Posts Tagged ‘wheelchair’

Service Dog Partners Samantha and Ivy

August 8th, 2013 by Carrie, the Just Mildly Medicated gal

I am so happy to bring you a guest post from Samantha on her partnership with Ivy. We hope to help bring awareness to the work service dogs do during International Assistance Dog Week 2013. Without further adieu, Samantha.

To most, their pets are their companions but to me, Ivy, my service dog, is much more than that. She is my independence, my arms and legs.

My service dog journey started in 1998 when I saw a puppy in training during an appointment at Children’s Hospital of Philadelphia. From that moment on I knew I wanted a service dog so I could be more independent. Six years and one denial later (I was turned down by the organization the puppy in training was from), I found myself starting Canine Partners for Life’s team training with Ivy.

Like anything else in life, service dogs have both pros and cons. A lot of people assume that when you receive a service dog from a program that the dog requires no other training. This most certainly is not true. They are dogs, not robots, and their skills and obedience need to be worked on, “brushing up on” if you will. Sometimes a service dog will just have an off day and, although they know what they are suppose to do, they decide they just don’t want to do it. In the case of Ivy, she has what I like to call her “diva moments” where she throws in some dramatic flare when doing tasks. Service dogs also need high quality food, regular grooming (remember they’re out in public and need to be presentable, aka looking fab-u-lous!), and, Ivy’s favorite…LOTS of exercise and playtime.

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For me, the pros definitely out weigh the cons. The independence Ivy provides is immeasurable. I have a progressive neuromuscular disorder called Spinal Muscular Atrophy. It affects the connection between the muscles and nerves, making the voluntary muscles get weaker over time. I use a power wheelchair full time, have limited use of my hands and require help with all activities of daily living.  Simple things that most people take for granted, like picking up a glass of water, I cannot physically do myself.

Ivy enables me to go outside by myself or in a different store in the mall with out worrying about being stuck if my hand falls off the joystick. Someone doesn’t have to stop what they’re doing to help me, I can just ask Ivy. And she is willing to do what I ask in exchange for some verbal praise and some treats.

Besides the service skills she does, having Ivy helps me in other ways. My days of sleeping in until noon are over, I have to be up and ready at a reasonable time to make sure she goes out to potty and gets fed. Sitting inside all day is not an option, we go out for a walk and some playtime, weather permitting, everyday. She knows even before I do when I’m about to get sick, she lets me know by becoming extra cuddly. She allows me to not focus so much on my disability because I focus on her and her needs.

Ivy and I have been together now for 9 years. We’ve had a lot of ups and downs and seen a lot of milestones together: I graduated college (including walking across stage together, Ivy wearing her very own cap, of course, and retrieving the diploma!), gone to camp and a few retreats by myself (fun), had a hospitalization (not so much fun). Ivy’s working career will be coming to an end soon (she is 11 years old after all) but I know neither of us would change anything about our partnership.

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Disabled, Mobility Aid, and Chronic Illness

August 6th, 2013 by Carrie, the Just Mildly Medicated gal

When I was younger I didn’t give much thought to things like the meaning of disability, mobility devices, or a chronic invisible illness. To me disabled meant something clear, something visible. Mobility devices were things like wheelchairs, for those undeniable and clearly disabled people, or maybe a cane or walker for some who needed stability. I would have assumed the stability was needed because of age or maybe some accident.  Again, these weren’t well thought out opinions just an assumption at a moments glance.

If you’ve followed for a while you’ll know many women in my family suffer with a chronic invisible illness called Dysautonomia, but we didn’t always. I didn’t grow up thinking that something inside of me would someday change, I never thought I would slowly become disabled.

I am now much more familiar with what disabled means, what mobility aids are used for, and what a chronic invisible illness is. Though my personal awareness has changed I am forced to relive my old assumptions through others, some parts because of the assumptions they have and others because of my own fear of being judged.

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These are some very recent photos that I have seen online. I know the people who posted them believe that they are defending the “truly” disabled, you know, the definition a person may have of disabled before being thrust into the world of invisible illnesses.

