Tag cerebral palsy

We now have a deep freezer

Angel Ackerman 1 Comment

We recently got an old, hand-me-down deep freezer.

And at the same time, the federal government shutdown and Pennsylvania state budget impasse have complicated SNAP benefits for families who have them.

I heard on the news that 1-in-8 Americans have SNAP (Supplemental Nutrition or “food stamps”). I heard one story this morning about an unemployed widow with a 15-year-old son whose soundbite suggested she sent him to school so he could eat breakfast and lunch.

I hope she’s sending him to school for an education, first and foremost.

I consider myself a fiscally-conservative Democrat who believes that education and healthcare should be attainable and fair. I would love to have a Ph.D., but I can’t afford to finish my masters and I refuse to go into debt for it. I also have a disability, and even when I am well-employed I often have to make choices about my medical care.

Right now, I have my own small business. I work a part-time job in the food service industry to provide some reliable income on a steady timeline. I am an adjunct instructor at my local community college, and if you break it down to an hourly rate, I probably make a similar wage at my fast food job (because of the fact that I did not have the money to finish my degrees). And I have freelance writing and editing jobs and a mini author’s assistant job.

And I’m always on the look out for more. Applied for another this morning.

I started my career in public relations, and ended up in print journalism, which led to a long career of lay-offs as newspapers died. I worked in non-profit communications and development, where I learned a massive amount of useful skills like grant writing but also experienced a ridiculous amount of toxic managerial behavior. Some people work in the non-profit sector because they want to make the world a better place, but at the same time, many of those people have either childhood trauma and/or personal insecurities that create some challenging environments in an already difficult field.

I mention all of this because I have experience with unemployment. I have experience with being the single mom with maybe enough resources to survive a month. I was a single mom raising a teenager who lost her job during the pandemic and did not find out if she qualified for unemployment until the weekend after she accepted a new job. I was unemployed for four months and had opened my home to one of my daughter’s friends who didn’t feel safe in her own home.

I applied for public assistance because I was volunteering at a non-profit that provides services for people exiting human trafficking situations and my “boss” suggested it. Because I had no income and I had an official dependent, I received more than $700/month in food stamps. And Medicaid. Which was a great help. Even though I only received food stamps for four months, I rationed them so they lasted almost a year.

I had accepted a job in the warehouse at Stitch Fix. I loved that job, and the company, but after three years they decided to close our warehouse. After three years at a wage where my take-home pay was the same as what I had made as the development manager for a small non-profit with a two-million-dollar annual budget (thanks to the fact that Stitch Fix offered their employees free medical benefits), I found myself laid off again.

And when my unemployment ran out, I once again applied for food stamps. I had gone on multiple interviews, built up my small business, but still struggled with the cost of my medical care– my estranged husband put me on his benefits but my medicine was $50-$100 a month and all my doctor’s appointments I had to pay out of pocket because of the high deductible. So I really hoped I would qualify for Medicaid again. And I did.

I also qualified for $525 in food stamps.

Around this same time, Trump got re-elected and the cheap refrigerator I bought started freezing the food in the refrigerator and not freezing the food in the freezer. But I couldn’t afford a new fridge– and I still can’t– so we started buying only what we could eat in a few days, or foods that could safely thaw and refreeze.

Lettuce is not one of them, if you were curious.

The point of all this is to ask: Regardless of how you feel about who uses food stamps or how the government distributes them or whether or not people try hard enough or work hard enough, why is no one asking why we have a system where 1-in-eight Americans qualifies for food stamps?

I have seen and heard so many things about the system, and I have known people who work in the branches of government that distribute these types of assistance and they are all people who want to help. I have met people afraid to work because they might lose assistance, and I have seen people who need the help lose it because they made too much money. (And, like me, it’s usually people who need medical care.)

