Explaining The "Jerk Move" Better.

(photo credit - eofdreams.com)

I had a really rough week last week with my balance. The "jerk move" returned with a vengeance. I actually think it was creeping up on me over a few days, and I didn't notice it until it got BAD. I haven't had it that bad since January of 2013. I'll try and explain what the "jerk move" is a little better than I did before.

What do I feel when the jerk move happens? I feel like someone has a grip on my left hip and is tugging me to the left and backward. It normally happens when I try to take a step with my left foot. My left leg will not swing forward far enough, I'll hesitate, and I'll sort of do this funny looking jerk. After I jerk, I can move for a little bit, until it happens again. I'll often feel this tugging sensation just standing in one spot

Another thing that happens during this"bad balance" time is what I call "spontaneous sit downs". I'll stand up and immediately sit back down uncontrollably. This jerk move sensation is uncomfortable and very annoying. There's absolutely nothing I can do to stop it other than getting my butt into the chiropractor ASAP. And that's what I did.

I talked with my chiropractor back in January 2013 about what would cause this. He said it stems from my neck being out of alignment in a certain way. I always thought it was from my lower back or hip being out of whack. I feel it in my hip and lower back because those muscles are compensating for the bad balance and trying to fight not to fall.

This past Tuesday I went in to get this issue fixed, and I had giant knots in my left hip and lower left back. He worked on that area for a while, and while it was a bit painful, it also felt good to have that area relax. Even now, about five days later, I still feel achy and stiff in that area. I'm also dealing with the lingering lack of confidence due to this.

I'm still anticipating the tugging feeling so I'm hesitating with my movements. Particularly when I'm not wearing shoes. But I don't feel that tugging sensation, so my mind is just being mean to me. I just need to work through it, and keep moving.

Hopefully this is a better explanation than my last attempt. It's hard to explain exactly what it feels like. This is as close as I can get.

Ways I Am Dealing With My Fear Of Falling

I have bad balance. Yes, this is true. However, since January, I’ve come to the realization that my balance is actually quite good for someone with cerebral palsy. My main problem is my fear of falling. I’ve come to the conclusion that my balance has never declined since I was a kid. It was only my perception. My perception started to change sometime when I was a teenager, an early teenager at that. I can’t pinpoint the exact event that made my perception changed, and that drives me insane.

As a preteen/early teenager I can’t remember a traumatic fall or other traumatic event that would have kick started this fear. All I know is that one day I was fine to stand in one place not holding onto anything. Then the next day I either had to hold onto something, or I’d need to stay in motion, or I’d fall. No rhyme or reason for it that I can think of. The only traumatic event I can think of happened in my senior year of high school when I fell down the stairs one day at school right before the final bell. Luckily I didn’t break a bone or anything, but it did hurt. Come to think of it, that was probably the first time I started hesitating using the stairs. I used the elevator at school for a while after that fall (big mistake). I am a lot more cautious now when I use stairs. And I absolutely avoid escalators. That is a huge panic trigger for me. But it still doesn’t explain why I suddenly had to hold onto things at an earlier age.

Over the years, this fear has gotten worse. I didn’t even fear falling (other than stairs) until college I think, and even then I didn’t put it together as it being a fear. I thought it was more of a self confidence thing. I didn’t want people to stare or laugh at me. Which has always been true, I’ve never liked it when people (young or old) stare at me. I still don’t, but I try not to let it bug me too much. As it turns out, it was actually a fear of falling. I was falling more and more during my college years, and that led me to avoid things. I only went where I absolutely had to go and nowhere else.

For me, fear turns into panic if I don’t deal with it. I have panic attacks. I know what triggers them, and do my best to avoid those situations, but it’s tough. My panic attacks happen when I know I’ll be walking either on my own (which is very rare) or with someone helping me that I’m not used to. My panic attacks lead me to hyperventilate (breathe rapidly), my heart rate to skyrocket, my entire body to lock up so I can’t move, to start crying, and it leads me to sweat...a lot. I can’t separate any thoughts, they all jumble into one giant nose machine in my head. I can’t hear anything but noise.

