Introduce yourself!

garrisonredd

Hi @Tom_Haig ,
I love your mission and what you are trying to accomplish, I was wondering if you can send me a message. We can possibly collaborate I am doing a documentary on my Journey in Para-Powerlifting and how I am trying to teach the support to disabled individuals in other countries around the world, particularly impoverished communities. I think it would be awesome for us to connect.

iamdadman

@tooalone
I haven't figured out how to message someone either.  I know someone I can ask though to find out.  Where is the mid-Willamette valley?  I find that navigating this site can be cumbersome.  There are different categories, then different discussions and then I get notified that people have responded to my posts but I have already responded to their original response (if that makes sense?).  The simple truth of the matter is serious health issues in general are incredibly burdensome and doing it alone only complicates and worsens the whole thing.  So, you are not alone.  Once I figure out how to message just you, I will send my email or phone and this way when you just need to talk one on one, you will be able to reach out...

Joe   

Monica.T

bigwave916 

"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."

Hi Dave, my son's SCI was in June 2017; a second surgery a week later confirmed our fears, but I did not tell Charlie because I worried if we took away that hope too soon, that he would give up on himself. I know without that hope he wouldn't have worked so hard in rehab and wouldn't have pushed himself through months and months of continuing therapy; and without that hope and hard work he wouldn't have accomplished nearly as much nor progressed as far as he has. And maybe your wife thought the same thing, maybe she felt you needed those brief moments of hope to help you push forward.

I read one of your replies and saw that you are discovering new activities

Wishing you many great adventures ahead.

Monica.T

Hi Everyone, this is my son Charlie. In June 2017 Charlie had spinal infusion surgery to correct curvature of his spine caused by Scoliosis, during the surgery the hardware nicked his spinal-column at the T2 level allowing blood to get into his spinal-cord resulting in SCI. A month in ICU and then when he was stable enough he went to a rehab Hospital for 4 weeks. Charlie also has Cerebral Palsy, is non-verbal and requires a feeding tube; for a kid that has struggled with over-coming disabilities all his life, the SCI was devastating. But Charlie does not let his disabilities define who he is; Charlie is an amazing kid with an awesome out-going personality.

Thank you all for welcoming us here, your patience, kindness, compassion and words of encouragement have helped us through some very dark days.

tooalone

@iamdadman Yes I keep seeing posts, and getting posts that are directed to someone else on what I thought was my "page". It is confusing. There is a valley that runs N-S in OR, between 2 mountain ranges. Lovely, green, lush......mild weather, usually. I am S of Portland. I did order all my records from the neurologist, who I feel dropped the ball big time. I fear I am now permanently damaged now that constracture has started with my toes. I just can't find anyone who truly knows about foot drop. The research I just did does show what I said all along, it started in my ankle.....and no one ever looked there, not the dr. the neurologist, the neurosurgeon........very bad of all of them.

iamdadman

@tooalone
Man, that is nothing but entirely frustrating.  Especially when it is your life and future on the line.  There are people in the medical community (a select few) who should be in a different profession.  I think they forget that they are dealing with people.  People with feelings, emotions, knowledge, ambitions, goals and so on.  They treat us as if we represent work to them and forget we are human beings.  So very sad.
Where you are living sounds idyllic!  When we first moved to Washington we were on the Olympic peninsula.  It too was so beautiful and because it was between the Olympic mountains and Vancouver Island, the weather was mild and not nearly as much rain.  We were right on the Strait of Juan De Fuca about 200 feet above the water.  We could see the lights of Victoria, Canada at night, cruise ships all the time, had deer sleeping in our backyard and bald eagles flying overhead all the time.  I thought the only way I was leaving that house was feet first but it was three story combined with still having to travel into Seattle 2-3 times a week for therapy and doctor appointments.  Talk again soon... 

iamdadman

@Monica.T
Charlie looks like an amazing young man... probably gets it from hi mother.  I was just talking with Crucker about how different people respond to adversity either through, loss of a loved one, terminal sickness or traumatic injury.  Some gain strength and actually go on to do things they never thought possible while others crawl under a rock.  Charlie is going to be one of the people that rises to the occasion and flourishes...

