Rolling Under the Tuscan Sun

By Wendy Crawford

View from our villa

Last year I had, let's just say, a landmark birthday. I realized that life has been flying by too quickly so I decided to plan a trip to a place that I have always wanted to visit – Tuscany. I happen to come across a villa that looked as though it was wheelchair accessible and the planning started from there. I thought that organizing the trip would be simple so I decided to plan it myself. Stating it was a tremendous amount of work to coordinate is a huge understatement, and next time I think it would be wise to use a travel agent specialized in working with people with disabilities (see resources below).

There were five of us traveling, leaving from three different airports and two countries, so just getting the timing down so we would all arrive close together was no picnic. We decided to fly to Florence, Italy and spend three days there first, since it was only an hour away from the villa that I had discovered.The only problem was that we could not get a direct flight from the U.S. so we had to fly first to Frankfurt, Germany and then had a four-hour layover there before our one-hour flight to Florence. We made certain that we had seats in a row on the plane where the armrest raised up so I could lie across my husband and friend's laps to get a break from sitting. It was fairly comfortable, surprisingly for me, but probably not for them! (Note: My doctor recommended that I take a baby aspirin (81 mg) once per day for the five days prior to my flight and one on the day of the flight. Also, I wore compression stockings, which I don't usually wear but I think was very beneficial on the long flight, as my feet only had minimal swelling.)

The Intersection of Disability and Menopause

By Gemma Fletcher

Menopause is a difficult time for most women, but for women with disabilities, there's more to the story. The symptoms and problems that go along with this stage of life are compounded by the fact that some disabilities and chronic diseases are affected by menopause in unexpected ways.

Women and Menopause

The most well-known symptom is the hot flashes that most menopausal women experience, but there are many others: depression and other emotional disturbances, migraines, palpitations, insomnia, weight fluctuation, night sweats, dizziness, memory loss, and bladder and urinary problems.

For women with disabilities, there are additional problems to contend with. Depending on the nature of her disability, a woman may experience more severe bladder problems, lower tolerance to heat, poor circulation, and skin problems. For women with chronic diseases, menopause may lead to an accelerated progress of disease or a worsening of symptoms.

Soaring on Ice for Gold!

By Kara Aiello

Kelsey DiClaudio has her eye on the prize.  At 18 years of age, she is looking to make the Paralympic Games in 2018 and head to South Korea playing Sled Hockey.  A fast paced game that follows the same rules and speed as stand up hockey, Kelsey and her teammates participate in a full contact sport that is modified on sleds and is tailored to fit the specific athlete perfectly.  As Kelsey speeds through her game, she uses two hockey sticks with picks to get around on the ice. The motion she says is a lot like skiing and she loves how fast and physical it is and how free she feels when she’s on the ice. Playing since the age of 8, Kelsey did not realize how important this sport would become and finds beauty in it that most may miss when watching the game played.

Although born without any signs of living with a disability, Kelsey says that as a newborn doctors discovered that she had a tethered spinal cord which is a neurological disorder caused by tissue attachments that limit the movement of the spinal cord within the spinal column. She had her first back surgery as a newborn which was a tethered cord release.  But after that and four more back surgeries to follow, her spinal cord kept re-tethering and Kelsey became more paralyzed from the waist down as each surgery was had. In the summer of 2012, Kelsey had her final back surgery which was to diminish back pain. “I was able to walk short distances before the surgery, but afterwards, ended up losing my ability to walk and the pain was not diminished.” Kelsey would tell the doctors before that surgery, that as long as she was able to play sled hockey she would be OK.  She’d even sneak out of the hospital at times to go play hockey and says it was the best medicine for helping her to get better moving forward.

Pregnancy After Paralysis

The desire to be a mother is an impulse that begins in childhood for most women. But once a spinal cord injury occurs, many women assume having a baby is just not in the cards for them. They are concerned that their bodies can’t handle a pregnancy, or that they can’t be a good parent because they’re in a wheelchair. However, the truth is that women with SCI are able to carry babies to term, and to become incredible mothers.

A new fact sheet on pregnancy and SCI that was just published by the Model Systems Knowledge Translation Center (MSKTC) highlights these facts:

§  Having a spinal cord injury does not affect your ability to naturally become pregnant or to carry and deliver a baby. It’s easy for a woman with paralysis to become pregnant.

§  Women with all levels of injury have had children following an SCI.

§  Your injury will not impact your baby. Your baby will develop normally, as all babies do.

§  Mothers with paralysis report that the positive effects of parenting usually outweigh the perceived difficulties.

If you’re thinking about getting pregnant, advance planning and preparation will help prevent problems.  Consult your doctor to check out all drugs you take, because some medications are harmful to the fetus. It’s wise to get a full gynecological examination before you begin trying to get pregnant. Seek out an OB-GYN in your area who has had experience with mothers with SCI, and make sure your obstetrician consults with your rehab doctor on issues such as autonomic dysreflexia (AD), bowel and bladder management, pressure sores and how your injury will impact your pregnancy, labor and delivery. You also need a urology check-up beforehand, as the growing baby will put pressure on your bladder.

Most often, managing a pregnancy of a woman with SCI becomes a team effort among all her doctors and the members of her family. And once a baby is born, parenting becomes a team effort as well.

Reprinted with permission from FacingDisability.com