Summertime can bring forth dozens of unique skin issues for full-time wheelchair-users. From heat rashes to sun burns, we need to be more vigilant now than ever before. Skin is by far one of the most important (and most visible) organs in your body. Don’t neglect it, people!

The good news? By doing a few simple things, it’s super easy to keep your skin healthy and attractive. It’s really not that hard (as long as you stay on top of it; the key issue). So please, don’t let this busy time to get in the way of your proper skin care. Your skin can be glowy and healthy too. Honest! And here’s how.

1. Pesky moisture: With humidity and extra perspiration, it’s almost too easy to develop a heat rash in closed-off areas like the inner thigh or between the toes and fingers. To prevent heat rash, make sure you take extra care when drying the areas after showering/washing them (which you should do at least daily, btw. No excuses). And also (I know this one isn’t easy), try getting air to these areas as much as possible. I sometimes sleep with my legs in the “frog” position to keep my bikini line in tip-top shape, as should you.

2. AD and overheating: For people with SCI, Autonomic Dysreflexia is a condition we must be extra-vigilant about during the summer months. By spraying yourself with a mister or a water bottle however, you can mimic sweat and keep AD at bay. The only problem with this method however is the moisture, which can get into those pesky areas (causing heat rash) or rinse off your sun-screen. So be careful of the side-effects!

3. Sun-screen and paralyzed skin: Sun-screen is important for everyone, but for people with disabilities who have delicate skin, it’s even more important. Over the years, I’ve found that a higher SPF is needed on parts of my body that are paralyzed and never see the sun (like my upper thighs), so be aware! In mid-summer sun you can burn in 20 minutes. Also (for easy application), buy the aerosol sun-screen (one of my favorite inventions from the past couple of years). It makes the annoying task of putting on sun-screen a cinch.

4. Use face and body scrubs: This may seem like a purely beauty-related tip (it could be, because everyone loves smooth skin), but it’s not. Exfoliating your skin gets rid of old skin which doesn’t want to slough off (a particularly tricky problem for people with SCI too), which in turn causes ugly blemishes. So get rid of that old skin. St. Ives Apricot Scrub is the cheapest/best exfoliator out there. I’ve been using it for years and absolutely love it.

5. Edema/foot swelling: You know, t always seems that the edema in my feet gets worse in the summer months (is humidity to blame? Not sure). To prevent edema from getting too bad, sleep with your feet elevated and for LONGER than a few hours. 7-8 hours is the perfect amount of time to get your feet back to how you life them. Even try wearing cute knee (or thigh) high socks a few days a week (thinner fabrics will also work); anything to give your lower legs enough support for adequate blood flow.

6. And don’t forget to stand during the busy summer months! Standing on a regular basis, especially during the summer, is your first line of defense in preventing many of the above issues (edema, getting air to certain areas). And remember, standing also has a huge emotional benefit, helping you feel happier and energized, which are both great things to experience during the summer.

What other tips do you have to minimize damage to your skin? What works or doesn’t work for you?

Now three years after fulfilling his dream of completing the wheelchair back  flip, Aaron continues to make a name for himself.  He performs at skate parks around the country and hopes to competed in the X Games one day.  He  builds up the sport of Hardcore Sitting by mentoring others with disabilities and teaching them the wheelchair skills he loves. Aaron has an amazing drive and great attitude on life!  One time when asked, “What is Spina Bifida?” he responded by saying,  “A great opportunity.”

One time when asked, “What is Spina Bifida?” Aaron responded by saying,  “A great opportunity.”

Learn More About Aaron-See More Videos & Pics:
Visit Aaron’s Hardcore Sitting Website, Facebook Group, or MySpace Page.

Do you have a unique hobby that you like to share with others?  Does Aaron inspire you to get involed in something different?

