A Mac Truck in a Small Parking Lot

Have you ever felt like you've been run over by a mac truck?

Have you ever felt like you were trying to get around in a small parking lot in one?

Do you ever wonder how a handicapped person gets around inside their apartment? Or do you take it for granted they just can?

I'm attempting to create humor here as sometimes my patience is thin. It depends on how tired I am. Since people who have fibromyalgia often say they feel like they've been run over by a mac truck; I feel like I am trying to maneuver a mac truck in a small parking lot.

About two months ago, I began using my Drive Scout Mobility Scooter in my apartment. Fortunately, this apartment is wheelchair accessible... mostly. In a manual wheelchair, I could go forward into the bathroom and small kitchen, but couldn't turn around. There is certainly no room to swivel a regular electric wheelchair around. I'd still have to back them in to get certain things done. They are low to the ground, so reaching up over counters is a painful strain.

My scooter has a swivel seat and is higher, so I thought I'd give this mini mac truck a try in my small parking lot... I mean apartment. It's like trying to get into a public restroom that says it is accessible but really isn't. This happened at a Walmart store. I was able to get in, but because of the placement of the door, it was impossible to reach over the handlebars to pull it open to the left and get out. Who engineered these things?

Since I started using the scooter, it has been easier to reach kitchen counters by swiveling the seat. However, when I ride forward into the kitchen, I must back out... around the bend. Tight squeeze. The entrance is not in a very convenient place... the back door to the back patio is. But these apartments are supposedly wheelchair accessible. Ouch, every time I hit a wall, door, corner, or anything else I collide with. Not ouch to me, ouch to the scooter and the things I run into. In order to get into the refrigerator and cabinets on the far end (far for me), I must back in... around the corner. Back, forward, back, forward, until I get lined up enough to get around the bend. There's usually additional forward, back, forward, back to get into position without hugging the cabinets on either side. My kitchen reminds me of the RVs I used to live in.

To the bathroom is around a corner where I park in front of the bathroom door, swivel the seat, transfer to a stool, and scoot across the far end (feels far to me) to the toilet. There's no room to turn around, so I must back out to the other end of the hallway before turning the bend to return to the living area. I don't always calculate this turn without needing to realign and try again. This becomes a major obstacle when I tried doing this in the middle of the night in the dark... but turning on a light was too much shell shock to my senses... and being half asleep didn't help my driving ability. I'd Y turn to get out of the bedroom, steer around the bend into the hallway, pull up the bathroom door, etc. Back out into the living area to turn around and drive back into the bedroom. I finally gave up and put my camping toilet in the bedroom.

"Y" turns take a lot of practice in a scooter. Forward, back, forward, back, until I can get it lined up to back out without taking the wall with me. Reverse across a larger area takes a lot of practice, too. So does patience. I can back into my work station and swivel to use my computer. Many times, though, this takes multiple tries until I get lined up comfortably. 

I love having the floor of the scooter to put things on for transport... especially heavier items like a gallon jug of water. I love having the basket in front to put things in for transport and carry basic necessities around with like a bottle of water, a pad of paper, lozenges, portable cell phone charger, and more.

I did check into what the two other wheelchair accessible type units are like. They are the same except for no wall between the living area and the kitchen. Not enough improvement to make it worth moving again... not that the people already in those units plan to move anytime soon.

By the way, the first thing I tried was a small salon stool on wheels. It worked great scooting all over the apartment until the wheels got dirty, wouldn't roll easily anymore, and when I elevated the seat to get to the counters, the top came out of the base and nearly spilled me onto the floor. This is the one I use in the bathroom now. It stays in the down position. I then tried a larger one. When I elevated it up, I found out I am not heavy enough to get it back down again. And the seat was too big, so I kept sliding off until I placed a piece of rubber shelf liner on it. It didn't work out, and I gave it away to someone else who needed one... and is a larger, heavier person than I am.

What color is my mac truck? It's black with red trim!

Lessons from Occupational Therapy

To retrace my progress, with the new Medicare Advantage HMO plan I have, I learned I could get home health. REAL home health... which included physical and occupational therapy. GOOD QUALITY physical and occupational therapy.