I think it was February when I almost had a panic attack in public. Maybe it was January. Oh wow, it was back in December. Here’s the original post I wrote about it. Anyway, I was at the chiropractor’s office, and I was walking from one room to the next. The assistant was helping me, and she’s like five foot four at most. I feel like I can squash her if I fall. We were going slow with no problem. We get to where we need to be, and she lets go. Instant panic mode. Luckily there was a wall right beside me that I grabbed onto (as much as you can grab a wall). I told myself to not panic and to just breathe. I was only on my own for about 30 to 45 seconds, but it seemed like hours. My heart rate went through the roof, but at least I was able to control my breathing, and I didn’t start to cry. She came back and helped me to the chair (she let go to set up a chair), and I calmed down right away. No one knew what almost happened.

So, how do I combat these attacks? It’s not easy. Not easy at all. I have tell myself to stop. Physically stop what I am doing. Mentally stop what I am doing. Focus on counting to ten (or in most cases higher). Focus on controlling my breathing. Anything to help calm me down. The easiest thing is to sit down, but when there’s no place to sit, what do you do? Either keep going or drop to the floor on my knees.

Other than breathing and focusing, there is one solution that I have found. I don’t intend to use this solution forever, but for now it’s helping out big time. I will write about this in tomorrow’s entry as this post is getting long. One hint though. I’ve said before that if I ever found something that gave me the same feeling that alcohol gives me, (relaxed muscles and calm mind) without the brain fuzz, I’d take it. Well, I found it. And it’s helping.

I know, not nice to leave you hanging. That entry will be up tomorrow (Wednesday) morning. If you read my blogs by clicking the link on FaceBook, that might not be reliable Wednesday morning. For some reason, WordPress stopped automatically sending new post links when I publish an entry, so I do it myself. I’ll set it to upload at 5 in the morning, and try to remember to post the link before I leave. If I don’t get to it, just keep checking the blog. It’ll be there, I hope. Actually, I think I just fixed it. We'll find out at 6 AM Tuesday if it works or not.

Shower Safety PSA

This is the PSA (Public Safety Announcement) that I said I was going to blog about in my last post. First of all, let me say up front...I am fine. I'm not hurt, I just had a really scary moment on Thursday.

Let me start at the beginning. About three years ago, I wanted to become more independent as far as me showering by myself was concerned. To be more exact, getting in and out of the shower (tub) on my own. I used to have my husband help me in and out. It was determined that the studs in the wall outside the shower were not sturdy enough, or not in the right place...something like that...for a regular safety bar to be installed. And the walls inside the shower were made from some materiel that if water got into a drill hole (from a safety bar) there was a possibility of mildew or mold growing inside.

Anyway, since a regular safety bar was pretty much out of the question, I started looking for alternatives. I came across suction cup safety bars. I had never thought about safety bars being stuck up using suction cups. I read reviews of a few bars, and I bought my first was through Amazon.



This particular safety bar had "safety colors". When you stuck it on the wall, and if the color was green, you were good to go. If it was red, you had to re-attach it. I used that, but over time the safety colors started to lie, and I got uncomfortable using it. It didn't seem reliable.

I then got a similar safety bar as the first, only it was like a double bar, one on top of the other. Same thing happened though, and I was uncomfortable using it. It kept sliding off the wall, and I re-attached it multiple times during my showers. It even fell off without touching it. So that was definitely out.

The third time I bought a bar, it was one a really liked.



It was a lot smaller than the other kinds, but a lot more stable. I've been using this particular bar for the last two and half years or so. I've had no problems. I've bought three of the same kind actually. The first one broke because I dropped it. The second one has lasted me at least 14 to 16 months. I bought the third one in January or February, because I wanted to have a backup just in case something went wrong.

Another reason I bought the third one was because I was having balance issues galore, and I was being paranoid. Anyway, about a month ago I started using the newer bar. It works fine, but it seems to make a strange noise that the other two didn't make when I first got them. When these safety bars come loose, they make a kind of squeaky noise. I know I should probably reattach it just to be safe when I hear that noise.