L

Many of these blogs are also a great resource for end-users. The article separates blogs into 5 categories: physical, mental, homeopathic, first hand accounts and academic or informational.  You can find our EasyStand Blog under the academic or informational category.  Each blog listing includes a short description, so it is easy to find which blogs would be of interest.    As an example, here is how our blog is described:  “EasyStand Blog - A blog for those with spinal cord injuries and cerebral palsy. It features information about its EasyStand chair as well as up to date news and features on paraplegic innovations and lifestyle.”

Do you find this list of therapy blogs helpful?  Which blogs did you visit or subscribe to?

As a quadriplegic since June of 2000, and the co-founder and president of Unite 2 Fight Paralysis (U2FP), I am excited to tell everyone about Working 2 Walk 2009.  This year, it will be held on August 27-29, 2009 in Chicago, IL.  Working 2 Walk is a spinal cord injury and paralysis cure research and advocacy event co-hosted by the Sam Schmidt Paralysis Foundation and Unite 2 Fight Paralysis.

Did you know…?

• Many researchers seeking a cure for paralysis have never met a person who uses a wheelchair?
• The most effective cure advocates are familiar with the latest scientific research?
• Many people don’t feel knowledgeable enough to choose which researchers to support?
• It is rare for cure researchers and our community to interact and learn from each other?
• Our community support can motivate researchers?
• Paralysis cure researchers can motivate us?

Working 2 Walk is a unique gathering of paralysis survivors, their families, friends, researchers, practitioners, and others to experience the two days of advanced cure science, presented in understandable terms by leading cure research scientists.  People who attend W2W come to learn advocacy methods (from both the pros and grass root patient advocates) and the latest in activity-based recovery that is specific to the paralyzed population. Plus, it is a great venue to meet others with paralysis with the same goals!

If you are interested in a cure for spinal cord injury and paralysis, this is an event you will not want to miss.  For more information, please visit the W2W website at www.working2walk.org

Have you attending Working 2 Walk in the past, or are you attending this year? What events do you attend to network with others?

It’s that time of year again! Many students are headed off to various universities, technical, and vocational schools in the fall.  Has the student adequately prepared to be properly served upon his/her arrival on the specific college campus?  Find out what the U.S. Department of Education has to say about how to receive the most accurate accommodations possible and the steps that are suggested to guarantee successful experiences as they relate to the student’s disability and coping mechanisms.

This is Bell Hall, the only dormitory on Main Campus of GCSU. It is home to 190 of our Honors and Scholars Program participants and various other students who may have special housing needs.

Not only is it important for students to understand their rights under Section 504 of the Rehabilitation Act of 1973, but students must also understand their rights as a US citizen affected by disability under the Americans with Disabilities Act that was recently revised in September 2008.

As a student who understands the need for accommodation based on disability at the university level, here are a few hints to get started with the process.

First and foremost, it is important to understand that while academics are a vital aspect of the university or technical school, it is doubly important that the services students are granted adequately meet their needs so that they are not forced to cope with aspects of students disability that can be alleviated. When a student tours a school, I would recommend that he/she set up a meeting with the disability services office on the same day as the tour.  This is so that he/she has had time to look at the “lay of the land” before formulating questions to ask the disability services staff.

Some of the pertinent questions to ask disability services providers for those students with extra challenges include:

1. How close is the actual campus to the dorm?
2. Is the cafeteria in an accessible location?
3. How can I transport my textbooks from class to class? (If you live in Georgia, check with AMAC and see if your institution is a member.)
4. Will classes be able to be scheduled to accommodate possible fatigue and medical emergencies?
5. Will the student be granted extended time for testing periods just in case fatigue takes over during the test? If so, where must he/she go to obtain the accommodation, and what is the procedure?
6. In case of an elevator malfunction, is it possible to relocate classrooms to assuredly accessible locations?
7. What types of assistive technologies are available for the student to succeed in the classroom environment?
8. If financial assistance is needed, how is it obtained?
9. How recent does medical documentation need to be? (If you live in Georgia, here are the University System of Georgia’s documentation requirements for several different disability classifications, and here are the general documentation requirements that must be satisfied by every student requesting services.)
10. Does the school have copies of your last (2) Individualized Education Plans and/or Section 504 Plans? Often, these are used to determine the frequency that a student has used an accommodation or taken advantage of a modification during his/her high school years. Two IEPs or 504s are often needed to mark trends or patterns in order to determine whether or not the accommodation will be granted to the student at the college level.
11. What kind of testing accommodations are offered at the school? Use of a calculator? Use of a word processor? Notetakers and scribes?

