I have to remind myself that I have it really good.
I have a job.
I’m not in pain and I’m not ill.
I have all my limbs and I’m not blind or deaf.
I have a family who loves me.
I have shelter, a running car, and nothing that I own right now is broken.
My cats are happy and healthy.
The flowers in my garden look pretty.
But I still hate that I have this movement disorder that no one can explain. Tourettism and parkinsonism = no fun. This evening I was at a meeting and both started to flare up. I couldn’t keep my right hand from flapping, and I couldn’t get myself to stop walking like a slow-ass robot. Worse, I kept whispering monstro is sick under my breath. I know people noticed because I was completely exposed, with no table to hide under. At the end of the meeting, the lady sitting next to me said she liked looking at my lovely hands, and I couldn’t help but feel it was her (very nice) way of alleviating any shame I might have felt.
I’m so incredibly blessed, but I still hate that I’m dealing with this. Over the past ten years (starting when I was a young adult) I’ve had very minor tics. But over the past year things have snowballed into something not minor. The parkinsonism is a relatively recent thing and finally convinced me that something was really wrong. It makes me walk like an old woman and it generally flares up in the evenings. Now I’m dealing with repetitive, tic-like thoughts that crash into my normal thoughts like bumper cars. They’re worse than the motor tics because they’re harder to control, and their content is extremely crazy. What’s next, brain? What else do you have in store for me? I don’t even want to think about the possibilities!
I almost feel like I can’t complain about this because I’m functional; I just look and feel like a giant weirdo. So it’s basically a cosmetic problem that appears not all the time but at least part of every day. Usually when I’m all alone. Boo-freakin’-hoo. And while my doctor is staying mum about a diagnosis, at least the drugs seem to be making things less bad. But what I want to know is WHY? Not why me? That’s a dumb question. But why has my brain gone screwy so rapidly? I want a label so that I could look it up on the internet and learn more about it and be able to say something besides “I have an adult-onset movement disorder with a strange thought component”.
People, please don’t take your neurological health for granted. You can be a healthy adult one day and wake up a weirdo the next.
I know what your going through. I’m not as bad as I used to be right now and I don’t know if I could handle being how I was again. I have one word for being like that. Fuck.
You can PM or email me if you want to complain or discuss problems at sometime. You really can as I went through decades of this until another illness sort of overrode this one lessening the ticks.
That seriously blows. I had a motion problem related to an antidepression medication I was on (briefly). Are you seeing a GP or a neurologist? Hope you feel better soon.
No advice or shared experience – just a warm “sorry, monstro honey, that totally blows.” Hope they’re able to sort things out, or at least medicate them into submission.
I am really sorry. Have you ever read the book Against Medical Advice that covers a guy that has a more severe form of this? I have it and could send it to you if you want. I am not sure it would make you feel any better except to let you know that there are other people that go through the same thing but it does cover lots of different treatment options in non-fiction novel form. He does eventually get better.
I second the suggestion of a second opinion, if you haven’t already sought one.
Consider going to one of the better-known Big Guns (like Johns Hopkins, Mayo, Cleveland Clinic etc.) if you aren’t getting good answers locally and if you can swing it at all. I consulted with the guys at Hopkins for my RLS because I was getting such bad advice locally, and I remember during my very first visit, practically bursting into tears because THEY UNDERSTOOD ME.
Oh - and enjoy the pretty flowers, and indulge in liberal doses of fur therapy. This is one medication that simply CANNOT be overdosed on, and there’s little so soothing as a lapful of warm, purring, happy kitty.
Sorry to hear about your problems, monstro. The issues you are having seem awful and the lack of a nice label or diagnosis sounds equally as frustrating.
Don’t beat yourself up about feeling bad for yourself. It’s ok to feel bad for yourself, and even ok to want other people to feel bad for you. Just because you know other people might be worse off doesn’t mean you don’t deserve a little sympathy or don’t deserve to feel bad.
Mama Zappa is right about fur therapy. It’s amazing how cats and dogs “understand” human emotions. Have a good cry in front of your cats and see how they react. You’ll have your sympathy fix in no time.
I’m so sorry this has come into your life, I hope someone gets a handle on it soon.
I grew up in a home where whatever my upset or problem was, I was told, “Well, if that’s the worst thing that ever happens to you - consider yourself lucky!”. It was like a broken record. We were just children and it wasn’t until years later, in therapy, that it was pointed out to me exactly how unhealthy this attitude is, and how damaging to children. It discounts what they are currently feeling, it’s a way of shining them on, instead of acknowledging their pain.
It was a revelation to me! And it changed how I handled and thought about my own difficulties, substantially and positively. I mention this only because it is not healthy to discount your own challenges and trials by saying, ‘it could be worse’, please don’t make a habit of it. The challenges you face may well take endurance and fortitude, the journey may be long. This bad habit won’t make it easier or shorter.
I’m sorry you’re sick, monstro, and suffering embarrassing symptoms. I really hope you get a diagnosis (and hopefully a cure) soon. I think a second opinion would be a good idea, too.
Thanks for the kind words, everyone. Today I feel better and less pissed off.
FWIW, I’ve been to a neurologist, two psychiatrists, and now I’m working with a neuropsychiatrist, supposedly one of the best in town. I’m so sick of describing my symptoms that I don’t care to go on yet another search. And besides, this doctor actually listens to me when I tell him what drugs I will not take. Like, when another doctor thought I should go on haldol, I was all HELL TO THE NAW! and my doctor concurred and prescribed me something else.
I do go to therapy, where I can wallow and worry out loud for an hour every week. And it has been supportive. But I still feel like it helps not to think about it. The more I think about it, it becomes a bigger deal in my mind. And really, things have gotten better since I’ve been on the meds. I was once at Trader Joes and it took every grain of my being to pick up my feet from the ground and simply walk. That doesn’t happen anymore. I know benzodiazepines are addictive and hard to ween off from, but Klonopin has helped a whole lot.
The thoughts are actually more concerning than the movements. I’m really sensitive to dyskinisia side-effects (which can become permanent), so I can only be on a low dose of my anti-neuroleptic. I think that’s why my thoughts haven’t been reigned in as well as my movements have. But still, they have been reigned in somewhat. I’m very thankful to modern medicine.
elbows, I do agree that I shouldn’t downplay my pain, but I’m not letting it sink in too much. If I keep telling myself that things will work out, then maybe I’ll eventually believe it.
There are palsy type disorders, but Parkinsonian type stuff is generally due to progressive loss of cells in the substantia nigra, which is to say a progressive loss of endogenous dopamine. That should be detectable either by some sort of fMRI, and/or tests of your neurodopamine levels.
But I’m about two degrees and twenty years short of being a neurologist, so take that with a humongous mass of salt.
Strange! I could have sworn I posted this last night. But…
It is impressive to be able to battle something you don’t even understand, and then still have the good grace to think you don’t have the right to complain about it! That’s what makes you such a cool cat. You keep your head up, even when it is so hard to do that.
Just wanted to throw some support and say I am glad you are feeling a bit better.
My doctor prescribed different medicines that messed with the brain chemistry. They all were way worse than diazepam which ended up being a great treatment. Haldol was horrible for me. The only reason we didn’t try the diazepam first was it’s such a stigma drug. I wish we had tried the diazepam first and damn the social stigma.
Monstro, sending good thoughts your way. IMHO, coping is a balancing act between acknowledging the suckiness and being optimistic and positive. There is a place for both “I hate this, it sucks to be me” and “it could be worse, at least I have ____.” The trick is not to do too much of either, as both are true: Your disorder is frustrating and you do still have a lot going for you. Ignore either side to your peril.
