I visited my neurologist/physiatrist yesterday for my four-month follow-up. Four months ago she recommended I join the Thrive medical fitness program with the hospital network. I met with her in November to discuss how I could move forward with exercise and strength training; I was scared that I would hurt myself working out alone.
According to her records, I lost six pounds! She was very happy to hear about and see for herself the gains I’d made in my strength. She reminded me that I was still “young enough” to keep making gains, whereas at a certain point the aging process makes it so that all we can do is maintain our strength.
I told her about my bumpy February, complete with several unexplained falls. She has some concerns about this, concerns that are mitigated by my fall-free March. I told her my theory that the change of seasons and sinus “stuff” might impact my balance– referring to my serious falls of March 2023– and reporting that I had not resumed taking my allergy medicine after a winter hiatus.
There are some other signs, some dealing with episodic urge incontinence and a recent bout of constipation, the strange weakness and sensations in my fingers, and my typical hyperreflexia that could suggest an issue with my spinal cord in my neck. So if anything changes or becomes more persistent, I have to let her know immediately and not “downplay” it. She referred to me as one of those patients who is “a trooper” and just keeps going.
So she wrote in my after visit summary as my main instruction to “make good decisions.”
How many of us could curtail a lot of our health problems if we followed that advice?
My next steps will be to focus on working out and continuing my progress with strength training and weight loss, reduce caffeine intake, and improve my cardiofitness. My next appointment is scheduled for the day after my cardiologist appointment, so hopefully I will have some positive trends to report to both of them.
My neurologist also made me promise that when I get my service dog, she gets to meet him/her sooner rather than later.
Monday is my last session as part of the Thrive medical fitness program at St. Luke’s. Working with the trainers in the program has reminded me of some hard truths– and the part that’s hard is the reality of your own habits and thinking patterns.
The numbers show some nice progress. I lost four pounds of fat and gained one pound of muscle. (And had I eaten better imagine what those numbers could have been.) My blood pressure according to their records has stayed the same, but based on my home readings has gone down and requires less medication. The strength-based tests– well, I kicked butt.
I certainly feel better, and stronger, though I still have work to do on my cardiofitness. That won’t really improve until I commit to more cardiovascular exercise, even if it is just walks around the neighborhood. I would love to return to riding my bike again, but there’s a fear factor there. It’s an activity I don’t want to do alone, which is also true of walking.
But here are the lessons:
When my body hurts and locks up, strength-training stretches all those muscles and gets rid of the pain.
I can only lose about a pound a week if I eat well and exercise at least three times a week. Diet alone won’t do it. And my food choices don’t have to be perfect but they have to be solid.
Salt is my nemesis. Too little and I experience orthostatic hypotension and lightheadedness, too much and I end up with as much as five pounds water weight.
I must be choosy about my fast food. Domino’s or Little Caesars pizza will put me in a coma, and I will sleep so well, but the impact will show on my heart rate, blood pressure and weight. Wing Stop has no benefits, only the effects of the salt. I now keep various processed chicken products in the freezer because while they are not a wholesome choice, I can make my own sauces to replicate Wing Stop and save the truly detrimental health effects. Taco Bell in small doses can be tolerated, and I usually get a cheap box deal and make the items all vegetarian. It adds some extra fiber and vegetable matter to the mix.
And out of all the fast food chains– I can navigate the menu at Chick-Fil-A and not notice any real impact. Their fruit cup and kale crunch salad, especially when paired with grilled nuggets, are solid choices. They also have a chicken (or vegetarian) cool wrap, which, while it is calorie dense, is easy and quick to eat– with a good portion of lettuce and cabbage. (Yes, they also have amazing salads, but those big salads are realistically three portions. That’s a lot of salad and chicken. A lot.)
Do I have the discipline to not only continue but improve upon this progress? I don’t know. Honestly. IF I made a commitment to meal planning and cooking, I could. But with money and time always an issue, I don’t know. With stress leading me to seek comfort in my favorite foods– did you know they have Sour Patch Kid Jelly Beans? Eva says they flipped Sour Patch Kids inside out… With fatigue influencing my choices– caffeine and sugary carbohydrates, anyone?
