InstantForum.NET v4.1.4Spinal Cord Injury and Paralysis Forumhttp://www.spinalcordinjury-paralysis.org/forums/Information@ChristopherReeve.orgSun, 05 Feb 2012 01:31:08 GMT20http://www.spinalcordinjury-paralysis.org/forums/Topic4423947-6631-1.aspxWendy Crawford, a professional model who sustained a spinal cord injury in 1984, resulting in quadriplegia, spent years of frustration not being able to find answers to what seemed to be simple questions regarding everyday women’s issues for individuals in wheelchairs. She decided to take action by creating a website to address cover these topics. In 2002, her vision became a reality - mobileWOMEN.org was launched and has had loyal readers and interactive participants ever since.mobileWOMEN.org is a unique online magazine where women in wheelchairs can find answers to questions about health, sexuality, parenting, fashion, and other topics that are not typically addressed in women’s mainstream media. The mission of mobileWOMEN.org is to bring together current and accurate information on issues of interests to the disability community and to enable people to share and learn from one another.Wendy has stated many times, “Our most valuable resource is each either.” So it is not surprising that the majority of writers for the site have been women with disabilities - who better to share on these important topics? One of these writers is Kelly Rouba, former Ms. Wheelchair New Jersey, author, and tireless advocate for people with disabilities. Kelly, who has juvenile rheumatoid arthritis, took a deep interest in the site and joined Wendy to become a co-editor of mobileWOMEN.org. Completing the team is co-editor Cheryl Price, wheelchair tennis player, mother and former editor of a Miami entertainment newspaper who became paralyzed at birth. With feedback from readers all over the world, this dynamic trio put their heads together and is now ready to re-launch a new and improved mobileWOMEN.org. The team confirms that site contains all the important information that it did before, but they are excited to introduce three new innovative features! The first feature allows women to upload their own personal video clips as a way to educate and inspire others through their stories. The second is a new and improved forum that allows women to ask questions and share ideas on everything from women’s issues to adapted clothing ideas on the latest looks in fashion. Lastly, the “Featured mobileWOMAN” section introduces readers to phenomenal women throughout the world. Whether they are leading the way in their career, athletic endeavor or in other areas of life, these women’s stories are compelling and meaningful.mobileWOMEN.org believes that women with disabilities steer their own lives. Empowered by knowledge, they are having children, pursuing careers, competing in professional sports arenas, becoming community leaders, and living life to the fullest! This overlooked segment of the population refuses to be overlooked anymore and mobileWOMEN.org is excited to be in the forefront where knowledge is expanded and success celebrated, thereby broadening the horizons for women in wheelchairs all over the world! Visit mobileWOMEN.org to learn more.Sun, 26 Sep 2010 14:54:10 GMTWendyhttp://www.spinalcordinjury-paralysis.org/forums/Topic4417445-6631-1.aspx19 years ago I suffered a C6 spinal cord injury while diving into the ocean here in NJ. For the majority of those last 19 years, I've been pretty healthy. Although, I'm very mindful of not letting my basic health slip to the point of needing hospitalized, I've had the unfortunate luck of needing to be admitted into hospital from time to for short stays for various reasons. Being paralyzed does not make getting admitted easy for various reasons. There are a lot of things to consider when you're getting admitted to a hospital that may not be too familiar with what your personal care requires as a paralyzed person.I'm going to suggest some tips that have worked for me when I've gone in the hospital for short stays. Consider them when you have time to plan a hospital admission.1. Have all your insurance information with you.2. Bring a detailed list of all your medication you take.3. If you have a cell phone be sure you have it fully charged and you have your charger.4. If you use a mattress overlay like I do, bring it with you. Some hospitals might not have what you use.5. If you are on a bowel program, have what you use at home handy with you at the hospital. 