Secondly, you may want to ask about possibly networking with other students who have similar impairments. Whether that means meeting them in person or connecting through Facebook or Twitter, that person can give you sound advice to which you and he or she are able to relate.

Thirdly, if you have an interest, there may be an organization on campus that promotes disability advocacy and awareness under the leadership of students with disabilities. Sometimes, it’s just a good feeling to know you’re not alone.

Fourth, ask about how you need to make your professors and other university faculty and staff aware of the condition(s) and the accommodations that you will receive through the school’s Office of Disability Services. In most cases, the office will write a letter to each professor stating the needs of the student and the accommodations that will be exercised during his/her class.  If possible, you may want to arrange a meeting with the Director of Disability Services or your case manager, whatever the case may be, and your professors to discuss accommodations.  Then they can see you face-to-face and know that you wish to take an active role in your college education.

Throughout this experience, remember that there is no such thing as a stupid question. You, as the student, are on a quest for information, and the university personnel is there to help you. That’s their job. They love students.

Lastly, and most importantly, enjoy your time as a college student. When choosing a major, choose something that you are passionate about so that you will not “burn out” as quickly, make good friends, study hard, and make sure, no matter what, you ensure that you are accommodated so that you too may have an equal opportunity to a college education!

Are you, or were you a college student with a disability? What advice do you have for others? What worked or did not work for you?

“The Aging and Disability Resource Center Grant Program, (ADRC) is a cooperative effort of the Administration on Aging (AoA) and the Centers for Medicare & Medicaid Services (CMS), it was developed to assist states in their efforts to create a single, coordinated system of information and access for all persons seeking long term support to minimize confusion, enhance individual choice, and support informed decision-making.”

The new funding will build on and expand the existing programs to ensure that every state can offer this program and its services to their residents.

The funding availability includes two opportunities:

1. AoA -funding for ADRC development or expansion in up to 50 states over a three year period. With a maximum award of the ADRC of $600,000.

1. CMS - award opportunity to programs in California, Hawaii, Maryland and North Carolina to strengthen ADRC partnerships with hospitals. That way more people who are being discharged who need post-acute care can receive that care at home rather than in a nursing home facility. The award amount per state is $1,167,000.

CMS believes these funding opportunities will make the correct services available in the appropriate settings, meeting individual needs.

Another resource currently available to help individuals locate appropriate technology assistance for at home are the State Assistive Technology (AT) Projects.  State Assistive Technology Projects are funded in the U.S. under the Assistive Technology Act of 1998 (P.L. 105-394). These projects can provide technical assistance on assistive technology, consultation, product demonstrations, equipment borrowing, and low-interest loans for individuals with disabilities.

Look beyond the basics when in need of funding for home care or medical equipment. Time put towards creative techniques and thorough research into available funding opportunities will pay off!  Be persistent and patient, and stay abreast of the latest developments with programs such as the ADRC Grant Program and CMS, and AT Projects.

Have you utilized the state AT Projects, or opportunties from other grants to improve the quality of life for you or someone you care for? What advice would you give to others about funding opportunties?

This is the first post by Erin Breedlove, a new guest blogger on the EasyStand Blog.  Read on to learn more.

As many individuals with disabilities find, it is often difficult to discover a niche in this modern society that labels people as if they are soup cans or some such material.

