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Spinal Cord Injury Paralysis Resource Center

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Do Women Gain Weight After SCI?
(I'm not asking you, Bob!)

Saralee at home, using her cat and her shawl to hide excess baggage.

Merrily Lunsford/Cape Cod Times

Saralee at home, using her cat and her shawl to hide excess baggage.

By: Saralee Perel

Last month, my local newspaper ran a special feature that included a picture of me. Two days prior to the photographer coming to our home to take my picture, my husband, Bob, decided it was perfect timing to say, "You need to lose 20 pounds."

Now, before you gather en masse with buckets of water to throw on his head, let me just say this: Tell me the time so I can join you.

Bob really did mean well. He said, "I watch how hard it is for you to get around since your spinal cord injury. It would be so much easier if you had less weight to move. I'm just trying to help."

"There is not one woman on God's earth who wants this kind of help. Last month, you bought me a scale with digitally accurate readings for heaven's sake."

"You asked me to!"

"You should have known I didn't mean it!"

After a day of sulking, I said to Bob, "But you know I've started to do a lot of walking. That helps my stamina."

"I know. And that's great. But you have no idea what kind of exercises could help you with things like getting up from the floor, or your balance."

"What does that have to do with 20 pounds?"

He was smart enough to resist tying exercise in with weight loss. I know I sound terrible. But really. Bob wouldn't gain weight on an IV of Velveeta Cheese. I just love being married to someone who has Domino's Pizza before 911 on his cell phone speed dial.

I dearly love him, in spite of the fact that his favorite dining companion is Oscar Mayer. Do I sound resentful? You bet I am. He thinks of peanut butter as a seasoning.

If you're feeling sorry for Bob, I don't blame you. But try to picture what it's like living with someone who thinks he's limiting himself by only having pizza on days of the week that end in DAY.

When I was a practicing therapist, I would tell patients, "Instead of holding your anger inside, you must have a heart-to-heart talk with your dearly beloved."

So I e-mailed my dearly beloved friend, Liz, and told her what Bob said about the 20 pounds. She is Liz Callahan, who e-mailed me because she read a story I have on the Foundation's website. Since then, we've become the best of friends. Liz is connected to the Foundation via her company, Versa AccessWear. I know this sounds like I'm plugging her company. Just so you rest assured, I am. As she puts it, it's "an adaptive clothing line for women with limited mobility looking for function and fashion." She's on the Shop for a Cure page and donates a percentage of sales back to the Foundation.

Okay. Enough of the good stuff about her. The reality is she is as much of lunatic as I am. Her reply to Bob's comment was, "Who wants to hear that? That would send me right to the chocolate chip cookies." I took Liz's wise advice and polished off all the cookies in the house  . . .  slowly, in front of Bob.

"Sweetheart," he said. "That's not the answer."

By then, I was using a sharp steak knife to get to the bottom of the peanut butter jar. "Oh really? Let's hear it, expert. What's the answer?"

Noticing that I had put the cookie bag and the peanut butter away, but still had the knife in my hand, serrated edge facing outward, he said, "I'm not sure you're in the best frame of mind to discuss this," as he crept past me, while keeping his eyes on the knife.

Then I asked my friend, Anne, for her take. She said, "When I was in the hospital and I asked my husband how I looked, he said, carefully, ‘Um – you look like you're retaining water.'" Now, that's a beauty. Make sure all you men remember that one, then see if you get lucky that night, or ever again for that matter.

Later, I found Bob in his study having his late day snack of herbal tea and a Big Mac. Gingerly, he offered me a French fry. I glared at him. He said, "Would you rather I lie to you when you ask me a thousand times if you've gained weight?"

"Yes of course."

"But I know you'll feel better and fall less when you exercise in ways that will specifically help your SCI. And if exercising and losing 20 pounds helps you cut off a few inches from your stomach – "

I stopped him mid-sentence. "Bob if you bring this up again, I can guarantee you that while you're sleeping, I will find something that I will cut off a few inches from."