I have about $2,300 left on my deductible this year, and I have spent almost an equal amount if you read my EOBs from the insurance company. I’m losing my hearing in one ear and I need a hearing test and a visit with the audiologist. The muscles in my one leg have been spasming 24-hours-a-day for almost a year now and I just blamed it on my cerebral palsy but my neurologist has concerns that previously noted damage to my spine (from all these years of walking crooked) may have caused nerve damage in my lower back. And my one finger has been doing crazy things for about a year.

That’s probably at least $6,000 worth of tests. Do I just try to schedule it all before the end of the year and finance the $2,000+ remaining of the deductible on a credit card? Or Able Pay? or do I wait until I am better off financially?

Back to the deep freezer. A friend of the family was hoping to get a decade-plus year old freezer out of his house. We took it. We took all the stuff from our cheap refrigerator that needed better freezer conditions and piled it in. And I thought– when Trump was elected an I was worried about the future of food stamps, I didn’t have a freezer to fill. I did however invest in every non-perishable food item I could tolerate.

Dried Beans. Plain-old Rice. Canned Fruit. Canned Vegs. Nutritional Yeast. Some condiments. Canned Tuna. Spam. Canned Chicken.

My childhood traumas leave me to ruminate frequently about food scarcity, financial security and general stability. I will probably always behave as if every trip to the grocery store is the last one I can afford. And I have done my grocery shopping at the Dollar Tree and the Grocery Outlet because I only had $20 left to feed us for the week.

The Office of Vocational Rehab considers me the most severely tier of worker, whereas the federal government says I do not qualify for disability because I work so much and at so many jobs. But the federal government doesn’t take into consideration that I have to work that hard to make ends meet. And I don’t always succeed and I often hurt myself doing it. And I just work past it.

But how do you determine an equitable way to decide who deserves help? And I ask a third time: Why does 1-in-eight Americans receive food stamps? What is wrong with our society if 1-in-eight people cannot afford to feed themselves according to the criteria the government sets forth?

Food for thought.

On writing, living and working (with a disability)

Angel Ackerman 1 Comment

I pride myself on being able to write just about anything at any time with no fear of writers block.

But lately, I haven’t been keeping this blog up-to-date. I think it’s because I’m doing so much that I don’t have enough stillness to think, reflect and write. I still have the thoughts, but I don’t have the time to germinate themes and record them and so I lose the moment.

Last night, I was a guest speaker at the Behind Our Eyes writing group for writers with disabilities. Nan has been a part of that group probably for most of its 19+ year existence, but I am a relative newcomer. I joined because I read Nan’s email and work so closely with her as a writer that I already knew most of the members in the creepy troll way.

Nan pointed out to the group that I was a gifted cook and bargain hunter, and that she hopes I commit more time to my disability memoir because I have some insights that the world needs to hear. And maybe they are things I also need to remember.

I overdid it last week. The last few weeks have been insane. I haven’t been eating right, or sleeping well, or giving myself any breathing room. I saw my cardiologist last week, and I mentioned to her that I don’t know if my blood pressure medications are the most efficient way to stabilize my heart rate.

The backstory

So, in March 2023, I had two bad falls down stairs in close proximity– 2 weeks apart. Neither were traditional mechanical falls of the type I am used to, those from lack of proper muscle control due to cerebral palsy. The first occurred as I was hurriedly leaving work to go to the chiropractor. I dove down the cement stairs and ended up severely spraining my pinky. Most dumb injury ever, and my pinky is still bent.

I didn’t know it at the time, but my eating habits had flooded my system with salt when I misbehaved, and then when I suddenly returned to my normal diet and drank the massive amounts of water I had always consumed, well, I washed all the sodium from my body, causing low blood pressure and dizziness (orthostatic hypotension).

With cerebral palsy impacting my gait, and allergies/congestion also challenging my balance, a sudden drop in blood pressure may have caused the fall. (I suggest this because I did almost pass out in the moments after the incident.)

Almost two weeks later, I was carrying a cup of tea upstairs when I had a nothing fall triggered by my head and not my legs. My daughter watched it happen. I plummeted out and down and into an air conditioner that was on the floor. I split open my chin directly under my lip. I definitely needed stitches so we headed to the emergency room.