I’m Erin, a college student with cerebral palsy. Though my CP is mild, I feel the social effects of it almost daily. Everything from the stares by ignorant people in the aisle of the grocery store to the frustrations of being nineteen years old and unable to drive as of right now seems to get to me. However, it’s always easier to focus on the negative when angered by an issue that can’t be controlled. I know though, that I am blessed. I have walked since I was five-and-a-half years old, and despite the doctors telling my parents that I would never learn to walk, talk, read, write, or drive, I could spell my name by the age of two-and-a-half. I also was reading on a first grade level by the age of four.

My life has been spent with the mindset that I have to defy the so-called “standards” set by this cruelty of a modern society for individuals with extra challenges. So it takes me ten minutes to put both of my shoes on, my orthotics, and my socks. Are you going to tell me you’re sick of waiting on me to do something independently? I think not!

Throughout my life, there have been many special angels who have spent countless hours dedicated to encouraging, helping, and supporting me.  All the while, they have shown me what it means to care for and to advocate for individuals with disabilities. I have turned the demonstration into passion and into my life’s work.  I have advocated on behalf of and worked with children and young adults affected by disability for six years. I will be attending Georgia College and State University beginning in August to pursue a Bachelor’s degree in Special Education. While attending GCSU, I will serve as the Vice President of Programming for ABLE Student Alliance, which is our organization for disability advocacy on campus. In the position, I will be responsible for organizing awareness activities for the campus community, disability awareness promotions, and providing necessary resources to students, faculty, and families.

Over the course of the nearly two years I have worked with the Georgia College family, there have been many instances in which I just know that the college is right for me. For example, the campus’ physical size is smaller than that of my high school and is the first college campus I have ever been able to walk completely independently, my dormitory is on main campus and the room is completely accessible. Though I don’t use a wheelchair, I do use a shower chair to take my showers, and those were the only rooms that have that feature.

More than that, Georgia College has disregarded the “soup can” mentality and shown me how to be passionate and advocate for those things in which I believe. In working with the disability services provider, I have found that advocacy is my passion. Thus, upon graduation, I will go on to receive my Master’s degree in Rehabilitation Counseling to either serve as a vocational rehabilitation counselor for the state or to become a disability services provider for a university. If you’re interested in following my journey, I author a blog called Empowering People and Changing Lives that not only serves as a space for me to chronicle my continuing quest to empower people and to change lives, but it is also my goal to provide resources to students, parents, and professionals. Remember, in the words of Mahatma Gandhi, we must “be the change we wish to see in the world.”

How has your disability affected you socially?  How do you defy the labels that others might place on you?

Dancing with the feet is one thing, but dancing with the heart is another.

Meet Capri Eckonen, a happy nine year old girl who loves dancing and listening to music. She was born with Cerebral Palsy which limits her dancing physically…but Capri dances from the heart.

Capri lives with her grandparents Tom & Diana and does most of her dancing in her EasyStand at home. “When Capri stands we roll her close to the TV and she tries to dance to the country music that is playing,” Grandpa Tom says. Capri stands, or “dances”, at home three evenings a week for forty-five minutes each time.

“Capri stands, or ‘dances’, at home three evenings a week for forty-five minutes each time.”

Capri also uses a stander at school three times a week for thirty minutes each time.  She spends part of her day in a regular class room and the rest of the day in the special education room.

Capri’s grandparents don’t let Cerebral Palsy keep her from having a full life.  They keep her busy with activities that she enjoys like swimming, standing, and of course dancing!  Tom adds, ”We really enjoy seeing her stand up and she seems to enjoy standing!”  Read Capri’s Story “Stand, Dance & Splash!”

Does your child stand? Here are some more fun activities for kids to do while standing.

How do you focus on your child’s abilities rather than focus on their disability? Does your child have anything special that they like to do while standing?

Sometimes I have to share not such great news. Here it is. There is very little research that supports using passive standing programs to improve bladder and or kidney function/health. It may - and we have lots of anecdotal (testimonial) information that standing does help the bladder empty and decreases urinary tract infections, but when you go to the literature, the information is just not there. Kinda makes me crazy because I often read articles that say that standing does improve bladder function and they often site a particular research study. Then I go to that study and see that there was no data - just someone’s opinion. UGH! Can someone please add that outcome next time they do a study…..

