, Sunday, April 18, 2010, friends , family and myself will be taking part in the annual MS Fund Raising Walk. It can be a fun day. There is a party atmosphere, we walk along the boardwalk and the company is great.

But it is an event I would gladly pass up. Because it is an annual reminder of the fact that I have MS and that this incurable disease has devastated my life.

Of course I am not the only one afflicted with MS. The walk is also a sobering reminder that as bad as it is for me, there are others who are even sicker. I can still walk some distances, although I need either a cane or a walker. There are people I know with MS who have lost that ability, so to a certain extent I am lucky. I do need a wheelchair for any length of more than a block or two. I hate it, but at least it allows me to get places.

MS has stolen much from me. It has distorted my relationship with my children, who are often required to be caregivers rather than simply my kids. The same goes for my friends, who are wonderful and generous and solicitous, but I would rather be a plain old friend. It has taken away the ability to do anything spontaneously. I have to always worry, are there stairs, where is the bathroom, will there be someone to help me if I need it? I was just laid off from my job. How much of their decision had to do with the fact that despite being one of their top producers, I was a very expensive employee as far as health insurance goes. It was a self insured company. My health care costs run in the thousands every month. I am a liability to a small business. There are wonderful jobs out there that I am fully qualified for intellectually and professionally. But I can’t travel easily anymore. I can no longer maintain the pace I demanded for myself as a department head. So my hard earned career, which was going nowhere but up, is now in tatters.

I am in pain all the time, either from muscle spasms or from haywire nerves. So I tend to do things less and less. Running an errand is a project. It is a struggle to even get dressed.

The disease progresses incrementally. There is no predicting how far or how fast it will go. Statistics say most people with MS will have their life shortened ‘only’ by about seven years. When the time comes, how much will I want to have seven more years? Or will it be sooner? As immobile as I am, will I develop a pressure ulcer? I am on a powerful and dangerous medication to slow down the progression of the disease. Will I contract an infection that my immune suppressed body will not be able to fight? Will my next stumble and fall (for I am always stumbling and falling) be fatal?

Here is the thing: it is crucial to know the ‘me’ in the preceding paragraphs is EVERYONE with MS.

That is why the MS Walk is so important. The NJ Metro Chapter has an excellent rating as a charity. Almost 86% of the money they raise goes into programs for those of us with MS and into research to find a cure. There have been so many developments to treat MS in the past decade alone. That is thanks to fund raising for research.

Whether or not you live in the New Jersey area, I would love for you to be part of my team. You can be a Virtual Walker, collect donations and never have to set a foot anywhere. Or you can come join us on the Belmar boardwalk. Or you can make a donation to our team. I would be thrilled by any of those. This is the link to my team page:

http://main.nationalmssociety.org/site/TR?pg=team&fr_id=13121&team_id=204925

And if all you can do is wish us well and keep us in your prayers, I am incredibly grateful for that as well.

Thank you to those of you who have already made donations and for your beautiful messages of support. I am astonished when someone calls me an inspiration or brave. I'm just me. But thank you for thinking and saying such lovely things.

Thanks to all of you for reading my blog. And thank you for anything you can do to support the MS Walk.

Please leave any comments about your own experiences with the walk or with MS. I would love to hear from you.

A Great MS Walk!

Many, many thanks to everyone who supported Team Cooper in last Sunday’s MS Walk. There were 20 of us on the walk this year and we had a great morning. As usual in April, it was cool and windy on the boardwalk, but we had plenty of sunshine and super company. About 2000 people take part in the walk in Belmar, so the atmosphere is full of positive energy.

The best part is we are over 2/3 of the way to our goal. We have raised $2019.00 out of the $3000 we are shooting for. It is not too late!! I can still collect donations until June, so if you are so inclined, I would be incredibly grateful (click here to donate).

But I am still thrilled at the generosity of everyone who contributed, in person, financially or in spirit!! Thank you for bringing us that much closer to a cure for Multiple Sclerosis.

A Shameless Plug

Tomorrow is the 21st Annual MS Walk and Team Cooper is taking part for the fourth time.

Normally I am a total cynic about things that are MS group related. Call me crazy, but I have a Bad Attitude towards the disease that has devastated my life. It is one of those I-don't-want-to-belong-to-any-club-that-would-have-me-as-a-member things (with apologies to Groucho). Granted, there are worse clubs to belong to. But this one is pretty sucky.

However, the MS Society does do a lot of good work, both in directly helping people with MS (they loaned me the power chair I use for the walk, cheerfully and without question) and in supporting research. The walk is my tiny way of feeling proactive. And, believe it or not, it is actually fun. We walk on the boardwalk, we have a great group and it a terrific way to feel like we are doing something positive.

