Sorry to go off on a tangent above, its just something we have been working on all year. I partnered with Far West Wheelchair Athletic Association so donors can benefit from non-profit donations. (They were also awesome last year and lent me 10 chairs for my cub scout camp- actually two week long camps where I led a disability awareness program.) Scouts had the opportunity to try and maneuver through different challenges and try and dribble, shoot the basketball and not get up when it bounced out of reach. :-)I showed pictures from kids playing power soccer chair and blind skiing to adults playing lacrosse and paralympic sledge hockey team. I showed videos of wheelchair BMXing and myself at different stages in sports like the sledge hockey and adaptive Taekwondo and my adaptive wedding dance.Sports has come so far. Though I had lost my ability to do so many adaptive sports that this is such an amazing experience for me. I am having little side affect from a day and a half of skiing. Can't wait for tomorrow. I saw a video from yesterday on a lower level mountain. Tomorrow i have to use the a the diamond biski with fixed outriggers in the morning but get to use the Tetraski in the afternoon.deborahvick said:
@AskNurseLinda I noticed you were mentioning adaptive wheelchairs. Right now my son and members of my scout troop we are trying to raise funds to purchase a all terrain off roading wheelchair as we have no means to accommodate scouts and scout leaders with mobility impairments. I know I can not get around on my own with my freewheel and service dog and need to have additional people assist me. We are trying to raise funds so that we can be able to reach out and recruit youth from the Far West Wheel Athletic Association, though i do not want to do so until we have a means of better access. I am currently creating MyIntent bracelets and selling them as part of a fundraiser for our efforts. (and medical causes.) I will also be at the Bay Area MakerFaire.I'm rather passionate about this because it not only affects paras, quads, inbetweeners (like me- made up word) but also people with invisible limitations. For example, I had several cub scouts not continue on to scouting bsa because they knew they couldn't hike or go to the camps.Any fundraising ideas or contacts people have would be greatly appreciated!
Hi I'm Emma. I've been a T12 para for 22 years after a fall. I enjoy handcycling, wheelchair basketball, kayaking, backpacking and long distance National Trails and cycle trips. I'm a firm believer that staying physically fit and eating well helps you keep mentally fit. I like to wake early and see the sunrise, I think it's the most beautiful time of day to have time with oneself. So I go to the beach everyday to watch the sun and walk my dog. I practice yin yoga, which I find helps with my spasms and keeps me flexible. I work at home home full time, and I live with my husband, dog two cats and chickens!
@tooalone Welcome to our community. Yeah, I know it sucks to have to belong to a community like this as opposed to a community of dashingly good looking, funny, smart, wealthy celebrities but it is what it is. So, if I read your story correctly, you still don't know what caused the problem? The neurologist or any of the other doctors had a diagnosis? Man, that kind of sucks! When did this happen? I will tell you from my own personal experiences that when you have a traumatic injury, you quickly realize the limitations of the medical profession. Keep coming back. I think if you share your story and read others, you will see that life goes on whether you enjoy the ride or not. Hang in there...
I'm online in this community every Wednesday from 8-9 PM ET to answer your SCI and paralysis related questions.
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One of the difficulties with a healthcare issue is when you do not feel anyone is listening to your symptoms. Some diseases are so rare that healthcare providers do not often see them or perhaps never see these cases. That does not mean you should be ignored. If you are not finding help with your healthcare provider, you can ask for a second opinion or just get a second opinion on your own. Most healthcare professionals should honor a second opinion request. It will help them as well. However, sometimes people are sensitive about perceived challenges. If you do decide to get a second opinion, find a specialist, not just another doctor. If you have a neurological problem, see a neurologist perhaps in an academic medical center. This is where most rare cases end up so they see a lot of different types of things than your local physician.That does not mean your local physician is not a great doctor, it just means others might have more exposure to unique cases. There are literally thousands of neurological diagnoses so it can be a challenge. Pain is a unique consequence of many types of diagnoses. A pain specialist can help with treatments that are not typically offered. Neuropathic pain is one of they most difficult types of pain to treat. Sometimes a neurologist or spinal cord injury specialist is best for this treatment and sometimes a pain specialist is best. However, not everyone is experienced in this type of treatment. Before making an appointment, ask if the specialist has experience in treating individuals with neuropathic pain. This is a yes or no question. If the response is that the doctor treats all types of pain, but they cannot specify neuropathic pain, move on to another choice.If you do not have a case manager through your payor, now is the time to get one. The insurance or medicaid case manager will know physicians who treat unusual cases. They can help direct you to a person that will be in their system which will help you financially. If you do not have a case manager, call the number on the back of your insurance or medicaid card. It is your right to have a case manager assigned to you. A diagnosis will work in everyone's favor, yours and your payor's as it will direct your treatment plan and provide you with the resources that you need. Hope this helps. Nurse Linda
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This project was supported, in part, by grant number 90PRRC0002, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy.
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