It’s been a few months since I last posted the video of me walking with my afo on the day I got it. In this video, you’ll see improvement in speed and balance … if you look closely and are very observant. I feel physically stronger than that last video, which is good.
It’s been a few months of improvement and we’ve been testing my endurance in public. Since my stroke 2 years ago, I haven’t been able to tolerate crowded rooms with people talking over each other. It exhausts any energy I may have and I get overwhelmed.
I don’t know if you remember, but recently my husband and I were looking for a new car. We finally found the right fit for my body, a 2009 mercedes-benz e320 diesel, quiet motor, ridiculously roomy trunk, wheelchair plus bags! superlative suspension. This car absorbs bumps. My head height in this sedan is perfect so that my torso, not my neck, takes the brunt of the abuse from the bumps. We live in a bumpy town. About 3 weeks ago, we took our first overnight trip and I had no issues, save for being exhausted on day two,so we stayed a second night and got to sightsee more before heading home. Now we know that we can travel ,by car as long as we plan rest days. As you saw in my last post, I got a new afo brace and4I’ve been working on walking with speed and distance as well as quality of steps and will be posting a new video soon.
I hear those observant types asking, Why the hell are you parked at a church! My friend, Roz got married! And I was invited to be a bridesmaid.
The wedding was this past weekend and ever since Roz announced the date I have been working very hard to be able to walk down the aisle. While I achieved the goal physically, the thick carpet that I had to wade through made speed an issue, so, my silver fox of a husband pushed me down the aisle in my wheelchair.
This was the first disappointment of the day, thankfully quickly forgotten.
Unfortunately, I didn’t realize that when Roz said she was inviting 100 guests to her small wedding that she wasn’t joking. The fact that there were many familiar faces eased my nerves, but the whole day I was in close proximity to multiple people talking loudly.
As I was in the wedding party, I had to be at Roz’s for hair and make up at 10 am, then quickly to the church for the ceremony, then immediately to a gorgeous rose garden for pictures, and pictures and pictures. Then,we took a break for an hour, then cocktails and a 5 course dinner. We left after the main course, as my chronic shoulder pain just wouldn’t stay medicated. We got home at 9pm. I’m still resting days later. But 11 hours surrounded by activity and noise is a personal best.
Today I got my new AFO (ankle foot orthotic)! My posture is better! I’m walking without fatigue. I’m walking faster,I’m walking farther! And all of this on the first day.
AFO is custom made and is an articulated afo brace which allows some ankle movement front to back but not sideways, giving me more stability. I still have to buy knee socks to wear under the afo to combat chafing. This video was shot the day I got the afo.I’ll be shooting another when I’m more used to walking with it
Before I became paralyzed, I thought it meant that you can’t move, which is frustrating enough, but there’s so much more to it than that. I’m lucky in that my paralysis is ‘temporary ‘, using the word loosely. In August it will be 2 years since my stroke happened and while I’m doing better with mobility, I am still suffering from paralysis down the left side of my body. My leg and my arm feel different from each other in that the muscles in my leg felt weak but are getting stronger and the muscles in my arm feel tensely flexed, which causes chronic pain, but are ever so slowly relaxing. Sounds weird right? I couldn’t have wrapped my head around it before it happened to me. Here’s what the experts have to say about my type of paralysis.
