From uncontrollable spasms to relaxed limbs | Life before and after a Baclofen Pump

[@FreddotheWheelchairGuy]

If you have a story worth sharing then please get in touch below if you want to be a guest on the podcast, you can leave a comment or email me at [e-mail]

[@bahaha696]

Wow... I'm 5 years in, I'm a t8 incomplete para. No baclofen, no valium, no big pharma for me, No alcohol, no smoking, Just good food and exercise. I've managed to regain some sensation and muscle engagement below my injury, which is very promising., I was AISA A ..now B 😊 I live on my own, with no support. Which can be hard, but I manage. ❤

[@FreddotheWheelchairGuy]

Congrats 😊👍

[@jwilleseries7764]

I remember that one of my friends with Cerebral pares got that, I did not know what it was all about until now

[@Kenzie_McIntyre]

you know i was unaware of the muscle tightness ....of course i knew about the spasms but i also heard that a lot of people have quite bad side effects while on Baclofen...i literally cannot believe what u pay for meds its disgusting considering the profit the pharmaceutical companies make.....but what i really want to know do u have any side effects from Baclofen....nicotine and alcohol are brother and sister ..when i stopped smoking i stopped drinking too because it wasn't as enjoyable ...16 yrs now and i never crave alcohol but sometimes if i see someone smoking i think ..lucky bastard 😂😂❤❤❤

[@RobertOw83]

SPMS. On Baclofen, Tizanidine & Sativex. My spasms were so limiting before meds, and I can relate on the drowsiness of Tizanidine - I tend to take at night/bed as they knock me out. But the legs are calmer, and the upper body is less rigid/twitchy. I don't know what I'd do without. The pump is my fallback if the Sativex + meds aren't enough.

[@FreddotheWheelchairGuy]

Yeah I forgot to mention on the conversation that I had a horrendous experience with tizanadine once. Absolutely knocked me out and ruined my girlfriends birthday, sending my mental Health through the floor. That was enough for me! Thankfully baclofen kinda works without any side effects

[@johnmaude5065]

I’m so glad I don’t really get spasms, occasionally my right leg will jump all by itself lol, my friend had spasms that would nearly throw him out of chair until he got the pump. We are soooo lucky here in Australia 🇦🇺 with the NDIS program, everything is is free, catheter’s ect plus we’re getting a new kitchen and bathroom starting the renovations on Monday 5th of February and they pay for our accommodation 😊

[@FreddotheWheelchairGuy]

Wow that sounds awesome! Do you get nerve pain at all?

[@johnmaude5065]

@@FreddotheWheelchairGuy yes sometimes, particularly in my left foot, it’s like someone sticking a knitting needle into my heel 😔

[@FreddotheWheelchairGuy]

@@johnmaude5065 sometimes I wonder would I swap nerve pain for the spasms, but some people have the nerve pain SO bad it makes me grateful I don’t get it

[@gjj1]

Fred would you opt for a pump? why or why not?

[@FreddotheWheelchairGuy]

Great question. For sure I think it would be very life changing, relief from spasticity would be absolutely incredible. However, I guess there would be some downsides and I can currently manage them pretty well, even though they do really annoy me It’s definitely a thought-provoking one, if it wasn’t so hard to be able to be prescribed one, I’ll probably give it more serious consideration. If I lived in a place where it was as expensive as what Brian pays, then no.

[@gjj1]

Thanks. It is a difficult choice indeed. I am getting evaluated for one. I am similar to your state, T11 with severe tightening of leg muscles. @@FreddotheWheelchairGuy

[@ElinMindscape]

So interesting to listen to your conversations, thanks for sharing. I have progressive MS, but the way you describe your spasticity and spasms is sooo relatable. I do not wreste a big baby, though, I am actually dealing with a cranky Arnold Schwarzenegger who has taken over control of my legs - almost not possible to bend one leg, and not possible to straighten the other 🙄 Testing out for the pump in 5 days 🙏

[@FreddotheWheelchairGuy]

Best of luck. I hope it gives you the relief you’re looking for

[@sunny4lady]

Great video! Do you take valium daily?

[@FreddotheWheelchairGuy]

Not every day, I used to for a few years, before bed, as prescribed, but now only occasionally as needed