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Posts Tagged ‘cerebral palsy’

My Walking Progress

November 17, 2013 Leave a comment

friends_walking_arm_in_arm_FAN2016693

(photo credit – www.visualphotos.com)

It’s hard for me to tell just how much progress I have made with my ability to walk. Once I sit down and think over the last several month, I realize I have made significant progress, in many areas of walking.

Walking with others. This is probably the most significant aspect lately. In an earlier post I talked about how I basically just other people’s ability to help me based on their body type and how strong I think they are (wow, I just read a bit of that post, and my mindset has changed drastically since then). That’s very bad on my part. I talked about how I needed to trust others more, and trust myself more. I have done that.

Since that post, I’ve had five other people help me walk somewhere. Five! That doesn’t count the chiropractor or assistant #1, let’s call her “D”. I’m now completely confident (more like 90% confident) with Dr. Van Loon. I am getting more and more confident with “D”. I have also had assistant #2 (let’s call her “Y”), help me a few times and am getting used to her. Plus, my niece “K” has been helping me around a bunch lately, and it’s getting easier.

About a week and a half ago, I went somewhere with my “K” and my in-laws. During the time we were out, both my mother in-law and my father in-law helped me. Those were probably the scariest times for me. My judgmental state of mind rearing its ugly head. My in-laws are older, and they both have bad knees and have a hard time walking themselves. I let that get the better part of me that day, so I was more hesitant and unsure of myself. But, it all worked out. I had a few bobbles with my mother in-law, but I stayed on my feet. I did take a Xanax that day, but it wore off while we were out (we were gone a long time). So the walking I did with my mother in-law was without anything in me. Good thing was I didn’t have a panic attack. My heart was racing, but I was able to control everything else.

Think that covers everyone who has helped me so far. And there will be more people in the future who will help me also. The thought of that actually makes me anxious, but it will happen. I need to get used to it. Side note, I went to the doctor for an annual checkup and the doctor and I talked about my anxiety. She says that I need to not be afraid to ask for help. I’m not afraid really to ask for help, but I don’t like to ask for help either. I like to do things on my own if I am able. She said people are more than willing to help others, some actually want to help because it gives them a good feeling. I understand that, and I’m trying to get that in my head. If I need help, ask. I still feel sometimes that I’m putting pressure on people when I ask, or that it’s an annoyance to help me. Need to get that out of my head.

So, I have made quite a lot of progress. I have a ways to go to where I want to end up (totally able to walk unassisted like I did when I was a kid), and I think I can get there. I haven’t fallen yet when someone else has helped me. Came close a few times (once with “K” and once with my mother in-law). But not yet. It’s best not to think about that. I’m not putting a goal date for when I want to walk alone after all I have done that already, little bits at a time. It will happen when it happens.

The major thing I need to work on still is the fear, anxiety, and panic attacks. I did get my own Xanax prescription the other day too. I don’t plan to take it too often, only when I really think I’ll need it.

And that’s that. I’ll be working on all of this forever, so I will send in updates on my progress when ever I think I’ve made more progress. Practice make perfect (except with oral presentations, still going to avoid those like the plague. No amount of Xanax can help me with that, hehe). Walking with cerebral palsy is tough no matter how severe the case is. But, it’s better to walk than not.

Mileage Monday

September 9, 2013 Leave a comment

I think my FitBit Flex is going to keep me moving. I feel guilty when I log into my FitBit account and see my low step count for the day. Right now, I have a goal of 5,000 steps a day. I might set that a bit higher eventually. Five thousand steps isn’t a lot for the “normal” person, but with someone with cerebral palsy, that’s pretty good.

I exercised five days this past week, and my body feels. it. I took Saturday off, but we ended up walking around Costco for about an hour, and that in itself is exercise for me. Hard floors, lots of people, and a big store can fit the bill for a workout. I did a mile on the elliptical today, and my legs are now tired. I need to make sure I stand up and move around the rest of the day though or else they’ll lock up and be very stiff. Will be on the floor later to stretch it all out too. That helps.

I’ve got five pictures for the last week from the virtual walk site. I have about 4.7 miles to go to reach the town of Emmalena, KY in Knott county. I should easily be able to get there this week. Here are the pictures!

Mile 630.6 (watp for 1 mile)                                      631.6 (Elliptical for 1 mile)

630.6 Leslie for 1                    631.6 Elliptical for 1

Mile 634.6 (watp for 3.1 miles)                                  Mile 635.6 (Elliptical for 1 mile)

634.6 Leslie for 3.1                    635.6 Elliptical for 1

Mile 636.6 (Elliptical for 1 mile)

636.6 Elliptical for 1

(photo credit – http://exercise.lbl.gov/index.html)

I’ll be doing a “first impressions” post on my FitBit Flex sometime this week. I’m still getting used to it and learning about it. But so far, I love it.

Keep moving!

Big Solution For My Fear And My Panic Attacks

Xanax

Ok, so I know you’re all dying to know what this solution is. Here it is: Xanax. There you go. It’s an anti-anxiety medication, and take it from a big skeptic…it works. My mother in-law has a prescription for Xanax, and she’s offered me a pill here and there for years. Mostly when we fly back east. I’m not a huge fan of flying and I tend to get anxious. I’ve always turned her down though. Until January.