I told the doctor that I knew mechanical falls and these weren’t from my legs, and he gave me some options:

  1. He could stitch me up and send me home in a matter of minutes.
  2. He could order every test and I’d be there all night.

I asked if there was an option in the middle, and he suggested starting with some bloodwork. But they also noticed my blood pressure hadn’t come down so they put me on a heart monitor and very quickly noticed that I was in Afib with OVR.

So it looked like I would be there all night anyway.

They eventually labeled the whole incident as idiopathic and put me on a low-dose beta blocker to make sure I stayed in rhythm. I invested in an AppleWatch to try and get information about what my heart was doing.

Fast forward to present-day

I have had no incidents of Afib since that initial one. But each fall, my blood pressure has risen in the autumn. Is it allergies causing stress on my body? Is it the stress of the end of the year and all the obligations of adulthood like taxes and paying for fuel oil? Is it just the looming presence of Christmas? Or is it the change in the seasons and the shorter days? Or a figment of my imagination?

In the autumn, I struggle more with anxiety. My primary care physician has talked with me several times about the impact of stress and anxiety on heart health. I have been in and out of psychotherapy for 15 years showing symptoms of depression and generalized anxiety disorder.

So I asked my primary care doctor, my cardiologist, and my psychologist if I might need an anti-anxiety med instead of the combination of other meds for high blood pressure. Because typically my diastolic pressure is typically good, and high in response to stress, but it’s not uncommon for my systolic pressure to stay high even when my heart is at rest, sometimes elevated for days even with a now higher dose of the beta blocker.

I take a muscle relaxer for spasticity several times a day and some anti-anxiety meds can also treat this, allowing me to reduce the amount of medications I am taking. A standard low-dose beta blocker and muscle relaxer for maintenance and on days that I am anxious, an anti-anxiety med instead. So now I’m on the hunt for a psychiatrist to get an evaluation.

Which brings me back to last week

Last week was brutal. I was booked every day from 8 a.m. to at least 10 p.m. And Saturday I attended Collingswood Book Festival as an author with Pennwriters Area 6. I met with clients everyday, taught my college class, went to WDIY to talk about advertising my business (and hopefully make some new friends)…

And I still worked part-time. I don’t talk much about the job I have in a local fast-food restaurant, a job I took last January because after a year of relying on Parisian Phoenix Publishing for my income, the realities of first quarter in the business world were making me nervous. And since royalties pay out three months after sales, I know how much money is coming and when.

And 90% of the time, the evening fast food job suits me perfectly and feeds me. The general manager was an English teacher until this year and understands my business and my frequent time off requests.

But last week I had two long shifts back to back where I was assigned jobs that were physically challenging for me. And I haven’t been in that much pain and discomfort in a long time.

And so even though I still have more work than time, and business can be as stressful as it is rewarding, I will try to go easier on myself. I only have two fast food shifts this week, and they are both on the longer side… but my days aren’t packed nearly as tight.

End of Summer Update

Angel Ackerman 1 Comment

More than a month has passed again. Since I last blogged, I have taught three classes at Northampton Community College in their creative writing program. Well, it’s one class and I’ve taught for three weeks. I am the instructor for their publishing class, “Paths to Publication for the Aspiring Author.”

My falls have been minor. A little too frequent, but they typically classify as trips and I have managed not to significantly hurt myself when I go down. Though I hate that they are happening about every other week.

I had two of my four annual doctor visits– gynecologist yesterday and primary care provider today. I even got my pneumonia vaccine, since the recommendations have changed from age 65 to age 50. Shingles will be next.

I have officially lost ten pounds during the last year. It’s not as much progress as I would like to see, but it was enough to please my doctor. He says my efforts in weight, nutrition, rest and exercise will have a huge impact on my life in ten or twenty years.

Though I am still a big fall risk.

I did finally get some medication issues straightened out between CVS and my insurance company. The insurance company kept refusing to pay for my pills until my neurologist changed the dosage of the individual pills from 5 to 10 mg. If I need five, I need to cut them in half– but at least they are paid for!

