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  • kook101kook101 Posts: 1Member
    Photogenic First Comment
    Hello!

    I'm Jaekook, a graduate student at the Interactive Telecommunications Program at New York University, working on the project, "How technology can help the people with paralysis?". I'm looking for a person who could share their story. After desk research, I currently need a voice from the people who have actual experience to empathize them and recognize the real problems. Your story will significantly help to improve the research and understand the circumstances. And I'll really appreciate it.  If you are willing to support this research clearly, please reach out below contact, and we can schedule an interview. If you're live in or near New York, It would be a great pleasure to meet you in person. 

    And I fully understand this could be sensitive personal information, I'm not going to share your experience anywhere, no photos during the interview process, and not using your name for the report and project document without your permission. 

    Thank you for reading and have a great day!

    Best,
    Jaekook Han

    [email protected]
    (917)822-5408

  • deborahvickdeborahvick Posts: 37Member
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    edited February 28
    Hi, I'm Deborah. I'm currently a stay at home mom, though if I'm not at Stanford for appointments, recovering from said appointments, I will usually be embedded in one of my many community service programs and/activities. I am an active scout leader for both cub scouts and Scouting BSA as well as a patient advocate. I believe we have a vital perspective and a voice that must be heard by our politicians.

    I had for so many decades planned for a career in law and politics. However, my body will not allow for this. That, however, does not mean our voices are any less valuable. In fact, they are more so, now than ever. With all the changes happening in the medical community and all the hopes we must jump through for basic treatments, none-the-less any items that will increase our quality of life, we must work together to show the strength of our numbers and our value both as human beings and as a number on paper. (As so many of us in the advocacy and political world know this number is a value the politicians look for.)

    My Intro....

    I have a slightly different story than most of you as I am not paralyzed but mostly confined to a wheelchair as I have severe joint dislocations, subluxations, muscular spasms and weakness caused from a combination of rare diseases including Ehlers Danlos, Myasthenia Gravis and Dysautonomia Dysfunction. I am also dependent on O2 as my lungs no longer work at a functioning capacity and braces from head to toe to serve as an exoskeleton.  I do have nerve damage and weakness as well. I am also fused from C2-T2. 

    As with do many of you, I am constantly faced on battling and accepting the "new norm", which for me may change from moment to moment.  

    Today, as my fatigue is pretty high and while I finish my current infusion treatment, I will keep the message short. I will say I am very happy to be part of the group and look forward to working with everyone soon!
    Don't let today's struggles keep you from enjoying the days in yet to come!- Deborah Vick
  • TpaBayJeffTpaBayJeff Posts: 7Member
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    Hello,
    Jeff, a 53yo incomplete quad (C2), from Tampa here. I'm new but not recent. Became paralyzed May 2017, but only recently have I been discharged from a SNF. This after a month in the hospital followed by 4 months in an acute care facility. Was robbed of an opportunity to enter a PT/OT inpatient facility due to a wound caused by the hospital. Twenty-one months later, I still have remnants of the wound. The negligence required me to have a large portion of my tail bone and muscle removed. It also required a reversible colostomy, though it may be unlikely to have it reversed.
    I've volunteered for the advocacy program. Having sensory overload when out in public, yet going through bouts of loneliness due to not having 24/7 attention. 
    Open book here. Have many interests and experiences outside of the realm of this relatively new way of life. Can offer an ear and shoulder to others...and am in need of mentoring as well.
    I look forward to meeting/chatting/talking to others very soon.
  • MichaelSandersMichaelSanders Posts: 0Member
    Hi Everyone, 
    My name is Mike Sanders and I am the Director of Marketing for a non-profit called NTI that helps place individuals with disabilities back into the workplace.  I manage the marketing efforts for our two programs, LandAjob.org and NTIatHome.org, to help people gain job assistance inside and out of the home.  I've dedicated my life to helping and guiding people.  In life, I'm pretty happy to be working where I am so I can use my skills to helping others.  Let me know if you want to connect.  I love getting to know people as everyone has a unique story to tell. 
    Kind regards,
    Mike     
  • heatherkrillheatherkrill Posts: 21Moderator Moderator
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    edited March 7
    Hello Reeve Community, 
    This is Heather Ehrman Krill, and I write a bi-monthly blog for the Reeve Foundation in addition to my writing related to the Anatomy of a Writer Wife Teacher Mom.  My "real" job has teaching high school English teacher for 23 as well as being a wife to Geoff, a T7-8 para since 1995, and mom to Carver and Greta, ages 9 and 7 respectively.   My husband is a professional skier who travels the better part of the winter consulting both adaptive sports programs as well as regular ski schools as a member of the PSIA National Team.  In the summer, he runs Eastern Adaptive Sports, which gives people with physical and cognitive disabilities, as well as their families, the opportunity to water ski, cycle, fish, and hike with a wide variety of adaptive equipment.  Our life together is full of adventure as well as challenges, but we are trying to model for our children as well as others in the adaptive community that with a positive attitude and good friends, we can tackle just about anything.  I started blogging a few years ago to generate interest for a novel I wrote whose main character has a spinal cord injury and was trying to have a family via In Vitro Fertilization.  The blog then took on a life of its own, which happens from time to time.  Thank you to the Reeve Foundation for allowing us to share our story in the hopes that it can help someone else through a variety of resources.  
    Take care!  
    Heather
  • iamdadmaniamdadman Posts: 173Moderator Moderator
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    @alaird
    Glad to have you and Kerry on board.  It's so funny how things work out.  Someone walks out of our life only to reappear at exactly the right time.  Much love and many blessings to you both...
  • arethamorcearethamorce Posts: 4Member
    First Comment
    Hi, Newbie here, i love reading, just browsing the net hpe i can get sometihing interestinghere. thanks for accepting,  have a nice day to all
  • iamdadmaniamdadman Posts: 173Moderator Moderator
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    @arethamorce
    Hi Aretha, anyone named Aretha is okay in my book.  She was the Queen of Soul.
  • bigwave916bigwave916 Posts: 13Member
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    Hello, 
    I'm not new here, but it seems a lot has changed since I was a newbie.  I never really got the level of interaction here that I was looking for, but I see that the activity level is much higher. Id like to have peer support, advice, sympathy, motivation, or basically just someone to talk to.

