Thank you for having people in an article (“Get closer”) and on the cover (Summer 2016) who actually look like me! It’s hard to be 31 with MS and see most of the people in everything published look more like my mom than myself. I’m not only talking age, but also the fact that Kellen and Meghann Prouse have plugs in their ears and tattoos on their bodies. It helps me feel less alone in my journey when I can actually identify with someone in the article.
Danielle Perdue, Colorado
Editor’s note: We received many letters about the cover of the last issue. A few expressed displeasure, but most agreed with Danielle. Let us know your thoughts!
Relationships & MS
I am 31, and was diagnosed with MS in 2011. Since then, I have slowly been losing my abilities—currently some vision, my ability to walk and sexual desire/ability.
I read the article, “Get closer” by Aviva Patz (Summer 2016), and found it interesting, but the one question I have had for years and have never found the answer to is, how do people like myself, who have been diagnosed/affected by MS prior to getting into a relationship, find a partner? Every article I have read in Momentum focuses on how to cope with a partner who has developed MS and how to manage that relationship, but there aren’t any articles addressing the topic of finding a relationship when you’ve already been diagnosed and are living with MS.
What do other people with MS do to find a relationship? Are there networks for people with MS to find a relationship/partner? I would love to hear if there are any resources available for finding a relationship when diagnosed with MS.
Joe Swintek, Minnesota
Editor’s note: Thanks for raising an important point, Joe. We’d encourage you to post this question on MSconnection.org, and we also encourage readers to respond to Joe there with your own ideas. Finally, look for an upcoming article on this topic.
A matter of taste
Diagnosed at age 59, I was told everyone’s MS is different. I already knew that, as my father had MS and was just 46 when he had to retire in 1974. I have experienced the exact opposite of the diminished taste sensations in people with MS that were described in “Tastes like cardboard? Could be your MS” (Summer 2016). I love to cook, and have had to tone down the heat and spice in many recipes because I have become more sensitive to both. The same is true of my sense of smell. Again, not everyone’s MS is the same.
Joyce LaCrosse-Smith, Pennsylvania
Talk about nailing it right on the head! “Taking the next step” (Summer 2016) completely describes the emotional and physical issues that we deal with when coming to terms with an assistive device. I fought this for years, and honestly should have been using a walker years earlier. I only saw “an unpleasant rite of passage, offering physical proof that strength, endurance, balance or coordination is diminishing.” Now I am not limited anymore. I hope this article positively impacts someone else who is going through difficulties.
Marie Powers, Illinois
Thanks for your article, “Geared up” (Summer 2016). I was an avid bike enthusiast. I gave it up because I fell a few times. The big issue for me is balance, so it would make sense for a future article to talk about added wheels for a bike’s stability—kind of like training wheels for adults.
Rogelio Deibe, New Jersey
Tax credits for renovations
I read with interest “Getting real with real estate” (Summer 2016). As a district activist leader for the National MS Society and chairman of the Montgomery County (Maryland) Commission on People with Disabilities, we have been able to promote both new construction and renovations that include visitable and liveable features, through legislation that provides property tax credits for incorporation of such accessibility features.
When it comes to such renovations, every cost-saving element is important. For more information on the initiative, or for anyone interested in pursuing similar legislation in their jurisdictions, please visit Design for Life.
Seth Morgan, MD, FAAN, Maryland
Resilient and ready
I loved the article, “Reserves of resilience” (Summer 2016). I believe I have become resilient myself. I continue to work toward my career goals, which I started by modifying my previous job and taking a vocational course as a patient care technician. I want more, so I’m getting myself back to school this year and looking forward to my own resilience.
Martha Gonzalez, Florida
Bolder, not bigger
In response to Thomas Jacob’s discussion on the font size of Momentum, I am glad that someone else thought as I do about the readability of the magazine. Your response to him was in bold print and I could read that without difficulty. Perhaps with a larger font and bolder (darker) print, people with low vision would be able to enjoy your magazine more.
