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Blog Title: What I Learn About Living From My Chronic Illness by Shelley Peterman Schwarz
Chronic illness changes every aspect of your life. In my blog, I reflect on my 30+ year journey living with primary progressive multiple sclerosis (MS). I share thoughts, insights, and lessons learned that hopefully will help you or someone you know. - Shelley
By Shelley Peterman Schwarz on Monday, January 28, 2013

Wisconsin State Journal newspaper logoI got it!  I am so excited!  Last month, I learned that I was awarded one of the 4 Ethel Allen Adaptive Ski Program Scholarships offered by the Madison West Kiwanis. The scholarship gives people with disabilities the opportunity to take part in the winter sports program offered by the Adaptive Sports Association (ASA), an organization that has been providing skiing, snowboarding and a variety of "sit-ski" instruction to people with disabilities for 25 years.

Shelley sit-skiing

To apply for the scholarship, I had to fill out an application and be available for an in-person interview with the Madison West Kiwanis selection committee.



During the interview, we talked about the realities of this opportunity – the stress of air travel, the intense ski program instruction, and the risks/challenges of being a person with a disability. Yes, there would be experienced ski professionals to help and instruct me, but what about the “unexpected” and my ability to handle the ups and downs inherent in an adventure of this kind?  Could I give them an example that might address these concerns?  YOU BET I COULD!  And, this is one of the stories I told them.

By Shelley Peterman Schwarz on Tuesday, January 22, 2013

Shelley on a Harley motorcycleI have  gotten around in a cute and DEPENDABLE Amigo scooter for more that 25 years.  (I love my Amigo!)  So, I thought staging a picture of me on a Harley Davidson "Hog," decked out in full regalia would be a cute idea for the opening of a recent keynote speech I gave.


 (That's really me)


Here's how I opened the presentation as I motored up to the podium... 

By Shelley Peterman Schwarz on Monday, January 21, 2013
Wisconsin State Journal newspaper logoA couple of weeks ago, I received an email from my friend, Jodi. She wrote that she had slipped on the ice, taken a bad fall, and broken her leg. When I called to find out what happened, one of the first things she said was, “This has been a very humbling experience. I thought I understood what people with mobility issues go through because of my friendship with you, but I see now that I really had NO IDEA.” 


My mother who has been with me on every step of my 30+ year journey living with multiple sclerosis, expressed the same sentiment when she broke her ankle a few years ago. Often friends and family members say the same thing to me after they’ve had an illness, surgery, injury, or accident, especially if the situation required a period of recuperation or rehabilitation. They are surprised at how difficult and exhausting it can be to complete simple everyday activities, like making a cup of tea, getting out of bed, or fixing themselves something to eat.


It’s true. Only someone who

By Shelley Peterman Schwarz on Monday, January 07, 2013

Wisconsin State Journal newspaper logoThey say that, Friends are like pillars on your porch.  Sometimes they’re there to hold you up. Sometimes they’re there for you to lean on.  And, sometimes, it’s just enough to know they’re standing by.  I know that one of the reasons I’m able to live the life I do is because of my friends. The older I get the more I realize that friends often pop in and out of our lives over many decades.  Some of my friends are funny; some are creative; some are serious.  Most of us would be sad and lost without our groups of friends.  And, every once in a while, a friend will touch your heart in a very special and unexpected way, and you truly understand the wonderful depth that friends bring to your life..

By Shelley Peterman Schwarz on Thursday, January 03, 2013

Who needs an amusement park ride when Grandma Shelley is around?

 Grandma Shelley giving scooter rides

I love being an attraction when I'm with my grandchildren. Whether I'm at a birthday party, the park, or a family reunion, l love giving scooter rides.

By Shelley Peterman Schwarz on Wednesday, January 02, 2013

Wisconsin State Journal newspaper logoWhen I learned that there is actually a special week in January dedicated to the phrase, “Someday- we’ll- laugh- about- this,” I instantly knew the story I had to share with you in today's column. My story itself isn't very laughable, but in hindsight, it's perfect for this week. 


I am the first to admit that living with chronic health problems is often frustrating, embarrassing, and downright sad. And, trying to find humor in uncomfortable situations is often difficult. However, time and perspective have a way of helping one discover the lesson and the meaning in everyday challenges.


Take the first time I used my little Amigo™ (the friendly wheelchair), 3-wheeled scooter. I remember the day vividly, even though it was nearly 30 years ago.

By Shelley Peterman Schwarz on Friday, December 07, 2012

Stranger holding the door for Shelley 

If you see someone with a mobility device (cane, walker, wheelchair, etc.) struggling with a door or task, and you wish to offer to help, do so in a respectful way.  Rather than say, “Let me help you with that,” ASK, “Is there something I could do to be helpful?” Then remember to wait for the person to answer before you assume your assistance is wanted or needed.



For more tips on interacting with people who use mobility devices, ...

By Shelley Peterman Schwarz on Friday, November 23, 2012

SAIL logoThank you to Supporting Active Independent Living (SAIL) for these excellent "walking safety" tips


Keep your hands out of your pockets because it will make it easier to use your arms for balance.


If the sidewalk or parking lot is snow covered and/or slippery...

By Shelley Peterman Schwarz on Friday, November 16, 2012

Shelley in winter weather This time of year, weather gets unpredictable. For many parts of the country snow and ice, wind and torrential rains create barriers to someone with a disability getting out. Thankfully many services are available for people who are elderly or disabled that come to you so you do not have to go out.