Joe

Monica.T

iamdadman Thanks so much Joe Charlie amazes and inspires me daily. That picture was taken yesterday leaving the hospital after his Urodynamic Test. His life-time dream since he was in the 5th grade is to someday become a Marine. I never tell him that he can't - I learned a long time ago to not use the word "can't" until we TRY So who knows, maybe someday the military will realize persons in wheelchairs can do many noncombat related services.

MiSSiL

Hi, I am Silvia, I had an accident in July 2017 where the horse I was riding tripped and fell on top of me. Aside from other injuries, I had severe swelling of my cervical spine from C3 to C6 and had a decompression and fusion surgery. I was paralyzed but now I can move well although in constant pain.I think I have done great till about a couple of months ago when my mind turned into a depressive state as american doctors don't seem to care about the patient and I got tired of trying to find one. I could write a book about the rudeness and mistreatings I've had since leaving the hospital, and I am tired of them all. I can't really turn my neck more than about 70 degrees each side. My right side is weaker as well as my arms so people don't realize how hard it is as they see me walking. I am slow but steady. I have generalized weakness and can't stand up long. I have trouble with #1 and #2, plus severe GERD and esophagitis from lying down. I have extra sensitive fingers, can't tell heat from cold for a few seconds on my body, and my feet feels always freezing (but they are not). I also have PTSD and anxiety, working on that. I think I have PTSD from doctors and doctors receptionists too. I live alone with 4 dogs who are the best therapists! I also still have my old horse who I ride once or twice a week, and I am re-learning to ride. I would like to compete in para-dressage someday. I do not have a doctor or do any PT at the moment as I need a referral and can't seem to find a doctor that takes Medicaid or my insurance. Massage helps a lot but I can't afford that, as well as acupuncture and Chinese herbals (I now self medicate with those as I can afford), and a couple of weeks ago I weaned myself off all meds (Lyrica, Zanaflex, fluoxetine)

If anybody has a tip on how to find a physiatrist (not a pain pill popper doctor) that takes my insurance or Medicaid share of cost please let me know! TIA

deborahvick

@MiSSiL So sorry to hear what you are going through. I can relate to some of what you are talking about. My ehlers danlos, a connective tissue disorder causes all my joints to be severely lax. As far back as  1998 when I was diagnosed reverse disc degenerative disease, reverse kyphosis and stenosis was already present. Fortunately, I had many more years of strength in my arms --- though I was already using a wheelchair from the damage that walking was causing in my hips, lower back, knees and ankles. Fast forward a few decades and strength deteriorated quickly and pain started developing rapidly. I ended up with what the dr referred to as an emergency fusion as the vertebra were cutting off almost all of my spinal cord fluid. I was given the choice to gamble on correcting only the ones causing the biggest problem at the time or several vertebra more, which would be needed in the future but could possibly be a long time out. Being that I was just about to turn 40, I went with the three disk surgery. Boy do i every wish I had the tardis now as less than 6 months out I was back in getting all the hardware removed and fused from c2-t2. Never have been the same since, never fully recovered and no one is properly managing it. So I totally get it. I do have one very compassionate pain clinic dr who manages my pump but i am still searching since leaving Kaiser for someone a little more local and willing to look at the whole picture and help me gain some semblance of control that I had at Kaiser. (Stanford pain clinic was a horrible experience - love my neurologists and primary and even my GI specialists but not the pain clinic.) I am very much used to be being considered an equal and a partner in my treatment plans... so much so my drs will ask if i learned anything knew or helpful or articles of interest. It was a very demeaning experience at Stanford pain clinic, not with the nurses, but the Residents.... i wish you the best! feel free to message me if you want to talk.

