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Ataxia Support

Marijuana

6 years ago I was a pot head all day everyday. The I got pregnant and quit cold turkey. After the baby I smoked about 5 hits every weekend. Got pregnant again and quit. Afterward I’d smoke 1-3 hits every 2 weeks. Then increased to every weekend. In Nov 14 I was diagnosed with SCA2, started smoking 1-2 hits daily. My symptoms got so much worse, especially balance and writing. EarlIer this week, I made the difficult decision to quit again.
Today the reality of the disease hit me hard. I want to get wasted. I haven’t decided.
After reading others. I figured smoking would help not worsen. Anyone else have this problem?

DOPE.---Really...Do I need to say any more..."Dope"...

Some call it Pot...Some call it Weed...Call it what you will...MATTERS not to me...

Before I say anything...Cause I realize I'm walking into a FIRING-TARGET...I want to make a few THINGS...Or...So CLEAR...

First...God didn't DIE...And...Leave me in charge...So...I AM-NOT-JUDGE-&-JURY...I'm also NOT an [ Executioner ]... Either...

Secondly...I myself have ---------->>"ATAXIA" as well.....So...I do share a COMMON ( DENOMINATOR )...

What type do I have...I'm NOT sure at this point...And to be quiet FRANK...I really don't care...I'm ready to DIE...ANY-DAY---ANY-SECOND...

What does MATTER to me...{ And I'm SPEAKING-ONLY-FOR-ME---NOT ANYONE ELSE }...

What DOES matter to me IS...What do I do EACH-AND-EVERY DAY...

Thirdly...I AM [ NOT ] a shame to share---I AM a Born-Again-Christian...

Now---That may NOT mean anything to you...That just SUITS me FINE...In FACT---Go ahead SNICKER / MOCK...Go ahead say: " Oh Brother" Say what you so DESIRE...It will NOT change a THING...

Now...There are THINGS you believe strongly...Again...That's perfectly FINE...( YOUR-FREEDOM-OF-CHOICE )...Just as you have THE---( FREEDOM-OF-SHARING-YOUR-OPINION )... Yet---Guess-What...? So do I... Fourthly---Anything I say---Anything I bring to the TABLE--You ALL need to KNOW...Please don't miss this NOW...Especially YOU---Who have your STONES ready to throw at me...YOU-ALL need to KNOW... I CARE---I REALLY DO... EVEN if you Believe it to be NOT { TRUE }... Once again---I'm NOT here to play the Role of Judge... You do say as you please...As long as you Respect me...And...Show CONSIDERATION for me as well... Good---Now that we have an UNDERSTANING...I believe I can RESPOND... I grew up with Pot / DOPE...Started as a Child...It was my Older Brother---Who taught me how to SMOKE / Roll a Joint...While sitting on the Bathroom-Floor...Legs cross...And...ALL... I grew up on the Streets of TORONTO...Not out of DESIGN--Nor---DESIRE...It was what Life had to hand me... As a Boy---I was in 21 Foster-Homes...( Just allowing a little-History to leak out )... So...I grew up with "POT"... I SMOKE IT--DEALT IT...GREW IT...SMUGGLED IT...You NAME-IT---I DID IT... GET-THE-PICTURE...? EVEN WENT TO PRISON FOR IT... Am I BOASTING...? What do you THINK...? I EVEN SAW KINDRED-SPIRIT-FRIENDS--GET BLOWING AWAY OVER "POT" ( DRUGS )... Now...here we are...In the YEAR 2015...In a Day / WORLD...Sooooooo OUT-OF-WHACK...Soooooo falling apart...And...Now...You can't even ride the City-Train...With-out witnessing People SCREAMIN at each OTHER... Now we have The LAW supporting Doctor's Giving THE-STAMP-OF-APPROVEL of Smoking "Pot"

Like BEER-BOTTLE...What Label do They put on a Bag of "Pot"...?

[ FOR-MEDICAL-REASONS / PURPOSES ]...

And They say I'm STUPID...?...They say I'm the ONE with a Problemo...?

Hmmmmmm...Interesting...

Ok...I have ATAXIA...I'm a TPYE II---I have a regulated HEART-BEAT...I'm far from PERFECT...

I'm a LOVING-DIVORCED FATHER-OF-5 BEAUTIFUL-CHILDREN...

You know what---At least I know what I am---And---What I AM-NOT...

DO THEY---DO YOU...?

Just FOOD-FOR-THOUGHT...

"POT"...The only THING "POT"...Or...Any DRUGS for that matter...

Was reduced my VOCABULARITY to ONE-WORD...

"WOW...!!!"...

Go ahead say it with me...We can even say it BACK-WARDS...

"WOW...!!!"

You may believe "Pot" is OK..

Ok...THAT'S YOUR-GOD-GIVING-RIGHT...

I do NOT---Will NOT---EMBRACE that IDEOLOGY...

I don't care how many DEGREES the Person who gave THE-GO-AHEAD...

I don't care how many that Person has STUCK on Their walls...

