spastic paraplegia and me

[PepLacy]

Our family has the hereditary (HSP), genetic, and the test runs a few thousand bucks. It's been in our family since 1805 (cousins married).

[seandamondotcom]

I was just diagnosed with a Motor Neuron Disease Called "Primary Lateral Sclerosis" which is very similar to HSP. Let me tell you, at 41 years old, this disease SUCKS! ANYONE who makes fun of others who have a disability, illness of any kind is a fuckin creep! People treat me different because of this. We don't want NOTHING from you. Treat us like a normal person for piss sakes... Beware, that lifelong illness can affect anyone including YOU! So think twice before you make fun of others! KARMA

[Fergysbabe]

I was told it was hereditary, the dna shows it is very close to ms (multiple diseases) Ihave pain in legs especially at night. Poor bance and fatigue during the day. Stress makes it worse.bright lights and heat cause symptoms like seizures take lorazepam .5mg Alprazolam .5 mg for night But pain is getting worse so who knows Baclofen made it worse dna test didn't help at all, just depressed you because your told yep you have it but nothing we can do. B12 and fish oil may help try anyth

[zugurudumba]

Excuse my ignorance, but is spastic paraplegia strictly hereditary? Are there other forms of this disease?

Thank you.

[Welshickledevil]

i have HSP aswel...its hard 2 explain to ppl wt u have n wt u go thru on a day 2 day basis :(...where im from Anglesey my family r the only ppl that have it...i just keep positive :) xx

[blackbayou]

I have spastic paraplegia also.. so bad I'm now confined to a wheelchair 24/7 hang in there young lady!!!

[krellamps]

Hang in there, all I can do is pray for you and others that we can have the strength to get through this and be comforted during the hard times. Your a brave one alright! God bless!

[krellamps]

I thought I was only one. Paralyzed from just below chest. I'm incomplete so I do have some feeling and movement. I'll get a kicking spasm, where it won't stop unless I work with having a bowel movement. I've been given shots of Valium(diazepam) and dilauded. But it still won't stop unless try rect. Stim. And used to have to use suppository's. It keeps me from going out and from sleep. Baclofen, diazepam, Ativan are meds I'm on. I had colostomy and they went away for a month. It stopped workin

[Shardauka]

i suffer from spastic paraparesis and it`s horable trust me , the pain is enormous

[SNAKEMESH]

im typnig with my forehead. thakouy fore the share xx

[nurselady83]

I understand what you are going through. I see this all with my husband, who has hyper-spastic parapaligia. I give you props for telling your story about this rare and dibilitating disorder. i hope all goes well with you.

[IlluminatiSeer]

I had full body Spasms And after a whole bunch of drugs, ive found nothing works.. nothing !!!!!! Its not as bad as most but, its a small twitch on different spots on my body... I stopped it by controlling my breathing because i was hyperventilating ! Everyone pleaseee try it out.. i need to know if it works for others.. if it does .. i will tell the whole world !

[09nob]

spastics are boring but paraplegics are great because you can pick them up and wank yourself of with them.

[josesegu8]

Thank you for helping people understand & not feel alone

[kaazoom]

Does it affect your cognition at all? Such as information processing, short term memory and executive function?

[kaazoom]

Thank you for sharing your story.

[rebco77]

Rachel, I've had many difficulties that come and go. No one seems to know what it is or takes it seriously. I'm stiil fighting to find a diagnosis. I posted 2 videos and would like to know if you suffer anything similar.

Check it out and feel free to comment. Plus there is another video of me singing, completely normal. So I don't know if you go thru the same on and off spells. Let me know.

[wyldewynd]

hi nice to see your video I have a friend who has HSP.

[aalexjohna]

filthy spastic

[twinkie116]

I am married to a woman who doctors thought had CP but when our son reached walking age we were shocked: He could not walk, just like my wife. So now I live with 2 people with HSP. I am quite bullshit. I hate this disease. I am angry about it. I need a cure for my family. The others who made ridiculous comments WTF dudes?