Ruminations on a fall

Angel Ackerman 1 Comment

It’s been a month this time– since my last entry and since my last fall. I wasn’t going to share this fall. I wanted to keep it to myself because it’s circumstances were mortifying enough. No need to share with the world.

But then a friend fell down the stairs. And I sent my regards, asked how she was feeling, and we had a conversation about the mental toll falls take.

I fall a lot.

Before my fall in July, I was thinking to myself, “It’s been about six months.” And I felt smug. And just now I went to my phone where my watch records hard falls and I manually enter the smaller one and I realized… for most of 2025, I have had a fall worthy of noting just about every month. And that “six months” I had in my mind– it was two months.

It felt like a lifetime.

Here’s the thing…

When something happens and a person falls, that person knows why it happened, brushes themselves off, and goes about their business. But when a scary fall happens… Well, maybe you just misjudged or your balance was off or your body didn’t do what you expected it to do… It’s not about injury. It’s about your body failing you.

It’s a special mind game when you can no longer trust your body.

Most people will experience this type of fall in their lifetime, and most of us will have more than one instance. Falls can often be the first sign that something is off.

It could be as simple as being tired, the kind that comes from not sleeping well or working too hard.

It could be blood pressure fluctuations or allergies impacting the sinuses.

It could be the failure of a certain muscle or neurological dysfunction.

And sometimes it could be a simple trip because your body couldn’t compensate as quickly as it needed to. (Or your eyesight failed and you didn’t see something you should have.)

These falls are terrifying. The mental anguish is more confusing and painful that the bruises or lacerations. The embarrassment, especially if you fall doing something simple, is so crushing.

My recent fall?

It barely left a mark on me. But, if I’m honest, it still reverberates through me even today, five days later.

Now, if you are reading this you probably know me or you’ve read some of my stuff before. I have a lot of eclectic interests so I’m not going to assume you’re here for or familiar with my disability content. But if you don’t know, I have diplegia spastic cerebral palsy, and I spend a good deal of my life as a fall risk.

I run a small publishing company putting out 10-12 books a year. I help freelance clients with their own book projects. I cover my county for a local political newsletter run by former staffers of our local daily newspaper. I write horror novels. And as of this fall, I am teaching a three-credit class at Northampton Community College.

But sometimes that’s not enough to pay the bills. So I have a part-time job in the evening.

And I fell at that job on Friday night.

In front of a LOT of people. But not one of my co-workers or supervisors saw, so that made me feel super vulnerable and invisible. On top of mortified.

And my daughter is livid, ranting about how I shouldn’t have been in a position alone where that could happen.

I’ve been under some stress, and my blood pressure has been all over the place with no logic. Allergies have been terrible. Some weeks I sleep decently, but last week I did not.

I walked about 3,000 steps in the 90 minutes before I fell, about 3.75 hours into a 4.5 hour shift. So I was certainly tired.

And even though I know and understand that I have falls, it still shakes me to the core when I have one. So, I can only imagine what it feels like when it’s not something that happens to you.

In other news, I may need to do a cat update soon. Our 14-year-old tripod cancer survivor is scheduled for euthasia Tuesday. This is the second cat I have lost in two months.

Some days go off the rails (or weird reasons why I didn’t get my work done)

Angel Ackerman 1 Comment

Whether you’re a small business owner like me or a homemaker or someone who works a corporate 9 to 5 or whatever, it often feels impossible to make a dent in life’s responsibilities.

I think as I get older, and as one friend keeps reminding me I have a significant birthday coming up in May, I realize it doesn’t matter. Stuff eventually gets done or it doesn’t and the important/necessary stuff rises to the top.

Or maybe that’s just because I’m good at prioritizing and fairly awesome at time management.

