Introduce yourself!

deborahvick

Sorry to go off on a tangent above, its just something we have been working on all year. I partnered with Far West Wheelchair Athletic Association so donors can benefit from non-profit donations. (They were also awesome last year and lent me 10 chairs for my cub scout camp- actually two week long camps where I led a disability awareness program.) Scouts had the opportunity to try and maneuver through different challenges and try and dribble, shoot the basketball and not get up when it bounced out of reach. :-)

I showed pictures from kids playing power soccer chair and blind skiing to adults playing lacrosse and paralympic sledge hockey team. I showed videos of wheelchair BMXing and myself at different stages in sports like the sledge hockey and adaptive Taekwondo and my adaptive wedding dance.

Sports has come so far. Though I had lost my ability to do so many adaptive sports that this is such an amazing experience for me. I am having little side affect from a day and a half of skiing. Can't wait for tomorrow. I saw a video from yesterday on a lower level mountain. Tomorrow i have to use the a the diamond biski with fixed outriggers in the morning but get to use the Tetraski in the afternoon.


deborahvick said:

@AskNurseLinda

I noticed you were mentioning adaptive wheelchairs. Right now my son and members of my scout troop we are trying to raise funds to purchase a all terrain off roading wheelchair as we have no means to accommodate scouts and scout leaders with mobility impairments. I know I can not get around on my own with my freewheel and service dog and need to have additional people assist me. 

We are trying to raise funds so that we can be able to reach out and recruit youth from the Far West Wheel Athletic Association, though i do not want to do so until we have a means of better access.  I am currently creating MyIntent bracelets and selling them as part of a fundraiser for our efforts. (and medical causes.) I will also be at the Bay Area MakerFaire.

I'm rather passionate about this because it not only affects paras, quads, inbetweeners (like me- made up word) but also people with invisible limitations. For example, I had several cub scouts not continue on to scouting bsa because they knew they couldn't hike or go to the camps.

Any fundraising ideas or contacts people have would be greatly appreciated!

iamdadman

@HotWheels11
Hey Dan and welcome to our group.  I dig the whole hot wheels thing.  That is what my granddaughter calls me.  She always freaks out if she thinks I am going too fast or when I am going down hills.  I have been injured just about 8.5 years and I am a T2.  I am glad you are here and hope you enjoy our conversations...

Joe

iamdadman

@Jimbob
Howdy Jim, it's nice to meet you.  I have a sister who lives in Venice, Florida.  Also, when you arrive in Seattle, let me know.  I live very close and we could have a cup of coffee or something.  I will bring the wife and we can make it a double date...

Joe

iamdadman

@AskNurseLinda
Nurse Linda,  thank you very much for your insights.  I have been an athlete all my life.  I rode my 18 speed, played golf, baseball, football, ping pong, basketball, tennis and jogged as well.  I lost the sight in my left eye so my depth perception is non-existent which makes playing any sport difficult.  I have been surfing, kayaking and did hit some golf balls.  Hitting the gold balls was so exhausting.  It was more difficult than some of my workouts.  That is a lot of stuff to look at and I will check out the YouTube stuff...

Joe

deborahvick

@HotWheels11

This one is for you!  This is not the Tetraski. That was being used in the morning. I used it in the afternoon and had the opportunity to have several of use use my gopro to get different perspectives. I used the diamonique bi-ski with fixed outriggers and had some fun "rippin" it down the mountain and even got some air. That being said it took some time for my breathing to get back to normal even when in increased my oxygen.


https//m.facebook.com/story.php?story_fbid=832440607089868&id=100009718085807&_rdr

K_Srujan

Emms said:

Hi I'm Emma. I've been a T12 para for 22 years after a fall. I enjoy handcycling, wheelchair basketball, kayaking, backpacking and long distance National Trails and cycle trips. I'm a firm believer that staying physically fit and eating well helps you keep mentally fit. I like to wake early and see the sunrise, I think it's the most beautiful time of day to have time with oneself. So I go to the beach everyday to watch the sun and walk my dog. I practice yin yoga, which I find helps with my spasms and keeps me flexible. I work at home home full time, and I live with my husband, dog two cats and chickens! 

K_Srujan

Hi Emms, My name is Srujan, I am C5 Quad for 18 years after the fall. By reading your post I was introduced to a peculiar and interesting "Yin Yoga" regime which may help my daily exercise regime and get some relief from spasm which is creating a nightmare to me while my night sleep. Thanks for sharing. 