I've been dealing with issues of pain in my right arm, wrist, and hand for over 30 years. With this last flareup of Spondylolisthesis, I aggravated it all by supporting my body weight on canes and my walker. After the fact, I found out it is not a good idea to use the canes at all or the walker as a wheelchair, but the damage was already done. I could no longer do even simple self-care tasks using my right hand/arm.

Occupational therapy would hopefully assist with troubleshooting movement challenges with my arm and teach me other living skills I needed to learn. I had four somewhat productive visits.

First, Brian informed me that my manual wheelchair could be lowered so my feet touch flat on the floor. All this time I've had it (got it from a donated equipment room at the local hospital), I had no idea. No wonder I didn't like it very much. Lowered, I can use my comfy seat cushion and backrest as well as pull myself along with my feet... and because the chair has brakes, it is less risky (less of a fall risk) to use the wheelchair at home vs. transferring on and off office chairs on wheels.

I told Brian where it hurts on my right shoulder when I lift my arm. He explained how the nerves connect, checked the alignment of my collar bone and other structure, and observed that my shoulder was out of alignment due to weak scapula muscles and possibly a rib dislocation. He gave me an exercise with a band for pulling back and strengthening these muscles.

On another visit, I told him when I raise my arms to reach for something, I get pain in my arm. He asked me to show him how I reach. I reach with my palms down. He told me to always reach up
higher than my elbows with my thumbs up. Palms down rotates the (right) shoulder in and pinches nerves. I don't know if my arm will get better, but at least I know how not to make it worse.

We also discussed during the four visits the many kitchen tasks I was having trouble doing and what adaptive equipment I could get to achieve these tasks. One major one is cutting things. Another was when my right arm hurts a lot, I needed to be able to do everything with one arm. Don't one-armed people have adaptive equipment they use?

I have ordered this cutting board because the posts will secure something round like a bowl for mixing, a jar for opening, or food to cut up, is off to the side, and the board also has (not shown in this image) spokes to put food on to hold it in place so you can cut it:

CLICK HERE TO VIEW OR BUY

Out of the different types of knives available, I chose this one. I won't have to rotate my hand to grip it nor will I have to push down from above.

CLICK HERE TO VIEW OR BUY

Note: Adaptive equipment is expensive because the manufacturers know people will pay more to have them. I balked at first, but then just ordered it all. I would really rather have someone who did all these tasks for me so I could save all my energy to do the exercises that will strengthen my body and do things I enjoy (like writing). Food prep, cooking, cleaning up after cooking, cleaning up the floor after cooking when I spill stuff, doing laundry, and cleaning, in general, have never been tasks I enjoy doing. Ask me to organize something, and I'll have some fun.

For more about how I adapted to trying to get the base on and off my Vitamix, go the previous blog post about Difficulty Swallowing.

An additional website Brian gave me (the one he looks for all his adaptive equipment on) is performancehealth.com.

And if I continue having trouble swallowing after 30 days on Proton Pump Inhibitors (PPIs), it may be a muscular issue. The GI doc had already told me this but couldn't tell me what to do about it. Brian told me speech therapists are trained to help with this. Thankfully, this same home health agency has speech therapists, too.

Postscript to the post Lessons from Physical Therapy: Tie a piece of stretch band to the outside of the door handle. Stretch band will not slip off like the last thing I tried. As I leave with the mobility scooter or wheelchair, pull the band over my shoulder which will close the door behind me.

Lessons from Physical Therapy

Amerigroup expanded into Lampasas County where I live, providing me with a Medicare Advantage plan which included many of the services I have been needing for little or no co-pays: Physical Therapy (Home), Occupational Therapy (Home), Home Nurse Visits, and online Psychological Counseling. In this post, I will focus on what I've been taught by physical therapists... which includes fall prevention... as another fall could jar L5-S1, causing additional damage. I've already slipped a little further from Grade 2 to Grade 2-3, just over 50 percent.

DON'T ROCK THE BOAT: NO TWISTING OR SHEARING

With unstable spondylolisthesis, rocking the pelvis forward and back or twisting is a no-no. I knew I had been doing some exercises that were aggravating the condition, but didn't realize just how many.