The last week or so has been exhausting and/or exciting depending on your point of view. I’ve scheduled a storytelling/written word workshop with Larry Sceurman at Hellertown Library at the end of May. I’m strategizing a memoir workshop this summer in the suburbs of Philadelphia. I helped with and sold books at a storytelling event at Bethlehem’s Ice House (hosted by Patchwork Storytelling Guild). I sold books and talked with poets at the third annual Poet Palooza 3 at Book & Puppet Company in downtown Easton.

I received word that Lehigh Valley Community Foundation approved my application for a Pennsylvania Creative Entrepreneurship grant, which I will use for national and local advertising. I performed my duties as president at Greater Lehigh Valley Writers Group and heard a fantastic presentation by Jill Peters.

And book orders have picked up. Still not to the level as last year, but enough to give me hope. I am finishing my local candidate profiles for Armchair Lehigh Valley.

Yesterday I went to the eye doctor and spent more than $500 for exam and glasses (at which point I was told, before being given the price, that they knocked 30% off everything because my insurance was crap). I tried on every pair of Parisian Phoenix pink glasses.

That got me thinking– as everything often does– that with glasses normally being updated every two years I pay about $30/month for eyesight.

And walking home from the eye doctor, I fell. So that sucked. But I’m fine, so yeah!

I received a call from my life insurance company today that I scheduled last week to convert my term life insurance into something more permanent. The bad news is, it’s probably going to cost triple my current policy. But that’s an conversation for me and another agent next week. Sigh. The insurance person kept me on the phone for 45 minutes and we may be continuing the conversation this weekend as she has an idea for a book.

In other news, my blind friend Nan received a print poetry book from a small press recently. We had ordered a braille one, and so I tracked down their email and reached out to see if there had been a mistake. Turns out they made an error so Nan will be getting her book. It felt good to resolve that and get her the book. And I wanted the small press to know there is a real need for these braille books.

Also today I applied for and received a business American Express. I’ve had a personal AmEx for quite some time but now the business is established enough that it can have and should have its own card. No more Ingram bills on my personal card. Yay! (And yes, I do have business banking, but the business account doesn’t always have the assets for large print orders.)

Finally, let me offer you this photo of Eva’s dog wearing Gayle’s sticker from Jury Duty.

Well… That’s a first

Angel Ackerman 1 Comment

Every week, usually during the weekend, I walk down to my local CVS. It’s about a half mile away, and between my daughter and I, we usually have a prescription to retrieve. And if you buy items at CVS regularly, it triggers a variety of digital coupons that can have a domino effect and yield good deals.

Today I had about $5 in ExtraBucks, plus a $2 off a $12 purchase, plus some digital manufacturer coupons in the CVS app, and some product-specific CVS coupons that I planned to add to a 30% your full-price purchase coupon.

I bought a 90 count of Total Home kitchen trash bags (which were similar in price to a 100 bag box at Target), plus eight-gallon trash bags that were expensive for the number of bags in the box. BUT– I had a $5 off $15 coupon for Total Home trash liners AND the 30% total full-price purchase coupon, and the $20 box of 13-gallon bags would guarantee I hit the minimum after the 30% reduction.

Eva needed large bandages and some first aid cream, which was also full price. My bill came to about $43 and after coupons and discounts was $20.31.

On the walk home, I stumbled walking up my least favorite hill. I could feel my feet dragging but just didn’t have the strength to fight them. Here’s the odd thing– I lost my balance because my toes were dragging upward along the sidewalk. My arms went out, and normally at this point I do a bit of a corkscrew roll to minimize the damage as I attempt to fling myself onto grass.

But today something very unusual happened.

I recovered my balance. My hands hit the ground, but my body bent more like a hinge instead of crashing into the concrete. I didn’t even scrape my palms. I bent; I stood up. I walked home.

Never in my life have I recovered my balance once I put out my hands and braced for the fall.

Never. Ever.

Now, when I got up this morning, I gave myself a stern talking to because I did not go to 8:30 a.m. Boot Camp with Greg at Apex, my favorite local private gym. My back hurt and I was groggy and a host of other excuses. So I made myself promise that I would walk to CVS.