    I am paralyzed waist down. My paralysis was caused by a cyst at C7-T1 blocking blood flow arteries of the spine resulting in Anterior Spinal Cord Syndrome. This came on over a matter of 4 or 5 days in September of 2017 and took 4 visits to 3 hospitals before they realized it wasn't sciatica, but a cyst that was causing my pain and paralysis. The 4th hospital performed surgery to remove the cyst and to repair as much damage as they could from C-7 all the way down to L-1. I was in the hospital from September 27th surgery until November 8 after 2 weeks in Infectious Disease and 6 weeks rehab.

    I just learned this morning that my wife had been told the day of my surgery that I wouldn't walk again, but she decided not to tell me.  So I've been going on 18 months thinking I just needed to work hard at rehab and good things would happen. I was frustrated with rehab because the focus was on improving my life in a wheelchair and I wanted to work on walking again. Today, I don't know what to think.  I don't mean to complain because one can always find others who have been less fortunate. I've been through two falls with bilateral hip fracture the first (6/18) and then right leg fractured in two places (9/18).

    I retired just 5 months before my paralysis. I had everything figured out.  I was working at the ballpark of America's number one minor league baseball team, the Durham Bulls. I had plans for golf trips, and free time to work on my hot rod convertible and to travel to car shows and other events.  I've ridden Harley-Davidson motorcycles in 43 of the 50 states and had a goal to make it to all 50 before I die. I was active in the Patriot Guard Riders and stood the flag line at many a honored veteran's funeral.  I had my first new truck in 17 years and a lot of projects planned around the house.  I felt I had the world by the tail and my life was working out just as I'd planned.

    Today's news has me feeling like I should sell everything I own that requires standing and walking and just start preparing to spend the rest of my life in the bed and in my chair.

    If you read this all the way through, I thank you. It was therapeutic for me to write it.

    Regards,
    Dave
  • iamdadmaniamdadman Posts: 173Moderator Moderator
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    @bigwave916
    Hey Dave,
    My friend, I can so relate.  I was 59 when I was injured in 2010.  I had been fortunate enough to have retired in 2006 at age 55 and was doing many of the things you described you were looking forward to.  I was playing golf, riding my bicycle (not motorcycle lol) going on walks with my wife, things around the house and playing with my granddaughter. 

    My wife, who is a retired nurse, was told before my surgery that I would never walk again.  She didn't keep that from me but I didn't believe them.  I think that the vast majority of doctors will say that not to give false hope.  I am sure that your wife was trying to protect you and not take away your hope.  I too was frustrated that during rehab, they were teaching me wheelchair skills, transfers, how to do activities of daily living and not getting me in a stander or suspended on the treadmill.  You know, preparing me to walk again. 

    The first 18 months were the hardest.  I really wished I had died instead of ending up in the blankety-blank wheelchair.  I truly thought my life was over.  I couldn't do anything, not even lift my head off the pillow.  My wife, did literally everything for me.  My injury is T2 and I have nothing from the nipple line down.  I felt like life wasn't worth living and that I had lost everything that was important to me and enjoyable.
    I don't know if you have ever seen the movie Shawshank Redemption but there is a line in that movie.  "You either get busy living or get busy dying".  That rang true to me because I know that I wasn't ready to get busy dying.  So, I had better get busy living. 