Some of you may know me personally or follow my blog regularly and think that no one would think this of me, but each of these photos could easily be someone’s impression of me. I have been blasted with a series of questions about my illness in an interrogation style, I have darted from my wheelchair to get in the car because I felt someone was watching, and I have had my use of mobility aids discussed without my being there and heard about it through the grapevine.

Yes, I’ll stand up to reach something if there isn’t anyone there to ask… and yes it may be for some Skinny Girl. Yes, I can walk and I use a wheelchair.

Though I like the idea of you defending the disabled, a sign like the one below confirms that you have a specific idea of what disabled looks like. A person with a disability that is not so clearly seen may be concerned about meeting your definition of disabled. Your intent of defending may in fact look like a judgment of the very group of people you think you are defending.

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The fact of the matter is I am permanently disabled, after many tests and many doctors weighing in I am listed as being “unable to ambulate or walk 50 feet without stopping to rest due to a disabling neurological condition.” This is not a fact I have come to accept easily.

Now for my own personal reasons I do not receive SSI disability, mostly because I can only tackle one beast at a time. I have started the process with my insurance for my power wheelchair and have been using a power and manual wheelchair regularly for months. I will pick up my placard Thursday. I have put off getting the placard for some time, let’s just say I’ve had more than 2 forms expire while making excuses.

So yes, I’ll use the disabled parking placard even though you might not look at me and be able to tell why. Fact of the matter is on a good day many people will look at me and assume I am abusing it. Sometimes I use a cane, sometimes a wheelchair, and sometimes I may just walk in. People will see me walk from the passenger door to a wheelchair, or may see me in a wheelchair one day and not the next. A wheelchair is a mobility aid, I personally use one to help stabilize my blood pressure and heart rate as postural changes cause drastic instabilities for me.

I understand how confusing it may be, and I know when you see someone using a handicapped parking spot and walk in to the location looking “fine” you may want to give a look, leave a note, or even confront them. I ask you to come away from reading this knowing that neurological, cardiac and pulmonary conditions, along with many other invisible illnesses, do warrant these accommodations. A doctor must grant these accommodations and the doctor will benefit in absolutely no way from doing so.

JMM gal in wheelchair

Love,

The Just Mildly Medicated gal

Roll Model Gear

July 29th, 2013 by Carrie, the Just Mildly Medicated gal

My introduction to Roll Model Gear started when I posted a pic on Instagram. A woman saw it and commented that I should check out the website, a few minutes later I was online and knew I wanted to get to know the people behind this very special website. After some brief exchanges I wanted to help in any way I could.

Kevin and Dylana were excited to collaborate with Just Mildly Medicated and we hope to reach new people and share Roll Model Gear and their mission.

Can you tell us a bit about you, Dylana, and Campbell as the people behind Roll Model Gear?

Kevin: First off, let me say a heartfelt thank you for showing such an interest in our project. Your blog is fantastic, and being a part of it is really exciting to us.

Dylana teaches dance and is currently on track to being an Occupation Therapist. She has been working with kids through dance for nearly 15 years, and has learned quite a bit about kids, adults, and their individual challenges. She has really become a very fantastic teacher in the way of dance, but has also shined as a mother and a person over the last few years in particular.

Dylana and I have a 4 and a half year old son, named Campbell who was born with Spina Bifida. Campbell obviously has faced many challenges, and we have of course heard so many different projections of his expected abilities, medical probabilities or likely outcomes, we were initially overwhelmed. After getting our feet underneath us, we decided to let no one else set our child’s limitations and have since pursued every single known (and some unknown) avenues for furthering his progress, acceptance and successful life path. I know that “life path” sounds a bit too outlandish when referring to a 4 yr old, but as you may know, having challenges that others may not understand can lead way to a challenging future.

