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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, March 23, 2014

Wisconsin State Journal newspaper logoWhen my husband Dave retired last June after working for the State of Wisconsin for 42 years, we looked forward to spending more time together enjoying all that our wonderful community has to offer.  We had no idea how this year’s severe winter weather was going to restrict our lives.  Even as hardy mid-westerners, we found ourselves counting the days until our 2-week Caribbean cruise in February.  For the past 20 winters, we’ve been “cruising the Caribbean” because it’s always warm (78°-85°), the ships are wonderfully accessible, and the staff is so helpful that my husband Dave, (my main helper), can truly get a vacation.

 

When you have a disability, traveling anywhere always requires more thought and planning, and even then, there are unexpected glitches.  However, that doesn’t  rarely happens on a cruise ship.  From the moment we board the ship, we are greeted by friendly staff who offer us champagne and it sets the perfect tone - prepare to be pampered and taken care of.

 

For two aging Baby Boomers, one with a severe disability, a cruise is the ultimate vacation. Dave unpacks once and every day the scenery changes.  Our floating city has everything in one place; our hotel, fabulous restaurants, nightly world-class entertainment, live music to satisfy everyone’s taste, first run movies, classes, lectures, games, and demonstrations of all types, (ice sculpturing, napkin folding, chocolate carving, glass blowing, etc.)

 

The fitness center, Zumba by the pool, the walking track, and the indoor and outdoor pools offer opportunities to get up and move. On the February cruise, I used the pool lift to get into and out of the pool every day.  It was beyond fabulous!  (I was happy I could exercise because I had come on the ship as a passenger and I didn’t want to leave as cargo!) Dave enjoyed the casino and my mom who came with us enjoyed the spa treatments.

 

I greatly appreciated my large handicapped cabin because I could rest when I wanted to and the accessible bathroom meant I could be independent as well.  On this cruise, the credit-card cabin key automatically opened our cabin door and a wall switch inside the cabin opened the door for me when I wanted to go out.

 

Automatic doors were everywhere so I could visit the library, play bridge in the game room, tour the ship’s galley, or take a computer lesson without a companion.

 

Although there were about 3,000 passengers on our ship this year, it never felt crowded.  The cruise lines have perfected “crowd control.” And, no matter which food station I approached, a smiling staff member carried my plate and silverware as well as served my food selections in the quantity I requested. One day I asked my friendly server his name. He responded, “You can call me Honey.”

 

Next time I’ll share more cruise information about additional amenities specifically for people living with chronic illnesses and age-related limitations.

 

In the meantime, speaking of cruises, I want to share with you that this year Dave and I are planning our first cruise to Alaska, August 15-22, 2014, aboard the Celebrity Millennium,  and I invite you to join me on this escorted trip offered by Middleton Travel.  Visit Shelley@MakingLifeEasier.com or Middleton Travel, (608-831-4664) for more information.

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 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 Wednesday, December 05, 2012

Ever since I was diagnosed with multiple sclerosis, family, friends, and healthcare professionals have been telling me how important it is to exercise.  Sometimes it actually felt like people were nagging me and I often thought, "You have no idea how exhausted I get just getting dressed. Even the thought of exercising, exhausts me!  I can't imagine any positive effect from exercising because I'd be in bed all the time trying to recover."

 

But times have changed and I am doing better. I have put exercise back into my daily routine. Sometimes "my exercising" is just picking up and doing things around the house. Bending, reaching, grasping, lifting, and stretching as I go through my day are "my exercises..." 

By Shelley Peterman Schwarz on Thursday, November 29, 2012

Shelley and her mom

My mother recently broke her ankle in a fall. As a very active and independent eighty-something, she’s not used to staying home and taking life in the slow lane. Her busy life has been interrupted and she said to me, “Everything (getting dressed, straightening up the house, making meals, etc.) takes so much longer.  After watching you cope with your disabilities (as a result of multiple sclerosis), I thought I knew what you were going through. But, I really had NO IDEA!”

 

I think it’s true, unless you walk in someone else’s shoes you can’t know what they’re going through.  So my holiday wish for you is that you are patient with yourself and with others; that you take time to appreciate the gifts and talents you do have, and that you be more accepting and understanding of our individual differences.  

 

By Shelley Peterman Schwarz on Monday, November 26, 2012

Wisconsin State Journal logoWell, I did it!  I turned in my application for the Madison West Kiwanis Club, Adaptive Ski Association’s (ASA) Scholarship, in hopes that I will be one of four Madison area residents with disabilities selected to participate in the program. This unique opportunity has been provided since 2Sit-ski photo006, when  Ethel Allen, a well-known scientist, University of Wisconsin alumna, and former faculty member, passed away at 98.  A provision in her estate called for a distribution of funds to the Madison West Kiwanis Club to be used exclusively for ASA scholarships.  The scholarship includes round-trip airfare from Madison to Durango, Colorado, five nights lodging in the Durango hotel, meals, four days of ski instruction, lift tickets, local transportation, and all necessary ski equipment.  For people like me who use wheelchairs and are unable to walk, we will learn to "sit ski." 

 

I don't know if I will be lucky enough to receive one of the scholarships, but I can tell you that it has gotten me to dream again. It's easy when you have a disability to focus on what you can't do and what things you are missing out on in life. But...