That’s what you can expect with the average stroke. Mine was classified as massive. I’m lucky to be alive kind of stroke. I had to wear a diaper for more than 6 months and it’s quite important to be able to roll over onto each side so that the nurses can change it, which I couldn’t do causing extra work and frustration for them. I had to be lifted out of the bed in a sling for 4 months in order to get showered,which didn’t happen often because it was so much trouble. So it was up to two weeks between showers. They forgot difficulty speakingin the above diagram. After almost 2 years I still slur my words and stutter, which is incredibly frustrating for me as I had a beautiful speaking voice and was considered very eloquent before the stroke. Also, I couldn’t swallow properly for at least 2 months following my stroke. For the first month, I had a feeding tube and wasn’t allowed to swallow, not even my own spit. Difficulty walking is being kind. I couldn’t stand for about 4 months let alone walk. I still can’t grasp things with my left hand. Every door way in my place has scuff marks caused by my wheelchair due to loss of spacial recognition. My brain took until last month to stop neglecting everything on my left side, hence the scuff marks from my wheelchair. I couldn’t stand on my left leg until I was out of the hospital for 3 months. I still need a hard plastic AFO (ankle, foot orthotic ) in order to stand on the left leg., which i can now do for about 30 seconds,while holding onto a bar..Weakness is a kind way of putting completely immobile. Imagine trying to move a hair on your head by thinking about it, impossible,right? That’s how a paralyzed body part feels. It took more than a month for me to be able to move my big toe. Just after the stroke happened, I was able to feel the sensation of nurses touching my skin, but it felt electric, as if their hands were carrying current and parts of my body were completely numb, my left cheek,and ankle specifically. The sensation became more normal over time, however my left ankle still has spots that are numb, the cheek doesn’t, thankfully, ,but I still have a gimpy smile and I look strange when I talk. Speaking of cheeks, the first muscle I was able to connect with was the biggest, my left butt cheek. It’s not uncommon for the largest muscles to recover first. It took me a long time of thinking about flexing my butt cheek before feeling any movement at all, during which I couldn’t help but feel like a failure… humiliated. Physio therapists like to correct you when you say you can’t move the body part they’re asking you to, by adding the word yet,because it offers some hope. I got to the point when asked if I could move something I couldn’t that I just answered yet. Honestly, the recovery at the hands of ‘professionals who are putting on a show of positivity, in hopes that you follow their lead feels like you’re letting them down if you have a bad day. Then there’s the nurses, saying things like, “how are we doing today? “. Talking down to you like you’re a child, or blowing smoke up your ass when you connect with a new muscle like it’s the best thing anyone has ever done. I honestly believe it would be so much easier to be a long term patient if I were stupid, because the show of positivity and encouragement felt false and like an insult to my intelligence.
As to muscle fatigue and lack of coordination, again we’re being too kind. Of course your muscles are fatigued, you’re trying all damned day to make them react. Remembering that the brain is also a muscle and after a stroke needs to heal, even the brain gets easily fatigued. When you lack balance of course your coordination is going to be lacking. Think about all the tiny muscles that are responsible for balance, when those become paralyzed, it takes a great deal of time and effort to get them back. I’m shocked that more stroke patients don’t fall on a daily basis. After almost 6 months in recovery, I fell for the first and only time, while trying to kick someone’s foot as a joke, while I was standing. It took 2 nurses to get me up off the floor. I now know the real meaning of the phrase, “I’ve fallen and I can’t get up.
Now that you understand where I started, let me show you what I can now do. Stay tuned for the next post.
*Feminist – a person who supports women having equal political, economic and social equality.
That being said, here’s what it doesn’t mean.
It doesn’t mean that I hate men. On the contrary, I married 4 of them and only hate 2 of my exes. That’s not fair, I don’t hate them, but I do dislike them.
It doesn’t mean that I think men don’t have issues. Men get beaten and raped and abused.
It doesn’t mean that I think all women are not capable of heinous acts. Women are just as capable of beating, raping and abusing. Feminist Andrea Dworkin let women off the hook when she said, men target women for not being men, but men don’t only target women. men also beat the shit out of each other. men rape each other. men kill each other. men treat each other like absolute shit. virtually all of the violence that occurs on this planet is committed by males, whether it’s committed against females or against other males. men tell us every day, in no uncertain terms, that they believe “equality” means “violence.” equality with these barbarians? I think not.
I don’t think this is entirely true, or fair.