Will I get up in the morning, drink a glass of water, and commit to some sort of exercise in my home gym?
Today I had a lovely day with the chiropractor, then the dentist (then an iced coffee at Panera) and email exchanges with my OVR counselor.
So this will be a discussion of health, disability and my job search. I’m at the midpoint of my unemployment benefits and I’m freaking out a little.
Let’s back up…
I have only been visiting my beloved chiropractor (who used to be a physical therapist) Nicole Jenson of Back in Line Chiropractic and Wellness Center every three weeks or so, in part because without the physical labor of my warehouse job and without any complications in my gait I have not needed her. (And that’s kind of great because I also have terrible health insurance right now and no job.)
But today I went to see her, and she was very relieved to hear that my condition has been good and I have not had a fall since Sept. 30. And this was my second visit in a row with no symptoms to report. She was also very impressed with my progress with my fitness and strength coach Andrew at Apex Training. He has been pushing me hard with the weights and the core exercises all because of some pre-New Year’s resolutions we made at the gym.
Get weight under 150 (oh, how I was so close and failed so hard. I got down to 156 and stress ate my way to a new high)
Bench press 100 pounds (and I’m at 95 with more than a week to go)
Squat 150 pounds (Andrew sneaked this one in, and I have no idea if I’m near it)
Plank for 2 minutes (personal best currently at 1:10)
A dear friend pointed out that some of my exercise-induced asthma symptoms might actually be connected to caffeine intake, and Nicole definitely concurred that I needed to watch that also because of my balance issues.
And I’m still doing really well with balance and walking thanks to Andrew’s “lead with the knees” guidance.
After leaving Nicole’s, I headed to my six-month check up at the dentist. My dentist recently sold her practice– and she’s been my dentist for almost 35 years– but luckily the new dentist seems personable, smart and efficient. The staff complimented me on taking care of my beautiful teeth, to which I laughed and said, “really, let’s thank genetics because my dental habits are not what they once were.”
Then, at 1 p.m., I grabbed a KIND breakfast bar out of my bag for breakfast and headed through the Panera drive-through for an iced coffee. They offered a $3 per month subscription to their unlimited sip club for three months, and I love Panera’s iced coffee. So I treated myself. I had a meeting at Panera with the Echo City Team on Friday and I subscribed Friday a.m. I have since gone two more times.
By the time I got home, I had an email waiting from my OVR counselor. I decided that since I have some disability-related concerns about finding the right job for my next move, I would apply for assistance from the Office of Vocational Rehab. That way, the state knows I am doing everything I can to find a job. I spoke with my counselor on the phone yesterday, and had her chuckling. She said I am not her typical client, and in a way, it sounded like she was intrigued by seeing what she could do for me.
I compiled all the initial paperwork, and gave her another round today based on her subsequent requests. She’s had some interesting ideas on what her office might be able to do.
Then tonight at the gym, I was doing dumbbell rows with a 40-pound dumbbell and doing incline presses with a 35-pound dumbbell in each hand.
There is a new accommodation popular on the internet– image descriptions. Nancy and I were talking about it last night, because she has her cell phone now and is receiving email and interacting with the web it new ways.
She asked a question that has bothered me about these descriptions since I first encountered them– who benefits from them? Depending how the description is written, it doesn’t help and if the text near the image is well written (in an email, newsletter or blog) a description should be in the text. (But I’m also trained by my experiences with Nancy.)
If I described a selfie of me as a woman about 5′ 4″, brown eyes, glasses and brown hair in a floral dress many of those details mean nothing to a blind person. Details that matter would be I have wild curly hair that flows past my shoulders, I have uneven fingernails but smooth skin, and a long sundress with ruffles and a kick pleat on both sides. And when I walk, my gait has a scuffle to it due to my cerebral palsy.
See the difference? Pun intended.