    I started getting stronger, gaining independence and today, aside from helping me with my bowel program and inserting the foley at night, (my injury also caused me to lose the sight in my left eye) I am self sufficient.  I also changed my perspective.  I stopped thinking in terms of everything I had lost and started thinking in everything I still had... and I had plenty.  A loving wife, three great kids, brothers and sisters and a network of friends all of whom were ready to help.  One other thing I would suggest is finding a network of support.  For me the first time I was with a group of people in wheelchairs, I immediately felt better.  Here there were people who understood on a personal level what it meant and felt like to live life in a wheelchair.  For me, no one else could do that, not my wife, kids, family or friends because they were all able bodied.  If you don't have that, I encourage you to seek it out if at all possible.
    Let's face it Dave, being paralyzed SUCKS!  There is no way around that especially when you are injured late in life like you and I were.  We had our retirement plans and looking forward to so much stuff but God or something had other plans in store for us.
    So the $64,000 dollar question is, "What now?"  Well, that is up to you and what you choose to do.  Life goes on with or without us but I want more time with my wife, kids, family, friends and the activities that I can still do.
    I wish you nothing but the best.  Scott Hamilton once said, "the only disability is a bad attitude".
    Joe    

      
  • iamdadmaniamdadman Posts: 173Moderator Moderator
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    @kwig5
    Hi Kathy,

    Very nice to meet you.  I am Joe and I am a T2 incomplete.  I too, suffer from 24/7 nerve pain and nothing I have tried relieves it at all.  I applaud and respect you maintaining a positive upbeat attitude.  I have been injured for 8.5 years but I was injured at age 59 and I am getting ready to turn 68.

    Joe
  • 619Drake619Drake Posts: 19Member
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    Hello, I am T5 para who has been paralyzed from a motorcycle accident since 1989. 30 years in a chair has been a long time. Lots of experiences both good and bad. After my accident I went back to school (I had a BS degree in Psychology) and got a Masters in Rehabilitation Counseling from San Diego State University and I got a job in the Workers Comp dept of a major Hospital. Unfortunately I developed a cyst in my spinal column that causes severe pressure and pain if I sit for long periods of time (like 8 hours, 5 days a week). I had to quit my job and am now on long term disability. I live in the San Diego, CA area and I enjoy a city that is pretty good in accessibility. In the past, I worked on a committee that helped address concerns about accessibility for mobility, blind and hearing impaired residents and visitors. My favorite things are photography, dining, the Padres and our world famous San Diego Zoo. I hope to learn some things from others connected here and if I can provide my personal perspective on topics as well.
  • KJCaregiverKJCaregiver Posts: 1Member
    First Comment
    Hi, I'm the caregiver for my disabled veteran spouse that is classified with an SCI but due to his Primary Progressive MS.  This makes a little more unique - he has lesions in his brain and spinal column - 7 total.  Thankfully his disabilities are mostly mobility - mind is still intact.  It's very confusing to me to see the terms here - quads, para, etc., but still see people able to tie their shoes, drive, etc.  My husband's disease has progressed to the point he has use of only one limb - his non-dominant arm and hand.  I call him a triplegic, but I'm not sure if that's the correct label or not.  He's confined to his motorized chair or bed, and truly cannot stand or do much other than feed himself and drive his chair (on good days).  It's a whole new world that we never anticipated being in.  Finding others in similar circumstances certainly help us cope. 
  • iamdadmaniamdadman Posts: 173Moderator Moderator
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    @KJCaregiver
    Hello KJ,
    Welcome to the club that most of us would prefer not to be in.  Even within a specific category, things can be different.  For example, a para is basically someone who has upper body function (hands, arms, core) but no or very little function below the lumbar area.  Having said that, there are different levels of function within paraplegics.  I am a paraplegic having full use of my arms and hands but since my level of injury is relatively high, T2, I have no core muscles.  Someone who is also a paraplegic may have a lower level of injury, say T12 or even L1 and have more function of their core muscles.  I am not a medical expert nor a doctor but the same holds true with persons categorized as a quadriplegic or tetraplegic.  This can mean they have very little or no upper body function such as using their arms and hands.  I guess my point is that there are many sub-categories within a major category such as paraplegic or quadriplegic.  Your husband is going to need support as are you.  Depending on where you live and have access, it would be great to find support groups for both you and your husband.  After all, this didn't just happen to your husband but to you as well.  For me, after being injured, it was so helpful to be around other people in wheelchairs.  Another person in a wheelchair understands as an able bodied person cannot.  They know first hand what it is like and the challenges people in wheelchairs face.  Try to find some kind of support system for you both.  Check with hospitals, the PRC (Paralysis Resource Center) VA and do Google searches.  The most important thing to realize is that YOU ARE NOT ALONE!  People in the disabled community are there and want to help.  Reach out and you will get support.  All the very best to you both...