Phyllis Bright, California
This is my plea that you increase the font size of Momentum. I don’t care that there will be fewer articles. They are very difficult to read and I would love a larger font size.
Years ago, the magazine was easier for me to read. I think at that time it was in large print and it was wonderful. Then the font size got smaller. I wrote to you and complained. I got a letter back suggesting I read it online. That also doesn’t work for me. It is difficult for me to read things on the computer no matter how large I make the type. The back lighting on the computer makes things too bright.
I would also request that you use paper that is not glossy. That glares back at me and makes it difficult to read the printed words.
Margaret Shackelford, Pennsylvania
Editor’s note: These two letters are just a sampling of many emails we received in response to Thomas Jacob’s letter in the Summer edition of Momentum about the font size we use. Read more letters here, and be sure to weigh in on this issue in our reader survey. We value your feedback and will consider these responses as we work to continually improve Momentum.
Digital bonus: More letters from Momentum readers
Summer issue sizzled
Man! You guys sure put out a bunch of meaningful pages each issue, but the Summer 2016 issue hit the spot! I was diagnosed in 1996 at age 53, but didn’t have a major exacerbation until 2004, and since then have had several other issues like hydrocephalus, acoustic neuroma and a heart attack, so my body isn’t cooperating very well anymore.
First, your special section on relationships was wonderful. I finally bit the bullet and made an appointment with a gynecologist, because I’d like to try to make my sex life a bit more meaningful. I have never had any problem keeping my husband happy. He is the best caretaker ever and deserves anything I can do for him. Our relationship has always been very close, and as I get less physically able, he has never had any problem filling the gap. Intimacy is really his forte, and I appreciate that he has taught me so well in that department.
Second, I appreciated “Getting real with real estate.” We really lucked out in that the house we have lived in since 1978 is a level-entry home with a daylight basement. For the first 18 years, the laundry and TV were in the basement. Until 2004, I was able to access the laundry, using railings added in 2000 on both sides of the stairs. However, we also remodeled the whole bedroom-end of the house in 2000, and when we did we put a washer/dryer outlet in the new, larger bathroom. We then installed a stacked washer/dryer in 2004, as well as a TV in our larger bedroom. When my hydrocephalus manifested itself, and balance became a real issue, my husband installed grab rails and a seat in the shower, and grab rails on either side of the toilet.
Finally, there was the article on transitioning to a new mobility device, “Taking the next step.” This addressed the most exciting development in my world—the acquisition of a four-wheel scooter, plus a rack on the car to transport it. Until 2004, I was walking more than five miles a day. The dog had to be satisfied with a much shorter and slower walk for the last several years, however, until my legs finally gave out and my husband took over. Our dog (14 years old!) flips out over my new scooter now! When she sees it rolling up to the door, she acts like a puppy because she knows it means it’s time for her walk. Some days our “walk” makes it all the way around a block; other times, she peters out halfway to the corner, but at least she’s getting some exercise, and I get to see people I haven’t seen in years.
This turned out to be awfully long, but it is a testimony to the usefulness of Momentum. Not a page is unread. Thank you.
Sally Hill Hamel, Washington
Driving with both feet
I have one small comment to make about Sandy Larsen’s comment in “Staying behind the wheel” (Spring 2016). She mentioned difficulty when trying to move her foot from the brake pedal back to the accelerator. For the past 50 years or so, I have always braked with my left foot only, using my right foot just for the accelerator.
I maintain that using the left foot for braking is safer and faster than using the right foot for accelerating and also braking. I can keep my left foot near the brake pedal at all times, keeping the right foot just for using the accelerator. This helps immensely in parking lots, in slowing traffic and on hills.
Driver training instructors and police officers probably disagree, yet I welcome anyone to prove to me otherwise, which I do not believe can be done.
David Lewtas, Washington
Editor’s note: We checked with Patrick Baker, an occupational therapist and certified driver rehabilitation specialist at the Driving Evaluation and Rehabilitation Program at the Cleveland Clinic. He told us that “two-footed driving, when practiced and an automatic reflex, is more efficient by about a tenth of a second or greater, a potential big difference. It is harder for an experienced ‘one-footed’ driver to convert to ‘two- footed,’ but it can be done with patience, practice and attention to the road.” With regard to the legality of the practice, he advises checking with individual states.