Hi my name is Miles and was diagnosed some 15 years ago, now after blood tests they think it could be sca5. Yes it’s awful but you learn to cop, exercise helps but you manage. I am now in a wheelchair which i hate but is a necessary so you accept it and carry on

I smoke mj every day. Like alcohol, it is an intoxicant, so it makes things like balance and speech more difficult. I do it at bedtime to help with sleep and chronic back pain. It helps those and since I am in a wc, I could do it all day but choose not to as it Interferes withi thing like exercise, reading, playing games on my IPad, etc. I think it depends on why you use it.

I’m not naming names, I’m disappointed in one comment that chose to reply by ranting.
this is an important topic to me. I need to feel, like many of you, that I’m not alone.

I don't smoke pot anymore but I used to smoke it a lot. I know how it makes you feel and I think I would use it like Lorraine, only at night or when I am feeling pain.

OK, I don't believe pot is worsening your symptoms. It is probably the natural progression.With that being said, are you eating healthy, and exercising/moving? No 'drug' (and I use the term loosely) will help your ataxia. NOTHING is going to make you walk better, slur less, etc.Get the stoner mentality out, and let the medical marijauna mentality take over. Pot can alleviate some of your symptoms....poor sleep, appetite, pain associated with some types, anxiety, etc. It is not a cure all like if you smoke, you will get better. Do some research....get educated. I was a rock musician in the 70s and 80s, so I did my share, and many others shares too.There is a big difference in an abuser and a medical user. Forget alll of the stigma that uninformed opposers have. They don't matter. They probably eat prescriptions by the handful. But that's OK because an uninformed DR. in BIG PHARMAS pockets told them to do so. I urge EVERYONE TO WATCH AND LEARN https://www.youtube.com/watch?v=4C3zk-wFrnk

I also use cannabis, I use it to help with sleeping and relaxing my body during the day. I use edibles at night and do toke sometimes during the day. Im 80 yrs old and have been a toker all my life and have never found it to be a problem in any way. Jerry

Stephanie, I , personally, wouldn’t take offense at the ranting. Some people are like that. Just don’t take it personally. I know many people get a lot of benefit from marijuana for a variety of medical conditions. If it helps you, use it. If it doesn’t, then don’t. Like Jonas said, it’s just a different mind set of using it in a recreational or medicinal way. Just like with any medication. Some will work for some people but not for others. If you are concerned about the " high" feeling, if it’s something you tend towards addictive behavior with - then try the strains that are high in cbd’s and low in THC.

To be honest Jonas and oblidioblida, I wasn’t using it in a medical way, I was abusing it to forget if only for a moment. I’m very lucky, in as much as, my ataxia isn’t painful. And I was diagnosed early enough that right now my speech isn’t affected. My 2 main symptoms are bad balance and sometimes my writing is sloppy.
Its weird that no one else seems to have my problem, where in even a small amount of pot(usually but it depends on the kind) makes my balance 100 times worse. Writing too.
thanks for all the comments (except the first)

I'm so glad to finally see people adding more positive comments instead of just ranting on and on. I thought this sight was for support, not criticism. So thank you to all who are here for support, information and understanding and not negativity.

Yeah Steph, that guy is an ass on Facebook too

That’s very interesting about the balance being made worse. I’ve never heard of that, but it’s such a small sampling of people, and ataxia is so unusual, – so it never surprises me if there isn’t someone else with the same experience.

I’m 26 I have sca2 as well, decided not to have kids.

I mean I smoke the occasional joint but it does make balance and stuff worse. I’m not going to stop having fun you know? But after the high is over I’m back to my self. You just have to decide do you enjoy pot enough to let it mess u up temporarily, If you do Carry on love!!

Lila thanks for your response. Now I don’t feel weird because it happens to me.
I had kids before I knew.

I have smoked weed in the past in my youth and have always said that i would prefer a joint to a drink.
I am on day 9 of a detox for alcohol and am very proud of myself for staying within the programme. I still manage to work 4 days a week however; I have an office job so not too much walking around even though at times it can be quite stressful as I am a manager of a care home. I have spent the last 6-7 days in and out of sleep due to the medication I am on. That comes to an end on Saturday and then back to work on Monday . I am so very frightened of what will happen when the detox is over as I so don’t want to go back to being a drunk. I have thought about MJ but it’s just something else that I’ll be reliant on. I so want to be normal again if only for my kids who have seen me at my worst and not a normal, loving Mum who just wants to be Mum. I’ve done so well but I know it’s going to get harder especially when I have a bad day as its easy to reach for the bottle but I’m going to do it. I have to do it. I want to do it.
You do whatever you need to do and don’t ever let anyone try and change or stop you from being you. Good luck xxx

Beverley, good luck on sobriety.
I only smoke 1 hit, after the kids go to bed. So they’ve never seen me or know. Just enough to help me relax.

Hey I can’t smoke any smoke in my lungs will be fatal, but there is an alternative cannabis oil. I am gonnnaa try it I will let everyone know…

Thanks natural beauty. Please do.

hahaha that rant was funny though. I have SCA3 & my symptoms aren't ruining my life yet fortunately, my family gets hit in late 30s it seems, so I still got a decade of quality independence, so I can't share experience so to say from how pot does me, but I do look forward to seeing how it effects everyone else. God bless & good luck with your endeavors. Be proactive for the best experiences!