Introduce yourself!

deborahvick · April 2019

there's also a company out there a small business company that has his portable ramps to bring to the beaches so that people can access more beaches. They're trying to roll it out and other areas as well but it's definitely a in

@deborahvick

Hello Deborah,
I lived in San Clemente from 1997 until 2006. I loved it. I went down to Project Walk for three months in 2012 and ten months in 2013 and 2014. At first it was a total blast; like a big family but then it changed due to the almighty dollar. I loved the fact that they had beach wheelchairs so I could get in the ocean. Made a lot of friends down there that I stay in touch with to this day... very nice to meet you
...

garrisonredd · April 2019

welcome @MuDDog glad that you are here

TpaBayJeff · April 2019

@iamdadman
I live in Tampa again, after having lived in SD & OC for 4 years. Six months after moving back to Tampa (11/2016) i got sick and became paralyzed 05/2017.
My aunt & uncle lived in Venice for years.
Where are you living now?

Crucker · April 2019

@bigwave916

Dave, Allen Rucker here. I have the same level of injury but my doctors left my fate of not walking ambiguous for nine months so I too thought I had a chance of walking again. In retrospect, I think not knowing was helpful -- it kept my attitude positive and my energy high.

I suggest you look into adapting all of your vehicles rather than throwing them away. Lots of people on this site know about adapting trucks and I had a quad friend, now passed, who adapted his motorcycle with a sidecar where he sat and steered and drove it to the Sturgis Motorcycle Rally. I can't tell you how it did it but someone can.

Also, it took me a good two years to start hanging around with other chair users. I didn't want to belong to their club. I soon figured out how stupid that was.

bigwave916 · April 2019

Hello Crucker,
Thanks for responding. I've got to get more proficient at transfers if I'm gonna ride anything but my ramp equipped van. I have an F150 pickup truck, but I don't know how i'd ever get from my chair and get in it to drive. Then load my chair. Not gonna happen. I'm almost 300 lbs and I can't build enough upper body strength to lift my lower body, especially being dead from the waist down.

I'd be willing to bet that I've seen your friend with the motorcycle sidecar. I was in Daytona around 2006 and saw the guy go by. He was getting a lot of attention from the crowd of bikers because it looked like a rider less bike. Didn't see my situation in the future back then.

The support group was a good move, and from there I signed up to the annual SCI conference being held near me next weekend.

Regards,
Dave

Crucker · April 2019

I have a good friend, Tim Gilmer, former longtime editor of "New Mobility," a para with part of one leg amputated who adapted a truck to bring him up, then park the chair in the sliding door. Looked pretty nifty. If you are interested, I can get a video. But I don't know about the weight. You would know more about that than I do.

I can send a video of Evan, the quad cyclist, if I can grab a copy.

Crucker · April 2019

@bigwave916

And I don't think that Tim had to do any lifting.

bigwave916 · April 2019

iamdadman said:

@bigwave916
Hello and welcome to our group. I dig that you are already trying the hand cycling thing. That is awesome. I want to do it as well but haven't gotten down the whole transfer thing. I am so glad you found a support group. To me that made all the difference. There was something about being around a lot of people in wheelchairs. It kind of leveled the playing field. Best of luck in all your future endeavors.

Joe

Thank you, Joe

I have to rely on my wife and a Hoyer to get me in and out of the hand cycle. It's still a work in progress. Local SCI foundation has a hand cycle seminar coming up and I'd like to go there to learn what I can. I hope I don't learn that I bought the wrong hand cycle.

Regards,
Dave

AskNurseLinda · April 2019

I would love to see you riding in your hand cycle. Any photos you would like to share? Nurse Linda

AskNurseLinda · April 2019

Hi, MuMDOG, look at you in that graduation gown. You must be really celebrating and you should.

There is so much going on in research today, you must be a busy guy. Nurse Linda

bigwave916 · April 2019

Here it is! My maiden voyage on the Varna handcycle. Some background: This thing arrived in pieces and came with no assembly instructions. I managed to assemble it in my living room, a feat of which I am quite proud. I did have to take it to a bike shop so that they could make sure the brakes were right and the gear shift mechanism was adjusted. I've had two falls this past year resulting in bilateral hip fractures the one time, and a right leg broken in two places the second time. i fell out of the lift test fitting the bike which gave us one helluva scare. So it was test fit, then adjust and test fit, then a test on the driveway and more adjusting. The pic is a result of actually getting out of the driveway and making the short ride uphill to the cul-de-sac, and push from the pit crew to get me turned around, and then a downhill back to the driveway.

Its a one-size-fits-no one design, and I'm a bit on the large size. Clearance problems and the inability to change gears had me straining to get it to move. It was in a high gear and I was trying to go uphill. My physical condition was pretty sad too. I have since made additional adjustments and started working out at the gym again. I made a second voyage to the end of the street and back, but had to be rescued when my foot came out of the stirrup. It has been a slow process due to fear of failure, fear of fracture, and weather opportunities, but I'm not defeated just yet. Another motivator is the damn thing cost me about $3200.

AskNurseLinda · April 2019

Bigwave916, that is magnificent. It looks like a good time. I especially enjoyed your assessment of one size fits no one. How true.

Here is a question for you. Can you make the front wheel so it moves your legs passively? You might not be able to do it physically, after your fractures in your hips and legs but if you can, you would be providing activity input to your body. You would need to check with your healthcare professional to make sure your hips can take it. Even passive movement helps nerve regeneration.

If possible try it. You could become a company rep. You seem like a dude that could accomplish it. Nurse Linda

married11307 · April 2019

Hello I'm new here. And I was looking to get some advice on what others do or what they use to help tame toning in the legs? I'm new to all this still just a year into it all with my almost 14 year old. Her legs are toning so bad. Her dr has her on baclofen but as it stands right now shes taken it for a year now. Shes on 20mg 4x's a day which is the highest dosage shes able to take with her weight. Under 100lbs. I take my daughter this coming up Thursday to have botox injections done in her legs which I'm praying hard that they help. If anyone e can give me or offer me any advice I'd sure appreciate it.

deborahvick · April 2019

@married11307

I take baclofen orally and through an implanted Medtronic pump (along with a cocktail of other medications for pain management and muscular spasms). I also have use botox in the past and it was very successful. I actually missed taking about using Botox because it helps so much with my neck unfortunately I can't take it with my myasthenia gravis. Botox can be very useful. It helped me tremendously.

married11307 · April 2019

I'm thankful that aside from the way her tummy tightens when she has spasms that she has no pain thankfully. I'm anxious to see how well the botox works for her. It would just be nice to see her sitting with relaxed legs instead of them in a chair position. She just recently had the surgery to place a urine and bowel button to give her more independence we just want to make her life as easy as possible.

TpaBayJeff · April 2019

@married11307
I'm grateful to hear she has no pain. If it wasn't for my ability to focus my mind on other things, the pain would overwhelm me. Keep us posted on how she responds to the botox injections. Recently had someone recommend it for both leg and bladder spasticity.

married11307 · April 2019

@TpaBayJeff I will definitely post an update. She just had bowel and bladder buttons placed. Thankfully she doesnt have many bladder spasms. Including a pic of her cause shes to cute not to show off

TpaBayJeff · April 2019

@deborahvick

For intestinal (and allegedly bladder) spasticity I'm on Bentyl (20mg t.i.d. PRN)
For leg spasticity, I'm on oral Baclofen (20mg q.i.d.), oral Tizanadine (2mg t.i.d.), and oral Dantrolene (25mg t.i.d.). MY goal is to delete Dantrolene from the regiment. For pain I'm on Lyrica (150mg t.i.d.) and still have a lot of neuropathic pain. Doctors have put me on Norco (two 5/325 q.4.h. PRN) but I hate narcotics (and opioids) so I rarely take any.

I'm curious about the Baclofen pump implant, the multiple Botox injection options, and what other medication combinations you (and others on here) find beneficial.

TpaBayJeff · April 2019

@married11307
Beautiful young lady! Looks to have a very good spirit about her. The smile, hearts, bow...and especially what looks to be chocolate in her right hand, are all signs of positive energy. You must be proud of her!

deborahvick · April 2019

@TpaBayJeff

I also have zanaflex and Lyrica as well as oral baclofen. The botox was also extremely extremely useful the steroid injections and local are just temporary. Definitely benefited from the baclofen pump which also has other muscle relaxers and pain medication. Feel free to p.m. me with any questions you might have

Crucker · April 2019

For those who don't know about it, I have Botox injections for a spastic bladder and it works like gangbusters. It is injected directly into the bladder and relaxes it. I highly recommend it.

DeeJay · April 2019

Hey, everyone !! I'm DeeJay and I am a C5-C6 incomplete quadriplegic for the past 17 years year. I am paralyzed from the chest down, but I have a great deal of sensation in my lower body/extremities. I am married to an amazing woman who also happens to be a licensed nurse. I also have a daughter and I try to live my life the best I can considering my condition . Please don't hesitate to ask any questions you might have. I look forward to interacting with everyone.

deborahvick · April 2019

@Crucker

Thanks. I never knew. I would get it for the spastic muscles in my neck, back, shoulders, tmj and head pain from cranial instability. It worked wonders.

Crucker · April 2019

@deborahvick

It works wonders on the bladder, too. I've been doing it for three years.

iamdadman · April 2019

@TpaBayJeff
I live in Mill Creek, Washington in the Pacific Northwest and love it...

iamdadman · April 2019

@Crucker
I swear by it. Bladder spasms were always causing me incontinence but since the botox, I haven't had but two in the past 2.5 years. I get it done just about every six months...

iamdadman · April 2019

@DeeJay
Welcome DeeJay! Glad you are here and adding your insights. I too am married to an RN. She's retired now but says she still has one patient...me... and that is more than she can handle...lol

iamdadman · April 2019

@married11307
Hello and welcome to our group. First of all your little girl is beautiful inside and out as demonstrated with her big smile. The love you have for her will be a means of support and compassion that will serve her well. I have spasms pretty badly due to not being on any medication. I was on baclofen, gabapentin and dantralene plus one other that I can't remember. All totaled 36 pills per day and all they did was make me lethargic, had a negative impact on me cognitively and made me depressed. So, I got off all of them. I just deal with the spasms. I do botox for my bladder due to bladder incontinence and it has been a miracle drug for me. If it works on your daughter's legs like it did on my bladder she should really get some relief. I do the botox for my bladder about every six months...

Joe

deborahvick · April 2019

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

married11307 · April 2019

@iamdadman ty for the kind words. I like any good mom will go to the ends of the earth to make her happy. I do this with all 4 of my kiddos. My little girl was taking around 20 pills a day and we now have her busted down to 8 a day thankfully. She takes oxybuten for her bladder which has helped amazingly. I'm excited to get these shots because I know how difficult it is for her when she has the spasms even though they cause no pain it throws her sitting position off because it causes her to sit more on one side then the other. And in return we fight with skin break down and pressure ulcers. We have found that using a device called revitive has aided tremendously with loosening her legs but it's just not enough for her to be able to sit correctly. It's also helped in the circulation in her legs so they dont feel as cold as they have in the past which I'm thankful for.

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