Tom_Haig

Hey everybody! - I'm Tom Haig a t-12 para from Corvallis Oregon. I'm a documentary film maker and have been living in my rig for 23 years. Whenever I get funding, I pack up my camera gear and move in with a disability community outside the US. I've worked in disability communities in France, Ghana, Albania, Bangladesh, India and Nepal. From these trips I've made around 40 video shorts. If all goes well, I'll be heading off to Senegal for six months to teach video journalism to kids in a disablity school. I hope to keep you all up to date on what we're doing!

deborahvick

@Tom_Haig so can I ask how you getting your funding? I'm struggling to get funding for the wheelchair all-terrain chair that is for scouting community so that everybody with disabilities can have access to the outdoor program scouting provides and I silicon Bay Area that's the San Francisco to Santa Cruz area.

Tom_Haig

I tried to get funding HERE! But they balked at my proposal. Now I'm working with a group from the University of Colorado, Colorado Springs. They've picked up the idea and are running it through their dept. of Innovation. But honestly, I've self-funded most of this and have gotten some plane tix paid for by doctors from the International Rehabilitation Forum, a group of rehab docs who work in poor countries. They've also gotten me in to the clinics, hospitals and disability communities I've been to. 

It was so hard to look for funding so I just bought some decent camera equipement and headed out. I figured I was much more likely to get funding with a couple of projects in my pocket. I've got a broadcast journalism degree, so I'm not just winging it, the product is good... but I ain't getting rich doing it! 

django

Welcome Tom. 
It sounds like your personal story is as interesting as any that you are filming.  May I ask, what is a disability community?
 Thanks 

deborahvick

Time photographers actually hobby of minrm they're almost all my pictures are of kids at school or of Scouts with the exception of my trip to Hawaii and my trip to Alaska...

Your experiences sound totally awesome! Nowadays for me and my case I'm pretty much tied down to where I can get infusions every few weeks. . . But totally happy to the vicariously through you.

the awesome ski that I got to use or sit ski that I got to use at Tahoe was actually from the University of Utah universities are really coming out with some great things hopefully they can come out something soon for accessibility at outdoor camping sites for scouting communities
.I can't wait to go to go off-roading easily without causing injury to my body.

Tom_Haig

Django - in most poor countries PWDs tend to be housed in separate enclaves - usually tied to a hospital and a school. Acess to buildings and functional toilet facilities are so limited in their cities that they put everyone in one neighborhood. It's called "warehousing the crips" and it is ubiquitos in poor countries. The bright side is that there tends to be incredible comradarie amongst the residents. The downside, of course, is that it doesn't compel the govt to provide ramps, accssible toilets, acceptable transportation, equal employment... you get the idea.   

tooalone

Sorry I seem to have posted this in the wrong place, I just found this place.

Hi everyone! I am so happy to have found you after years of going through this alone. I haven't found my symptoms any where, the neurologist after a year said " I don't know why it happened, but it could happen to your other leg too", rather cruel of her I think. I have had every test, EMG, catscan, MRI, dye shot into my spine, xrays, etc while I was in solid pain for a year. It, I believe was my sciatica down my left leg. I never had any pain in my back ever. There was no trauma, stroke, disease, etc. I literally was sleeping one night but woke up to a terrible pain in my ankle. It woke me up! In the days ahead my entire leg including butt was in terrible pain. I went to the ER. Nothing. I went to my doctor who sent me to a neurologist for an EMG. That took 3 months to just get that appt. while being in horrible pain every hour of every day and night. I went to PT, I had stims, I had stretches, I did everything and nothing stopped the pain. But I could still walk fine. I also saw a neurosurgeon who said after tests that there was nothing in my spine to operate on, it was fine. My regular doctor every once in awhile would ask me if I had foot drop. No, didn't even know what he was talking about......until many months later my foot started becoming "not my foot" any more. It got to the point I couldn't even move my toes, my ankle/foot was totally paralyzed. I was shocked and still in pain. I got a brace which helped some but it was awkward yet useful. After about a year, the pain started to subside in different parts of my leg and butt cheek. I am guessing that it was about 18 months before I had no pain, but was left with a paralyzed ankle and foot.

My life I knew, I no longer have. I can't walk safely except on an even flat surface. No more walks in the woods, no more walks with the dog, except on pavement, etc. Then came my toes......they started to work again, I got excited, I thought I would get all better....fast forward many more months and found that while sleeping or not standing on my foot, my toes would spring up in the air, only the pressure of standing or walking puts them back down. Now, I believe I have contracture.....when will this end? What the heck happened that night? What can be done?