6. If your family or care giver can visit you on a daily basis while you are admitted, I would encourage that. You may find the hospital might be short staffed and you might added attention. If your caregiver is available to be at the hospital with you ask to have them provide support to the hospital staff.7. Always maintain a clear line of communication with the hospital staff and explain your needs to the staff to ensure you do not have complications.Thu, 09 Sep 2010 17:06:20 GMTPRC_Haroldhttp://www.spinalcordinjury-paralysis.org/forums/Topic4411764-6631-1.aspxI would sure like to see seating "experts" learn how to do their job. I just watched a friend go through pressure mapping twice in the same week. After a terrible first attempt to check his pressure the recommendations to solve the issue went from readjusting chair angles, raising the back height, buying an expensive new cushion to buying a new chair! All he needed to solve the problem was a 1" piece of foam under his Roho a simple $6.00 fix. That was what was suggested by the patient a 34 year para from SCI. Even after the 2nd mapping and the fix the seating "expert" had unrealistic expectations. The first suggestion "Sit in this position only" seriously, no bending, leaning, reaching etc...no air adjustments to the Roho, it's like she had something more important than her immediate client. It was interesting too that her immediate supervisor attended the second mapping with no suggestions and her only assistance removal of an extra piece of foam. If others have been amazed at the level of incompetency with seating or fitting of wheelchairs please share your stories.Thu, 26 Aug 2010 20:15:11 GMTThe Token Gimphttp://www.spinalcordinjury-paralysis.org/forums/Topic4394190-6631-1.aspxAAN1096 POSTED:My brother has a baclofen punp for his spasms and has had it for 6 months now. His spasms were so bad he would nearly kick the therapist in the forehead while she was stretching his legs! He gets the medicine increased periodically a little at a time as needed. He does experince vibration sensations afterwards but that subsides after the first day.They feel slow increases of medicine is best. They seem to have calmed down considerably! since his last increase, which he is still on a low dosage. He was told that some spasticity can be a plus for circulation and muscle tone. He also takes Neurotin and Lerika for pain and stinging in his hands and legs that has not subsided as of yet. I hope this has helped you some and your imput on how the morphine is helping with the pain would be appreciated here. p.s. I really hope your friend can find a doctor that can relate to his needs but untill then you will find much help and advice here with the Christopher Reeve Foundation.best wishes,aanPRC_DONNAL ANSWERED:Welcome here! I am glad you found us. As an information specialist, I can mail you information on spasticity and on physiatrists (rehab doctors) that treat spinal cord injuries and the secondary conditions of SCI. Please call me (or any information specialist). The number is (800) 539-7309. My extension is 7202. I look forward to hearing from you. Sincerely, DonnaFri, 16 Jul 2010 11:34:35 GMTGerthrohttp://www.spinalcordinjury-paralysis.org/forums/Topic4400469-6631-1.aspxi am overweight. i was before my accident as well and find that even though i have reduced my caloric intake to about 1600-1800 HEALTHY cals/day, i can't shake the weight and i feel as though i'm still gaining.i am a c6/c7 injury with nerve damage to my arms (incredible pain and severe itching, yes itching! of the nerves in my forearms) as a result, i am unable to use a manual chair and have a powerchair instead. my insurance would not pay for a manual chair with power-assist wheels, which i would have been more than happy with. so my upper body strength is very poor, i'm highly spastic despite a cocktail of baclofen, zanaflex and valium and i also have weird high blood pressure issues (it's up, it's down - for no reason that anyone can ascertain and yes, i'm on BP meds once daily.) before my accident despite being overweight, my BP was normal, even low, and averaged from 100/70 - 120/80.i receive home pt and ot - i would prefer a more aggressive program but the nursing service i use will discontinue my skilled rn care (my foley needs to be changed every three weeks) and wound care as needed (which i haven't needed in 6 mos thank god). my neurologic urologist who work out of a hospital can't guarantee me an appt every three weeks b/c he has a high volume of patients and i could get bumped for an emergency. since he's 40 miles away, i'm not too keen on this arrangement. my regular urologist can't accommodate me, my hoyer and powerchair in his tiny exam rooms.i eat lots of blueberries, cherries, pomegranates (we used to call these "chinese apples" when i was growing up in brooklyn) and acai berries when i can get them from a local spanish produce market but they are expensive. blueberries are supposed to help with nerve regeneration and keeping the urinary tract healthy: http://www.helium.com/items/1391482-nutritional-advantages-of-blueberries and lately, you hear a lot about eating dark fruits as being nutritionally better for you. (so much for the "an apple a day..." saying i guess, unless it's a chinese apple, lol)anyway all these fruits help me manage my bowel regimen as well (the skins are great roughage, i suppose.) i never