Now we come to this past Tuesday. Got in the shower just like normal, did my thing. I needed to stand up while in the shower at one point, so I give a quick tug on the bar just to be safe. It squeaked and popped off the wall. Normally it just squeaks but doesn't pop off. OK, so I reattach it and give it a light tug again. The bar sort of slides along the wall and pops off again. Wonderful, I'm going to be stuck in the shower until my husband gets back from work.
Not so fast, that's why I have the second bar as a back up. I never thought I'd be using the older bar as a backup, but I did. I put the other bar up, and it was OK. I finish my thing, and get out. No problems.

I let my husband know what happened, and he went in to investigate. He comes back and said he did everything he could, and the bar would not pop off. I said, "show me.". Not that I didn't believe him, I just wanted to see so I could ease my mind. So we both go in and I watch him. He could have done pull ups with these things. He twisted, he pulled, he yanked...but they stayed in place.

Now comes Thursday. There were a lot of "I should haves" that day. I should have brought my shower shoes with me. I should have brought my phone with me. I should have slid my shower seat forward more before getting in. I didn't do any of those things. Way back in the back of my mind I always hear a little voice asking "what if the bar pops off as I'm getting in?". It's not always a loud thought, but some days it's louder than others. It was a very quiet thought that day, and I pushed it out of head. After all, I had seen how strong this bar is.

I attach the newer bar to the wall just like normal, and give it a quick tug. It was fine. I step in to the tub with my left foot first and as I'm bringing my right leg in, before I get my foot to the floor of the tub, I hear a *pop*, as the bar pops off the wall. So here I am with my left hand on the wall of the shower, my left leg in the tub, and my right foot almost down. I put my foot down, and think "did that just happen?". Did the bar really just pop off?

At this point, my body is not situated where I want it to be in the tub. My left foot is closer to the right side of the tub, and I want to move it over. I'm leaned over to the left more than I'd like and I'm scared to move it since I have no safety bar on the wall anymore. It hasn't really hit me yet that the bar is off the wall. I'm thinking "this can't be happening" and then it finally hits me. I begin to panic. I start breathing fast and actually start to hyperventilate. After a little while, I get a hold of myself and tell myself to calm down. I say to my self, "Yes, this is happening. This is the real deal, Tee. Just breath."

I take a few deep breaths and I start to assess my situation. I'm standing on both my feet, even if it is a precarious position. I look for my shower seat. It's not close enough for me to just plop down into it (it may have been close enough, but I didn't want to risk it). I'm still holding the safety bar in my right hand. So, I throw the safety bar on the floor. I put my right hand on the wall. I look at my left hand and think, "OK, what can I grab for that is somewhat stable. The top of the wall where it sort of juts out No, not enough to grip really. The shower head pipe where it attached to wall. That's it. So I take a breath and slowly move my hand to the shower head pipe.



Once my left hand is somewhat secure, I take a look at my right hand. Where can I move my hand so it's more secure. I don't want to grab the shower curtain, that would only cause the curtain rod to fall, and then I'd be sure to go down. The shower wall sort of rounds out on the side and blends in with the normal wall. Good enough place as any. So I work my hand over to the curve of the wall.



Now for my legs and feet. Prior to my shower I had been sitting outside, so I was hot and sticky from the heat. So my legs are kind of stuck together and don't want to pull apart. I again take a deep breath and slowly try and move my left foot over. I sort of have a "hitch" moment when my legs un-stick, and I feel like I'm going to fall, but I don't. At that point, I know I'm going to be OK. I didn't fall after that hitch like movement (hard to explain what that "hitch" feels like). I move my left leg over and am definitely more stable. I get into a better position, let go of the shower head pipe and wall, and sit down (why didn't I move the seat forward more before this?).

I made it. Big huge relief, let me tell you. I haven't been that scared in a long long time. There's a difference between being anxious and scared, at least there is to me. I'm anxious quite a lot about a number of things. But I actually got scared when I was in that situation. I did panic when the realty of the situation hit me, but I managed to reign that panic back and deal with it. I'm not sure how long this entire scene lasted, but it felt like at least 30 minutes. It was probably only two minutes at the most.