In January, my husband and I started to work on my balance and walking without any support at all. This is how I came to my realization that my balance was actually fine, and it was my fear getting in the way. So, one day, we were out in the living room. No one else was around, so it was a good day for it. I didn’t have to worry about doors opening and closing, people sneezing, or other noises that cause me to jump (darn that jump reflex).

I was anxious during my practice, and my body was so tense I could barely move. One thing that helps that is if I close my eyes. So I closed my eyes and kept doing what I was doing, which was walking with my husband behind me. Then he had me keep my eyes closed and he spun me in circles so I didn’t know what direction I was facing. I didn’t know where the couch or chairs were. No clue. Then he let go and had me stand there with my eyes close. I got a bit more anxious, but not horrible. Then, the whammy. He told me open my eyes. I opened them, and it was instant panic.

I was in the middle of the room, nothing around to grab onto, and my husband was several feet away (still close enough to catch me if I fell). My entire body froze and I lost it. My breathing got out of control, my heart started racing, and I felt like I was going to die. But, I didn’t fall. So, now, we had a big clue as to what we had to work on. Balance is fine, mental state is not. So we kept trying this, and it ended up the same way each time. As I was sitting in the chair trying to regain control, my in-laws came back from wherever they were. They knew something was up, because I was trying hard not to cry.

We told them what was going was going on, and my mother in-law offered me a Xanax. I finally relented and said ok. However, I did not take one that day. I waited a few days. I wanted to take one before we did this “balance practice” again. I took one, and waited for 25 minutes. Honestly, I did not think these pills were going to do a darn thing. So we worked on walking and balance again, and it worked. I still felt anxious, but nowhere near as bad as before. I also avoided a panic attack after I was spun around in circles with my eyes closed. I opened them, and was in the middle of the room again with nothing around me. I stayed somewhat calm and never lost it.

It didn’t hit me until the next day just how effective it was. The next day we did the same thing, only without a pill. Same as before, I was spun around with my eyes closed. Opened them, and instant panic. I was also a lot more tense in my legs than I was when I used the pill. I had no clue Xanax did as much as it did for me. It relaxed my muscles (nice bonus I wasn’t expecting), kept my mind calm, and let me work through what anxiety I did have. I’d have to say that it cut out about 85% of the anxiety. It was still there, don’t get me wrong, but it was manageable at least.

Since January, I think I’ve taken 5 pills. I do take one when I go to the chiropractor, not just to avoid panic, but to loosen everything up. It really surprised me how much it relaxed my body. I don’t know if that’s because of the medication itself, or the fact that my mind was calm. I don’t think Xanax is used primarily for relaxing muscles (it’s mostly for anxiety), but it does have that side benefit.

I don’t plan on taking it forever, although you never know. Xanax can be addictive, but only if you take it every day. That’s not my plan. I only plan to take it when I know for sure I’ll have to walk by myself or with the help of someone I’m not used to. Remember my incident with the chiropractor’s assistant? Since then, she’s helped me out a few times, and thanks to Xanax, I’ve been able to handle it. As a matter of fact at one appointment, she helped me out to the waiting room when I was done, and she actually let go and walked behind me. I didn’t freak out. I just kept walking calmly. I was a bit more unsteady, but I didn’t panic. That was a big woohoo moment.

When we get back from vacation, I’ll be talking with my doctor about getting my own prescription. I feel bad for using my mother in-law’s. She doesn’t need them very often either, which is good, but I do want my own.

I lasted 38 and a half years without taking any medication for my cerebral palsy. For the record, this technically isn’t for my cerebral palsy, but for my anxiety. So I guess my streak can continue. My mental issues finally got the better of me, hehe. I say, if it works, do it!

Ways I Am Dealing With My Fear Of Falling

panic-attack

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.

Mileage Monday

March 18, 2013 1 comment

Got behind again in my posting here. I’ve been reading Tina’s blog, Living With Cerebral Palsy, and one of her more recent posts said it’s good to get into the habit of blogging every day, even if it is boring. That’s my problem. Many of my day to day activities are boring and not exciting to read about. I can complain all day about my bad balance, and fear of falling, but not a lot of people want to hear about it daily.

But, I think that’s what I’ll try to do anyway. I’ll do my best not to whine and complain, but just  relate my experiences with cerebral palsy. Ups and downs are a way of life for me these days regarding walking and balance. Some are good, some are bad. I do my best to combat this nasty nasty NASTY fear of falling, but it gets the better of me a LOT. So I’ll be talking about my fear and ways to combat that in upcoming posts.

For now though, I have gotten behind with my mileage posts. I recently upgraded to Windows 8 and have lost the ability to use a program called Windows Live Writer, so I’m actually writing this on the WordPress site itself. When I add pictures using the WP site, they’re huge, so I’m going to limit my pictures to two at a time.