Most of the images I see described feel like they were written for someone who had seen at one point. A congenitally blind person does not attach meaning to colors or conjure the same connection to concepts like “sky” that a sighted person does. Just like when I interact with darkness, while I use techniques Nan taught me as to not harm myself, my concept of that condition and hers are different. When the electricity goes out at night, nothing changes in Nan’s world except the television won’t work.
I feel like too many attempts to acknowledge and address the needs of the disabledfocus on the experience and needs of the able-bodied who become disabled which are often different from the needs of the congenitally disabled, even if the impairment is the same. In my experience, the able-bodied community wants to fix disability and would rather see the disabled person function in the same manner as the “normal way” rather than adjust their expectations and methodology to accept a method easier on the person with the disability.
Again, in my experience, people with disability learn the “right way” and must struggle with the “right way” and even accommodations can focus on allowing the person to perform the task the “right way,” until the disabled person, a clever occupational therapist, or empathetic mentor finally discover an alternative method that might not look like the right way at all.
And sometimes that makes the able-bodied community uncomfortable. Consider the brouhaha one can often encounter when dealing with handicapped parking spaces and who deserves them and the “rules” regarding having a service dog in public.
And on top of all this, we have the able-bodied community who experiences temporary disability or permanent disability. When these people can’t go of their “right way,” that is when we start to see efforts to make the disabled experience feel more like the able-bodied one. It’s actually person who went blind at 30 or the person slowly experiencing vision loss who wants to hear about the color of my hair.
And those seem to be the type of accommodations that “catch on” and “stick.” Because it’s an activity easier for the person extending the gesture. The sighted person writing the description looks at themselves as if looking in the mirror instead of imagining how someone might find him in a dark cave. And the answer is not “with a flashlight.”
In more personal news, thanks to the hard work of my chiropractor, Nicole Jensen, and my trainer at Apex, Andrew, my body might be overcoming its last episode. It’s annoying to think I must maintain three workouts a week to keep my body from seizing up and forgetting how muscles work.
Yesterday, I could feel my leg pulling and turning wooden as I like to say. I can only describe it as I can feel it pull away from my body. It no longer listens to my nervous system and it feels like I have to pick it up and drag it with me as if it were a prosthetic.
So, after Nicole got everything aligned Wednesday, and an upper body/core session with Andrew after chiropractic care, and some reflection Thursday from my new cardiologist, I walked to the gym Friday. We did legs and some barbell squats. And some planks. I haven’t done planks in ages. Held steady for a minute.
Andrew asked me functional questions about what my legs were doing and I had to remind him, “I can only tell you what it feels like, I really on your observation to tell me what’s actually happening.”
Because with cerebral palsy, my muscles rely on repetition and routine to remember how to function. As I understand it, my brain’s instructions just don’t make it there. So my lower limbs just do what they want, until I consciously connect them all and just like learning to fold clothes into perfect little 9×9 squares as I do at Stitch Fix– it only works when the action is embedded into muscle memory and the thousand steps it takes to execute just happen without thought. THAT is what I am hoping to achieve. But as I learn what to correct and how, someone (and that’s Andrew) needs to observe me to make sure I don’t miss anything.
I had my full activity session at Physical Therapy today. I did my stretches, got strapped into the gait belt, and did a series of single leg stability exercises under the supervision of the computer’s measurements.
Then we headed to the zero-G treadmill. I was advised to make my feet and pants have contrast. So, I wore my bright green shoes, my purple polka-dot knee socks, and my black-and-white cat leggings from Purr Haus in Emmaus.
He chuckled while remarking that I certainly followed directions.
The Zero-G treadmill required some rubbery pants surrounded by what resembles a surgical/Elizabethan collar (cone of shame) that get zipped into a treadmill pretty much encased in plastic. When it filled with air, it reduced my body weight. I was able to walk the treadmill at 50% of my body weight.
The reason for contrast is that the treadmill offers an image of your feet. Three views on a monitor: front, side and back. So I was able to watch my feet, move my legs, angle my feet and reinforce the improved gait pattern by watching it as I walked.
