Category Archives: Guest Posts

Through An Intern’s Eyes: Meet Taryn

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My name is Taryn Spiegel and I’m a senior in Nursing from University of Maryland College Park. I came across SPINALpedia through my family friend, Ali, who told me this unbelievable story about one of her friends from high school who had been in an accident on a family vacation at the beach.

After hearing Josh’s inspirational story, how he started this foundation and his positive outlook on life, I knew that this is where I wanted to do my internship for my final semester of college.

Starting my internship with SPINALpedia has already been a blessing and it has just begun. Before this opportunity, my knowledge of spinal cord injuries was a bare minimum. I was unaware of the various types of injuries and the types of accidents that could potentially cause them. I was even unaware of the amount of individuals affected by spinal cord injuries. These statistics have been eye opening.

Aside from the basic facts, prior to this internship I had no idea how much physical potential there was for those with injuries as well. Spending hours on the SPINALpedia website has given me the opportunity to watch and read success stories, sports and athletics people can participate in after being injured, adjusting to life after the injury and basic day-to-day activities that people with SCI engage in.

While I’m almost embarrassed to say this, I also didn’t know how many spinal cord injury treatments existed.  Stem cell research is a big area that has helped develop a number of treatments for spinal cord injuries. Matthew Reeve, the son of the late Christopher Reeve, has also been busy promoting the progress made in an exciting epidural stimulation treatment funded by the Christopher Reeve Foundation that restores movement to people’s legs and ankles (read more).

Matthew has  been raising funds for this research. He hopes to raise 15 million dollars for the next 36 patients interested in this treatment. His ultimate goal is to eventually accelerate the research and give the treatment to anyone that needs it. (watch)

There has also been new generations of exoskeletons for mobility and training in medical recovery. Scientists have been teaching spinal cord injured individuals how to move limbs by thought, merely my implanting a chip called a brain computer interface. Fascinating stuff.

During the initial “the SCI boot camp process” at SPINALpedia, I learned a lot of interesting information about spinal cord injuries. One of my favorite videos I watched was about a peer mentor group up in British Columbia (watch). It’s inspiring to see someone learn from someone else who has been in their shoes and has gone through what they’re dealing with.

Throughout this semester, I hope to learn more about the spinal cord injury community as a whole and about individual members through SPINAlpedia’ s many channels. It would mean so much if I could contribute in some way to better a person’s life with the spinal cord injury. I truly hope my experiences this semester encourage others to get involved with SPINAlpedia’s efforts.

Guest Post: Parenting with a Disability

This guest post on Parenting with a Disability comes from Alicia Reagan!

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As a little girl, I had so many baby dolls! I named them, changed them into their jammies at night, and played with them as much as I could. I couldn’t wait to grow up and have a bunch of real babies. This was an actual talking point with my husband before we married. I wanted to make sure that he loved the idea of a large family as much as I did. He did.

In March of 2009, I was 5 months pregnant with my 6th baby. I got very sick and was in a tremendous amount of pain. I lay down to take a nap and when I woke up, I was completely paralyzed. After much time and testing, I was diagnosed with Idiopathic Transverse Myelitis. Paralysis, and a life raising all of my children from a wheelchair, was NOT in my game plan.

After almost 5 years in my chair, and having a houseful of kids that range from toddler to teen, I have a few things I would like to say about parenting. There is much written about parenting a special needs child, but little written about being the parent with the special need. Here are some things that I have learned.

1.We are capable of being great parents!
I cannot tell you the times that people will be shocked to learn that as a paralyzed woman, I am capable of having children. Women in chairs can conceive and carry a baby like other women. Modern medicine can help couples where the man is disabled. Depending on your disability, you will definitely have to plan around your disability and your specific needs. Our disability is a factor in having children, but it is certainly not the deciding factor. If you want a family, go for it!

2. My children are not my aides.
I think this is important to remember. I see people look at my children with such pity at times and it really makes me want to scream! They are my kids. They do not suffer. They do not take care of me. We are a big ship to run….even before I became paralyzed! My children do their share of chores. I want them to know how to make their beds, clean their room, do laundry, cook, and take care of the yard. They did these things before my chair and they still do them. I love how my children love me and desire to help me out, but my children do not take care of me.

3. We can give kids what they need.
Typical parenting has many physical stereotypes. Commercials are full of dads throwing footballs, moms running the soccer car pool, hiking with your family….are you feeling all of the physical activity?I think one of the reasons that disabled parenting gets such a negative response is because we don’t necessarily fit the typical active parenting mold. I don’t think we have to be all that to give our children what they need.

I think that the most important thing that you can give children is not activity. It is love, attention, quality time, and focusing on their precious hearts. My kids love activity, and I get in on as much of it as I can, but realistically I cannot do what I used to do with them. Do you know what I have noticed though? I have a lot more time to just sit and listen to them. I have a lap that is always available for my little ones to climb up on. There is more time to watch cartoons with them on days I don’t feel as well. I have had more one on one time with my kids since I became paralyzed than I did before. Our relationship has become much better…not worse. Even with a teenager!

4. We will improve society.
As parents with disabilities, we are raising kids who will enter society with a heart for the disabled. What a gift that we wish many more had! My kids already find the special need kids to be a friend too, and my older ones have already told me that they would have no issue at all with marrying someone with a disability. I love that!

5. Being a mom, helps me deal with my disability.
My kids are one of my greatest reasons to deal with the frustrations that can come with being paralyzed. They are watching me. They are learning, by my example, how to handle hardships in life. They are learning about attitude, confidence, acceptance, resolve, determination and happiness. Knowing they are watching me handle this disabled life makes me humbled to show them the right way. It is a wonderful reason to get up and get going in the morning.

Being a mom is a precious gift. I did not choose to become paralyzed, but if it had to happen, I sure am thankful that I am surrounded by my children. Life is beautiful…especially when you are a parent!

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