Men definitely have it tough, what with being blamed for all the violence in the world. While men do commit the majority of the violent acts, women are guilty of violence towards each other, their partners, their parents, their children and pets. Think about the term domestic abuse. What comes to mind is likely this scenario
I lived in the United States for 18 years and the only thing that has changed since Trump took the helm is this egregious behavior seems to be permitted in the minds of those who are racist and sexist. America has a very long history of both. White Liberals were so busy patting themselves on the back for electing the first black president, they failed to notice that the country didn’t change into a utopia of enlightenment during the 8 years Obama spent in his scandal free presidency. There was a lot of push back from the right (not correct, but right as opposed to left ). The thing that the left forgot is how well organized Republican voters can be when angry. And they were angry at the very idea of a black man being deemed worthy of running the USA. White American men never really got over their slavery mentality when it came to people of any color other than white (or orange tinted white ) or women being property… or the thought that they are entitled to whatever they want. America as a country is still very much a white man’s game. Any rights that people of color and women have were GIVEN to them by white men for reasons having very little to do with altruism.
The right thinks things have gone too far and hates being blamed for all wrongdoing, so they elected an old white celebrity known for boasting and publicly firing other celebrities , many of whom were people of color and/or women . Make no mistake Trump had a plan all along. He told us as much. Since 1987 he’s been testing the American public by saying casually, at first, that he would run. But it took 30 years for him to surround himself with the right bunch of miscreants and for the country to be nostalgic enough to be ready for him.
Trump has already taken away rights from women and people of color in less than 100 days in office. We now know what he means by his slogan, Make America great again…
And it’s already begun.
The only real change Trump brings is legislative, like any president, just moving backwards in giant leaps opposed to moving the country incrementally forward. Just ask a black woman how much has changed in the way she’s treated since Trump. She will likely respond with not a damn thing.
Last week, I was afforded a rare opportunity. I was able to try on and ride in the Tesla X SUV. The only one on the island upon which I live.
This fully electric 7 seat SUV crossover has a sticker price of $270,000 CDN and it shows.
This review is from a physically disabled passenger’s perspective, so it will deal with getting into and out of the car, storage space and comfortabilitly of the ride.
First I tried getting into the front passenger seat from my manual wheelchair. This proved quite difficult as the seat height needed a lot of adjustment and the opening was quite tight . It took effort, but I was able to sit in the front seat, which seemed fairly comfortable. There is more than ample storage. My manual wheelchair fits nicely in the boot with room to spare. If more space is required, you can find it under the hood in what’s called the frunk. At first, the gull wing doors seem like a gimmick, but after getting into and out of the back seat with ease I understand why they’re there.
Once settled into the front passenger seat, the first thing I noticed was the huge computer screen easily accessible and easy to read. The next thing I noticed was the wind screen which extends above your head providing a panoramic view.
Like other electric cars, the engine makes no sound, which takes some getting used to, especially while driving, as the road noise becomes impossible to ignore. Thankfully, the sound system kicks ass.
Sounds like a great car right? Unfortunately, for me, this is a sport car masquerading as an SUV. It hit every bump in the road like they were chasms and speed bumps felt like we got air and crashed down. Because it’s an SUV, the center of gravity is higher putting all of the pressure on the neck. Each bump sends the head moving side to side causing me pain. I finally had a ride with my hand bracing my neck, to lessen the jostling. Riding in the second row was marginally better in that I could remove my hand occasionally. The suspension is super tight and it rides less smoothly than a Miata. I imagine driving the Tesla X would be a lot of fun for lovers of hot rods or go carts, but as a family car, it won’t provide a comfy road trip. Even though it’s technically a luxury car, in that you’ll have to pay luxury tax on it, the ride is anything but luxurious. I have pain issues from my left shoulder going to the left side of my neck that were exacerbated by both the rough ride and the seat which seemed comfortable when the car wasn’t moving but became intolerable after 5 minutes of driving.
The good news is, it doesn’t work for me and my disability and that’s great cause I can’t afford it 😉