AskNurseLinda

Hi, Missil, call the number on the back of your medicaid card. They can provide names and contact information of practitioners in your area that work within their system. You might want to ask for a case manager that can help you navigate for other services as well. Nurse Linda

iamdadman

@MiSSiL
Hello Sylvia and welcome to our group.  I think we can all commiserate with your experiences with the medical community.  I have had my share as well.  Where do you live?  I live in Washington and finally feel good with my team of doctors.  I have a PCP, endocrinologist for my type 1 diabetes, a urologist for Botox injections into my bladder due to incontinence and a neuro-optometrist.  I had to get rid of my spinal cord doctor for reasons I won't go into here and now I just got another new one because the one I had switched to moved out of the area.  I still take antidepressants but do not take any anti-spasm medications.  At one time I was on 36 pills per day for my spasms, clonus and nerve pain.  They didn't help me at all and just made me depressed and sleepy  I think it is so  badass of you to still be riding and setting goals of competing in para-dressage.  It shows your indomitable spirit.  I think you will find a lot of understanding and support by being a part of our group...

Joe  

MiSSiL

AskNurseLinda said:

Hi, Missil, call the number on the back of your medicaid card. They can provide names and contact information of practitioners in your area that work within their system. You might want to ask for a case manager that can help you navigate for other services as well. Nurse Linda

Thank you for your answer, AskNurseLinda. I do not have Medicaid. All Florida gave me was share of cost Medicaid and it goes from $786 to 1298 minimum out of pocket every month. I have no idea how I am supposed to be able to afford any treatment. 

MiSSiL

iamdadman said:

@MiSSiL
Hello Sylvia and welcome to our group.  I think we can all commiserate with your experiences with the medical community.  I have had my share as well.  Where do you live? 
Joe  

Hi Joe, Thank you. I am glad I found some people who seem to know what to do. I have no family near and no close friends, my nearby friends don't seem to understand how impossible the healthcare system is to work with. I am in Florida, and trying to find a way to move out of the South as the government here doesn't seem to care about its citizens and now I need care. I wish I could live in the Pacific Northwest! So beautiful, I love the climate too.

I could not stop riding. I got a grant from the Equitherapy organization in town and they were wonderful. Not much else helps with PTSD but the animals. They got me out of the rat infested nursing home that gave me burning water baths at 11 pm 2 weeks earlier, I had to come home to care for my dogs!

I had a PCP who never seemed to bother even reading my charts. He is supposed to be the best around, but did a lousy physical on me last year then charged me $150 to fill out 4 pages that the lawyer asked me to have him do, and did it all wrong. Now he wont take this new insurance, as there are only 3 companies in FL for self paying individuals. Only the hospitals accept Medicaid, I went to a "Medicaid" clinic and they charged me up front once they saw I had share of cost, $35 down the drain because the nurse was useless. I had a nice neurologist who doesn't take the new insurance either, and who did nerve conductivity studies on me that the previous insurance refuses to pay. I had one physiatrist who didn't even touch me but collect urine - not to see if I still had an UTI or to find out the reason for my polyuria and disuria, but to drug test me for $2500 (I do not take narcotics), and the staff told me they require one each visit and a visit a month. So lousy I never returned and the few others from my insurance either don't practice clinically or have snotty staff who refuses to make me an appointment when I tell them my accident happened abroad and I don't have a lawyer paying for it. The PT graduated me because I used all the 35 visits allowed for 2018 in my insurance and since now I am doctorless I have no way of getting PT. Yes I could go on all day. My body seems to be getting weaker and more easily tired, and I don't know what to do. I cannot anymore work for 9 hours and drive in traffic 1 h home. I need to sleep a lot more than I have been but I need the money and it was very hard to get the job I did. At least I found a wonderful therapist who helps a lot the PTSD, anxiety and helplessness that I get sometimes. The gastro is very busy but knowledgeable and will listen to me, I had 2 esophageal ablations last year and although I am much better, I still can't drink cold liquids or any liquid very fast or larger amounts and battle constipation on and off (I do not take medications or suppositories anymore either)

Anyway I have been getting more and more depressed since November and not sure why. It coincided with the end of PT. I think it is lack of exercise too.