Pelvic tilts? No! Instead, pull my belly button to my spine for 5 seconds (abdominal bracing) x 10 or more times. In addition to doing these multiple times a day, whenever I do anything like standing up, transferring in and out of the wheelchair, on and off the toilet, do ab bracing! Squeeze buttocks (bottom squeezes) for 5 seconds x 20 three-four times per day.

Therapy Ball? No! The therapy ball, because it is a ball, is too dangerous. I must not do anything that can 'rock the boat' of spondy which can happen each time I lose my balance even a tiny bit.

Kicking legs back? No. In other words, no leg extensions.

Spinal stretch twist? No. Not when lying down or sitting in a chair or reaching over to the left or the right.

TRACTION?

Never! Just like chiropractic on this part of the spine when you have unstable spondy, traction on an already unstable area is a no-no. I just sold my inversion device.

WHEELCHAIRS (MANUAL ONES) ARE ADJUSTABLE

All this time I've been using a manual wheelchair in my apartment (and to local medical appointments if I was going to a small building), I didn't know it could be lowered. I just knew it was too high. Now that it is lowered, I can sit on my favorite seat cushion and can get around easier with my feet which can now sit flat on the floor... and my arms get a rest from trying to turn the wheels. With C5-C6 radiculitis going down both arms plus carpal tunnel pain, this was a challenge.

THINGS WITH WHEELS ARE DANGEROUS

I thought I had a great idea about using stools with wheels to get around on... and on and off of. However, just like the office chair that rolled to the left when I sat back down on it in February 2018, resulting in my slamming on my right hip as I hit the floor (and jarring my spine), transferring on and off other things with wheels is risky, too. I am safer using the wheelchair which has brakes and applying these brakes whenever I am transferring to something else or standing to reach for something.

WALKERS CAN'T BE USED LIKE A WHEELCHAIR

I had been using my walker for transportation as much as possible... while sitting on the seat. I was warned they weren't designed for this, and two different therapists told me they have witnessed the frame breaking while a patient was doing this... even someone as small and as lightweight as I am. Of course, this meant I could no longer go to some of the places I had been going to... like Toastmasters meetings... which are held in the back room of a large restaurant. The person who was giving me rides can't accommodate my wheelchair.

DON'T LIFT THE WALKER IN AND OUT OF THE CAR

I asked the therapist to help me with the logistics of getting to and from my car with either canes or my walker... and how my hatchback door was heavy. As for the canes, it is too dangerous as I can still lose my balance and fall. Even though it only weighs 11 pounds (I used to have one that weighed 22 pounds), I was told to never lift it. My back is too unstable.

AB BRACING... AB BRACING... AB BRACING...

I must learn to be my own girdle and back brace. The therapist must have told me to do this about 50 times during my last visit as I kept forgetting to.

STANDING MARCH

This exercise was given to me, but the therapist can't climb inside my body to understand what happens everywhere when I stand up. I modified this one by marching in my chair.

HOW TO ACCOMMODATE LAMPS AND CEILING LIGHTS

I have a ceiling fan/light combo in each of my main rooms. When it is warm, I like having the ceiling fans on 24 hours a day. The wall switch turns them on and off along with the lights, so when I want to turn lights off, I had to stand to reach for the light chain. Fall risk. The simple solution (why didn't I think of this?) was to buy chain extenders. I even got fancy and found some with a one-inch crystal.

While I have mostly ceiling lights on wall switches, I still needed two standing lamps for additional lighting. With the one by my work station, I had to stand up to reach up and over to the switch. Fall risk. For the bedroom, the lamp was clear back by the head of my bed, the main light was with the fan which went on and off with the light switch... and the pull chain for the light was over the bed. Fall risk and frustration with getting around in the dark. The simple solution (why didn't I think of this?) was to buy a set of outlets you plug the lamps into which plug into the wall outlets which operate from a remote control device. Now, from the doorway of my bedroom, I can turn on the lamp by the bed and turn the lamp by my work station off.

HOW TO REACH CLOTHES HANGING IN THE CLOSET

...with a Shepherd's hook!! I did buy one, but I had an...

EPIPHANY!