In my dreams, more than anything, I would love to have everyone of you incredibly wonderful people who read my blog come with us. To meet you all in person and be able to talk and laugh together would really be a thrill. Sigh. I know that is not possible, but how much fun would that be?!?!

Although, anyone close enough to Belmar is more than welcome!!

Barring that, any donation you could make to the MS Society for our team would be humbly appreciated. You can connect to my page here. We are more than halfway to our goal this year. Last year we exceeded it. I would love to be able to that again!

But finally, if you could just pray for us or keep us in your thoughts, that would be the best thing of all. Pray that we have good weather. Pray that we reach our goal. Pray that we find a cure for Multiple Sclerosis. Pray for everyone who has to deal with illness and hardship.

Thanks everybody!!!

MS Awareness Week: Awareness Wishes

I polled approximately 50 people I know who have MS. This is “Awareness Week”. What would you want people to be aware of in regards to having MS. Here are some of their responses, their ‘wish list’:

• That even in "remission" I deal with a barrage of symptoms daily. "Even though I look so good".

• That it sucks!!

• That not only are there the obvious issues with physical problems, but there are also MANY unseen ones: cognitive, bladder, sexual, bowel, TN, etc. (another person added, “A ‘hidden agenda’ of MS symptoms”).

• Fatigue is one of the most devastating effects of MS. It is invisible and very difficult to describe.

• I'd really like all the well-meaning muggles out there to stop sending me newspaper clippings of How to Cure Myself by spritzing my sublingual regions with donkey urine, and stop feeling obliged to mention that Mr or Mrs so-and-so are doing really well on this, that or the other therapy.

• To get people to understand what it means to be "chronic and progressive". That you can't be cured; that you won't "get better", even if you have good days; and the best treatment only slows down the rate you get worse.

• That stress - physical or mental - can royally fuck with us.

• I think I'd like people to be aware that MS is a disease. So many of my acquaintances seem to think it's an illness like a cold, that it will go away. It won't. I'm as good as I'm gonna get.

• That we can seem fine one minute and then totally clusterfucked the next minute...

• I'd like people to understand how CRUSHING it is. It is crushing financially, emotionally, physically and mentally.

• I'd also like people to know, just because you know someone who is worse off, does not mean I am not suffering.

• I would like to see muggles learn more about mobility issues for folks with MS and others. Don't park in handicapped spaces because you're "only running in for a second." Don't try to cut someone off to get out the door before a person using a walker or a chair. You're reflexes are faster than mine, and I can't always stop before I run into you. Don't keep moving your car forward while I'm in a crosswalk. I can't go any faster, so get over yourself! And if you invite me to a party, please make sure I have a place to sit, preferably in a location that allows me to socialize.


Yes, we do indeed call people without MS muggles. Goofy, but what can I say? It’s better than some of the other possibilities. We belong to a club that nobody wants to join, we are entitled to some perks.

One of my friends pointed out yesterday that I am getting many responses from people who already are aware of MS and its devastation. But we really want this message to go to people who had no idea exactly what this MS thing was all about.

We don’t want to climb Mount freaking Everest. We just want to live with as much dignity and autonomy as possible. Just like YOU! So spread the word, PLEASE!! MS is a horrible illness, but it can be tolerable with your help and understanding. With your support for fundraising to find a cure. With your awareness.

My friend Barbie wrote a very pithy little poem that wraps this whole issue up. If nothing else, we People With MS, at least the ones I know, love to laugh:

I have MS, I am a mess.
The doctor tells me not to stress.
My feet are numb, my eyes are blurred
I struggle to find my next word
The meds I take are priced quite high
To keep the faith I try and try
My family cries, “Do this! Do that!”
“You need to rub on Emu fat,
and use stuff we saw on TV!”
“You should get disability!”
They all have answers for my plight
but nothing makes my shit work right
I’ve tried it all and nonetheless
I have MS. I am a mess.

Thanks to all my wonderful, witty, indomitable friends, all PWMS, for your contributions, your enthusiasm and your resilience!!!!

MS Awareness Week: What to Do, What to Do?

So you find out you have it. You know vaguely what it is, what it does, what it might do. You have an idea what the costs are going to be, monetary, physically and emotionally. What next?

Everyone has a different response to having MS, even if their coping styles might be in the same continuum. We are all different, with different priorities and different baggage. Our history and our present circumstances will combine to form the foundation of what our next steps will be.

The possibilities are endless, it would be pointless to list them here. So I am going to share my thoughts, after four years of experience, about what could be the most proactive approach to dealing with something that will be your unwanted guest for the foreseeable future.

Maybe I should start by suggesting some things that might not be in your best interest. Of the things I will cite some...um...most of them are counterproductive behaviors that someone who may or may not be writing this piece did indeed engage in.