was much of a meat eater so it was simple to cut that out nearly altogether. i eat lean cuisine, drink soy milk and eat eggs for protein. i can't eat peanut butter much anymore because of meds-dry-mouth-issues. i eat tofu, sushi and sashimi for protein as well but also love the taste! tofu can take on the flavor of anything it's cooked with. i buy the extra firm, squeeze out the water as much as i can, cut it into cubes then freeze it. then when i cook with it, it has a chicken consistency.i like greens (except peas blech!) even collards and mustard greens (and i'm white - my gma was from AR, gpa from KY and my mother grew up eating them as did i) and i like all kinds of beans. so i guess i'm eating as healthy as possible - why can't i shed the pounds? i am guilty of eating ice cream maybe 3 times a week but starve all day to save the cals.so does anyone have any weight loss/exercise suggestions?thanks!Fri, 30 Jul 2010 07:04:17 GMTjeannehttp://www.spinalcordinjury-paralysis.org/forums/Topic4395684-6631-1.aspxI would be interested to hear some feedback from others regarding their experience of how they have learned to identify and appropriately pace activity to avoid fatigue and unnecessary pain. I would think that after more than four years, I would have this figured out. I went on a trip by myself to a nearby city for three days and two nights. I was so miserable yesterday with back and right arm pain that I was certain something major was wrong. Today is much better. I would sure like to learn to avoid days like yesterday!!! :crying:Mon, 19 Jul 2010 23:42:09 GMTratherbflyinhttp://www.spinalcordinjury-paralysis.org/forums/Topic4394177-6631-1.aspxPOST BY aan1096Hi all caretenders! How many of you are out there, up throughout the night every 2 - 3 hrs. turning your beloved paralyzed family member in the bed for pressure relief and cathing? I know there are turning beds on the market but insurance don't pay for that luxury and they are very expensive. Has anyone come up with a idea for this routine?, or is this the only way aside from the turning beds? My sister in law is exaused.Any info. would be appreciated.aanREPLY FROM IVONNE JOLAIN:Dear Ann, My husband and I are in a sense new at these...20 months this Saturday. After surgery for a tumor inside the spinal cord, he is paralyzed from the middle of the chest down. Paraplegic is the term he was given. Bottom line is that when he came home 3 weeks after surgery, he had pressure sores. After 5 months dealing with our insurance company. Finally, we were assigned a nurse practitioner that came to our home to tend to his sores. Through him we were able to contact a company which leases air mattresses. We also invested in a hospital bed and a ROHO cushion for his wheel chair...It has been 14 months now from having these very essential items and no more bed sores. Unfortunately, most insurance companies do not cover these, we have to invest on these very essential items for the sake of our loves one. Perhaps through church, community and/or friends and family you guys can raise some money to get an air mattress and a ROHO cushion for the wheelchair. The ROHO is about a $500.00 investment, the hospital bed $1,000.00 and the air mattress is about $40.00 rental monthly. These are all necessary for the wellbeing of the paralyzed and for the sake of the caregiver. This journey is very difficult at all stages due to the emotional part and the toll it takes on all of us. However, at the beginning it is essential to concentrate in the physical and the person who suddenly is paralyzed. For us the air mattress and the ROHO have been proven to be essentials. I for one, sleep next to my husband's bed in our bedroom in a folding bed. We have another room I can go to but, I can not get use to sleeping in another room. It is bad enough not to be able to sleep in the same bed after 25 years of marriage. But another room I JUST CAN'T. I hope others have more information they can give you. But, please try to help your sister in law, I use to turn my husband every 3 hours for the first 5 months and it is very hard to do this for long. It takes a toll on the body. There are better ways and any help others can offer is always a great blessing. Best of luck to you all, this journey is a hard one..Fri, 16 Jul 2010 11:12:16 GMTGerthrohttp://www.spinalcordinjury-paralysis.org/forums/Topic4394176-6631-1.aspxShelliRN wrote:Hello all! Home Health nurse; all my patients that have experienced SCI and regained near total use of their arms (but not their hands) have some degree of contraction to one or both hands. Mostly, flat out with finger tips curling. I ask, "Do you need braces or splints?" They all tell me they have them already. I ask why they aren't using them and get "Oh, I just don't". They really don't seem bothered! My question(s)- is it an inconvenience? more painful than it's worth? are there better appliances than others? is there something I'm not