Here are just a few:


  • Your Local Library - will answer questions and provide information over the phone and if you have a disability, many have volunteers that will deliver books and audio/video materials to your door. Contact your local library for details.
  • RSVP - If you are over 60 and you have trouble getting around, RSVP volunteers will provide rides to medical appointments and provide other services. This is a...

By Shelley Peterman Schwarz on Tuesday, November 13, 2012
National Multiple Sclerosis Society logoA few years ago, the National Multiple Sclerosis Society contacted me about doing a series of short videos for people living with Primary Progressive MS (PPMS), (my diagnosis.)


The videos are currently posted on YouTube.  In this video, I invite you into my home and share how I stay connected to my family and friends despite severe physical limitations. 

By Shelley Peterman Schwarz on Friday, November 02, 2012

Plastic seat covers 

Ask the salesperson at your car dealership or the attendant at the car repair center if they can order over-the-seat, plastic "bags/covers" that will fit over the upholstered fabric seats in my car.  The smooth, plastic surface will make it easier to slide into the car and to change position.

By Shelley Peterman Schwarz on Tuesday, October 16, 2012
Shelley riding a horseIt is easy to stay home when you have a chronic illness. I was a master at making excuses for not going out -­‐ it’s too hot, too cold, too far away, too much walking, too noisy, etc. My favorite was “no one will miss me.”


People who don’t have a chronic illness don’t realize what an effort it takes for someone with a chronic illness to go out. I'm lucky that my husband and care partner knows that if I stay in the house too long, I get sad and depressed so he pushes me a little.


But my husband isn’t always around to take me out. When I gave up driving,...
By Shelley Peterman Schwarz on Monday, September 24, 2012

Wisconsin State Journal logoOn the second and fourth Saturday's of every month, my Tips for Making Life Easier™ column appears in the Wisconsin State Journal newspaper.  The columns are combination of tips, strategies, products and AHA moments/discoveries that make life easier for people living with chronic illness and disabilities. I've been writing the column for 26 years and I've never posted them online before.  So, starting with Saturday's column, (September 22, 2012), I'll be posting each column on the Monday after it is in the newspaper.  As always, I'd love your feedback...


Dear Readers,


I get letters and emails all the time asking, “How do I…?” Where do I find…?”

By Shelley Peterman Schwarz on Friday, August 31, 2012

If shopping for clothes tires you out but you simply must go, ask a friend who wears the same size to come along. Have your friend try on the clothes you like, and if they fit your friend, you know they're likely to fit you. However, people have different coloring so colors that look good on your friend, may not look good on you...

                               Color Me Beautiful book cover

By Shelley Peterman Schwarz on Tuesday, July 17, 2012

With the excessively hot temperatures we're having in the Midwest, the focus of my monthly segment on WISC-TV, (the CBS affiliate in south central Wisconsin) was on creating "Your Emergency Backpack."


By Shelley Peterman Schwarz on Thursday, May 31, 2012

In case you haven’t noticed, the world is not flat and when you’re in a wheelchair, (my Amigo TravelMate) that can often be an issue.  




Watch how I get into the Magnolia restaurant in downtown Charleston, SC for dinner with the Benton Harbor boys and their wives.

By Shelley Peterman Schwarz on Thursday, May 24, 2012

When you have a chronic illness or disability, life is full of compromises, or as one of  my co-workers liked to say, “a constant cost-benefit analysis.” But it took me awhile to learn that.

When I was first diagnosed with MS, I wasn’t interested in compromise. I was angry, stubborn, and was just not going to give in to my chronic illness! I was not going to use a #!%#&!# wheelchair! I wasn’t going to be one of “those people!” Does that sound familiar? Whether it’s a wheelchair, cane, walker, or other assistive device, it’s not easy to accept help no matter how old you are...

By Shelley Peterman Schwarz on Friday, May 18, 2012
I haven't driven a car since September, 1985.  At first, it was actually a relief when I gave up driving because I felt unsafe behind the wheel. And, being responsible for transporting two young children, it seemed a no-brainer to stop driving.


However, the reality of giving up my driver’s license meant I had to rely on other people for everything-- going to the grocery store, carpooling, shopping, haircuts, doctors’ appointments, and errands of all sorts. That's a lot of trips! 




After 27 years, I've gotten used to not being able to drive. 




By Shelley Peterman Schwarz on Monday, May 14, 2012

When was the last time you got "carded?"

Last week, Dave and I went to see a movie.  He dropped me off at the door so I could purchase the tickets. When I asked the ticket taker how much that would be, he said $9 per ticket. Then, I asked if there was a discount for seniors. He replied that there was for people over 65. I told him my husband and I were over 65...

By Shelley Peterman Schwarz on Monday, May 07, 2012

Here I am with my mom, my Aunt Shirley, and my cousin "S" having lunch at a fancy restaurant, the Lake Park Bistro, in Milwaukee, Wisconsin.  We're all dressed up and I'm feeling joyful because we're all together.  (My cousin battles health conditions that make MS look like nothing at all.)


So when the food was delivered, "S" and I looked at each other and start laughing.  We ...


By Shelley Peterman Schwarz on Saturday, April 28, 2012

I remember years ago when our children were learning to use the potty. Every time we walked into a store, they would ask, "Do they got a potty here?"  And, off we would go to find it.

I find myself asking the same question; not because I have to use the facilities, but because I want to eye-ball the bathroom configuration.  I want to know that if I needed it, I could use it.

This is new for me because ...

By Shelley Peterman Schwarz on Wednesday, March 14, 2012

I'm off to a National MS Society event and decided to take the bus to get to Union Square Park.Using accessible public transportation is easier for me; I don't have to transfer (i.e. have someone lift me), out of my Amigo scooter and into a car or cab.  Take a look.

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