LASCI Members Share Advice on Adjusting to Life After Spinal Cord Injury

lascilogoWe are continuously welcoming new LASCI members who are adjusting to life after spinal cord injury. As a support resource, we often call upon our Facebook followers to give support and advice to fellow members who have specific questions or struggles. Recently, we received a question that is universal for people who are new to spinal cord injury.  Here’s some fantastic advice from other wheelchair users.

Question from this week’s LASCI friend, Michele:
“I’m a C5 incomplete tetraplegic for just over two years now. Having a very hard time adjusting to this new life.” What is your advice for Michele? Let’s share some encouragement!  

Due to the overwhelming number of responses, (Thank You!!!) below are just some of the incredible responses we received from our LASCI Facebook members 

Rhenna : I’ve been in a chair for 17 years and still hate it everyday! I have always had a wonderful support system. I get down sometimes, but I do remember I’m still here and it could be worse. Cry if you have to, talk to a stranger, find a support group…it does get better sweetie, it did for me.

David: Focus on what you can do and do it to the best of your ability the more active you are, you will be surprised how many other things you try you will be able to do also. I make a point of completing one task every day so it doesn’t have to be a big thing.

Meria: sorry to hear of your struggles, but it’s early days, I know it sounds odd, but it takes about 5 years to get to grips with everything, but I must say that pic of yours looks amazing, and shows you going out there and doing things, you’ll get through this, you’ve done the hardest part, surviving and your only given challenges in life that God knows you can handle ….keep rolling , keep smiling and don’t stop hoping x

Peer support is often one of the best ways to get back into life after spinal cord injury.

Peer support is often one of the best ways to get back into life after spinal cord injury.

Lindsay: I don’t really have a lot of “advice” as it’s just been about 2 years for me…and half that we legit thought I was going to fully recover. I’m actually in the ER now being evaluated for mental health treatment. And they don’t seem to get it. That it’s not just “I’m sad” but my entire life (a life I loved) was taken away. That I didn’t go to rehab and learn to deal with this or a world that isn’t built for me. But don’t let anyone cheapen your feelings. You have a right to grieve, as do I. But what keeps me hanging on is I believe there is something more to come for us both.  Thanks for addressing this. I hope you find the help you need. I was scared to ask for it but now that I have, I’m humbled by how supportive people have been. Take care of yourself!

Brandon: I’m an Incomplete C-6 C-7 and I’ve learned in my 10 years of being injured that the More Active you are the Better you will Be/Feel…! I’ve def had my good days and my Horribly Bad days. But just keep fighting and it will get easier. Doors will Open and doors will Close… You just gotta remember that when one opens, you Jump through it! And when they Close, you stick ur foot in front of it and Keep it Open! Unless it Slams shut then it just wasn’t meant to be… But “Live your life for You!” Don’t ever let peeps tell you that you have given up or you are not doing enough. Because it’s soooo easy to be on the outside looking in and telling you what they think. Well I’ve learned that only You can tell if you are giving All you can! And Lastly and Mostly, is in our situation we can go to a doc and tell them we have pain and they will write you pretty much Any Prescription you want!So the biggest lesson I’ve learned the hard way is if you Don’t NEED the script don’t let the doc write it! Docs have given me the Heaviest and Most Addictive medications on the market and it is sooo easy to get Addicted and your life begins to revolve around ur Meds! So Advice, don’t take the Meds that you don’t Truly NEED!!

Katherine: Hang in there, I’m a T-12 paraplegic, been like this eight yrs now, first few yrs is hard to grasp but I picked myself up after about two and started college, graduated, I drive myself and do more then I thought I could ever do. Yeah life is different for us in these chairs but we still can enjoy everyday living and doing things, just have to learn to do them different then what we did when we were up walking. But never give up, and keep on smiling. Best of luck to you girl.

Melanie: Honor your feelings. Severe disability is just that – – severe. Sometimes it is all you can do just to survive. Other days you will thrive. In the end, there is joy to be had in spite of the struggles. 

Remember, it's okay to ask for help when you need it.

Remember, it’s okay to ask for help when you need it.

Leesley: I’ve been in a chair for 7 years and yea it’s hard, but try to enjoy life, life is way too short! Pray! God will give u the strength u need! Live 1 day at a time. “WHAT DOESN’T KILL YOU MAKES YOU STRONGER” God Bless u!

Jennifer: I too am a tetraplegic C5’6 my wheelchair hasn’t stopped me from doing anything I really wanted to do. I went college and graduate school, have traveled throughout the country and beyond. You just have to set your mind and way of thinking to a “can do.” Don’t focus on what you lost but what you have and what you want to do. 