• Don’t pretend it will go away on its own.
• Don’t allow your family to ignore it as well.
• Don’t ‘forget’ to take your medicine all the time because it is PREPOSTEROUS that you, someone who had babies at home, have a chronic illness.
• Don’t isolate yourself.
• Don’t make hasty decisions.
• Don’t think your life is over.
• Don’t settle. For anything. Healthcare, information, assistance, anything.

So here are things that could be helpful.

Find out all you can about the illness, whether it has happened to you or a loved one. It is such a cliché, but knowledge is power. Knowing about how the disease works might make you feel less scared. Unfortunately, it may also make you feel a thousand times worse, so make sure you reach out. Talk to someone who will listen without getting too emotional as well, such as a clergyperson or therapist. Someone who can maintain perspective can really help you recover your's as well.

Find a doctor you like and trust, even if it means changing several times. You deserve the best care available. You need someone who will listen and be respectful, someone who will be a partner, not a dictator.

Consider all your treatment options and what impact they will have on your life. Don’t go with the first one offered because it is your doctor’s favorite.

Make sure your family really understands what MS is and what it does to you. Ask for help. Life has changed, you all have to find new roles. Again, if that process is hitting bumps in the road, consider a third party to help coach you along.

If it appeals to you, look for support groups. I am not a big joiner. But I have a group of online friends that I could not survive without. We are all similar in our irreverence, sense of humor and intolerance for platitudes. But that isn’t everyone’s cup of tea. You know yourself better than anyone. If you need a warm fuzzy group get out there and find one.

Keep doing the things you love as much as you can. This is something I am still working on. I am a museum fanatic, but can’t manage the walking anymore. And I am so reluctant to use a wheelchair. I might try a walker as an interim step, but still have to steel myself to that purchase. Do yourself a favor and just go for it. Although even as I say that, I recognize some of us need longer to process things than others (decades in my case). So if you need to take your time, do that. Just don’t close the doors to things that bring you joy.

Involve your family. Make sure they understand how sick you are. This is a huge mistake I have made, still keeping that Superwoman persona going. To my great detriment. Because my children appear to have a really hard time acknowledging I need A LOT of assistance. That is my fault entirely for allowing the myth to persist.

One thing that I have also found makes me feel empowered is the annual MS fundraising walk. I will be honest up front, the MS Society is not my favorite organization. For one thing, it has MS in its name. Instant dislike. For another, if it was a person, it would be so freaking perky. I hate perky. And I, along with my fellow MS cranks, find the current ad campaign embarrassing. “Join the Movement”?!?! To some of us with adolescent minds and a bent for scatological humor, ‘movement’ only means one thing. For others of us who were around in the sixties, it is like, come on, is that the best you could do!?!

However, A BIG HOWEVER, the MS Society does really, really good work. Not all the local chapters are the same. For example the chapters in Connecticut and St. Louis earned the highest rating of four stars from Charity Navigator (a GREAT source of information about charities), but the one in Charlotte only has one star. It depends on their local administration. I am so fortunate to live in the northeast, where most of the chapters are powerhouses of assistance. They provide information, aid, classes, support, encouragement and fundraising.

The National MS Society has a good ratio of programs funded to administrative costs. More than eighty five percent of all dollars raised goes to help people with MS. Some of the local chapters do even better. Some examples for comparison: the American Cancer Society uses only 68.4%, the National Organization on Disability, 64.7% and the American Foundation for the Blind, 69.2%.

The MS Walk takes place nationwide and in our area it is on the third Sunday in April. When I take part, I feel as though I am doing something proactive for all of us with MS. Some of the money goes directly for programs, but much goes to research to find a cure. The research done over the past years has lead to more and more and more treatment advances, so a cure does not seem impossible.

Plus, the walk can be fun. My team grows every year, and here is my shameless plug: I would LOVE it if you would join Team Cooper this year on the MS Walk. There is no minimum to raise, no minimum to walk. It is a great way to get together with friends and raise money for a good cause.

This link takes you to my personal page at the MS Society website. You can register for our team or make a donation.

Marie's MS Walk Page

Tomorrow I will do my final MS post for this week. I will share what people with MS would really like others to know about having this disease.

Another Thing That Happened While I Was Broken

Team Cooper did the Belmar MS Walk and we raised over $3000! The Walk was 6 days after my surgery and so I power-chaired it. That was kind of a bummer because I hate feeling like a crippled person. Even if I am a crippled person.

But on the plus side, the chair enabled me to keep up with my team and enjoy their company instead of what I usually do, which is sit on a bench twiddling my thumbs waiting for them to get back.

It was a nice day but the wind was whipping, so it did start to feel cold on the boardwalk after a while. But we had a great time!!

Yay team!!!!