I appreciate very much all your input. I read a bunch of the comments and there are so many more. I am not so cool, strong or famous as most of you, actually my self esteem has not been this low since I was a young insecure teenager. Good part is that although I was told I would not improve after 12 months, not only I continue getting better but I can also move arms and legs well now (just no strength and not for long!)

How is it in Washington? How much support is there for the disabled?

AskNurseLinda

Hi, MiSSil, who ever is providing your funding has a list of providers. If it is not through Medicaid, then whoever is your payor source is the one to contact. Nurse Linda

iamdadman

@MiSSiL
Sylvia,
My heart goes out to you based on what you have experienced since your injury.  You have definitely been put through the ringer.  I have a sister who lives in Venice Florida.  I haven't visited her in a long time and told her I won't be returning until she comes to visit to me in Washington...lol.  I love living in the PNW.  I am on Medicare and a supplemental so my coverage is pretty good... nothing like you have been experiencing.  All of my doctors are in the Univ. of Washington Medical system.  Like I think I mentioned, I did have problems with my physiatrist but I got rid of her after lodging a complaint.  Then I lost my new one because she left the area and the one I have currently seems good.  I have had only one appointment with her so it really is too soon to tell.
Did you try calling the Reeve Foundation Paralysis Resource Center (PRC?)   They have information specialists who may be able to provide some guidance and local resources.  When I was first out of the hospital, they were incredibly helpful.  They helped me get accessible transportation, loaned me literature and put me in touch with a peer mentor who also provided support and resources.  I am sure that after all you have been through you just want to pull the covers up over your head and forget everything.  But, at the same time it also sounds like you have an indomitable spirit and with some support will overcome the nonsense you are having to deal with.  I truly hope you do.
I am so glad to hear you have regained some movement.  That is something very positive.  For me, in the beginning, all I wanted to do was die.  In fact, I was angry at God because He didn't let me die but instead put me in the blankety-blank wheelchair.  At the time, I was taking 36 pills a day including baclofen, gabapentin, dizanidene and two others that I can't even remember.  It sucked!  It didn't do anything for my nerve pain or spasticity but sure made me lethargic, depressed and hurt my cognitive ability.  Gradually though, I took more of my care into my own hands and things did get better.  
What part of Florida do you live?  Where is your family?  If these questions are too personal, please forgive me and don't feel you have to answer.  I only want what is best for you and want to try to help in anyway I can.

Joe

Aiken

My name is Julie and I have cerebral palsy.  I have always enjoyed the thought of participating in sports but it was not until I was introduced to the paramobile equipment for golf that I became a full player.  This equipment has allowed me to learn the game of golf and to- for the first time - stand up to play.  I have been participating in the Marty Turcios Therapeutic Golf Foundation​  in Augusta for two years and spend at least two days a week utilizing the equipment.  I am able to go on the actual golf course with the equipment and participate as a full player.  I can also use the equipment at the driving range.  My swing is somewhat limited right now to one hand and I can hit a distance that way; however, I have slowly been able to grip the club with both hands and my chip shots are getting much better.  This is the first time I have been able to utilize both hands at one time.  My range of motion has drastically improved since I have been playing golf. I cannot say enough about the help the paramobile equipment has given me and the difference it has made in  my life.  I am able to interact with many people with various disabilities and thus my social circle has also increased.  Thanks so much to Nick and Jen who own the Wedges and Woods driving range for allowing us to have the equipment located there and for transporting the equipment to the golf course when we are playing an actual round.  Thanks also to Marty Turcios for introducing this opportunity to me and to so many others with disabilities - it is life changing.  Thanks to the Reeves Foundation for funding this important program.  Kudos to all!!