I found 5 studies on passive standing and bladder function. Four of the studies are based on answers given on 2 surveys sent to consumers who returned their user cards from two brands of standers. The surveys were not standardized or validated and the researchers designed it just for these series of studies. While each published study take s a different twist on the question, all four are based on the same type of data. Of the subjects with spinal cord injury, Dunn (1998) found 21% reported being able to empty their bladder more completely and decrease in bladder infections. Eng (2001) reported 16% improved bladder emptying. Huston (2001) reported 53% improved bladder function. Walter (1999) also reported fewer bladder infections. Gould (1955) looked at normal subjects and found that the bladder pressure increases at 60 degrees tilt from supine. Increased bladder pressure is thought to correspond to increased bladder emptying. This data could mean that if we are looking to improve bladder emptying and thus decrease bladder and urinary tract infections we may only need to stand as upright at 60 degrees.

Sorry I couldn’t give you better news, but stay tuned, I have better news in the next installment!

Read more blog posts from Ginny Paleg, PT
Can a Standing Program Improve Bowel Function?
Can a Standing Program Improve Bone Density?
Can a Standing Program Improve Hip Integrity?
Can a Standing Program Improve Motor Skills?
Watch Ginny Paleg’s Free Webinar on Supported Standing

Are you a clinician who would be interested in doing a research study on standing and bladder function? Do you have anecdotal evidence that standing helps improve bladder function?

The summer months are some of the busiest for spinal cord injuries, warn leading doctors at The Miami Project to Cure Paralysis, a Center of Excellence at the University of Miami Miller School of Medicine. As we head into summer, doctors and researchers say that safety precautions are the best measures to prevent spinal cord injury (SCI) during the high-risk months and year round.

According to the Spinal Cord Injury Information Network, there are more than 13,000 spinal cord injuries reported each year, with an increase in cases occurring during the summer months. Doctors at The Miami Project to Cure Paralysis feel this timeframe has the largest numbers of spinal cord injury cases reported due to increased participation in recreational activities and trips in motor vehicles, which make up nearly 50 percent of SCI cases annually.

“While summertime tends to have higher incidence of SCI, we urge everyone to always take caution while swimming and diving and to wear helmets, seat belts and use the proper sports safety equipment during recreational activities,” said Dr. Barth Green, an internationally recognized expert in the field of spinal cord injury and Co-Founder of The Miami Project to Cure Paralysis. “Spinal cord injury primarily affects the young, with more than half of all injuries occurring among the 16 to 30 year age group. Many children are participating in summer camps and sporting activities so we need to urge caution.”

“While summertime tends to have higher incidence of SCI, we urge everyone to always take caution while swimming and diving and to wear helmets, seat belts and use the proper sports safety equipment during recreational activities.”

Additionally, raising awareness of spinal cord injury through public education, high-profile fundraising and special events is a goal and ongoing mission of The Buoniconti Fund to Cure Paralysis, the fundraising arm of The Miami Project.

“The number of people affected by spinal cord injury is growing each year because people are generally living longer due to better quality of care. We hope to raise awareness through government funding, private donations and general fundraising so that The Miami Project can continue to make scientific breakthroughs that buoy the hopes of the millions of families throughout the world who cope with spinal cord injury,” said Marc Buoniconti, President of The Miami Project and The Buoniconti Fund.

The Miami Project’s research efforts have made successful advancements in improving outcomes of those who become injured through pioneering hypothermia research and intraoperative monitoring techniques. Additionally, researchers are also addressing the quality of life issues that occur after injury such as treating pain, spasticity, autonomic functions and male fertility.

“Our research in basic sciences is aimed at understanding and reversing the neurological consequences of the injuries. Our research in clinical sciences is aimed at evaluating and improving strategies that maximize function in persons living with spinal cord injuries today,” noted Dr. W. Dalton Dietrich, The Miami Project’s Scientific Director. “By uniting a broad range of expertise, our team of scientists is accelerating the search for effective treatments for SCI and other neurological disorders.”