I need to do some straight leg deadlifts and other exercises for my back and legs but I’m not that motivated yet. And I stumbled at home trying to walk around the vacuum cleaner at the bottom of the stairs (Eva got a new vacuum cleaner, well, her third of the same model) and tripped after the CVS trip over a huge cardboard box right in front of my eyes. But neither led to a fall. Let me repeat, neither led to a fall.

I’m having more leg, hip and knee pain than usual, perhaps due to the dampness, the rain and the drop in temperature. Who knows?

I checked my phone and before I left for CVS in the first place my walking asymmetry spiked to 36% and before and after the near-miss fall registered at 2%. Now, let me reiterate (as my favorite doctor would say) that these phone figures are far from precise or even scientific, but they do seem to accurately reflect trends in my gait. My fall risk/walking steadiness consistently gets classified as “okay.”

But when you look at the last six months, you can see a drop. And while both are still within the range for “okay,” I wonder about it.

And for the record, last night, at my four-hour shift for my very part-time job that has somehow become 23 hours a week (thanks to some staffing issues and I can understand that), I worked at least five different positions.

I did some standing still, then a lot of walking around across a nice stretch of distance, and then I stood still some more until 2.5 hours into my shift, I was asked to cover a break delivering food inside the restaurant. At the beginning of that change, twice over the first five minutes, the asymmetry registered as seven percent. Did I notice it? No. Did it happen beyond those two instances? No. And after that 30 minutes, I went back to a position where I primarily stood still but also did a lot of stocking which meant moving to various storage locations and lifting boxes of various weights.

And the pace of the restaurant means my heart rate is usually between 120-130 for my whole shift. I noticed last night it reached 172 bpm. That’s my maximum heart rate at my age! My heart is supposed to be physically incapable of doing more than 170 bpm.

As I promised my doctor, I have been taking my allergy medicine, watching my blood pressure and taking the appropriate prescriptions and taking my baclofen. I’ve been good about taking at least 10 mg before my shifts.

PS– the anecdotal evidence is mounting that the Twinings Sleep + vanilla and cinnamon tea with melatonin not only tastes like a baked good, but it also increases the amount of deep sleep I get. I will still keep Traditional Medicinals Valerian in my rotation, but Twinings is a definite win.

PPS– I ate almost a whole can of salt & vinegar Pringles last night and gained a pound overnight. And because of how Omada measures your success as an average of the whole week, they have my weight listed as 163.5. It was 161.5 yesterday and 162.5 today.

The Day the Garbage Trucks Swarmed

Angel Ackerman Leave a comment

My shift at the restaurant Thursday evening went much easier than Wednesday— though I couldn’t bend and reach the floor and I took a lot of Baclofen.

And my left hand strangely hurt last night in the fifth metatarsal, in the same spot where I broke my right hand what had to be a decade or more ago.

Today I slept until 8 a.m. when my Goffin’s cockatoo, Nala, screamed, probably concerned that I died in my sleep.

I stripped my bed, started laundry, drank some coffee and used household chores as my warmup for a home workout. (After clearing my business email and banking stuff.)

The scale showed another pound gone. Soon I might hit the ten-pound mark.

Nothing like 30 or 40 pound cat litter boxes to practice farmer’s carry. And five trips up and down the stairs gets the heart rate up.

I did a pretty solid shoulder workout today, 22 minutes of just weights— including push press, dumbbell row, shoulder lateral raise.

Did some more wash, handled some more email and spoke with one of the Parisian Phoenix authors about a presentation we have been invited to give at Hellertown Library.

I did the dishes, started cooking some chicken livers for the dog, and made myself a big salad with lots of carrots.

I went to Panera for a while to work on my background material for the stories I am writing for Armchair Lehigh Valley regarding the May 20 primary.

And I got my schedule from the restaurant— 4 days in a row and 22 hours. I messaged my boss on Slack to warn her that that may be a struggle for me. She hired me so quickly I never had a chance to tell her about my cerebral palsy. She hired me to work 10-12 hours a week in the dining room, so I didn’t think I would have to.

But here I am, working 20+ hours all over the place.

