Open Road

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I have many goals in life. One is almost done and that is to have my own home. Another big goal of mine is to start driving. The redesign of my new home will give me significantly more independence, but that comes at a cost. That cost is not having my family always around to give me a ride in my wheelchair accessible minivan. My new home is walking or rolling distance to many places. It also has an accessible community shuttle, but it is very slow.

I believe that there are very few alternatives for true independence other than being able to drive. I have looked at many different driving systems currently on the market and I believe the Paravan Space II Drive-By-Wire System is the best for me. It is available in three steering options which include a joystick, mini-steering wheel, and a rotational steering device. After doing a lot of research I believe that the rotational steering device is the best for my specific needs.

The main issue is that very few to no one in my area train people to use the Paravan Space II Drive-By-Wire System with a rotational steering device. The second issue which is huge is that it costs around $70,000 which does not include the cost of the modified vehicle. Vocational Rehabilitation will pay for this in most cases, but I am not most cases. Vocational Rehabilitation will pay for things if you are working or looking to work, but I cannot work as I cannot afford to lose my Medicaid Long Term Care as I mentioned in I might be in a wheelchair, but I don’t just sit on my ass. I am not giving up on this next dream. I even bought the website domain www.mostaccessiblevehicle.com so I can share my process with others. If anyone has any ideas of how I can make this a reality or knows someone at Paravan please comment or contact me.

Queen of ? Robots

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I have recently become of big fan Simone Giertz who is the Queen of ? Robots. I would highly recommend you check out her YouTube channel, but I warn you that most of her content may not be suited for young children. Simone invents robots that do not really work, but they are supposed to do normal tasks that we as disabled persons refer to activities of daily living. I am hoping that her ideas can lead to inspire to be more creative projects that can the disability community. For example, she created a robot to pour milk in cereal and a robot that can brush teeth. These idea might sound very silly, but this can help a person with a disability live a much more independent life. I have recently reached out to Simone about possibly helping with a new secret project that I will share soon. I hope you like her videos and they inspire you to create something even if it is useless.

Missing In Action

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The following is not my typical review or upbeat writing. As many people might have noticed it has been quite a long time since I have written anything. I am sure some people might have given up on the idea I would return, some people might be wondering where I went, and some people might not of cared. So here is where I was and where I am going.

Last year was one of the absolute hardest years of my life and that is saying a lot as my life has had many crazy twists. For quite some time I had been battling an upper respiratory infection which kept coming and going. Soon into the year I lost my cobra health insurance and I spent an endless amount of time on the telephone trying to figure out how to get Medicaid. First, I got Florida Medically Needy Medicaid which was an absolute disaster and put me into debt. After about two months I went on Florida Medicaid which makes things complicated, but was a huge relief.

During all of this I broke my left arm while changing my shirt. I went to see an orthopedic surgeon who said I had a cyst in my arm. The orthopedic surgeon said I needed to have an MRI and see an orthopedic oncologist. I was very nervous and began taking it one step at a time. I was also in an extreme amount of pain, but I have to be extremely careful as narcotics can not suppress the pain, but also suppress my already compromised respiratory system. The break in my arm caused many issues because I use it eat, use my phone, type, for balance, and to position myself. A few weeks later I went to get an MRI as recommended and during the transfer from my wheelchair to the MRI I severely injured my left hip. I still do not if I broke it or just severely strained it. A week after I injured my hip I was getting dressed and trying not to hurt my hip or arm when I over stretched my right knee. I was already not sleeping well from the pain in my arm and hip, but now with the added pain of my knee sleeping was not an option. To top things off the upper respiratory infection I had came back with a vengeance causing pneumonia. While being treated for the pneumonia I found out that my chronic anemia also came back to the point my skin was almost translucent. At this point I was in severe pain, had literally not slept for more than one hour a day in over two months, could barely eat, and could hardly breathe.

I wish I could say this was a dream, nightmare, story, movie, or even an exaggeration, but it was not. It was one of the hardest times of my life physically, emotionally, and monetarily. I am not telling this story because I want pity or sympathy. I am telling this story because this is where I have been and what I have survived. I found out after doing the MRI I have no cyst in my arm, but I do have osteoporosis. My hip and knee have fully healed. My upper respiratory infection and pneumonia are gone. My arm is no longer causing me pain, but is still swollen and I am slowly working to regain strength. I continue to monitor my chronic anemia, but it is under control. Soon I will begin treating my osteoporosis. I am also off all narcotics and sleeping through the night.

I want to thank all of my friends and family that were there for me during this time. I know I might not have been the greatest at staying in touch, the happiest to be around, and or the nicest. I also know I might caused you a lot of fear and or worry.

I love life, but sometimes it just sucks and we learn to fight for that better day. In conclusion, I am still getting my strength back, but I am hoping to begin writing a lot more so please stay tuned. Over the last few days I have begun typing with two hands again and begun be able to feed myself. These might seem like simple tasks to many, but it means I am going in the right direction and slowly getting my independence back.

Delivering More Than Happiness

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I recently purchased a pair of shoes from Zappos for the first time. I placed my order late on a Saturday night and on Monday the shoes had arrived. I was very excited that I found a shoe in my size as I typically have a lot of difficulty given my small feet. Once I tried on the shoes I found that they were to tight. I called and they told me I would have the larger size the next day and just give the delivery driver the shoes that did not fit.