Melody_Lacy

Julie rocks her therapy and works out very hard.  Her dedication has been an inspiration to other people with severe disabilities in our therapeutic golf program.  You are our star, Julie.

iamdadman

@Aiken
Hello Julie,
I was a golf nut before I was injured.  I am a T2 paraplegic and met up with Anthony Netto in the San Diego area and he introduced me to the piece of equipment I think you are referring to.  I went to the driving range and after hitting about a dozen balls, I was exhausted.  I congratulate you for sticking with the game and improving.  I loved playing before I was injured and just before my injury, I had broken 90 with an 88.  I was so hysterically happy.  Anthony met me at the driving range and transported the piece of equipment that stands you up and allows you to play.  My range of motion is severely compromised but man do I love the game of golf.  Anthony is a veteran and a former PGA player.  He is amazing.  Where are you playing?

Joe

Aiken

The driving range I use also has a tracker so I can see how far the ball is going.  Right now I can hit about 60 yards with one hand.  On the course we play captain's choice.  I play in Augusta, Ga.  I enjoyed reading your story.  It is tiring to keep playing but it really helps my stamina.
Julie

Melody_Lacy

@lamdadman Anthony Netto has visited Augusta Georgia and our program several times.  He is even considering having a house here.  We are in the golf capital of the USA and are working to make golf accessible to many people.  My husband is the recreation therapist and program director, Nick owns the facility we use and is a wizard at dialing in the equipment to make sure each participant has exactly what they need and his wife does so many jobs from making appointments to replacing club grips and I do most of the fundraising.  You can't always tell, but each of us is severely disabled. 

iamdadman

@Melody_Lacy
Melody,
all I can say is wow and that I am completely impressed.  Who says we are disabled.  We are energetic and committed people who make things happen.  Anthony is a very kind and supportive man.  He was even willing to leave the standing golf cart at a course for me to use but they wouldn't let me.  How did you like that last Masters?  Personally, I was extremely happy for Tiger.  Augusta has to be one of the most beautiful, if not the most beautiful course in the world.

Joe

Melody_Lacy

Hey from Augusta @iamdadman,
Wedges and Woods Driving Range where our program takes place is, according to Yelp, "the finest driving range in The South".  We like to add "possibly the World", because it's true.  Please come visit.  We have a terrific community here.  The standing up wheelchair is called the Paramobile.  We have several of them and some are actually all paid off!  That's my job...  Paying off Paramobiles.  You know what they say about Southern Hospitality?  Well, it's true.  We would love to have you.  Augusta has a population of nearly a quarter million people and over 43 thousand are people living with a disability.  Maybe it's because of the high rate of military service among our population.  Maybe it's because of the affordable housing and warm weather which attracts people with disabilities to move here.  Maybe it's because of the terrific Augusta University Medical Center and two VA hospitals.  I think it's social.  Come on down and see if people don't treat you with more respect than you are used to.  Nice talking to you @iamdadman.

iamdadman

@Melody_Lacy
Hello Melody,
I have spent time in Georgia.  Mostly in Atlanta when I was working for UPS at our corporate headquarters. I did find the hospitality of the south very obvious.  I would love to go to Augusta not only to check our your driving range but also to check out the Master's golf course.  You sound like one dynamite lady with a whole lot of life inside of her coupled with a willingness to help others while having fun doing it.  Rest assured, if my travels bring me anywhere near you, I will be there and seek you out.  You know, put a face together with an email buddy...

Joe

ColeandCharisma

Hello Reeve Connect family! We are Cole and Charisma and are so excited to get to know more people in our community through this awesome forum.