    Joe 
  • iamdadmaniamdadman Posts: 173Moderator Moderator
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    @619Drake
    Hello my friend and welcome to our club.  You will find understanding love and support amongst this group.  I lived in San Clemente for almost ten years and returned after I was injured to Project Walk in Carlsbad.  You must be happy about the Padres getting Manny.  I went to a couple of Padres games while I was down there in 2012, 2013 and 2014.  Met a lot of great people.  I am sure you have a lot of wisdom and information to share with us on this website.  

    I am a T2 injured in October of 2010 so not nearly as long as you.  I also was injured late in life, I was 59 and enjoying retirement since age 55.  It was a traumatic change.  I live in Washington state and quit going to PW after 2014.  At first I loved it.  It was like a big family where everyone cared and looked out for each other.  After that they started firing a lot of great people and became focused on the almighty dollar up to the point where they shut down.  I remember going to the beach and getting in one of the beach wheelchairs and being able to get in the water.  It was freaking awesome.  

    Anyway nice to meet you and look forward to seeing more posts from you.

    Joe
  • korangkorang Posts: 1Member
    First Comment
    edited March 22
    Hi !!!
    Names's Korang. I have no experience with spinal cord injury, I am just here out of curiosity and to learn.
  • bigwave916bigwave916 Posts: 13Member
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    Hello and thank you to all who answered me directly.  I appreciate your sharing your experiences, but most of all your encouragement.  I have located an SCI support group which just so happens to meet at the hospital where I am still doing rehab.  I'm looking forward to joining them on April 3rd.  I'm trying to plan things so I have something to look forward to.  I have a hand cycle that I'd like to get going on and we're just working that out. I've had a problem with leg and hip fractures, so for sure, we are taking it slow.  Best to everyone here, and i look forward to sharing experiences with all y'all. (as we say in the south)
  • iamdadmaniamdadman Posts: 173Moderator Moderator
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    @bigwave916
    Hello and welcome to our group.  I dig that you are already trying the hand cycling thing.   That is awesome.  I want to do it as well but haven't gotten down the whole transfer thing.  I am so glad you found a support group.  To me that made all the difference.  There was something about being around a lot of people in wheelchairs.  It kind of leveled the playing field.  Best of luck in all your future endeavors.

    Joe
  • iamdadmaniamdadman Posts: 173Moderator Moderator
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    @korang
    Hello Korang and welcome to our group.  Do you take care of someone with paralysis?  Do you have friends with paralysis?  I was just wondering if you have any type of relationship to someone with SCI.

    Joe
  • 619Drake619Drake Posts: 19Member
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    @iamdadman
    Thanks for the invite. I am looking forward to a good Padre season (going to Sunday's Season Opening Weekend Game). I was at Petco Park opening day April 8, 2004 for the first game, it was my birthday, what a treat! I look forward to participating in the discussion, learning and adding insight where possible.
  • TpaBayJeffTpaBayJeff Posts: 7Member
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    @619Drake
    Moved to Tampa in Nov 2016 from SD & OC, to be close to family. Miss it greatly. I became paralyzed May 2017, so it was good I was close to family when it happened.

    Welcome to the group.
    Jeff
  • deborahvickdeborahvick Posts: 37Member
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    I lived in San Diego for many years and I did a lot of the adaptive sports in San Diego. Also was active with the day in the bay I'm so much fun and skiing. Miss adaptive Sports to had down there especially things like kayaking and surf kayaking in la jolla. I was going to do it after surfing to in San onofre but didn't get to it before leaving that area for San Jose
    Don't let today's struggles keep you from enjoying the days in yet to come!- Deborah Vick
  • iamdadmaniamdadman Posts: 173Moderator Moderator
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    @deborahvick
    Hello Deborah,
    I lived in San Clemente from 1997 until 2006.  I loved it.  I went down to Project Walk for three months in 2012 and ten months in 2013 and 2014.  At first it was a total blast; like a big family but then it changed due to the almighty dollar.  I loved the fact that they had beach wheelchairs so I could get in the ocean.  Made a lot of friends down there that I stay in touch with to this day...  very nice to meet you...
  • iamdadmaniamdadman Posts: 173Moderator Moderator
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    @TpaBayJeff

    What part of Florida do you live in?  I have a sister who lives in Venice.  Before I was injured we used to go and visit and I could not believe how warm the water was.  I didn't like it.  It was like taking a warm bath.  I want the ocean to be cold...
  • jaarchjaarch Posts: 48Moderator Moderator
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    @MuDDog Welcome aboard!
  • iamdadmaniamdadman Posts: 173Moderator Moderator
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    @MuDDog
    Love that smile brah.  Glad to have you here...

    Joe
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