This is a guest post on the EasyStand Blog by Margaret Mazzone, PT.  Margaret Mazzone is a pediatric Physical Therapist working on her Ph.D. degree in the Dept. of Rehab Science.

Are you a therapist that recommends standing devices for children as part of your clinical practice? If so, you are invited to participate in research that is being conducted through the Department of Rehab Science at the University at Buffalo, State University of New York.

This investigation will explore current practices and decision making, service delivery, and issues of acquisition and use of stander devices with children.  This information is valuable to clinicians, manufacturers, and insurance payers, and will help to identify future research needs. This research is much needed given the limited research in this area and the current health care climate. Participation involves completing an electronic survey which will take approximately 20 minutes of your time.

This research is much needed given the limited research in this area and the current health care climate.

Contact Margaret Mazzone, PT, MS at mmazzone@daemen.edu or (716) 829-6726, c/o Dr. Jim Lenker, with any questions or concerns. The research is approved by the SBS Institutional Review Board at the Univ. of Buffalo, SUNY.

Access the Survey & Find More Information

Are you currently conducting or interested in conducting a research study on standing? Did you participate in this survey?

By combining sit-to-stand and supine standing, the Bantam stander can position a child in six main positions. Standing positions in the Bantam include: upright standing, supine standing, and supine standing with knee/hip flexion. Other positions include 90/90 sitting, anterior tilt sitting, and lying supine. By offering a variety of positions for a child to move in, the Bantam reduces fatigue while maximizing comfort and standing compliance.

Want to see the positions in action? Check out this video:

But don’t give up on your quest to look cool, as well as feel cool. You too can wear all of the above things by following a few simple suggestions. Read on and let summer fashion be your friend!

- Shorts:  A lot of fashion gurus will tell you that if you’re a woman, you should never wear shorts (and opt for skirts instead), but in all honesty, this advice just isn’t practical. So many American women out there love their shorts, they’ll never listen to this advice. So if you’re a female wheeler and want to sport shorts this summer, the key is finding shorts that are the right length. If they’re too short when you sit, they’ll ride up between your thighs and look unflattering. The good news is that a lot of stores like New York & Company are selling shorts with longer inseams this season (as well as Capri pants). Here’s a pair I highly recommend.

And for you men out there, shorts aren’t as eschewed. Just make sure they fit you well and aren’t as short inseam-wise either. Here’s a cool pair of shorts that are in-style and will look good on wheelers.

- Skirts:  I’m a huge fan of skirts and wear them all year round. I know a lot of women out there who use wheelchairs shy away from skirts for a variety of reasons, saying it’s because they’re legs splay open too easily and they don’t want to give anyone a free show, to the common reason of, “It just doesn’t look right when I sit.” But I’m a firm believer that skirts can work for women wheelers no matter your body shape. You just have to know what features to look for in a skirt. And as with shorts, it‘s all about the length. Make sure it hits your knee AT LEAST (and nothing shorter). This guarantees it won’t be too short when you sit.

I’m a big fan of jersey fabric skirts. They’re comfortable, lightweight, and the inseam can be adjusted depending on how you fold the waistline. I also think every wheeler woman should own a jean skirt. They match everything and always look great (especially when you‘re not sure what else to wear). And find one with a stretchy blend in it for an easy fit.

- Swimsuits:  The dreaded swimsuit. I know a lot of you ladies out there, disabled or no, refuse to wear any kind of swimsuit, but hey, aren’t you sick of feeling this way? There are so many great new styles and cuts of suits out there now that almost anyone can find a suit that’ll flatter their shape. Tankini tops paired with a long flowy skirt always look great (and this pairing can look good on people of all different weights). And a bikini top paired with a cool pair of sporty shorts also works. I rarely if ever wear the swimsuit bottom because even on me (and I’m pretty skinny) it just doesn’t look right (quad flab. ug). Now if I plan on getting wet I will, but I’ll usually just wear them under my shorts or skirt.