I was only on the treadmill for 15 minutes, but it that time I discovered what part of my foot I normally don’t use. It was exhausting– and exhilarating– and so fun to show the Teenager the results when I got home.
But before I got home though I had an appointment to have my stitches out and on my goodness did I have the most personable and confident resident yet. I only had three stitches but that last one gave her a terrible time. It took her thirty minutes to get all of them out. I had her laughing and she was very patient and determined, and so afraid she was going to hurt me because “if it were me I’d be jumping out of my seat!”
She said I was the best patient ever, that I sat so still and I must have a high pain tolerance.
Between the two appointments, I stopped at Dunkin for a decaf coffee and saw they had a new “egg taco.” I read the nutritional info and with 500 mg of sodium, 180 calories and 8 grams protein, it had less salt and more protein and less calories than the avocado toast. I am so sad they no longer have the hummus.
When I got home, I did some little things and ate the homemade chicken and dumplings my Pennsylvania Dutch mother-in-law is known to deliver when people in the family are sick. And then I tried to take a nap, but a little birdie was guarding me.
It’s a quiet Saturday morning despite absolutely roaring winds and nasty cold outside. The Teenager and I were working out some financial details last night over tequila shooters after upheaval this week (and plans to do taxes tomorrow) in light of the fact that her check engine light popped on last night. Her car has turned out to be an enormous money pit.
I’m drinking Friendly’s Arabica Mint Chocolate Chip Ice Creamflavored coffee. I adore mint in coffee, so I picked this up. It has a light and smooth flavor, so I drink it way too fast (as I am used to my bitter dark roasts) and makes the kitchen smell fantastic, especially considering it comes out of a K-cup. Both the mint flavors I have found since stumbling on the Dunkin white chocolate peppermint, have been branded Friendly’s.
The importance of exercise when you have a disability
Last night I returned to the gym, having warned my fitness and strength coach Andrew of Apex Training that he needed to leave the sadist in him at home because my body is still delicate.
(I know he’s a personal trainer, but that doesn’t seem enough to classify what he does, so I call him my coach. Life coaching has become so en vogue right now and that sort of coaching using combines listening, some psychological training and helping people get their metaphorical shit together. Personal training to me seems very goal oriented, whereas Andrew has to deal with a lot more than that. Training implies, in my mind, sharing knowledge of an activity that relates to form and tricks of the trade. It’s giving intellectual knowledge in combination with experience to help someone develop a skill, or in this case, a habit. But, having dabbled with hobby bodybuilding in the past, I have the knowledge and we’re working with non-textbook medical issues because I don’t have a “normal” body, so I need some extra support. And I love the guys at Apex for all the support they give to me.)
Andrew prepared a lovely full-body workout circuit for me that focuses on quality of movements versus high intensity or heavy weights. He and I have noticed during our now year-long relationship that the second set of an exercise is always better than the first set. And we’ve come to believe that my body– because my brain and the muscles in my lower body can’t communicate like they do in people without neurological conditions– needs to be reminded what to do. It feels like my body needs to be shown basic movements after even the most basic hiatus to break a cycle of malfunctioning, reset, and proceed in a different and better manner.
That circuit reminded my body parts how to work together again and get all those tissues and electrical connections firing. And after a week of sometimes intense pain, emotional and physical stress, and constant discomfort, the exercises allowed me to test my movement and release any sensations of immobility or fear I was clinging to. And Andrew was there to monitor my performance and make sure I didn’t hurt myself.
And let me just add, in case anyone else struggling with a disability like mine that manifests differently in people or that the medical establishment doesn’t fully understand: It is 100% true that you know your body best, but it’s also true that our experiences in bodies that do not do what standard bodies do often blind us to what we can and cannot do. This can bubble to the surface in many ways: 1. We are stubborn and should not do many of the things we attempt to do; 2. We give up too easily; and 3. Because we never see our bodies from an outsider’s perspective so we have a skewed outlook.