Daniel: Never give up 21 yrs and counting it is a struggle at times ever need someone to talk to add me will answer anything I can. Main thing to remember is your not alone. 

Sheree: Keep Active Chica! You’ll Find Your Bliss In Some Sort Of Passion. Try Everything You Can! There’s Plenty Of Clinics & Adaptive Programs. It Helps Keep Sane. Channel Your Calling. XO 

Adaptive sports are a fantastic way to meet new friends and build your own strength after SCI. Find a local wheelchair sports team in your community.

Adaptive sports are a fantastic way to meet new friends and build your own strength after SCI. Find a local wheelchair sports team in your community.

Jessica: Try to hang in there, I’m a t-12 paraplegic iv been in my chair 13 years,the first few years r the hardest but over time it gets a little easier.i drive myself,and i just a baby three months ago.try not to think about all the thgs u cant do,focus on all the thgs u can and will do. 

Tiffany: Keep your head up. Surround yourself with as many positive and supportive people as possible. You can still enjoy life. You will just “roll” through your life now instead of walking. There is always someone worse off than you who would likely trade places with you…doesn’t make it easier, but is something to keep in mind. Take advantage of support groups, the online community, adapted sports activities, whatever interests you. You only get one life to live and even though the way you get around has been altered, you still deserve to have an amazing life and be able to take full advantage of everything you want to do. Make sure that happens. Don’t be afraid to ask for help when you need it, and be persistent when you want something. Don’t ever give up.

Doug: I am a c5-c6 complete will be 2yrs post in October,so I know exactly what you are going through. Every day is a struggle to just get out of bed,but we have to keep doing it. I do it for my girls,my wife,and for the rest of my family and for my self cause there is no point in giving up,there are way to many things out there for people like us to do. Just keep a positive attitude and keep saying if I want to do it then I will do it,it will just take a different way of doing it. You will find that way. Good luck,work hard,and most of all be happy with your self. If you need to talk get ahold of me and we can do this together. 

Garrett: Stay in that manual chair as long as you can, I spent 10+ years in a powerchair and regret it. I was scared about blowing my shoulders out that’s what the docs would tell me. I’v been in my manual chair a couple of years and have had improvements ever since in muscle tone and spasms. Stay as active as possible it’s not healthy for the human body to sit still. Get hooked up with a group of people in your situation it helps to learn how to be independent and just to talk with people that understand. Keep your head up and push hard. 

Ray: I’m 73, have similar injuries from a broken neck in 2007….I was originally designated quadrapalegic. But over the years, I’ve been regaining feeling/motion/strength in my legs,and I think it has just happened naturally. Suggestions: remember what you CAN do…remember that most people get down days on occasion…take therapy seriously but don’t count on being able to everything every day…and don’t compromise quality over quantity in your PT/OT, i.e., I think we’re better doing 8 good reps as opposed to15 half-assed ones.

Ruth: I’m an incomplete T8. I have been this way for 3 years now and I am still struggling to adjust but I look at life now and enjoy the little things and always tell myself I CAN and WILL do things that I used to. I was 18 when I got hurt, five months after I turned 18, two months after I graduated high school and a week before I was going to start college. Drs told my parents I would be parylized 99% from the waist down. Well when I got that news I was so devastated but then something in me said no I will not so I strived and fought each day to work my mind to nerves and of course pt, well 3-4 months later I was up taking my first steps! When I actually did it I was like wow I got this and I can do anything if I work hard and put my mind to it. I am now 21 and I now walk with forearm crutches and a bit on my own. I just recently got a baclofen pump to help with my spasms and tightness so I can walk better. I am in that mind frame that I can overcome this! And you can too, you just have to stay positive and say you CAN and WILL do things that you used to just in a different way! And work hard and make goals for yourself, the sky is the limit! You can add me if you like if you need someone to talk to and someone to be there for support! God give his battles to his strongest soldiers keep your head up and don’t give up you can do this!

LASCI exists as a free motivational program that helps connect and support people who have spinal cord injury or another condition that requires their use of a wheelchair.

LASCI exists as a free motivational program that helps connect and support people who have spinal cord injury or another condition that requires their use of a wheelchair.

Michael: Michele, I am a C5 incomplete quad and was injured 19 years ago. I believe the responses to this post are tributes to life after injury, and the amazing dynamic people you will discover along your journey. Our injuries are all different, but we all have much in common, that’s life, and the ability to live it above circumstances. Cherish what you do have, build off of your support system and have faith that you are still here for a reason. Discover your purpose we believe in you!!! www.injuryillness.com 

Tom: Attitude!! You are still alive and breathing! Always strive to do your best and be thankful for what you still have! You can do the things you set your mind to! I am an active, life loving Tetraplegic. It hasn’t been an easy road but its been a great life! Itll get better!