Old Navy has some super cute suits this season. Here’s one of my favs (I love stripes!).

- Sandals:  I love wearing sandals all summer. They’re great for your skin because they let it breath, and they also are an easy way to look seasonally in-style. While Tevas (and likeminded shoes) are popular with a lot of wheelers out there (because they‘re comfortable, easy to put on, and don‘t fall off; a critical selling point), they’re not exactly the cutest shoes on the planet. If you’re looking for something new to wear this summer (and you’re a woman), here’s a nice pair of casual sandals that’ll work for most summer looks.

And for the dudes out there, these simple sandals should do the trick.

- Summer accessories:  Whether it’s hats, sunglasses, head scarves, toe rings, or bangles, there are a plethora of cool summer accessories out there that can amp up your look. Aviator sunglasses (think Top Gun) are HUGE this summer for both men and women (I bought my pair from Target for $19.99). Also, bracelets (wearing multiple bracelets) can help a lot of women wheelers look uber chic. Try it!

What are your favorite summer styles or tips? What styles have you found to be the most comfortable or flattering?

Up until 2004, I was able to walk with crutches, but was considered to be a home-bound walker because I could only walk 15 feet and on a good day.  Even then I used my power chair for mobility.  The only alternative that I had to being in my chair 16-18 hours a day was lying in bed.

One day while at physical therapy in 2005, my Physical Therapist Kim McPhail asked me if I had a stander.  I asked her what it was because I didn’t even know there was such a piece of equipment available.  She explained what it was and how she thought it would be beneficial for me to own one.  When I got home from Physical Therapy, I got on the Internet and found http://www.easystand.com.  I then called my friend, and awesome Occupational Therapist, Teresa Plummer.  I asked her if she thought a stander would help me and she said, “I think a stander is a great idea.  You should have had one a long time ago.”

So, the first thing I did was contact my insurance company and they told me that they didn’t cover standers.  Let me make it clear, this is not the case with all insurance companies, every payer and every state is different.  After talking with Nancy Perlich, Funding Specialist at Altimate Medical, she explained more about funding for standing frames and that I would have to purchase a stander through a Durable Medical Equipment (DME) provider, since EasyStand doesn’t sell direct to the customer.  I was OK with this because I wanted to ensure that I got the right stander.

I called my OT, Teresa and asked her exactly what options I needed on my stander. Since I was paying cash instead of going through my  insurance company, I called three different DME providers and got quotes.  Williams Medical Supply in Nashville, TN is who I purchased my stander from.  Bob Brake was the best to work with and the price was reasonable.

Once I knew the price, I realized that what I had in savings wouldn’t cover the cost, so I needed to earn extra money.  One thing that I did is ask my friends to put money toward the stander rather than giving me Christmas gifts that year.  I also received a donation from a local non-profit.  So, one could say I came up with some creative ways of getting the money together.  The most important thing is it worked!

One thing that I did is ask my friends to put money toward the stander rather than giving me Christmas gifts that year. I also received a donation from a local non-profit. So, one could say I came up with some creative ways of getting the money together.

On January 31, 2006, my stander was delivered.  When I first got it I couldn’t get into it independently.  After some adjustments, now I am standing everyday for 30 minutes or more and I can get in and out of it independently! While standing, I may call friends on the phone, eat, write, etc.

Here is what I learned in my process of getting an EasyStand:

1. Do your research on standing frames that are available.
2. Work with your PT/OT/DME before buying a stander so they can assess your abilities and standing needs.
3. Contact your insurance company and ask a lot of questions.
4. Get creative if your insurance company does not cover standers!
5. Find a DME supplier you’re comfortable with & request a to try the stander first.
6. Stand on a regular basis and set goals!

What did you learn on your journey of getting a standing frame? Did you get your stander covered by insurance or Medicaid, or did you have to “get creative”?

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