Sorry..lol.....for the very long hello everyone!!!

iamdadman

@tooalone
Welcome to our community.  Yeah, I know it sucks to have to belong to a community like this as opposed to a community of dashingly good looking, funny, smart, wealthy celebrities but it is what it is.  So, if I read your story correctly, you still don't know what caused the problem?  The neurologist or any of the other doctors had a diagnosis?  Man, that kind of sucks!  When did this happen?  I will tell you from my own personal experiences that when you have a traumatic injury, you quickly realize the limitations of the medical profession.  Keep coming back.  I think if you share your story and read others, you will see that life goes on whether you enjoy the ride or not.  Hang in there...

iamdadman

@Tom_Haig
Hi Tom,
It's great to have you here.  I am just up the road a piece in Mill Creek WA.  It's about 20 miles north of Seattle.  I think what you are doing is phenomenal!  My son just moved to Hillsboro is I spelled it correctly.  I could relate to your comment about enclaves where poorer countries house their disabled population.  The camaraderie is so important to me personally.  About a year and a half after I was injured, I went to Project Walk in Carlsbad CA.  It was the first time I was around a bunch of other people in wheelchairs.  It felt so good to be with others who were living the life I was.  As much as my family and friends love me and support me, no one else understands what it is like to be in a wheelchair like another person in a chair.  It really helped me improve my attitude.  I would love to be kept up to date on your adventures.  I respect and commend what you do...

Joe

deborahvick

@iamdadman

love the response!!! @tooalone so sorry To hear of your challenges. Though not paralyzed, I am very familiar of the pains from nerve damage. I have numerous fusions because of spinal cord fluid that was blocked by vertebrae and many more occasions Have awoken with slipped disks and vertebrae out of stuck out of alignment causing severe muscular and nerve pain. 

Im am truly sorry to hear of the challenges. Know you are not alone and that though many of us have different challenges the one thing that unites us is our desire to lead the best life possible and push on forward. (Really no pun was intended but I’ll keep it in 😀) 

iamdadman

@deborahvick
It's great that all of us are on this site and supporting one another.  The reality of life is that there are going to be days that kick us in our butts.  But, (no pun intended Deborah) with a little help from our friends and a positive outlook, the many amazing things in our lives keep us motivated and loving life.  That may not be true for all of us but for me living a life of regret, depression, anger, resentment and sadness is just too damn hard.  It's simply not worth it to me.  I choose to look the blessings in my life.  I was able to stop measuring my life based on what I had lost but instead choose to measure my life based on what I still have.  It makes my life a heck of a lot more fun... keep punning Deborah... I like it!
Joe

tooalone

iamdadman said:

@tooalone
Welcome to our community.  Yeah, I know it sucks to have to belong to a community like this as opposed to a community of dashingly good looking, funny, smart, wealthy celebrities but it is what it is.  So, if I read your story correctly, you still don't know what caused the problem?  The neurologist or any of the other doctors had a diagnosis?  Man, that kind of sucks!  When did this happen?  I will tell you from my own personal experiences that when you have a traumatic injury, you quickly realize the limitations of the medical profession.  Keep coming back.  I think if you share your story and read others, you will see that life goes on whether you enjoy the ride or not.  Hang in there...

@iamdadman @deborahvick You are correct there is no diagnosis. It started one night in the Spring of 2016. I had to hire helpers to clean and do shopping as all I could do was lay on the couch with cold packs the entire length of my leg due to the pain. Sciatica pain is really bad, no drug even touched it. So it is difficult after all those tests, all those dr.'s, all that pain, and now to have new problems ie contracture, it feels like the "trauma" isn't over yet. I understand that I don't have it as bad as so many here, but the frustration of not knowing what happened one night while sleeping is large. I am hoping to meet other foot drop people as you well know it is nice to have comrades in the same boat. Believe me I have very little faith in the medical community after all those tests, and end up with "Don't know why it happened, but it might happen to your other leg".

BrookeU

Glad you found this community, @tooalone! I hope you feel "lessalone" as you get to know the community. I'm Brooke, the sister of someone with a spinal cord injury, and the Reeve Foundation and its community are the best!

iamdadman

@tooalone
I can totally relate.  I completely lost the sight in my left eye and no one even knew it until I realized it.  Then "the specialist" comes in at 5:00 AM in the morning, wakes me up, sticks a light in my eye and says, "yes, you have lost the sight.  It may come back but it is doubtful."  Real kind bedside manner...not!  It doesn't matter how much function a person may have because we all feel our own personal level of disability as a very personal matter.  Regardless of how functional you are we all hurt the same.  I have 24/7 nerve pain that is a 6 or 7 on the pain scale.  There is nothing that has helped.  I have tried different medications and given them all up and I have tried different CBD's and pot and nothing touches it.  So, I try to ignore it.  It is concentrated in my butt but goes down both legs to my calves.  I wish you the best and hope you know that you are no longer alone...

