Introduce yourself!

deborahvick

@married11307

I'm had some amazing results with acupuncture. I also take a medication for my bladder it begins with an m but I don't have the name in front of me it in front of me. .. it begins with an m and it's helped me quite a bit

married11307

@deborahvick I'm glad that the acupuncture worked for u. Shes never had it. But I'm praying the botox works as well for her as it has everyone else that's had it done. 

iamdadman

@married11307
I too have seating problems but it is due to my scoliosis.  It keeps tilting me to my left side.  My PT put a wedge on the left side and that has helped.  My spasms don't hurt me when they occur but I have 24/7 nerve pain which is really intense.  As much as possible have your daughter check her position regularly especially after spasms.  One good trick is to have her look at her knees.  If she is seated correctly in her chair, her knees should be even with each other.  If not, then she may be leaning one way or another.  I wish you both nothing but the best.  I am glad you are both here..

Joe

deborahvick

I have very bad seating, though notn scoliosis it has a lot to do with the subluxation and dislocation of my vertebrae in SI joints. My back brace and shoulder braces help some but not all the way. I also an air cushion on my wheelchair to try to keep my up on one side versus the other but it's almost I was twisted but in for all intensive purposes I really don't have any connective tissue.

that being said watching how you stand and being very body position awareness can help.some from leaning to one side too much to bending your head down for using a phone or iPad.

AskNurseLinda

I know you will keep going and doing an excellent job, mom. Nurse Linda

married11307

Ty all for the advice. I will take it and any other advice u may have that u wish to share. I'm still new to all this and learning as I go. Since shes only been paralyzed for a year now I believe I have learned quite a bit. Most of it by doing my own research because that was easiest. Her drs assure me that I'm doing a fantastic job and that they are amazed at how much I have learned in such a short time. I will continue to research and continue to search for anything that will aid us in this journey.

AskNurseLinda

Keep tuned to the Reeve Foundation. There are many people here wanting to support your effort. Nurse Linda

deborahvick

I highly suggest adaptive sports! I'm extremely excited myself today because of my experience on a new sit ski... it was absolutely amazing. I can't do most of the adaptive sports I was once able to do but this specialized ski, of which there are only 5 that have been produced, was so easy for me to manage. IT was so very exciting.

deborahvick

Opps. that link didn't work.

https://docs.google.com/document/d/1rQo7qOO1kbRdLSl6BmWyfp9TTapeFHcPYZ6yyfKb4vw/edit?ts=5cabdc17

deborahvick

deborahvick said:

Ok... I know this is the intro section but since some of us talked about adaptive sports I wanted to share a draft of something I wrote today regarding an amazing adaptive skiing experience in Tahoe. I was originally writing a blog article but...

I have been asked to write articles for the Abilities Expo magazine as well as being a contributor to The Mighty or simply see about having it published by the Reeves Foundation. For now I thought I would share with you all. Please feel free to provide feedback. (Pretty tired now and sure I have missed much as the fatigue increases cognitive ability decreases...)

http://https//docs.google.com/document/d/1rQo7qOO1kbRdLSl6BmWyfp9TTapeFHcPYZ6yyfKb4vw/edit?usp=sharing

sorry. That link didn't work.
https://docs.google.com/document/d/1rQo7qOO1kbRdLSl6BmWyfp9TTapeFHcPYZ6yyfKb4vw/edit?ts=5cabdc17

deborahvick

Opps. that link didn't work.

https://docs.google.com/document/d/1rQo7qOO1kbRdLSl6BmWyfp9TTapeFHcPYZ6yyfKb4vw/edit?ts=5cabdc17

deborahvick

deborahvick said:

Ok... I know this is the intro section but since some of us talked about adaptive sports I wanted to share a draft of something I wrote today regarding an amazing adaptive skiing experience in Tahoe. I was originally writing a blog article but...