I had previously read Delivering Happiness by Tony Hsieh about Zappos. I expected good service, but was really amazed by the speed of my order, their return policy, and how helpful the staff was. My amazement did not stop there. A few days later I got an additional package from Zappos with a handwritten note from Zaid the customer service representative that helped me place my order. Along with the handwritten note was a throw blanket.

I do not think Zaid and Zappos have any idea what this gift means to me. Due to my disability I am always cold. First, I am very thin which does not help. Second, I take a beta blocker which causes me to be cold and thyroid medicine that causes cold intolerance. Last, I suffer from anemia which makes it hard to stay warm. I recently found out that to control my anemia I need to have a series of iron infusion treatments. These treatments last about forty minutes at my doctors office which is extremely cold. Just before I received this gift from Zappos I was looking to buy a blanket, but thanks to this gift from Zaid and Zappos I will be feeling warm and loved. Thank you Zaid and Zappos.

Magic Wheelchair

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I recently discovered a nonprofit organization called Magic Wheelchair that is different type of a charitable organization. This nonprofit organization is not looking to cure any disease, solve a complex problem, or the typical goals of a nonprofit organization. The focus of Magic Wheelchair is to create Halloween costumes for children in wheelchairs. If you look each year on Facebook, Twitter, Pinterest, and other social media outlets you will see some awesome and creative ideas. Magic Wheelchair is a nonprofit organization helping to bring these ideas to the children.

Are sport utility vehicles the new minivans?

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Many years ago the main vehicle of choice for persons that were wheelchair bound were large full size vans. Over the years this changed and the vehicle of choice became the minivan. I have only used minivans and for the most part they do their job. The simplistic design of the modification, the size, and gas mileage make it very desirable. The truth is there is very little that is cool about a minivan. You can dress it up, trick it out, and fill it with luxury, but at the end of the day it is like putting lipstick on a pig.

Now there are several sport utility vehicles designed for persons who are wheelchair bound. These sport utility vehicles include the Mobility Ventures MV-1Fiat 500L, Scion xB, Kia Soul, Honda PilotFord Explorer, GMC Acadia, GMC Acadia DenaliGMC Yukon XL, GMC Yukon XL DenaliChevrolet Traverse, Chevrolet Suburban, Buick Enclave, and Cadillac Escalade ESV. These vehicles are available through Mobility Ventures, Freedom Motors, BraunAbilityMobility SVM, and All-Terrain Conversions.

Have you tried any of these or other wheelchair accessible vehicles? Please share your experiences in the comments section below.

Happy Birthday ADA

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Today, July 26th the Americans with Disability Act turns 25 years old. The Americans with Disability Act is a law designed to make the United States accessible for persons with disabilities. Originally enacted in 1990 it has been updated over the 25 year period.

The Americans with Disability Act is a great tool that has literally and figuratively opened many doors for persons with disabilities, but it is not perfect by any means. The biggest challenge for persons with disabilities is the fact that our abilities and inabilities are extremely unique. Each and every persons has certain strengths and weaknesses. The best accommodation for one person may not be the best accommodation for another. For example, I have recently been looking at refrigerators and many are rated accessible by the standards set in the Americans with Disability Act, but these refrigerators are still not accessible for me.

My advice is always follow the regulations in the Americans with Disability Act if for no other reason then for not getting sued. Just be there to assist a client, friend, and or family member that has a disability. Do your best to assist them even if that means going above and beyond the Americans with Disability Act. For example, if the door to your store is legally considered accessible by the Americans with Disability Act, but you see someone in a wheelchair struggling offer to hold it for them.

I see the Americans with Disability Act as a set of legal guidelines for us to follow. I also do not believe that it should mean we ignore what is right in front of us. We have a moral duty to try and provide the best services for everyone regardless of our abilities or inabilities.

I believe that the Americans with Disability Act has done some amazing things for persons with disabilities, but I believe that it should be a living document ever evolving and expanding. I feel that the United States and the Americans with Disability Act is amazing, but we can continue to learn and make things better.

National Mobility Awareness Month Local Hero Contest

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I have recently entered the 4th Annual National Mobility Awareness Month Local Hero Contest which is run by the National Mobility Equipment Dealers Association. The winner of the contest can win a new accessible vehicle. I am not sure if I will win or not, but I only have a chance if people vote. Please vote each day through May 31st, 2015 and remember to answer the bonus question. To vote click on the “Get Started” button below which will take you to my profile page and to find out the answers to the bonus questions follow me on Twitter @zkylet.

Getting Closer

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A while back I wrote the blog entry One Step Closer about how the Florida International University Electrical and Computer Engineering students were assisting me to make my kitchen accessible. The students just finished their prototype for their senior project. They are now in a competition and need help getting votes. Please help me support them back by liking their video at https://www.facebook.com/Savi.Perez/videos/10153298493187803.

Home Automation Guru

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This blog and my projects have led me to meet some amazing people. Their assistance and support has done so much to help me. One of those people is Matt Chiste, Home Automation Guru, who recently wrote a blog about the CastleHub where he mentioned this blog and me. Please check out the article by clicking here.

 

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