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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 Sunday, September 08, 2013

Wisconsin State Journal logoPeople often ask me the secret to how I've been able to live a happy life despite all the challenges I face because of my severe disability due to multiple sclerosis (MS.) Understanding that I work hard to keep a positive attitude and that some days are very difficult, I will share my "secrets."


First, I have to have hope for the future. Second, I have to be able to ask for and accept help, often from people I don't know and will never be able to repay. And, third, I have to surround myself with people who fill me up, make me laugh, and are there for me even when my best self is nowhere to be found.


I’ll explain the first two; the third will be the topic of another column.


Keeping hope alive for anyone who lives with a chronic and/or incurable illness is imperative. It's very difficult for someone to live without hope and that's why I’m passionate about the work of the National Multiple Sclerosis Society (NMSS). They represent hope for me and the millions of folks affected by this disease.


It seems like every day someone tells me about a sister, cousin, co-worker, or neighbor who has this incurable disease. Originally, thought to affect young adults between the ages of 20 and 40, multiple sclerosis (MS) is now being diagnosed in children as young as 2 and adults well over 40.


If you'd like to help me support research to STOP disease progression, RESTORE lost function and END MS forever, (Do I dare dream?), I invite you to attend the NMSS–Wisconsin Chapter’s upcoming On the Move event on September 26th at the Children’s Museum in Madison.  The event is part of the Society's NOW Campaign (No Opportunity Wasted), to raise $250 million by 2015, to fund all promising research.

The event will feature a sampling of Madison’s acclaimed restaurants; wine selected especially for the evening; an MS research update by Aaron Field, M.D., Ph.D. with music by members of his band, Fringe Field; simulation stations to help attendees understand the challenges MS presents, and a silent auction.


To attend or donate, please contact: Jordan Barclay at jordan.barclay@nmss.org or call 262-369-4404.


My second secret to staying positive is seeking the help that surrounds me and all it involves is my acceptance. One of our community jewels for people with disabilities and chronic illness is Access to Independence, the independent living center that provides information and referral, peer support, advocacy, and independent living skills training for people in Dane, Columbia, Green, and Dodge counties. 


In this column, I have often suggested borrowing items from their lending library so that you might “try before you buy." (For example: I borrowed a portable ramp from Access before I found the one I eventually purchased.) They have hundreds of devices, often not readily available in stores, to help you dress, cook, read, use the computer, take care of your personal needs, make your home safer and more accessible, and much, much more. Visit their new location at 3810 Milwaukee St.; Madison, WI 53714 to see for yourself.


This year the agency is celebrating its 35th Anniversary with a gala on September 26 at The Elk’s Lodge, (711 Jenifer Street; Madison, WI), with a silent auction, social hour, and dinner.


To attend this celebration or make a donation, please contact: Executive  Director, Dee Barnard at Access to Independence, (608-242-8484; 800-362-9877; 608-234-4484 (Videophone.)) or go to www.accesstoind.org


By Shelley Peterman Schwarz on Tuesday, December 18, 2012

Noon Show anchor

Today, I will make my monthly appearance on News 3 at Noon.  In south-central Wisconsin, you can watch the program on Channel 3, WISC-TV.  My "Tips for Making Life Easier" segment is on between 12:15 and 12:30 PM.   If you miss the telecast or are unable to get the show in your area, don't worry. 



Watch it now and you'll learn gift giving ideas that don't cost a dime but create priceless memories and experiences....

By Shelley Peterman Schwarz on Monday, December 17, 2012

Wisconsin State Journal logoI love this time of year and if you’re like me, you wish that spirit of giving that infuses us before the holidays could continue throughout the year. And, you know what? It can, by giving the best gift of all — a gift of your time to the community.

                                  Home Accessibility book cover

While I was researching resources for my newest book, Home Accessibility: 300 Tips for Making Life Easier, (2012), I visited a number of support organizations that provide assessment and assistance to people with a wide range of limitations/disabilities. I’ve been struck by how much is done with so little, yet how much more could be done if these organizations only had more resources, time, or dollars. 


By Shelley Peterman Schwarz on Tuesday, September 11, 2012

We’re “lucky” if we have a diagnosis and if our illness is one that people have heard of. It validates our complaints and symptoms and adds credibility to our limitations. Our friends and loved ones want to be helpful and lend their support. It’s our responsibility to share with people how they can help us.

                  Shelley with her mother and granddaughter

Many years ago, a girlfriend told me about her husband who had gone into the kitchen to get himself a drink. She mentioned to her husband that she, too, was thirsty. When her husband returned with his drink but not one for her, she snapped at him for not bringing her a drink.


So often, we expect people to read our minds, when we really have not been clear about what we want. We have to be

By Shelley Peterman Schwarz on Monday, August 06, 2012

There was a time, many years ago, when I was contemplating taking my life.  My progressive and progressing multiple sclerosis (MS) was unrelenting, and everyday my physical abilities deteriorated.  I was more than sad; I was despondent. I lived without hope and worried about the future every day and every dark night.  I feared if I waited too long, I wouldn’t have the strength or physical ability to end my life.

In my mind, I was a burden to my family, even though they were always there to lend assistance and bolster my sagging spirits.  But I hated the fact that I needed so much help dressing, grooming, taking care of my personal needs, even getting in and out of bed.  My husband, Dave, couldn’t even get a good night’s sleep because I’d wake him up in the middle of the night to help me readjust my sleeping position. ...

By Shelley Peterman Schwarz on Thursday, June 28, 2012

I love my caring and empathetic friend Carol.  But 20 years ago, she called me with news that really surprised me and made us both feel like she had carried “empathetic and caring friend” a little too far. After you hear the story, I'm pretty sure you'll agree with me.

Carol and I met 33 years ago, just a few months before my MS diagnosis.  She and her family moved into our neighborhood in the summer of 1979.  Her son, Dan, and my daughter, Jamie, were both 5 years old and they became instant friends. When the school year began and the kids were in the same class, our friendship got closer, as often happens with mothers of young children.

            Carol was one of those friends who...

By Shelley Peterman Schwarz on Wednesday, June 27, 2012

I recently connected with Larry Jenkins on LinkedIn who sent me this message, “You were an inspiration to us as my late wife battled (multiple sclerosis) MS.”


My heart hurt that another person has lost the battle with this debilitating disease.  Although MS is not a fatal disease in itself, it can weaken other bodily functions and leave it vulnerable to other fatal conditions.


I am so sorry for his loss and that’s why tomorrow...

By Shelley Peterman Schwarz on Thursday, May 17, 2012

Thank you to all the folks who contributed to the MS Walk this year.  I am always thrilled when I can contribute to the fundraising efforts of the National Multiple Sclerosis Society, the largest funder of MS research in the world.  This year our team, “Kids for a Cure,” raised $3,527.




It was quite a day… Our daughter, Jamie and her family were here and we were all pumped up for the Walk.  We dressed, packed up the treats, loaded the car, and were doing final bathroom visits, when

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