I wasn’t sure how to bring it up, and I feel it’s better to do these things in person, but at least on Slack there’s a paper trail.

It turned out to be a great conversation. One we will continue in person. As I suspected, she’s short-staffed and I can really use the money so I didn’t want to complain.

Eva picked me up and we stopped at Grocery Outlet. And as soon as we got home, three garbage trucks swarmed us and our house.

I made a vegetable lovers DiGiorno thin crust pizza and split it with Eva and watched some more of The Pitt. Then I came up to make my bed, clean litter boxes, feed the bird, and get the cats water before my shower.

Now it is almost 8 p.m. and I plan to read until I am sleepy.

Yesterday was hard

Angel Ackerman 3 Comments

I don’t want to write this. I am tired and I want to go to bed and pray that I am not in too much pain to sleep. I won’t post it until tomorrow (Hence referring to today as yesterday in the title.)

Nothing bad happened. It was just a bad day physically, and it’s been a long time since a day hit me this hard.

I need to write about it though, because I am under strict instructions from my doctor to pay attention and note anything unusual because she’s heard some of my symptoms and said that if I were any other patient I’d be going for tests.

And if I don’t write this blog, I will forget today was a bad day physically.

It started nicely enough. Visted Nancy Scott and noticed then that climbing the stairs felt more stiff than usual.

Ate decently. Tried a sample meal replacement bar for breakfast and ate a HUGE brunch of potato, broccoli, multi color peppers, egg and feta. Had two pieces of licorice and a whole bunch of unsweetened and barely caffeinated tea.

I noticed while changing into my work uniform that my knuckles felt achy and weak and like I was about to injure my middle finger as I did with my mallet finger/sock incident of 2022. (If you want to read more about my mallet finger, click here.) This sensation returned again at the end of the night before I showered.

I took 10 mg of baclofen. In the morning, I took five.

Left for work at 1:30. So here’s the big reveal– in addition to my publishing company, I took what was supposed to be a very part-time job at Chick-Fil-A. My reasons for selecting that particular job were very specific. That might be a good topic for another post.

Once I arrive, I grab some Coke Zero. I usually stick to unsweetened iced tea or seltzer while I’m at the restaurant, but tonight I needed something a little extra. The back of my right thigh is spasming.

I started my shift running people their food inside the restaurant. It’s not my strongest position, but I like the movement. Then, I went to the drive-thru window for an hour, before I went back to running. My legs felt very heavy and clumsy the whole time.

Then, I went on break. And I ate a fruit cup. Everything still felt hard to move.(I walked a total of 15,000 steps today and two hours of my shift registered as exercise on my Apple Watch.) While outside I started stumbling, and twice I almost pelted some cars with bags of food.

And it was cold outside! Then, the icy rain started. Eventually, I got a poncho, and after about two hours I went inside and washed my hands for five straight minutes trying to get them warm again. At this point, my lower half hurts and I can’t bend and reach the floor.

And one of my supervisors accidentally clocks me in the cheekbone with his elbow. Hard.

I finally leave, and my phone alerts me that my heart rate is high. It hovered around 120-135 most of my shift. It usually does.

My toe hurts– not sure if I’m getting a blister or the toe I almost broke or the neuroma giving me trouble.

I came home, showered and made myself some food. And took 20 mg of baclofen. Making my grand total for the day 35 mg. I think. My blood pressure is also trending upward, at 112/78.

My phone says my average walking asymmetry for the day was 2.5 percent, but I noticed there was a lot of asymmetry. Often when my numbers are bad, they are a lot higher but only happen once. This was happening frequently. It looks like it was happening a dozen times an hour.

So, I came home wet, cold, stumbling and hurting.

I record this now to improve my memory of what the bad days feel like.

“Make Good Decisions”

Angel Ackerman 2 Comments

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.

Balance Assessment at Susquehanna Service Dogs

Angel Ackerman 1 Comment

About three years ago, Eva– my daughter, in the beginning of her career as a pet caregiver and dog trainer– said she wanted to train me a service dog. She wanted something to babysit me once she left home or when I was home alone.

