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Travel isn’t always possible

Regarding your cover “Globe trotting” and related story (Fall 2017), once again those with severe disability feel left out/ignored.

The title should read: “With lots of planning, MANY people with multiple sclerosis can travel.” Forget the “anywhere in the world” part, too.

As a 24/7 caregiver for my husband, air travel is just not possible. And even road trips involve enough equipment to stock a nursing home. He is wheelchair-bound, and you don’t just take power wheelchairs anywhere. Transportation alone is a huge roadblock.

Using portable chairs is no option as they are unsafe when performing one-person transfers of someone with no ability to walk. We occasionally take small road trips, but even with our own wheelchair van and much research, it usually ends up being a trial and lots of work.

I realize you are speaking to those recently diagnosed or with relapsing-remitting MS, but again, to those who have struggled for decades and have primary progressive MS, most of these articles are only depressing.

On the other hand, I found the article “No shame” (Fall 2017), specifically Lisa Kemppainen’s story, much more realistic. Dealing with a pooping-your-pants incident is far more likely than traveling the world for us. Thank you, Lisa, for putting yourself out there and talking about real-life issues.

Maureen McKinney, Washington

Oh, the places we’ve gone
I really enjoyed your story about traveling with MS, “Globe trotting.” I have traveled a lot since I was diagnosed in 2010. I use a cane outside the house and bring it, with good results of preferential treatment at sites and shops. My partner and I also love to take cruises, and for land vacations I always bring my handicap parking tag, as it appears to be accepted everywhere. I have cork boards to house my collection of pins that I accumulated mostly since my diagnosis. I love looking at them and remembering the places we went! Thank you for publishing such an interesting and inspiring magazine.

Roos Dijstelbergen-Cecil, New Jersey

Appreciating the help

Photo courtesy of Mike Knight

I was very moved by Mike Knight’s poignant piece on accepting help, “Help wanted” (Fall 2017). Doing so is sometimes difficult for those of us with MS, at least initially.

I’ve had MS for many years and manage quite well. My right leg is affected so that I use a cane. I can’t walk long distances.

It used to annoy me when folks wanted to help, some to the extent of jumping out of my way and apologizing when they saw the cane. I wanted to growl, “It’s not your fault.” Gradually, I came to appreciate the help offered, whether it was carrying a food tray or getting the car so I didn’t have to walk far.

Now, I will freely ask. It is indeed part of the social contract to offer and receive help. It makes those who help and those who receive the help feel connected. I realized that when I “got off” my attitude about it. Thanks to Mike for writing this lovely article. It’s a keeper.

Barbara Doughty, Maine

People who truly care
I was diagnosed with relapsing-remitting MS in February 2006 at the age of 46, after 10 years of unresolved symptoms. MS has not been kind to me, as I am now in a progressive stage of the disease and in a wheelchair 95 percent of the time. After reading “No shame” (Fall 2017), I found it very ironic that what I have been experiencing over the past month is nothing to be ashamed of.

I have been using Vesicare for several years to control minor bladder problems. Then suddenly, I was having accidents again. A urinalysis test came back positive for a urinary tract infection. Even though I was put on antibiotics, the last week has been an embarrassing nightmare.

Having coffee with friends after church one morning, I had a sudden urge to “go” and knew I would never make it to the restroom in time. My husband loaded me into the car, wet pants and all. A few days later, I had a good friend over for dinner and had an accident right before she arrived. I managed to get cleaned up but was too fatigued to put on new clothes, so I answered the door with a robe over my lap. I was very ashamed, but her compassion for me made me realize that the people who truly care about me will be understanding, regardless of what MS throws my way. Thank you so much for the article. It is always nice to know that I am not alone on this journey.

Marita Koster, Colorado

Not my fault
I want to thank Olivia Cole for her article “No shame.” I was diagnosed in 2008 and now I have to walk with a cane. Yes, I’m sometimes embarrassed by it, but reading Lisa Kemppainen’s and Ann Marie Johnson’s stories, I realize it’s not my fault. It’s just a Debbie Downer sometimes. Thank you for your uplifting comments and Peggy Crawford’s and Deborah Miller’s suggestions.

Marla Hopkins, Ohio

Limiting my life
I just read the article “No shame,” and for the first time, clearly saw how I have allowed my MS to limit my life. I don’t socialize. I avoid eye contact. I’ve seen the expressions of scorn on the faces of many people. Using public transportation, where I feel anonymous, is okay for now, but it’s getting more difficult for me. I’d rather avoid contact with others than to deal with their reactions.

I’d never used the word “shame” to identify how I felt; after reading this article, it’s evident to me. I have no idea of how to handle the shame I feel, other than to become even more isolated. What I know for sure is this: living in shame is not living at all.

Beverly Hutchins, New York

Comics, art and travel
After reading this great article “Fighting a supervillain” (Fall 2017) and enjoying the short comic strip, I would like to see Andy Olsen create a comic book based on MS for kids who have MS. A great way to reach this group!

I also was very moved by Ryan Moffett’s artistry in “This is me.” Yes, life goes on with MS! Uplifting.

My husband and I have always explored, whether it be in our state or country. “Globe trotting” had so many great ideas on prep, Plan B and so much more. I can’t wait to utilize what I learned. Good job!

Lyn Pollock, Pennsylvania
Winter 2017-18
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