Generalised Dystonia Video - (part 1)

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Category:

Science & Technology

Tags:

• Generalised
• Dystonia

[whoa10wholepacks]

Have you tried a baclofen pump? It c an help with the spasms.

[lynnbond123]

Thank you for your comments. Unfortunately I didn't fair too well with baclofen when taken orally. It gave me bad jerking movements.(ataxia symptons). My GP said this was a side effect of baclofen and to stop it straight away. Whether he was correct I don't know. However, I am responding well to FES although I still have no movements in my ankles. FES works well for certain types of nerve damage. My first trials can be seen on video five or six.

[BobbyIronsights]

Pretty girl, lovely accent, very crappy disorder.

[lynnbond123]

@BobbyIronsights Thank you for your comments Bobby. I quite agree, Dystonia is a very crappy problem. It is basically muscle spasms that pull the limbs into weird postures. The muscles are also constricting the nerves, hence the F wave is weak in the legs.

Shortly I will be having the nerve signals increased in the legs. (By battery!) I hope to show the results on a further video-who knows I may run the marathon again!

[kittypride2]

Does your leg feel like heavy weights you can't lift when you try?

[lynnbond123]

Thank you for question. To date I have the movements back in my legs. I have re-learnt how to use them. I don't recall them as feeling heavy , just no signal to move them. Nerve test done at hosp showed I was missing an F wave in the leg. Like a stroke I have found new paths, or ways to open up new ones. However, i still have twisted feet, and now knees and hips but my movements are ok. Will be trying FES treatment shortly.-watch the space!

Thank you

[youngbethabq]

This was a wonderful way to demonstrate dystonia. It is hard to imagine living like that, but you are able to show how dystonia interferes with your voluntary movements. I hope you will add more videos soon.

[mermaids27]

you are an amazing person.. god bless you and hopefully you get better!!!!

[nastymonsters2]

I started getting this last Jan .in my neck.docs had no clue what was wrong.I have suffered on my own since.my neck is a mess now.and the spasms are spread to shoulders and body.I found if you have this in you neck. Holding or placing your hand on your head or neck tricks yout brain into not spasming the muscles as much.I read recently tht ppl do this .so it's not just me.

[ligelige11]

Thank you so much for sharing this. I am going through something similar and it encourages me to know I'm not the only person struggling with this. Do you know what caused your dystonia?

[Kingzylo]

I've had medication induced dystonia twice, id honestly rather lose a limb than go through with dystonia again, tis by far the most painful thing i've ever experienced and I fight in MMA.

[whoa10wholepacks]

@lynnbond123 I'll be sure to go watch those, glad something is helping(: God bless

[TheSunIsBlack]

this really helps me--pre-med student. very well explained and composed vid.

[BobbyIronsights]

Check out my channel if you like. I play with guns, and build offroad wheelchair stuff. Gonna build a tank chair (endless rubber belt treads), next. Watch me weld badly, and set my legs on fire. Good fun will be had by all.

[BobbyIronsights]

@lynnbond123 luckily by the time I got home I was too depressed to bother loading any of my heaters and just went to bed for a few days with a bag of weed and some valiums and baclofen I have for the spacticity...... but what do I know. Good luck, and keep in mind that hope floats, but it also tortures and kills. I seen alot of suicides in the last ten years of being in a wheelchair, don't give up if things don't go your way.

[BobbyIronsights]

@lynnbond123 Umm... yeah. I know a little bit about direct peripheral nerve stimulation. Mine worked great, I even pedaled a bike 3 times a week at therapy.. Until, like a large percentage of people, it slowly stopped working over a period of about 2 or 3 months. They tried increasing the voltage, but eventually I started getting minor burns, and they refused to continue. I begged, but they still refused. I know now it was how it had to be, but at the time I was thinkin to go load my handgun.

[theseethrumirror]

You are so brave. I wish you the best of luck, and I hope that your dystonia has decreased since this was made.

[lucyzepeda]

hi! my sister suffers from this condition in a more moderate way, well, suffered...you see, she started with the same symptoms you mentioned, and she was sent to see Dr. Jose Biller, in Chicago at the University of Loyola, and he gave her a prescription for Carbidopa 25MG/Levodopa 100Mg...she takes a pill daily and she's perfectly fine now .. I hope this helps, maybe you could contact Dr. Biller.

[haltamirano1]

Dystonia is a Bad disease. I can relate to you completely since my legs are exactly like yours and I am dependent completely on a wheel chair for movement. I have spasms throughout my body and I am in pain all the time. Thank you for sharing your experience. It helps to know that I am not alone in this. God Bless!

[katja114]

hello! im doing a research about dystonia and im just wondering if ure using any aids for walking (like wheelchair etc ) or in doing everyday chores,etc? thank u and im hopin for ur best :)

[IncubusIsStellar8]

Thanks for the reply, I hope your FES treatment goes well for you!

[lynnbond123]

Dear Incubusls thank you for comment. This happened after a minor running injury. My grandfather also had the same symptoms, he did not walk properly from late forties. My sister also has a foot turn after she walks some distance. The jerks came as a result I am sure of various medications I took to free the leg muscles. Today the feet have had a knock on effect. My knees and hips are also twisted. I will shortly be trying FES treatment. I walk with crutches, splints and occasional wheelchair

[IncubusIsStellar8]

How did this happen? Was it a negative side effect of a medication you took? Or is it normal to just kind of "develop" dystonia? Is is a genetic/inherited thing?

[lynnbond123]

Thank you for your reply Rosenrotdrei I will shortly be doing another video to show changes, prior to going for extensive treatment in 6 weeks time. - a before and after video. As you can imagine my feet have had a knock on effect on the knees and hips . I walk with crutches and use a wheelchair- but I'm playing at being a strong character. Feeling sorry for myself is of no use. Most of the involuntrary movements have gone. I feel this was the result of medication taken to correct the feet

[lynnbond123]

Thank you for your comment mermaids27

All messages help in unforseen ways.

God Bless

Lynn Bond