She showed me some videos and I did some research and thought she had a point. When she leaves home, I will be a 50-something woman living alone with a history of falls and accidents. The presence of a dog in my life would keep me active and prevent spasticity issues, improve my gait as a dog’s gait never falters, and perform small tasks like bringing me my phone or picking items off the floor.

I have no doubt that with the right puppy and the time, Eva could train a service dog. But I suggested that for our first experience in the realm of service dogs, we should apply to an official service dog program.

Working with a program would teach us how the dogs are trained, give us support, guarantee good breeding and the physical fitness of the dog, and have some added legitimacy should people question my dog’s work.

Now there are no rules that prevent individuals from training their own service dogs. I think this is why one can encounter a variety of “fake” service dogs doing public access work. [I saw two service animals in the same restaurant this week. One looked like a well-trained Labradoodle with a handler who wasn’t cognizant of her surroundings. The Labradoodle was lying across the main floor area of the restaurant and not tucked under a table. The second was a small dog, perhaps some sort of schnauzer who barked and begged and whined and scratched at its owner’s leg for food the entire time. So, either that handler was having a medical emergency and the dog’s alerts were being ignored or the dog was not properly trained. A working dog should not make noise in public and it should not be distracted by food.]

I understand that training a dog with an agency or a professional trainer is expensive, but people who insist on using dogs for public access that are not properly trained make life harder for those people who have working dogs that don’t misbehave. Improperly trained dogs with public access are the dogs more prone to cause an incident with another dog.

And once I pay for my dog– which will take ALL of my savings– if that dog is attacked or threatened while working in public, that could impact its ability to do its job in the future. My dog might become afraid and unable to focus on its job. So I will have invested all of my money in a dog that won’t leave the house.

In the United States, there are no rules or governing agencies that regulate service dogs. There are, however, rules about what people can ask to a handler of a service dog– Does this dog do work that mitigates your disability? What tasks does the dog do? That’s it.

I have chronicled my service dog adventures on this blog. Here are most of the entries. (I am also working on a disability memoir.) There’s a lot to the process. My dog will be a light mobility dog.

They say the average placement takes four years start-to-finish. We filled out the application with Susquehanna Service Dogs in Summer 2022. I went to their facility and had an interview, fill out a survey of my life and health every six months, did an assessment while working with a dog where they recorded me, brought Eva with me to do public access work in a mall, passed a home visit, collaborated with a case worker to develop a plan of what my dog would actually need to do, and now yesterday, I went back to the facility with Eva for a balance assessment.

They had a mobility professional join us– I believe she was a physical therapist– and I worked with the dog and showed them how I get up off the floor and answered questions about my life and recent fall history. I love when Eva can come because she can tell them her insights. Apparently, she was annoyed because physically I was having a good day yesterday.

I worked with Captain. What we learned was that my dog will need to walk on my right. The dogs are trained to walk on the left, but when the dog is on my left I struggle to walk in a straight line. When the dog is on my right, my posture and ambulation is much more natural.

We also decided that my dog will be guided by a leash, versus a strap or a mobility harness. A mobility harness is rigid and has the most feedback between human and dog. In the photos, I am using a red strap on the far right. The strap was okay, and it’s an intermediary step between the harness and the leash, but it didn’t feel natural. (And the benefit of using leash only is that it gives the dog more freedom and space to get out of the way when I fall. Some dogs are trained to do things when a handler starts to fall, but I want my dog out of the way.)

It also seems like I’m at the proper place in the timeline. The next step: When they have a group of dogs that are flexible enough to work on the right and the right size to work with me, I will get to meet them. It might take a few meetings to find the right dog. Once the right dog is selected and assigned, I believe they will do any specialized training while boarding on site and then I go to their facility for a three-week training session.

The dog itself has to be two-years-old and fully grown and cleared by a veterinarian before entering the work force. Moibility dogs have some of the hardest and most physical jobs out there for service dogs.