By Shelley Peterman Schwarz on Monday, November 19, 2012

Wisconsin State Journal logoWhen you think of a family caregiver, who do you think of? Is it the neighbor with a spouse in a wheelchair caring for their every need? How about the daughter who takes off work to take her mother with dementia to doctor’s appointments? Is it a child or perhaps a grandchild who moves in with a relative to help with grocery shopping, meals, or paying the bills on time? Family care giving is this and much, much more.

 

Shelley being liftedIf you are a family caregiver, you know this. But does anyone else? Do your friends, neighbors, or even other family members recognize the extent to which you are caring for mom, dad, or a spouse who may look perfectly normal but has early onset Alzheimer’s? Does your doctor know the toll that caring for a loved one has on you, whether directly through stress, or indirectly because you fear that absences, fatigue, or distraction might jeopardize your employment?

 

According to preliminary research from the Sloan Center on Aging & Work...

By Shelley Peterman Schwarz on Wednesday, November 14, 2012

Two young children "Trick or Treating"On Halloween night, my husband and I took turns answering the door and dropping candy bars in the containers the little ones were carrying. When it was my turn at the door, one inquisitive little 3-year-old blurted out, "Why are you in that thing?" She was, of course, referring to my wonderful, little 3-wheeled Amigo™ scooter.

 

I am used to children and their innocent questions about my "means of transportation." I quickly answered, "I use this wheelchair because my legs aren't strong and I can't walk.  The scooter wheelchair helps me get around."

 

Shelley & her granddaughter on her lap

 The little girl was satisfied with my answer and her father, who was standing in the background, looked very relieved.  I'm glad I had a minute to answer the little girl.  I don't always, because parents...


By Shelley Peterman Schwarz on Tuesday, November 06, 2012

Shelley "sit skiing"Well, I did it!  Last Friday, I turned in my application for the Madison West Kiwanis Adaptive Ski Association’s (ASA) Scholarship, in hopes that I will be one of four Madison area residents with disabilities selected to participate in the program. This unique opportunity has been provided since 2006, when  Ethel Allen, a well-known scientist, University of Wisconsin alumna, and former faculty member, passed away at 98.  A provision in her estate called for a distribution of funds to the Madison West Kiwanis Club to be used exclusively for ASA scholarships. 

 

The scholarship includes round-trip airfare from Madison to Durango, Colorado, five nights lodging in the Durango hotel, meals, four days of ski instruction, lift tickets, local transportation, and all necessary ski equipment.  For people like me who use wheelchairs and are unable to walk, we will learn to "sit ski."

 "Sit ski" photo

I don't know if I will be lucky enough to receive one of the scholarships, but I can tell you that it has gotten me to dream again...

By Shelley Peterman Schwarz on Monday, October 15, 2012

Wisonsin State Journal LogoOctober means Fire Prevention week.  Since eighty percent of fires occur in the home, it is important for families to discuss what to do in case of a fire, especially if your home includes someone with special needs.

 

First, have a plan. Have a designated meeting place outside the house and emphasize that leaving the house to escape the fire does not mean you are abandoning your siblings or pets.  

 

Stress the importance of never going back inside once you are out.  Call the fire department after you are safely outside: never call from inside a burning home.

 

Show children...
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 Monday, July 30, 2012

  I love going to the Apple store for the One to One classes whenever I can.  I either go with a friend who has her own class or project to work on or Dave drops me off and then goes on a bike ride. (One of the secrets to my happy marriage is giving each other space to pursue outside interests. I can't go biking and Dave has no interest in spending more time on a computer.  (Work is enough.)


My current interest is learning how to edit movies. Yes, I often need more than one session to learn...

By Shelley Peterman Schwarz on Thursday, June 07, 2012

Tonight I spoke with the husband of one of my oldest childhood friends. She wasn't home so I took the opportunity to ask him how he was doing. A physician, (M.) had just retired because of the effects of a progressively disabling form of muscular dystrophy.  It was not the way he wanted to end his career, especially since he had just been voted by his peers as one of the best doctors in his community.

 

But M. had fallen a few times in the hospital and ...

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 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.

By Shelley Peterman Schwarz on Friday, March 02, 2012

 

I got very little sleep last night because today I had an appointment with the "seating specialist," a physical therapist with special training in seating and positioning.

 

For years now, physical therapists and wheelchair seating specialists have recommended that I use an electric wheelchair. Given my level of disability, (no use of my legs and limited use of my hands and arms), I should have been using an electric wheelchair years ago.

 

But, I have resisted their advice because I'm a "scooter gal." I love my little Amigo® three-wheeled scooter..

By Shelley Peterman Schwarz on Friday, February 03, 2012

What a red-letter today was!  Using all the skills I have been practicing for months and while I was totally alone in the house, I transferred from my 3-wheeled Amigo™ into bed by myself!!!!  What a feat!!!

 

Not only was I able to get myself in bed, but I was able to

By Shelley Peterman Schwarz on Sunday, January 08, 2012

This past summer, Dave and I had planned to attend the Abilities Expo at the Schaumburg (Chicago area), Convention Center. It’s an annual event and a veritable candy store of products and services for people living with disabilities. 

   Dave and I wanted to check out the newest technology in car/van wheelchair lifts. Our full-sized Ford is nearly 9 years old and we thought the Expo would be a good place to see the most up-to-date lift-equipped vehicle options. Unfortunately, that was ...

By Shelley Peterman Schwarz on Saturday, March 19, 2011
New book for people with Primary Progressive Multiple Sclerosis (PPMS) Primary Progressive Multiple Sclerosis: What you need to know is a new resource book with accompanying DVD, that answers questions about what it REALLY means to live with PPMS.
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