Cole 
          I have been a C5-C6 functionally complete quadriplegic since my injury on August 11th, 2011, when I was 16 years old. I said "functionally complete" because officially I am incomplete. My therapists claim I can flex a couple of muscles below my level of injury but they don't help me in any way so practically speaking I'm complete.
          I hurt myself diving into shallow water and hitting a rock just beneath the surface. Luckily a friend was there to pull my out, as just 15 yards downriver was a set of rapids and had he not, I'd surely have been a goner.
          After my injury I rehabbed at the Shepherd Center in Atlanta, where, with a great deal of help, I was able to regain some semblance of normalcy. After returning home to Richmond, VA, I worked hard to catch up with my graduating class and finished high school alongside my friends. I then went on to study Psychology and Neuroscience at the University of Richmond where I graduated in the spring of 2017. 
          Professionally I focus on my YouTube channel with Charisma, called Roll with Cole & Charisma. We're fortunate to have gained a sizeable following, something neither of us expected, and love that we have been able to use the channel as a platform to spread positivity, increase awareness, and promote interabled dating/relationships.

Charisma 
          I graduated from VCU in 2016 where I studied Exercise Science and Psychology. After graduating I went on to work at Sheltering Arms as a rehab tech in the impatient facility. There is where I met Cole who was never a patient of mine, which is commonly misunderstood lol! We have been together since our first encounter in November of 2017.  
         Currently I am a full-time occupational therapy student at Shenandoah University. I enjoy working with SCI and hope do so once I graduate in December 2020. Like Cole has mentioned, together we have a youtube channel where we try to bring awareness surrounding interabled dating, accessibility and the key to staying positive. 
         We are excited to be a part of this amazing community that allows us to meet so many amazing people!

iamdadman

@ColeandCharisma
Hi you guys!  You are a most beautiful couple.  So very happy to have you with us.  It sounds like a match made in heaven and I am very happy for you.  
Well, my name is Joe and I am going to be 68 on Wednesday, May 1.  I have been married for 44 years to my beautiful wife, Pauline,  and we have been together for 46 (yes we lived in sin for two years).  I will attach a picture so you can see what we look like.  We have three grown children, all married but alas, only one granddaughter.  
I was injured in October of 2010 due to complications with my type 1 diabetes.  I had a sever episode of hypoglycemia.  I don't remember anything until waking up in ICU a week after my accident.  I somehow managed to fall inside of our home from the third floor down to the second, about 12 feet onto a hardwood floor.  Due to the long surgery, I completely lost the sight in my left eye.  I shattered my T2 vertebrae and paralyzed from my chest down.  I have some sensation below my level of injury but functionally, not hardly any movement.
So again, welcome to our group.  I hope you enjoy it as much as I do.  As I said earlier, you make an adorable couple.  Cole, I think you are a lucky man because Charisma is a beautiful woman and her spirit, as yours, seems indomitable.

Joe

ColeandCharisma

@iamdadman

Thanks for the kind words and for sharing your story! We actually share a birthday! I’ll be turning 24 on Wednesday, May 1. What a coincidence!

Y’all are a beautiful couple!

WAGSofSCI

@ColeandCharisma so glad you two are on here now! You two are a great couple and we love what you guys are doing in the community. Welcome to Reeve Connect!  - Brooke 

iamdadman

@ColeandCharisma
24!!! Doggone, I have suits older than that...lol

waianaesara

I'm Sara Thelin. I broke my neck in two places and was first diagnosed quadriplegic, then paraplegic, now I don't even know. I have worked my ass off and got my arms and hands back then, I can actually walk short distances with a walker. I have 18 screws/pins and two metal plates in my neck holding my head on. I have a catheter that won't be stop leaking and I swear nobody in this Hospital knows anything about Spinal Cord Injury. It's been a year and a half since I broke my neck and  the numbness in my feet, hands, and torso just seem to be getting worse! The more moving around I do, the more noticeable the weird sensations are. Nobody can tell me why. I can't get even a referral to a good Neurologist or Urologist, both of which I need  very badly! Nobody will treat me like anything is even wrong with me now just because they can't see it. I KNOW there is something massively wrong with my back and I should know as I had a spinal fusion when I was 14, now I'm 49 with rotten bones. Next good fall and I'm dead.