I realized I could take most of my clothes off the hangers, fold them, and move them to the cabinet with doors I have in the bathroom... where another stool lives... and brighter lights are. Of course, in order to do this, I spent hours trying to find new locations for what was in the cabinet.

But what to do with my blouses? Ahhh... I saw that if I removed the lower shelf in the built-in cabinet by the sink and put up a tension rod, I could hang my blouses! Of course, in order to do this, I spent hours trying to find new locations for what was in the cabinet.

Now, I can dress and undress in comfort without dealing with hangers and a closet. The closet can get used for STORAGE.

PACING

With chronic fatigue syndrome and fibromyalgia on top of spondy, I have yet to learn how to properly pace myself. All that work taking down clothes, taking them off hangers, folding them, and placing them into the bathroom cabinets wore me out. On top of that, the therapist had recommended I do the exercises every day--even twice a day--unless I have a fibro flare. Gung ho with now knowing the proper way to move, after being dormant for over a month, I did too much all at once. I climbed back on the recumbent stationary bike (which, by the way, I had moved from where it was because it was a fall risk to climb back into it) for about 15 minutes (with rest stops in between) and did a series of band exercises for my arms and legs. I also washed 2 shirts and 2 pair of capris in my mini Wonder Wash, prepared some food in addition to using the Vitamix which required it all get cleaned up, and did additional exercise picking up everything off the floor I had dropped. The following day, my body was screaming with major fatigue for dessert... and I found myself in the midst of a major fibro flare.

Wheels

I enjoyed some years of walking... how I reframed my recent "episode" (implying it is not permanent) of leg weakness/pain over several months that kept getting worse until I couldn't walk at all. This time, since I'd been through it all before (and already have my wheels), I didn't panic.

Me--not panic? This is a new one for me. I finally digested that stressing out makes things worse. So does getting angry.

The weakness/numbness in my glutes, thighs, and legs moves around--to the right side--to the left side--back again. To the toes--but different ones each time. No matter how many pillows and pieces of foam I prop myself up on, I wake up with cramping hips and legs.

In the past, I just got weak and numb all over from the waist down. I am currently on guard, wondering if this will happen again... so I am getting prepared. Better to be prepared than sorry. I arranged for someone who runs errands, and I will call and register for the HOP -- transportation to doctor/therapy appointments, especially ones that are out of town.

Since I know we are made up of energy, I watch where the 'energy' goes with some amusement (vs. fear). But not knowing when or how it will affect me, I decided it isn't safe to drive more than around my tiny town -- at least for now -- until I know what to expect. It would never happen suddenly... slowly over the course of say 5 minutes.

I had to begin asking for rides... something I had never been comfortable doing... if I was going to continue participating in club activities. Thank goodness I finally know people I can ask for help from! I can't drive further than my tiny town (no cruise control) as in addition to pain/weakness, I get cramps in my right leg while it is holding the position on the gas pedal.

I pulled out my WHEELS which had been on standby in the storage closet off my back patio for who knows how many years -- since sometime in 2012 after I moved into this complex on the other side.

While I went and sold my electric wheelchair (oops), I kept the walker. I had (falsely) assumed that if I needed an electric wheelchair again, I could get a new one because it had been more than 5 years since I had gotten the other one. Nope. Medicare changed rules. You can't get an electric wheelchair for outside... only if you need one in the house. Do I hide all my chairs on wheels and ask for one anyway?

Also, I didn't have to pay a share of cost for the other one (which I got in California) and I'd have to pay here. I would only be able to get the very expensive one that Medicare will pay for... billing me 20%. If I have to pay 20% of $5,000+, I'd rather invest $700 in a scooter of my choice. Unless I can manifest a donated one. :-)

It is possible that going two years without chiropractic didn't help... at least I got to go for three years from 2012 - 2015. I'd only be able to return if I had an accident... which I did... when I fell back in February. But even then, he could only treat me for 'headache' due to the subluxated atlas.

I started with a new one who has different equipment, and I will hopefully get at least 12 visits before Medicare cuts me off. He alerted me to a fact I had discounted all these years. I hadn't paid any attention to the words PARS DEFECT clearly stated on the many MRI and x-ray reports I still keep in my files. He showed me L5 had broken away from its base (pars) which is why it slipped forward. (See arrow.)