I have been asked to write articles for the Abilities Expo magazine as well as being a contributor to The Mighty or simply see about having it published by the Reeves Foundation. For now I thought I would share with you all. Please feel free to provide feedback. (Pretty tired now and sure I have missed much as the fatigue increases cognitive ability decreases...)

http://https//docs.google.com/document/d/1rQo7qOO1kbRdLSl6BmWyfp9TTapeFHcPYZ6yyfKb4vw/edit?usp=sharing

sorry. That link didn't work.
https://docs.google.com/document/d/1rQo7qOO1kbRdLSl6BmWyfp9TTapeFHcPYZ6yyfKb4vw/edit?ts=5cabdc17

Crucker

@ deboravick

Great story, Deborah.  Maybe the Reeve people will publish your piece on the TetraSki as a blog and if not, you might inquire at New Mobility magazine (www.newmobility.com). I have done some adaptive skiing -- and found it to be maybe the most exciting thing I've done in a chair -- but never heard of the Tetra-Ski. Is it a new invention? Look forward to your videos to see how it works. Thanks for a lively story.

django

Hi there. I’m Django. I’m t4 incomplete, for 2 Years, but in many ways it still seems brand new. I’m 68 and female. I live by myself but I have help morning and at night. I don’t know anyone else like me. I have friends and live in an independent living apartment. No family close by.  Anyway, that’s me. Thanks for letting me join. 

Crucker

Welcome to the party, Django.

deborahvick

@Crucker

Yes the tetraski is brand new. There are only five in use right now. What's amazing is it can be controlled with a simple hand joystick like a power chair or even a sip and blow straw. It has such a wide span of usage from high-level injuries to those with chronic illnesses weakness and fatigue.


The fact that I skated the entire day and I'm still awake and not unconscious is a huge!!! Moreover it went faster than the by ski with the fixed outriggers and so much less pain especially as I can't turn my neck very much look up the mountain just slow down and turn. 

Advanced very quickly in just two days unfortunately another person hasn't reserved for Thursday and Friday morning so I will only getgit et Thurs and Friday afternoon. I'm going to take some GoPro videos hopefully from different angles especially as I'm moving up on the more challenging mountains now that I'm getting the hang of controlling the speed. They're talking about future generations having more independent features. 

Crucker

@ deboravick

I was never good enough to be independent on the mono-ski but sounds like I could master this contraption! Look forever to hearing more about it.

deborahvick

@crucket
I'm speaking with the developers today. I too well at once I was able to do monoskis but as I ost my strength my ability to even do the buy ski with a fixed outriggers was challenging. they really do need to get some socks in it though and that's something they're talking about because right now I'm hurting from all of the jostling around especially since I was going up on the higher challenges. Unfortunately tomorrow I have to use the fixed outriggers  by ski in the morning

iamdadman

@django
Django,
I am so glad to meet you and that you are here.  I am going to be 68 on May1.  I am a T2/3 meaning I have a little more sensation on my left side than my right.  I was injured 8.5 years ago and still learning and yearning.  Where do you live?  That is amazing that you are living independently at 2 years post.  I know I couldn't have done that.  You will find a lot of love and support on this site.  No one knows what it's like to be in a wheelchair like someone else in a wheelchair.  The first time I was able to be around other people in chairs, the more comfortable I felt.  I wish you nothing but the best.  If you ever want to talk or vent or anything, I am here...

Joe

iamdadman

@Crucker
I never got the opportunity to ski when I was able bodied but reading all of these messages about the adaptive skiing has made me curious and wanting to try...