Pediatric MS connection?
I read with great interest the article “New focus on pediatric MS” (Spring 2016). I am a 67-year-old woman who was diagnosed with relapsing-remitting MS when I was approximately 42 years old. I have been on Betaseron for 24 years now with good results.
The reason for my writing is to perhaps shed some additional light on childhood MS. I remember when I was in grade school always hiding out in the bathroom, so that I would not have to play outside in the cold. I was raised on Long Island and had bad winters, and I would complain of having “pins and needle” sensations. Of course, at the time, no one paid attention to the problem.
Also, the article mentions factors such as diet as a contributing risk. At a very young age, I was constantly having stomachaches and was taken to various specialists. Not until I was around age 30 did I find out that I was lactose intolerant. I mention all of this because research has been wondering about a connection to vitamin D. As a child, and more so as I got older, I was having extreme bouts of diarrhea, which I am sure left me depleted of many nutrients.
I hope this info may be of some help to Dr. Krupp and other researchers in this field. Momentum magazine has been very helpful, and I commend all of the people working on this publication.
Many thanks to you and all of the dedicated researchers out there.
Vivian Dennis, Virginia
More real estate tips
I have had progressive MS since 1974, and have migrated from use of a single cane to bilateral Canadian crutches, plus a foldable scooter at work, and finally to full-time use of a manual wheelchair at home and a three-wheeled scooter outside my home and for transfers from my ramp van—all within about 10 years’ time. I retired after 25 years from full-time work in the insurance industry. I made major modifications to my home early on and then made minor adjustments over time as my functionality changed.
Therefore, I read with interest Mr. Regan’s comments on baseline accessibility modifications in the article “Getting real with real estate” written by Vicky Uhland in the Summer issue of Momentum, and I believe I have a few observations worth considering:
- If necessary to move to a new home or apartment that is not on a single level, it should be serviced by an inside elevator. It should have garage parking wide enough for a van with a side or rear ramp.
- Use lever-type door openers on all interior and exterior home doors in anticipation of dexterity issues.
- On all doors, attach a drawer pull at the same height as the door handle but on the center panel nearest the door hinges. These can be used by people who use a crutch, walker, wheelchair or scooter to easily pull the door closed behind them. This reduces the need for automatic doors.
- Rewire so that operating switches for the stove fan and garbage disposal are more easily reached sitting down. Other switches can be relocated as well.
- Move the clothes washer and dryer to the first floor and switch to front-loading machines, if possible.
- Switch any towel bars in bathrooms to correctly mounted grab bars, and install extra bars leading to the shower or tub. Towel bars do not bear body weight if you lose your balance, and extras provide support when walking to the shower or tub. Also, install 12-inch grab bars perpendicular to the floor at standing height for support when entering the shower or tub, and on closet frames for support when dressing.
- Grab bars attaching to the rear of the toilet itself, in my experience, are flimsy, thin metal and do not support weight well. This is the same for the plastic raised toilet seats and handles that attach to a tub rim. They have a tendency of loosening and separating from the toilet or tub at inopportune times. They are not safe. Wall-to-floor right angle grab bars or those bars that attach to the wall behind the toilet and raise out of the way when not in use are, to me, much safer. Use these with the ADA-height toilet, and the unsafe temporary plastic risers will not be necessary.
- This same wall-to-floor grab bar, when installed next to the bed along with a trapeze either on a chain screwed into a strengthened ceiling joist over the bed or a portable one at the headboard, improve ability to get in, move around and get out of bed.
- The bench seat attached to the wall most times is too far from easy self-control of the water control and the handheld shower head, and it eliminates the possibility of a grab bar on the wall the bench is attached to. A long, separate shower bench with an attached back in my experience works best because it can be moved closer to the controls if necessary because of a person’s size and gives more stability for everyone.
I have considered these improvements invaluable to my longtime success with MS.