When I was 21, I had ignored the word Spondylolisthesis that was typed on the accident report for insurance (at least I kept a copy) after I crashed into a parked car because I didn't know what it meant. I could have saved myself grief when the Physiatrist I went to in 1998 suspected I had MS. It was years before I went through old
files and brought it to his attention.

Back to the walker. Here's a link to the one I have...

NOVA-Cruiser-Light-Rollator-Walker on Amazon

I got it in California before I moved to Texas. In case you ever need one or know someone who does, I recommend this one. (I don't have a basket under it.) It held up in the extreme heat and cold conditions during the many years it was stored in the outside closet off my patio. Unlike the vinyl on my comfy office chair that is disintegrating, the only damage this walker has are multiple pinprick holes in the seat... reminders that I once had cats that enjoyed digging their little claws into it.

Most walkers I've seen do not have wheels... and wheels are wonderful! They roll over everything (almost), even an occasional bug. (Yuch!) It is even wonderful when I need to transport things like groceries in and out of the car.

I am enjoying this walker, especially since I found a large tray with high sides to lay on the seat. (Photo below.)

I am enjoying the secure feeling of holding the handles. (Note: I am finding reasons to be positive.) I wheel it around the apartment and put whatever I need to transport from one room to another on this tray, including a cup of water and my cell phone. It saves me a lot of trips and actually helps me be better organized.

I even pull the walker up to whatever chair I sit on as it holds my water, notebook, pen, snacks, paperwork that needs to get filed, stuff to throw in the trash, etc. Wish I thought of doing this in years past.

I even have a Word Puzzle book on it for when I am using the toilet... hoping to distract myself from the sensation of pain when I sit on it. (Imagine the sensation of sitting on a bruised butt, hips, and backs of thighs, but it is neurological.) I tried a raised cushion, but it was just as bad. It was only meant to make it higher, not softer. I'm open to ideas...

My walker is great outdoors, especially when I need to sit down, although I can't walk very far. The seat is a bit hard, so I don't sit for long. I can also pull myself along while seated for short distances (like after I've visited my neighbor). This is actually good exercise for your legs, although steering it while seated doesn't work very well.

Going backward is much easier to steer, but dangerous if you hit a crack in the pavement. (Yes, I've done this.)

Did I mention it only weighs 21 pounds, so I can get it in and out of my car? Yes, it folds. And yes, the little exercises I've been doing gave me some arm muscle strength, and I'm grateful that the frozen shoulder I had in my right shoulder cleared up a few years back. With the wider of the split seats in my Dodge down, it will fit into the back end of the hatchback.

I am grateful for the dumpster on the opposite side I can drive right up to for throwing my trash into. (Drive-up dumpster. Not really. I'm just being funny.)

I can drive up to the mailbox at the post office to mail letters, etc., but still have to walk from my car to my mailbox... which is down by the office.

But wait! This is a small apartment complex compared to the monster ones in larger cities, many of which I have lived. And my car is parked right outside my door. Isn't this a gorgeous Crate Myrtle?

I was worried the walker wouldn't fit into the trunk of my new friend's (Monica) car... or behind her seats. She just happens to have a model car with a truck that goes on forever!
Monica joined my Toastmasters club in December... reluctantly accepted an officer role (like I had done)... and lives nearby. Yay! I had been driving my own car to Friday daytime meetings, and she drove me to additional training and meetings further away or at night. During long drives, we've gotten to know each other and have quite a bit in common... never a dull conversation or long stretches of awkward silence.

Monica has a 9-year old daughter (Lili) who is an angel (like her mother). During the summer, she joined her mother (and sometimes her little brother, too) for Toastmasters meetings. She is very grown-up and has often filled simpler roles at meetings such as timing and being a Topics Master. She loves to get up in front of the group to speak.

Monica used to work 60+ hours a week in hotel management, but when her health began to decline, she made changes. Now she does a variety of income-generating jobs which include house-cleaning, website design, and building a Young Living (Essential Oils) business.