Heather: It’s not easy, especially the first couple years in to it…but don’t ever give up! Stay positive in everything you do, and do the things you love! You may think that it’s not possible, but where there’s a will there’s ALWAYS a way!! Keep your head held high…life is beautiful, and you make it more beautiful getting out there and enjoying every moment of it! You’re a survivor, and God has a plan for you….embrace that, and you can do all things!!! 

Shane: You know I’ve only been paraplegic for 5 years and there’s things that make me depressed but you have to get past that and push forward it’s hard but look up in the sky and take a deep breath your alive and life is good you have to find things that have or make positive outlook on life if it takes a drastic move to another state or country find things that make you happy stay active cause idle time give you time to think about stupid stuff tell your self every morning you wake up this is a new day and I’m going to make it . Live one day at a time don’t try to worry about the whole week .you can and you will . Good luck! 

Scott: Michele…my son is 17, C4-C5 incomplete. Yesterday was 2 years post-accident. We focus on all the positive things that have happened since his accident, starting with the fact that he’s alive!!! Give yourself credit and celebrate all the successes you’ve had. Get rid of all negativity (that includes people!!!) in your life. Give 100% in all your therapy , and do extra therapy at home. Stay busy busy busy!!! It’s still going to get better!!! 

Bobbi: Hello Michele, I too am a incomplete C-5 quad/tetraplegic. 14 Aug this year will be my 2 yr anniversary. I began this journey completely paralyzed from my neck down. I have found that getting movement back was exciting. I will not lie to you and say this journey has been easy by no means. I have found there are days where I get mad at the situation and throw things. I get pissed but then I look back and I am thankful for all of the wonderful people that I have met along the way. I look at the situation like this. After you have grieved, been upset about this that there comes a time where you can sit and take what you have and find yourself a gym to get stronger. Currently, I am working on my balance while walking with my platform walker. I have also found that making short/long term goals pushes me to my next goal. Like the other folks have stated take things day by day. It’s ok if you take a down day. I sure miss my able bodied days. I keep myself as motivated to get back to as close to able bodied with my paralyzed hands/legs as possible.  

Barb: Try to get family involved or who is closest , it is to support you and help you achieve what you need to do and want to do. It gets easier when you get stronger and more educated. Get involved onThe programs that your hospital offers or find one that offers therapeutic Rec. Go on there trips and so on. See what you would like to try. Join a church , there can be supporters there. I wish you the the best of everything. 

Leslie: You’re not alone sweetie! 17 years here as a T6 incomplete. I was incomplete before but it had nothing to do with my spine. it’s so hard and only us that have been through know. I have an amazing support system. And in fact I’m going back to school to get my doctorate in psychology and one of my specialties will be helping people who acquire a disability go through the adjustment process which I laugh at, because I’m still going through it. I remember days where I just wanted to give up and throw the wheelchair out. I’ve learned as much as I hate this, believe me I still do, that it wasn’t going to change anything. I started looking at a few of the advantages. Do you know I can get a Brazilian bikini wax and not even feel it? My ablebodied friends are JEALOUS. heh. I also want to specialize in sexuality and disability. I needed someone to talk to about it. So I decided I’ll be the person people can talk to about it! I have no shame. Being poked, prodded, and dehumanized in a hospital will do that, huh? So any questions you have I’ll be glad to answer. I’ve had a healthy sex life after. It’s hard but it can be done. Please friend me if you would like.

Kassie: It’s going to be hard before it gets easy, but I promise it is worth the struggle. I am going on 5 years this December and I struggled tremendously. I used to think it wasn’t worth the recovery, that I wasn’t worth it, but you are here for a reason. I am ALWAYS here if you need someone to talk to. You can friend request me, or even just message me. I know it’s tough, but please don’t give up. 

Lyman: Michele, for me it is all part of the grief process. Completely normal to be angry, depressed,denial, etc. You will learn who your true friends are. It will get better and you will learn to love, laugh and find happiness in everyday life. The length of time this takes varies by individual traits and support systems. Trust me. It will get better. 

rp_bertwscigroup.jpgInvite LASCI to Your Next Event

Life After Spinal Cord Injury is currently accepting speaking invitations.  To learn more about Bert’s story, or to invite LASCI to speak to your organization, please visit http://www.uromed.com/living-with/lasci/ or call 1-800-841-1233.