Joe

deborahvick

@tooalone Sometimes it can take a medical community very long time to catch up. I had significant challenges with my connected tissue disorder, Ehlers Danilo’s about 20 years before I was finally diagnosed... though the nurses after my first surgery knew there was a real problem. It took about seven years after the onset of my dysautonomia Before being I diagnosed and probably about four more years Of symptoms before diagnosis of myasthenia gravis.

tooalone

@BrookeU thank you for the welcome, I appreciate it.

@iamdadman Oh, I am so sorry you have that constant pain with no relief. It is very draining. I am pretty tough I think, can handle pain but this one took me down, the largeness of it, the consistency of it, the length of it. And to have it do this damage to me. No dr. ever listened to me when I said "it started in my ankle"........even to this day no one has checked out my ankle, not even an xray. That is terrible about your eye, shame on the so called specialist. I am good at fighting for my pets health, as like a dr. vets are just "practicing", I've taught many a vet a thing or two and have been thanked for it by them. I had a relative that is a surgeon, boy talk about godlike, try having one for a relative! I no longer agree to more tests about anything with me, I refuse to be a guinea pig any more. I now have glaucoma, which I was told could make me go blind, but I take drops to slow/stop it, I also have cataracts, old age sucks! It sounds like you have support in real life. I have none. All my family is dead, I didn't grow up where I now live, I am really alone in life. I try to make the best of it, but sometimes when life throws curve balls, it is hard. Did you ever find out why you lost your sight in that eye?

AskNurseLinda

One of the difficulties with a healthcare issue is when you do not feel anyone is listening to your symptoms. Some diseases are so rare that healthcare providers do not often see them or perhaps never see these cases. That does not mean you should be ignored.

If you are not finding help with your healthcare provider, you can ask for a second opinion or just get a second opinion on your own. Most healthcare professionals should honor a second opinion request. It will help them as well. However, sometimes people are sensitive about perceived challenges.

If you do decide to get a second opinion, find a specialist, not just another doctor. If you have a neurological problem, see a neurologist perhaps in an academic medical center. This is where most rare cases end up so they see a lot of different types of things than your local physician.That does not mean your local physician is not a great doctor, it just means others might have more exposure to unique cases. There are literally thousands of neurological diagnoses so it can be a challenge.

Pain is a unique consequence of many types of diagnoses. A pain specialist can help with treatments that are not typically offered. Neuropathic pain is one of they most difficult types of pain to treat. Sometimes a neurologist or spinal cord injury specialist is best for this treatment and sometimes a pain specialist is best. However, not everyone is experienced in this type of treatment. Before making an appointment, ask if the specialist has experience in treating individuals with neuropathic pain. This is a yes or no question. If the response is that the doctor treats all types of pain, but they cannot specify neuropathic pain, move on to another choice.

If you do not have a case manager through your payor, now is the time to get one. The insurance or medicaid case manager will know physicians who treat unusual cases. They can help direct you to a person that will be in their system which will help you financially. If you do not have a case manager, call the number on the back of your insurance or medicaid card. It is your right to have a case manager assigned to you. A diagnosis will work in everyone's favor, yours and your payor's as it will direct your treatment plan and provide you with the resources that you need.

Hope this helps. Nurse Linda

iamdadman

@tooalone
Too alone, I lost my eyesight because the surgery was long (5-6 hours) and I lost my blood pressure.  They said because of that, my optic nerve in my left eye didn't get enough blood supply.  I am so sorry to hear that you have no support around to help you cope.  Having a condition is bad enough without having to deal with it by yourself.  How old are you if I may ask?  I am going to be 68 on May 1.  I wish I could do more to help support you.  Where do you live?  Are there any support groups around in the area?  You can drop me a message any time.  I want to be a friend... one that you can count on to listen... take care...

tooalone

@deborahvick........oh my what a road you have been down.....my road is super short compared to yours, and I have a super skeptical eye with the medical community. I learned it just from what my pets went through, and it taught me a few very important things, trust your gut, do your own research, and ignore the rest. We seem to all think dr.'s know it all, we seem to all forget, even in the animal community that vets and drs. are all PRACTICING.....I don't want someone practicing on me, I don't want someone practicing on my animal. Part of me thinks I was put on this earth to bust veterinarians, as I have had quite a few "practiced" on.........with horrible results. Of course I sue, won, complained, won, etc......but doing it for myself is harder. The word "practice" in both oaths really bothers me, and I don't know why all folks don't know that is what they are doing........practice on you or your pet. Good one's who learn, bad one's that don't give a ........

tooalone

AskNurseLinda said:

One of the difficulties with a healthcare issue is when you do not feel anyone is listening to your symptoms. Some diseases are so rare that healthcare providers do not often see them or perhaps never see these cases. That does not mean you should be ignored.