thinking of or not addressing?I appreciate any contributions!: )HERE IS THE STRING THAT FOLLOWED:Hi ShelliRN, First I will say welcome to the site. I don’t think I have any kind of good answer to your question, but I can relate to you some of my experience from being at Craig Hospital with my husband for 7 months. My husband is a C3-C4 quad and has no function of his arms or hands. He has no contractures. We have religiously done range of motion on him every day since he was injured 8 years ago. When I was at Craig, I met many SCI patients and yes some had contractures of varying degrees in their hands. Depending on the level of injury, some patients actually chose to have a functional grip by letting slight flexion contracture of the fingers occur; meaning they actually used the contractures to their advantage by having splints made that allowed them to use their hands for various ADLs like brushing their teeth, feeding themselves, writing or painting. Maybe if your patient has a higher injury, he might just be concerned about contractures for cosmetic or hygiene reasons. Good ROM and use of resting hand splints at night can prevent severe contracture. Botox can be used if appropriate too. I met several guys trying the botox thing. I have also heard of patients getting tendon transfer surgery to make their hands more functional. I wonder if your patient has addressed his concerns with his SCI doctor or an occupational therapist. Really from what I learned, it is always best to prevent contractures. If your patient already has severe contractures, I don’t know that the splits will help much at this point --------------------------------------------------------------------------------TrishI'm a caregiver for our daughter who is a c5 c6 and she has some use of her hands and arms, Only thing that doesn't help her is not having full tricep usage. Her hands are very flexible and stretched. Her physiatrist (sp) was impressed with how she had worked with her hands to keep them from curling up like most of her patients who have the severely curled up fingers and hard to straighten. Samantha can use special fork and spoon that we found online that's adapted for people with hand function disabilities. I think what helped Samantha was the PT staff at Baylor (while in rehab for 2 months) would put casts on her arms at night to sleep and make her wear splints during the day. It has been 3 yrs. plus some months and she still has fingers that have some function of holding and grasping if not too heavy. She also goes to Roll 2 Walk in Austin,TX every month for intensive boot camp workouts when she's not in school and triceps are beginning to give her more function in range of motion. She can't wait for the day when she can again wash her own hair and blow dry.I would like to let that doctor, who did her surgery (corpectomy) in La. tell me how wrong he was in telling me that she wouldn't have any function in hands and arms. He was soooooo very wrong. Every case of SCI is different and every person is different. She's a fulltime student at UTA in Tx. (was a LSU Tiger) does her own note taking on laptop w/o the aid of a desk b/c most colleges don't have accessible desks for a power chair. Has typing sticks that gives her the ability to type extremely fast and efficient. As you can tell I'm very proud of what my daughter has accomplished to be able to get on with her life. --------------------------------------------------------------------------------JoyceTexas -----------------------------i have a hand brace that i wear sometimes. when i think of it. keeps my thumb out, in proper position. not painful, comfortable, relaxing.BUT, 1. it's hard to get on...2. attention getter, everybody always asks, "What happened?"...3. hard to wash hands...4. can't use hand in regular fashion...brace controls hand...5. hot-----------------------SHELLIRN SAID:That's another forehead-smacking moment for me! A semi-functional grip! I might have gotten there on my own if any of my SCI patients were using manual wheel chairs and observed the use. I'm so glad to have found this site and can't express how much I appreciate your help!!!'Hard to get on' is what I thought was the main problem for my patients, which is why I couldn't understand why they'd decline when I'd offer to help with them.'Attention getter'! I like this one! I wore a splint for awhile after a nerve injury caused by an errant IV cath and told everyone I had injured myself poking nosy people in the eye! 'Hard to wash hands' is one of those painfully obvious ones I hadn't thought about! Thank you!'Can't use in regular fashion'- right, similar to the mention above of having a functional grip.'Hot'- definitely a consideration in Texas!Thanks for all your input! I think at times I'm looking to change or "fix" things that don't need to be fixed. Will take this into account in my future interactions. = )--------------------Fri, 16 Jul 2010 11:09:02 GMTGerthro