[accatt2204]

I was just diagnosed with HSP (or familial spastic paraplegia) and thank god for this video. I hope its good for you to know other people are ion this situation. I tried to take an MRI on 2mg lorazepam but my muscles spasmed too badly to get an accurate reading. Its painful to walk alot so Im on 5mg Opana 3X daily and lidoderm patches. Im just hoping the physical therapy helps the spasms, and it doesnt progress too quickly. I wish you the best, and hope you stay strong. :)

[lifealteringevent]

I have Charcot-Marie-Tooth disease which is a rare form of Muscular Dystrophy. Genetics doctor now thinks I have Hereditary Spastic Paraplegia. The most painful is the burning sensation in my biceps. It was painful only after lifting or reaching, but has now begun to linger without any activity. My right leg has tremored a few times just from bending over to pick up something.

[inmepete]

thanks for that vid rachel, it was very insightful. I am a support worker / carer and work with people who have spatic paraplegia and it's very eye opening to hear someone with the condition talk about it so openly. I'm going to uni in September to study social work! :) thanks again Rachel x

[twocky61]

Incidentally Rachel - has anyone told you you are strikingly similar to Lisa Coleman who played Jude in Casualty and Cas in Tracey Beaker? Yes you do Rachel!!

[twocky61]

Hi there again Rachel - I was in Norwich last October and I did visit the forum and look for you!! Alas you were not there. Never mind - it was only on the off chance to buy you a coffee and meet you as I said before you are such an inspiration!!

Take care Rachel

Nick

[crpnsu2966]

We donot call them disable , they are differently able.

They are our brothers.

We are the members of same family.

[xmiddlename]

I really do think the persons who talk negatively about disabled people are going to have children with such disabilities shame on u closed minded people who do not understand the struggle of having a neurological disorder...well i take care of people with both mental and physical disabilities not to toot my own horn or try to show off and say im better then you but i feel that the world can rid itself of negative people like some of you here..Rachel i admire your courage best wishes... :)

[twocky61]

Just had to reply to one point you made - you said you'd like to hear from people in a similar situation to yourself - whilst not suffering from spastic paraplegia like yourself a friend suffers from multiple sclerosis - obviously she has more mobility but I showed her this video and she was inspired by it to do more - Thanks Rachel - all the best

[twocky61]

Don't worry about all those negative comments Rachel - I just think you're brave to go public and tell everyone about yourself on YouTube - Take care

[CarpeDiem07]

to all who posted a negative comments here I say-------------Go and get a life and if you can't , get lost.

[rudeboy2k8]

u make me sick u self center heartless spaz i hope u hav a spazzum and fall out of bed and ur bladder gives in and u wet urself ........................u spaz nobhead

zzzzzzzzzzzzzzzzzzzzzzzzzzzzzz­zzzzzzzzzzzzzzzzzzzzzzzzzzzzzz­zzzzzzzzz im so bored p.s. dont make up excuses ur a spaz end of u fat ugly nobhead retarded spasticatid downsindrom rabbit

[videolver2]

yes you are a rude boy and shut up. want someone to make fun of you if it happens to you?

[kingriedak]

dude...you kinda are a bit fucked up...so go somewhere man...

[lazydalion]

hey you guys should not make fun of others i don't find it funny at all there are funny things on your tube but this is not one of them so take it easy with the insults

[tzhaarownage]

she cannot help it so shit it you unkind monsters

[denstone111]

I believe what goes around comes around. I hope you, your children, your family, your brothers, sisters get whats coming to them.

[aove17]

walkwanker whatever your name is shut the fk up ,

[leahpurr]

omg u pig u actual pig

u couldnt do no betta

infact im not sure weather u are a spaz ur slef soo FUCK U MATEEEEE!!!!

[denstone111]

Your disability is that you're an idiot!

[Nickamsweet]

lol awesome