Joe

Crucker

@iamdadman

If can find a ski program that includes adaptive skiing, I highly recommend it. If it's a mono-ski, the most common form for paralytics, you will be strapped into a bucket seat and tied down. You will have two small hand skis to help you maneuver.  Once you're in skiing position, an experienced teacher will tether you to a long rope and ski behind you. When you fall, they will help you up and when you head toward a dangerous area, they'll pull you back. I could rarely stop without falling over. No matter what, you will have a great time. You are only a couple of inches from the snow, so when/if you fall, it's a little like sliding into third base -- on snow.

iamdadman

@Crucker
Thanks a lot.  I am definitely going to look into it.  I have always enjoyed many different kinds of sports.  I even went surfing after being paralyzed and it was a blast even though initially I was scared out of my mind.  Thanks for the encouragement.  

AskNurseLinda

Hi, Django, welcome. I hope you find the site useful for information. The people connection is great. Nurse Linda

AskNurseLinda

There is a video of the tetraski online: https://mech.utah.edu/today-show-profiles-tetraski/

I will be anxious to see your video, Deborahvick! Keep us informed-and keep warm. Nurse Linda

iamdadman

@AskNurseLinda
That was very cool.  I am a T2 incomplete and have full use of my hands and arms.  What devices are around for para's?

AskNurseLinda

Hi, Iamdadman, gosh, there is just about everything. I think some of the best developments have been in wheelchairs of every adaptions from chairs for hiking to beach combing. There are adapted golf carts for individuals who can golf but do not get out of the cart-standing is not necessary. Sam Schmidt, the race car driver, drives his car with a mouth stick. As readers indicate, there are a variety of adapted ski equipment. There are adapted boats. Same goes for the sporting world of race wheelchairs, biking, and rugby, etc.

I think you just need to decide what you would like to do and then google. There is such a variety of adaptive equipment. What did you enjoy before? You can probably do that same activity in some form. Don't limit yourself due to SCI.

There are also a variety of sports teams. A certified healthcare professional provides a rating so you can be on a team that is evenly matched for people with a variety of abilities. Watching the para Olympics will give you a good idea of different types of equipment in action but if you don't want to wait for that event, the sports are on YouTube. In the basketball games, you will see a wide variety of chairs by different makers, some individualized for that athlete.

Some equipment for private use is quite affordable, others not so much. As with all athletics, you will have more expense the more elite you become in the sport. Check local civic clubs, they might sponsor you with equipment in competition or even just wearing their jersey. If their first response is no, keep trying. You will find a club member who is interested in your dream. It is a great advocacy role for success, grit and determination. Nurse Linda

Readers, what is your sport or hobby? Any pictures or info will help everyone find a fit for them. Thank you. Nurse Linda

deborahvick

@AskNurseLinda @Crucker

I have some gopro videos already and the second staff person recorded on my phone. I will put them and the next two afternoons together. 

My biggest suggestion for the next version is to have a U or V shape handle like they have for car hand controls. After some time I found myself using my palm. The other thing is shocks. I have a great deal of cranial instability and definitely was hurting today.... but totally worth it! I was speeding down at the end. The instructors commented that this was so much less work because he only had to intervene a few times other than that i was independent. I did this with my oxygen concentrator, full leg braces, back brace and neck brace!  So Awesome.

Jimbob

Hi Everyone, My name is Jim, Live in the Tampa, Fl. area. Paraplegic from a gunshot injury, C7 incomplete. I am married, two grown sons and two grandsons. Worked for a local police dept. for 16 years, left that and went to work  as a 9-1-1 dispatcher for fire rescue for 22 years and now retired. My wife and I travel as often as we can, next trip driving from Florida to Seattle, then taking the cruise to Alaska in October. Ive been in a wheelchair for almost 40 years, dealt with it all. If you have any questions or I can help in anyway feel free to contact me..After taking all those 9-1-1 calls for all those years I have learned to be a good listener         Nice to meet everyone,   Jim

deborahvick

@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!

HotWheels11

Hey guys,

My name is Dan, I am a C5 Quad and my injury occured just over 3 years ago while I was vacationing with my girlfriend (of 3 years at the time) Elena. Actually, Elena's first blog post for The Christopher Reeve Foundation went live today on WAGS of SCI. Check out story.