On the virtual walk site, I’ve passed through Honaker, VA and am about a mile and a half outside of Council, VA. I’m gaining more miles because I’ve started doing Leslie Sansone’s dvds again. I’ve gone a total of 533 miles so far. Here’s some pictures from the site.

Mile 525 (Elliptical for 1 mile)

Image

 

(photo credit – Copyright 2006 Lawrence Berkeley Lab)

Mile 526 (Elliptical for 1 mile)

Image

 

(photo credit – Copyright 2006 Lawrence Berkeley Lab)

Keep moving!

Mileage Monday

January 7, 2013 2 comments

Hope everyone is having a great 2013 so far, and that you’re all making progress on your goals and resolutions. My goals are coming along. I am taking a short walker break at the moment, but will get back to it today most likely.

Why am I taking a break? I have a tendency to hold the walker with a death grip, and my upper back muscles, arm muscles, and neck are sore. I need to learn to relax and just go. That’s a fear of falling thing. If someone is behind me, I’m fine, but if not, I tense up. Good news is though I used my walker at the chiropractor’s office the other day, I had no problems. Will keep working on it.

Since I’ve been a bit sore, I’ve also not been on my elliptical for a whole week. Whoops. That will start today again also. Luckily, I still have a back log of virtual walk pictures to upload. So, without further jibber jabber, here ya go.

Mile 504.2 (Elliptical for .8 mile)                                Mile 505 (Elliptical for .7 mile)

504.2 Elliptical for .8                   505 Elliptical for .7

Mile 506 (Elliptical for 1 mile)                                    Mile 507 (Elliptical for 1 mile)

506 Elliptical for 1                   507 Elliptical for 1

Mile 508 (Elliptical for 1 mile)                                   Mile 508.4 (Elliptical for .5 mile)

508 Elliptical for 1                   508.4 Elliptical for .5

 

(photo credit – Copyright 2006 Lawrence Berkeley Lab)

Keep moving!

Trust Issues

December 10, 2012 4 comments

Trust

This weekend just flew by. Not a whole lot going on. Had my back adjusted again yesterday, and I feel all shiny and new again. It wasn’t nearly as bad as the first time, but things were definitely out of whack again. Things shifted too. I had knots on the right side of my back instead of the left. Basically everything that was out of whack on the left side last time was out of whack on the right side this time.

He actually said I had a rib out of place. I asked “Wouldn’t I have felt that? Wouldn’t that hurt?”. He said it sometimes happens when you sneeze or cough harshly, or when you shift around while you sleep. It doesn’t always hurt when it happens. My guess is it happened in the middle of the night. I tend to jerk around a lot. I’ll wake up thinking I’m falling out of bed, and then freak out. I roll over roughly a lot too which is a good time to things to shift.

Anyway, things are good, and I plan to go back in another three to four weeks to keep it that way. I was feeling some pain again when I went in, but it’s better now.

There was a bit of awkwardness, but only on my part, since I’m paranoid. Not paranoid…I don’t know what the right word is. Untrusting is more like it. I don’t think anyone is out to get me ore anything, but I tend to ward off other people helping me. When we go out, I hold onto my husband’s arm. I’m used to it, and it’s what I prefer. When someone else helps me in that way, I panic. It’s my own mind playing tricks on me, and I need to get used to other people helping me like that.

Anyway, my husband had an appointment (with the same dr.) at the same time I did, so he helped me to the first room (with a roller table that I could be on all day if I was allowed. It’s a table with some sort of roller that massages up and down your back, and it feels sooooo good.). When my timer dinged, the doctor came in, and he helped me to the second room. Normally I feel strange when another person helps, but this wasn’t too bad. I was a little unstable, but still fine.

Got my back adjusted, and had the “stim” (tens unit) on for about five minutes. When my timer dinged this time, the assistant came in to help me. Now she’s a super nice lady, but she’s also tiny. She’s about 5 foot 4 maybe, and very small. I felt like I could crush her with my pinky. She helped me out to the other room, but I was very slow, unsteady, and unsure of myself. Then she let go! Luckily we were beside a wall, so I held on there for dear life. She didn’t know, she was just setting up the chair for me to sit in. I don’t think I gave anything away, but I had myself a nice little anxiety attack.

Made it to the chair and all was fine again. Got the heat treatment for 5 minutes, and then I was done. Thankfully the doctor helped me out to the waiting room where I waited for my husband to finish.

All this tells me I need to relax, have other people help me more often, and to trust that they know what they’re doing. What’s the worst that can happen? I fall and have to get my back fixed again. Oh darn. I have to trust people more I guess. I have a certain attitude when it comes to people helping me. I’m not sexist in the least, but I do feel more comfortable when men help me. I just think they’re stronger, and would be able to help me up if I did fall.

So, things I need to work on:

1. Trust others to help me.

2. Trust myself to show myself what I am capable of.

3. Trust my own body to do what it needs to do in a falling situation.

4. Practice (again) walking with my walker.

I believe if I practice with my walker, my confidence will go up in these situations. Because it’s only a matter of time when someone other than my husband will help me out again. I need to be prepared for it.

Well, where did all that come from? This was going to be a mile Monday post, but look at that. I had myself a mind dump of sorts.