He looked scared.

Now, there was a treatment idea I implemented frequently when I was practicing. When partners were at a defensive impasse, I would ask them to say to each other, "How can we make this better?" And that is what Bob said to me.

I replied, "By figuring out how I'll not only look 20 pounds thinner in 2 days but also how I'll hide my double chin." This did, in fact, turn us around. We laughed together sharing crazy ideas.

And, knowing Bob had been right all along, I got in touch with Donna Lowich, an information specialist at the Foundation, and asked her if she could help me find exercises. Donna, a warm and wonderful person, arranged it so that a DVD would be sent to me that would show various exercises.

Bob's first idea for the photo shoot: "Say you've converted to Islam and wear a burka so the only parts of your body that show are your eyes."

Then I tried a pose where I rested my hand, which is tiny, under as much of chin #2 as it would cover. Bob said, "You look insane. Hold that pose and look in a mirror." I looked. What that did was to move all of the extra flesh to one side of my face.

"I know!" I said. "I'll hold our cat, Eddie, under my chin. (Now that nearly worked but Eddie moved when the photographer took the picture.) "And I'll place the other cats in strategic places like my stomach and my thighs."

I tore through my closet and found a shawl from my days in the 60's – not that I remember those days too well. "How about if I wear this, Bob? And have it casually tossed over my shoulder so that it hides chin #2?" And that is what I did.

Finally, the photographer arrived and we got my picture-taking over with. When she left, I sat on Bob's lap and gave him a kiss. "I'm sorry," I said. "I know you told me about the 20 pounds because you love me."

He kissed me back. "Of course I love you. And you know what? Those extra pounds actually add character to your face."

I paused. "You didn't really say that, Bob. Did you?" He started to squirm. Then he added, "Sweetheart, I love you no matter what you look like."

Readers? Start filling those buckets of water. I'll meet you on our front step.

Versa Access WearDesigner Liz Callahan has bridged the adaptive apparel gap with fashion and style. Versa AccessWear merges fashion-forward design with construction elements suited for women with limited physical mobility. Versa AccessWear addresses the needs of women at work and at play! Basic construction elements include ¾ dolman sleeve, Velcro® and zipper closures, stretch and comfort fabrics, and design silhouettes suited to various stages of physical disability. Versa AccessWear will donate 10% of the purchase price from all tee shirts and hand painted scarves and 5% of the purchase price from all other clothing to the Reeve Foundation.

A Reeve Foundation Fact Sheet on Aquatic Therapy (PDF)

A Reeve Foundation Fact Sheet on Nutrition and Weight (PDF)

A Reeve Foundation Fact Sheet on Fitness and Exercise (PDF)

A Reeve Foundation Fact Sheet on FES Treadmill Information Sheet (PDF)

A Reeve Foundation Fact Sheet on FES Treadmill Information Sheet (PDF)

A Reeve Foundation Fact Sheet on Umbilical Cord Blood Banking (PDF)

Aquaticnet.comTherapists. Instructors. Managers. To all in the Aquatics industry. This is your single online clearinghouse of aquatic therapy and fitness information. Why re-create the (aquatic therapy) wheel? We are The Aquatic Therapy Command Center.

Craig Hospital: SCI Health and WellnessWith funding from the US Department of Education's National Institute on Disability & Rehabilitation Research, has developed educational materials to help people with spinal cord injuries live in the community maintain their health. Topics include skin care, exercise, heart disease, weight control, alcohol abuse and conditions related to the aging body. Use the link above and click on SCI Health and Wellness.

Centers for Disease Control and Prevention (CDC)Features numerous articles and resources on fitness, nutrition and healthy living.

Center for Research on Women with Disabilities (CROWD)Dept of Physical Medicine and Rehab Services at Baylor College of Medicine.

Clinical Trials: Ambulation ProgramsList of ambulation programs currently seeking volunteers.