Lili helps her mother with house-cleaning to earn some money of her own, and I asked her (Lili) if she wanted to vacuum my apartment for $5. She is also learning how to play the guitar, so it was a joy for her to stay and show me what she has learned on guitar (I still have one). Then I uncovered the electronic keyboard where she stayed glued for another hour.

Anyway, on the way back from Toastmasters, we stopped at the HEB Superstore. The original plan was to drop me at the entrance, but it seemed everyone decided to go to the store at the same time we did. Even finding a parking space was challenging, and it wasn't even one of the larger stores.

I used the walker to get to the entrance of the store (couldn't believe tiny Lili could lift it out of the trunk herself), switched over to a motor cart, and Lili pushed the walker through the store nearby. My heart was filled with joy having Lili and her Mom accompany me in the grocery store... something... believe it or not... had been absent way too many years of my life... having company while I had to shop.

When I first began going to Open Mics and other evening events for Writers and artists, I found out a young man by the name of Mikey lived two minutes from me. Mikey has never driven and has never owned a car. (Wouldn't that be nice?) He rarely lived in a place like my town where there is no public transportation (settled here when his parents moved here), but his parents moved North, and he will soon follow... back to a place that has public transportation. I learned that once you get a job with Walmart (Mikey works nights stocking), you can transfer to another one anywhere in the United States... which he plans to do.

Nicole (founder of the Writer's society) had been driving here to pick him up twice a month (20 minutes each way). I took over giving Mikey rides until about two weeks ago when I asked him to find us another ride. Since Nicole used to pick him up, she came and got the both of us.

(Note: socializing with people who are generous about giving people rides is quite nice!)

The other set of wheels is a salon chair.

Instead of using a wheelchair in the apartment, I have office chairs on wheels in each area/room. I got this salon chair for the kitchen. My kitchen is quite small, so this works easier than an office-type chair. It elevates higher than an ordinary chair (and has a padded seat). I wheel it to the refrigerator... wheel back to the counter... wheel to the stove, etc. Swivel this way and that. I open the cabinet door I need to be in front of (like the kitchen sink), and my knees fit nicely underneath -- except when I forget there is a pipe under there. Just the same, my butt and the back of my thighs still go numb after sitting on it for more than 5 minutes or so.

This morning, I remembered that Dr. Bergman (chiropractor) had given me a sacral belt the last time I was out to Huntington Beach, California. I have it on now, and my right leg doesn't feel as weak. This strap is tight.. holding my pelvis/sacrum together, and Bergman had advised I not wear it more than a few weeks... just until I got to my hometown chiropractor and my L5-S1 stabilized.

Stabilized? I never could understand how this would be possible.

I see my new chiropractor tomorrow for the 2nd visit. I will get his opinion about the belt. Hoping for improvement but have finally learned "it is what it is" and catch myself making up stories based on thoughts I can't prove. i.e. I can't prove the condition will continue to get worse... and don't catastrophize like I used to do all the time.

I'm done with past years of numerous procedures, injections, and pharmaceutical drugs to hopefully get relief. It was all very temporary, and in the long run, caused additional problems, never mind the miles I had to drive to get them and the endless waiting in waiting rooms.

I already know surgery is not an option. I am continuously learning about alternative treatments for pain... and I hope to experience them... like float tanks (you float for an hour in a warm pool filled with Epsom Salt), PEMF Therapy (Pulsed Electromagnetic Frequency), and sound therapy.

BTW, I learned in the Matter of Balance course I am repeating to put the letters ICE in front of your emergency contact name/number in your phone. I just wonder how they will get into my phone, because I have it password protected, but I was told they can. If they can, doesn't that mean a crook can, too?

I also learned to keep copies of your DNR, Power of Attorney, medication list, etc. on your refrigerator door. This is the first place emergency personnel will look when they enter your home. Note, I said copies. Keep the originals in a safe place like your safe.

I even learned that a physical therapist is supposed to analyze you and fit you for the right walker and cane. Really? I don't have access to P.T. and said so. I went home, looked at my walker, saw that it could be lowered another notch, and lowered it. I am, after all, a short person and didn't realize I could lower it.

P.S. The image of L5-S1 Spondylolisthesis is one I got on the internet because I couldn't get a clear photo off my x-rays. It looks pretty close!