I sat there for a while just reassuring myself that I was OK. And I never cried...not once. My legs felt like Jell-o for the rest of the day because of the adrenaline leaving my body, but I was OK. I told my husband what happened when he got back, and we're trying to determine what I'm doing so the bar is popping off. He thinks I'm attaching to a not fully flat part of the wall. He's probably right, but why is it happening all of a sudden? He again yanked on the bar, and it actually did pop off for him once. I think it was on part of the ridged portion of the wall though.

I'm trying not to let this incident effect other areas when I have balance issues. So far so good. My walking isn't being effected by what happened. I had a glitch in the laundry room, but I'm chalking that up to having no shoes on. I catch myself thinking about the "what ifs" of what happened. What if the bar popped off when my right foot was higher in the air, or while my left foot was first going in? I need to stop dwelling, and move on from it. Yes, it was scary, but I got through it. It most likely will not happen again. I can't start thinking that it will. It's going to be hard, and I know my mind will flip out on me when it's time for my next shower, but I'm going to be OK. From now on, I'll make sure everything is where it should be...the shower seat in particular. I'll have my phone with me, and I'll be wearing the shower shoes (even if I don't need them).

Moral of the story is, be careful when you're in the shower. Bathrooms are dangerous places. I don't care if you have the best balance and agility in the world...be careful. Take the precautions needed to be safe. And if you do have a disability or other problem that effects your balance, use a shower seat and make sure you have a safety bar.

I wanted to get this out, partly as a warning to everyone to be careful, but also just to get the story out of my mind so I can move on. I'll be doing my best to not think about it from now on. Be confident in my movements and think positive about what will happen.

Pass this story on to whoever you want to. Share it with your friends and family. This really shook me up.

My Escape From Real Life

In a previous blog, I mentioned that it felt odd sometimes for me to say “I have cerebral palsy”. I have a few escapes from that “reality”. I read…a lot. I watch TV shows, and I play computer games. I use these outlets to forget about my “issues”. But I realize there’s one more thing I use an escape from my disability. My elliptical. I didn’t realize this until Sunday. I had a really rough time on the elliptical Sunday.

I didn’t realize how much I used my elliptical as a sort of escape until it was almost taken away from me. I first voiced that thought as I updated my mileage on the SparkPeople virtual walk/run team. I didn’t even think about it until I wrote the following board post: “Thanks for the congrats guys. I appreciate it, especially on those rough days. Today was MUCH better. My balance was a lot more stable today. I only did a mile, but I want to take it slow. I'm just really glad my balance was better today on the elliptical. I was going to get depressed otherwise. My elliptical is kind of like my escape from my disability. I really don't want that taken away from me.”

I stopped right after I wrote that and thought for a while. Yep, that’s really how I feel about the elliptical. It’s a piece of workout equipment I am able to use totally on my own (other than a stationary bike, but I’m sitting down on those so it doesn’t really count). I can get on and off with no help, and I can go for as long as I want and feel perfectly fine. Sunday when I was having the major issues on the elliptical, it got to me. I don’t know why I had such a rough time with my balance that day. It could be the wild winds we’ve been having off and on for months that’s causing it.

The wind seems to be the most likely culprit. Since January, we’ve had strong winds off and on. Not every day, not even every week, but more often than usual. When the winds are high (and I mean gust of 50 mph or more), it stirs up all the dust and pollen and other crap in the air, and it cause my sinuses to go haywire, and I get more headaches during wind storms. My husband says that he feels off balance also when the winds are high. He also gets sinus problems and headaches at those times.

So, I’m blaming the wind partially for my latest bought of balance problems. I don’t want any of my “escapes” to be taken away from me, but my elliptical is probably the number one thing I don’t want to lose.

Stay tuned everyone. I have a very important PSA post coming sometime tomorrow (Friday), so be on the look out.

Sometimes The Body Just Needs To Rest...Longish Rambling Post

As I mentioned Monday, I woke up that day feeling very old. Aches and pains, and just plain yuck. The feeling old part went away after one day, and I did exercise Wednesday, but that was the only day I did anything active. Sometimes, this old body just needs a break. When I have one of these “feeling old” weeks, I search the Internet for information or something to let me know I’m not the only who has these bad days.