Clinical Trials: Locomotor (treadmill) TrainingList of trials involving locomotor (treadmill) training.

Inclusive Fitness CoalitionAddresses the policy, environmental and societal issues associated with the lack of access to physical activity among people with disabilities.

ILRU: RRTC on SCI: Exercise InformationThe ILRU (Independent Living Research Utilization) program is a national center for information, training, research, and technical assistance in independent living. Its goal is to expand the body of knowledge in independent living and to improve utilization of results of research programs and demonstration projects in this field. It is a program of TIRR (The Institute for Rehabilitation and Research), a nationally recognized medical rehabilitation facility for persons with disabilities.

High Hopes Head Injury ProgramThe High Hopes Head Injury Program was started in 1975, as a result of tough hard work and need of several families. This one-of-a-kind non-profit charitable organization was dedicated to the rehabilitation and retraining of their loved ones who had been devastated by traumatic head injuries.

Lokomat at Sister KennyLokomat® is a robot-assisted treadmill that supports a patient in an upright position while moving the legs through a normal walking pattern – even if a patient is unable to move his or her legs independently.

Mobile WomenArticles, resources, online forum for women with disabilities especially wheelchair users.

Lokomat Program at Rehabilitation Institute of ChicagoThe Rehabilitation Institute of Chicago (RIC) provides robot-assisted walking therapy using the Lokomat® to help people improve their ability to walk after disability caused by brain and spinal cord injuries, stroke or neurological and orthopedic conditions.

National Rehabilitation Information Center for Independence (NARIC)NARIC offers a range of services, from quick information and referral to extensive database searches of the latest disability and rehabilitation research. They also offer a number of publications, including directories, guides and statistical reports.

The National Center on Physical Activity and Disability (NCPAD)Resources promoting physical activity for people, and for health, fitness and exercise professionals.

The President’s Council on Physical Fitness and SportsInformation on making exercise an important part of your life

RT 300 FES BikeRTI designs and markets innovative electrical stimulation ergometers to help people with a neurological impairment achieve their full potential.

Reeve Foundation NeuroRecovery Network (NRN)The Reeve Foundation NRN is a perfect example of basic science being translated to the clinic and changing lives. Funded by the Reeve Foundation through a cooperative agreement with the Centers for Disease Control and Prevention, it is a network of cutting-edge rehabilitation centers whose staffs have been trained in intensive activity-based treatments.

Sprint AquaticsOver the years Rothhammer International, commonly referred to as Sprint Aquatics, has been designing and patenting products that continue to revolutionize the aquatic industry. As the current owner, Laurel Maas's primary goal for Sprint Rothhammer was and continues to be creating products that meet the needs of those who use the pool as a form of physical therapy, training, and recreation.

The Uppertone SystemIntroduced in 1990 by a C4-C5 quadriplegic, the Uppertone System allows people with C4-C5 paralysis and below to do upper body exercises necessary for rehabilitation and maintenance, without assistance.

Paralysis Resource Center The Reeve Foundation Paralysis Resource Center Information Specialists are reachable business weekdays, Monday through Friday, toll-free at 800-539-7309 from 9:00 am to 5:00 pm ET. You may also schedule a call or send a message online.

Reeve Foundation Online Paralysis Community Connecting people living with paralysis, families, friends and caregivers so we can share support, experience, knowledge, and hope.

Quality of Life Grants DatabaseFind resources within the PRC Quality of Life Grants Database. Search by Zip Code, State or an Entire Category.

Library Books and VideosFind resources within the PRC library catalog.

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The Reeve Foundation Paralysis Resource Center Information Specialists are reachable business weekdays, Monday through Friday, toll-free at 800-539-7309 from 9:00 am to 5:00 pm Eastern U.S. Time. International callers use 973-467-8270. You may also schedule a call or send a message online.

This project was supported, in part by grant number 90PR3001, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy.