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Comunidad de información y apoyo para las personas que viven con parálisis y sus cuidadores en español.
Comunidad de información y apoyo para las personas que viven con parálisis y sus cuidadores en español.
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Comments
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?
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
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
I'm online in this community every Wednesday from 8-9 PM ET to answer your SCI and paralysis related questions.
Leave a comment any time below. Let's get the discussion going!
Nurse Linda
Register for my next webchat! Sign up here!
I'm online in this community every Wednesday from 8-9 PM ET to answer your SCI and paralysis related questions.
Leave a comment any time below. Let's get the discussion going!
Nurse Linda
Register for my next webchat! Sign up here!
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.
I'm online in this community every Wednesday from 8-9 PM ET to answer your SCI and paralysis related questions.
Leave a comment any time below. Let's get the discussion going!
Nurse Linda
Register for my next webchat! Sign up here!
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.
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.
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.
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!
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
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.
I live in Mill Creek, Washington in the Pacific Northwest and love it...
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...
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
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
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