About the UroMed-Edgepark Family
Headquartered in Suwanee, GA [a suburb of Atlanta], UroMed is a leading national supply company that provides catheters and urological products to patients with Medicare, Medicaid and private insurance. Many of our patients have conditions like Spinal Cord Injury, Spina Bifida, or Multiple Sclerosis. UroMed is a nationally accredited organization, a Medicare provider and a participant in most state Medicaid plans. UroMed also partners with thousands of private health insurance providers and health plans to provide patients with single-use catheters, catheter kits and incontinence products.

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About UroMed Catheters
Headquartered in Suwanee, GA [a suburb of Atlanta], UroMed is one of the nation’s leading providers of single-use catheters, urological and disposable medical supplies, including intermittent catheters, closed system catheters, condom catheters, pediatric catheters and continence care products. UroMed is nationally accredited for Medicare reimbursement and most state Medicaid plans, and partners with private health insurance providers and health plans to provide patients with single-use catheters, catheter kits and incontinence products. UroMed also has seven staffed regional offices located in Boston, MA; Columbia, SC; Jacksonville, FL; Dallas, TX; Carlsbad, CA; Knoxville, TN; Richmond, VA; and Baton Rouge, LA; enabling next-day delivery after a customer’s initial medical supply order. For more information, please visit http://www.uromed.com or call 1-800-841-1233.

One Response to LASCI Members Share Advice on Adjusting to Life After Spinal Cord Injury

  1. Cynthia Lockhart-Sanders says:

    I have been injured 27 years, and have made it as a stronger, more confident person than I could have ever been before my injury. I am a T-6-7 Paraplegic with head injury from a 4 wheeler accident. As a female before my injury I was a perfectionist, and felt I needed to be perfect to hide all my insecurities. As a teen I always thought when I would see people in a wheelchair it always left me with the feeling that I could never live my life as a person confined to a wheelchair. I always thought you were born that way, and had no idea that if you broke your back that it would paralyze you…. until it happened to me several years later.. On October 16,1987 my new world began with a head and spinal injury at 18 years old. Shepherd Spinal Center, now Shepherd Center, was my safe haven to live a life in a wheelchair, and begin my new world, starting over living a totally different life. I had no idea I was paralyzed or had a head injury until a month after my accident. All I knew was that I was being pushed around to and from therapy in that God Awful Striker Frame Wheelchair with a feeding tube in my nose, due to my jaws being wired together from brutal damage to my face.. I thought they were pushing me around because I was sick, but as time passed I began to see that wasn’t the case. Then one night as I was telling God about my day in therapy, I asked him to give me the strength to walk again, because I believe through him it is possible. After that night from that point on he was my strength, my leader, and my shoulder to give me the determination that has made me the woman that I am today. I set goals to walk on long leg braces, when therapist said that was impossible with my level of injury, and later proved that I could. I was the first candidate in Ga., several years later, to be chosen to participate in a study by Para Step by Sig-Medics to walk on a computerized walker. My doctor, Dr. Donald Leslie, believed in me, and knew I could with the great passion I had to walk again… When I set these goals and accomplished them I knew that I was OK, and from that point on I knew I could do anything I set my mind too. Yes, it is 27 years later and I am still in this chair, but I still have hope that one day, in Gods time, I will walk again, but in the meantime I am sitting back for the ride!!! 🙂

    With all the wonderful things that has happened to me in my life, it has given me more confidence, determination, and strength that I see that all things happen for a reason, and mine was to help others in my are of Northwest Ga. to be independent in our community and live a full, productive, and most of all happy life. Through my employment in 1993, which was a gift from God by the connections I had with a doctor friend, Dr. Mark Murphy; that I worked out with to walk on the braces early after my injury, I found out that a new spinal clinic was opening and jumped on it with ideas I had to help others with head and spinal injuries in our community. When I met with him and all the doctors they were excited about my vision and I was hired that day. I began my new journey being a resource and connection to the new life that others will be facing helping them to maze through those challenges and obstacles that I faced; making it easier for them to begin their journey . As a Community Services Coordinator- I gave hope to others that had no idea what too expect when they came home to begin their new life. To be able to help others like I did to accomplish their goals was the greatest gift given to me that God laid on my heart that has kept me pushing forward in life.

    We all have a huge impact on others by seeing we are the same as we were when we were walking, we just get around faster and look cool doing it!!! 🙂

    Take care friends, and know I am here if anyone needs any advice or direction!!

    Discover and make happen-Keep well and move forward because there is a world waiting out there for all of us….. Blessing to you all-

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