I found a blog the other day that I’m going to start to follow. There’s not a whole lot of blogs out there about people living with cerebral palsy (well I should say active blogs about adults living with CP), but I found one, called "In my eyes my life life with cerebral palsy" that I’m going to keep an eye on. Laura’s posts are short, but she’s said various things in her posts that have struck a chord with me. I have good days and I have bad days with my balance. I thought my bad days were due to something I was doing wrong, or I wasn’t in the right mindset. I can’t find the exact quote now, but she says something like you don’t know how your body will feel from one day to the next. I totally agree. It’s a complete crap shoot. Will I be able to stand up and feel like I won’t fall right back down again? Will I be able to use my walker easily today if at all, or will I need the chair?

When I have a bad balance day, I tell myself that my confidence is down. That’s true I guess somewhat, but not really. Sometimes there’s no logical reason for me to have a bad balance day. I’ll be doing my thing like normal, and all of a sudden my body will glitch, and I’ll almost fall. It’s hard to explain, but something just doesn’t feel right when I move. Then one day, it will feel "normal" again.

I still don’t know what event or circumstance happened when I was 12 or 13 years old, when one day I could stand in one spot without needing to hold on to anything, to the very next day needing to hold onto something or else I’d be on my butt in 2 seconds flat. No clue.

Laura said in one of her blog posts, “A lot of my friends don’t like to acknowledge their cerebral palsy…” I always feel very strange when I say “I have cerebral palsy.” Those words don’t sound natural. I don’t feel any different than any other person. I don’t think any differently than anyone else. Also, my case of CP isn’t as bad or as severe as most. I have control (for the most part) of my legs, and my arms. I can talk fine (with a stutter that drives me nuts), and I can take care of myself in terms of personal hygiene. I just have bad balance. That’s what I usually say, “I have bad balance.” Those words seem more natural to me for some reason.

Cerebral palsy technically does not get worse as a person gets older. To a point that’s true. The brain damage does not get worse, but the effects on the body do. It gets harder to make your legs do what you want them do to when you get older. Some days my legs just don’t want to work at all, but I manage to force them to. I read somewhere just the other day (not sure where now) that those people who have CP and can walk, 75% of those people end up in a wheel chair by age 25 or 30 due to fatigue. I don’t know if that fact is accurate or not, but it does make sense to me. I remember starting high school and my body felt OK, but by my senior year, I was having more aches and pains, and it was harder to walk around school  (had a lot more falls that year including one fall down the stairs). I didn’t voice this to anyone since I just thought it was a “confidence” issue.

I’m not saying I don’t have any confidence issues. I most certainly do. But on those really bad days, it’s more of a physical issue than a mental one. That messes with the mind a lot. You have a bad day, and it makes your confidence drop. It’s hard to climb out of that mind set. Your balance comes back for a few days, your confidence goes up. Once it’s up, wham….you get knocked back down again. It gets tiring to keep battling the confidence roller coaster, but you do. It feels like you’re a punching bag for some twisted person looking for fun.

I’m not explaining this clearly I don’t think, but what it comes down to is, I put too much pressure on myself to “fix” my cerebral palsy. It can’t be fixed. I have to roll with the punches. I’ve said this before, and I’m trying to stop thinking this, but I feel like if I don’t walk like I did when I was a kid, I’ll be letting people down. My parents and my sister especially, but also my husband. He’s a wonderful help, but he tends to say what my sister used to say…”It’s all in your head”. And yes, sometimes it is all in my head. But other times, not so much.

Once you lose the ability to do something physically, is it possible to regain that ability? I don’t know. I’ve been trying to get back to walking like I did when I was kid for a long time now, and I really don’t know if that’s possible. Am I destined to have to struggle with moving my legs on bad days? What is it going to be like 10 years from now. If it’s hard now, how much harder is it going to get? Maybe I’m kidding myself with wanting to walk on my own again.

I’m not giving up though. I’ll keep pushing on, one way or another. I’ve always said I don’t want to go on medication for my CP, but I might get me some hot chocolate and rum tonight. Hehehe. It’s been a while.