Dylana has really been pivotal in communicating her wants and hopes for our son, and has really been an invaluable teammate as a parent, by always holding the best interest of our child as a first priority. Most people will say that this is what any good parent would do, but with the challenges we have all faced, she has really been tempered in hot fires. If there was equipment our son needed or a medical test we thought might benefit she has no hesitation in voicing her opinions, working through red tape or jumping on board with me to do what it takes to get results. Many parents will never face these obstacles, but she has done so with steadfast courage and determination.

That brings me to myself. My name is Kevin. I have been in the gymnastics and cheerleading industry for most of my life. Though I have been a part of all of the different facets of the business, I too have spent the majority of my life teaching kids. I coach all different age groups from 5 to 25 and have coached in all of the different settings and scenarios. Although I continue to grow as a coach and parent, learning that all kids understand and learn differently early on in my career has really transferred over to my parenting style. I have had quite a bit of experience with challenging situations in regards to kids and their families, and was able to really absorb a lot of knowledge by paying close attention.

In my time away from cheerleading, I have been doing more and more graphic design, web design and artist services to help supplement income. Like Dylana, I too have been persistent in my fight to give Cam the absolute best of opportunities and continue to be as involved and hands on as I was the day he was born.

Campbell has now learned how to do lots of standing and walking with the right assistive devices, some potty training, and has grown intellectually to a level that is beyond many “typical” kids, even older than he. He is the most kind-hearted and gentle child I have ever seen, and has no hesitation in introducing himself to others and offering up hugs.

Throughout the process of learning the best ways to help Campbell, we also faced substantial challenges in getting the right kinds of equipment, finding the right therapies and therapists, and even getting the right level of support medically. Though we have a great support system and are very resourceful, we have also witnessed so many other children and adults with a variety of needs who may not be quite as fortunate with the amount of help they receive (financially and emotionally). Because we bear witness to this so often, the idea for Roll Model Gear began to take shape.

Campbell has had much success with a special type of bike called an Amtryke. It is specifically designed for physically handicapped people to use by pedaling the bike with their arms. He recently out grew his first Amtryke, and because it is such a great physical activity for him to do outside, we began looking into a new model. The next size up for Campbell was beyond our price range, creeping up on the thousand dollar mark, so Dylana had an idea. We should do a fundraiser that will not only help raise funds for Campbell but will also give us a way to show our support for the disabled community and eventually try to pay it forward

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So we are seeing the birth of Roll Model Gear coming. How did you come up with the logo that I for one am in love with?

Kevin: Dylana sent me a text one day and said, “I’ve got it! We could do shirts that say My Child is a Roll Model – instead of role model and have a neat design.

I got started on making a logo that we thought was not only appealing to the cause, but had a catchy modern play on the traditional handicapped symbol. Roll model Gear’s logo was born soon after I spent some time envisioning what I wanted it to look like. The handicapped symbol tilted forward showing a person in motion signified to me that this is aiming for progress and forward motion and that anyone facing these challenges is and can be moving forward in a positive direction. I added the small upward angled arrow to the bottom of the logo to depict an upward motion in the awareness of anyone whom this logo could apply to.

Once we had a logo, we realized that we could easily offer the shirt to anyone who was interested in showing support for someone in particular, or even just the movement we hope to create. From the plain logo just supporting the cause of raising awareness to the virtually unlimited slogan add-ons, we grew to accommodate anyone.
With the profits from our sales, we are listening to the story of anyone who may need some assistance in buying equipment of any kind that is relevant to those who we want to raise awareness for.

After hearing our plan, a generous supporter and therapist had access to the Amtryke we hoped to get for Cam, and graciously donated to him. Because of that, now all the profits are paid forward to benefit others. Roll Model Gear is so proud that we were recently able to announce our ability to help purchase new arm crutches for one of our supporters. We are still working hard to grow our project and reach more people worldwide.

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If you would like to make a donation and/or purchase these amazing T-shirts you can do so by clicking this link.

Please also consider following Roll Model Gear on Facebook  and Instagram.

Some of my own families fun in our Roll Model Gear.

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Glow in the dark put put golf

Glow in the dark put-put golfing.

Thanks for all your support!

The Just Mildly Medicated Gal

with Kevin, Dylana and Campbell