These are all important reasons why I have a personal trainer. All of them. I learned this from listening to my daughter talk about my body. She didn’t mention it as a young child, but as she got older she said things like, “Mom, your feet are fucky. Fix them.” She saw me fall so many times that she began to notice the signs of when I might fall. I don’t see that. I don’t see my feet from an outside perspective. And that’s why it’s emotional painful to see photographs of myself with twisted knees. And also why I asked Joan to photograph them for Not an Able-Bodied White Man with Money. And if I’m honest, why I put the photo spread in the back of the book. (See below for Amazon purchasing details or buy from us here.)
In many ways, Andrew knows my physical limitations better than I do. THAT is why I have a personal trainer. If it weren’t for him, I wouldn’t have exercised at all last night. And this is why I get angry when people cite a disability for why they can’t work out– that is specifically why you need to work out. You can’t pound weights like a powerlifter or run marathons, but bodies need to be used and challenged.
Mundane things like food and mail order packages
Rant over… My blood pressure is elevated this morning, but looking at the patterns of the last week and my list of dietary choices, I can see the role salt has had in my numbers. Dinner Thursday night had more salt than I’ve had recently, and dinner last night consisted of a canned black bean, sheep cheese and processed mole sauce lasagne with lentil noodles, laced with that sodium.
screenshot from Goodreads
Add the tequila, of which I did not have much, and the fact that I was licking salt off my hand…
I woke to a truly distressing dream that started as one of those dreams where you need to use the bathroom but can’t find one. I was wrestling a woman in a cheetah print denim dress to beat her to the toilet, and then, in the dream, I could not pee. Despite the pain and urgency of needing to pee. I suppose my mind really wanted me to wake up, because the next part of the dream haunts me even now. I saw a baby, who appeared to be blind (remarkably similar to the early 1980s hardcover, purple dust jacket edition of John Saul’s Comes the Blind Fury. And the baby had a baby. They were side by side, a newborn and a larger infant. Which took a cheese grater to my emotions, because I don’t think they were Irish twins. I had no choice but to get up after that horrific scene.
To bring things back around to happier things… and more references to Parisian Phoenix Publishing… (Please buy books!!!)
I prepared a special mail order package with a signed copy of The Death of Big Butch. I will be headed to the post office today.
What I ate Friday:
4:30 a.m., one cup Friendly’s Peppermint Stick coffee, with half and half
5 a.m., first breakfast, honey nut Chex with Silk protein cashew-almond non-dairy milk
8:30 a.m., second breakfast, salted and roasted pistachios, mango jerky from Solely
11:30 a.m., lunch, vegan tofu spring rolls and cabbage, diet Pepsi
3 p.m., snack, iced coffee with half and half and cinnamon a very berry oatmeal cookie from Panera
7 p.m., dinner, black bean and sheep cheese lasagne with cheddar and mole sauce on green lentil noodles and plantain chips
8 p.m., tequila shooter with pink Himalayan sea salt and a slice of lemon
My daughter has rediscovered her love of the treadmill.
She has rekindled a dream of running in the spring with her very own dog by her side.
“Hey, Mom,” she calls to me after an afternoon with her grandparents, “I want to go to the gym.”
I don’t. But I’m stubborn and a lazy bodybuilding princess so I go. Because if she wants to go that’s a challenge to me.
I like challenges.
I even do the treadmill with her. I hate the treadmill. I hate the treadmill because with my cerebral palsy, the treadmill requires all my concentration.
But today, as she did walk/run intervals on her treadmill, I had a realization.
I’m not sure I know how to run.
I set my treadmill to intervals, too. My intervals were 3.5 miles per hour and 4 miles per hour. But that difference was enough that I had to run on the higher setting. It was hard to stand upright, run, and not use my arms against the handles to keep my balance as I ran.
That was interesting to learn.
I’ve always wanted to run a 5k, and the last time I tried I did all my training and the actual race with a broken toe.
Angel Ackerman 