If you are not finding help with your healthcare provider, you can ask for a second opinion or just get a second opinion on your own. Most healthcare professionals should honor a second opinion request. It will help them as well. However, sometimes people are sensitive about perceived challenges.

If you do decide to get a second opinion, find a specialist, not just another doctor. If you have a neurological problem, see a neurologist perhaps in an academic medical center. This is where most rare cases end up so they see a lot of different types of things than your local physician.That does not mean your local physician is not a great doctor, it just means others might have more exposure to unique cases. There are literally thousands of neurological diagnoses so it can be a challenge.

Pain is a unique consequence of many types of diagnoses. A pain specialist can help with treatments that are not typically offered. Neuropathic pain is one of they most difficult types of pain to treat. Sometimes a neurologist or spinal cord injury specialist is best for this treatment and sometimes a pain specialist is best. However, not everyone is experienced in this type of treatment. Before making an appointment, ask if the specialist has experience in treating individuals with neuropathic pain. This is a yes or no question. If the response is that the doctor treats all types of pain, but they cannot specify neuropathic pain, move on to another choice.

If you do not have a case manager through your payor, now is the time to get one. The insurance or medicaid case manager will know physicians who treat unusual cases. They can help direct you to a person that will be in their system which will help you financially. If you do not have a case manager, call the number on the back of your insurance or medicaid card. It is your right to have a case manager assigned to you. A diagnosis will work in everyone's favor, yours and your payor's as it will direct your treatment plan and provide you with the resources that you need.

Hope this helps. Nurse Linda

@NurseLinda Thank you for responding, I really appreciate it.

I had a neurologist for a year, one would think she knew what she was talking about, wouldn't one? You drowned me with the thought of thousands of reasons why........it's now 3 years later and I have contracture. Why no one would listen about "it started in my ankle" is more than frustrating, but I capitulated, been healthy for 62 yrs..........only to be taken down this ugly road of test after test, constant pain, and dropped off at "don't know why it happened but it might happen to your other leg" ie the "neurologist",.

I am now on Medicare QMB? in Oregon.

It now feels the damage is done after 3 years. The neurologist said one nerve was dead, I could see the flat line in the test results. But the contracture has me worried again.

I have fought for all my pets, big time, but all alone now, I need help fighting for myself. I am tired, old, worn out..........

deborahvick

@tooalone yep it's been a very long and painful road at times. With that said I may not be in the most hear from you right now because I'm fighting some sort of infection and with my disorders actually drains me.

just Windows right though that with rare disease is it is a lot more challenging. But that said with a lot of my conditions there was definitely signs that something was the wrong ie... a person doesn't have full range of motion after reconstructive knee surgery. Though I will say the medical community has come a long ways. It has a great deal to do still but it's moving in the right direction. moreover the more organizations and groups that begin to unite people with disabilities the more we begin to communicate together and begin to give feedback to research and doctors which can really help us down the line. For example, just a few years back dysautonomia was considered a disorder coing existing or comorbid with ehlers-danlos now it's beginning to believe that ehlers-danlos actually causes dysautonomia. 

Don't give up but definitely try to empower yourself with knowledge and try and get multiple opinions. I went to quite a few specialist before being referred to Johns Hopkins and that was after the Mayo clinic misdiagnosed me. Now of course it's very clear to my doctor's my disorders. 

tooalone

@iamdadman That is very kind of you, reaching out to me, offering friendship. We are close in age. Oh and Happy early Birthday I am 65 and live in the mid-Willamette valley in OR. A small town, not super small, but having lived in many states and cities, this one is pretty small to me. I just kind of ended up here, it wasn't by choice but by necessity at the time. And here I am still 10 years later..........

Because I am new here I haven't figured out how it all works, you know what I mean? how to post, where to post, what options there are, yada, yada.......it will take me some time to learn just the site. How does one just "message" someone?

And boy between you and deborahvick, I sure don't want any surgery done on me as that seems to have just created more troubles for you!

tooalone

@deborahvick I am sorry you are feeling so ill right now. I do appreciate you welcoming me when you are not doing so well yourself. So thank you very much!!