Wheelchairs and Service Dogs and Cerebral Palsy (oh my!)

When I became the human component of a service dog team three years ago, it was the beginning of a completely new independent life.

Even though I was a competent dog owner for many years and felt had a good grasp of dog behaviors and living with dogs I found that a service dog took a bit more work and adjustment because of the level of obedience and skill level they are asked to perform on a daily basis.

As time with my dog partner passed, tasks that once took active planning on my part, became second nature and when I think back to those first few weeks or months it makes me smile because the things that were so hard for me to do I can now do without a second thought.

But as I was cruising through life with my four-footed assistant, a growing concern to myself and my doctors began to move to the forefront of my daily life.The number of falls I was having as well as my overall pain and discomfort was becoming a hindrance to me and taking a toll on the quality of my life. Now it seemed my ankles, knees, as well as my lower back were all trying to one-up each other as most painful, and I usually had scrapes and bruises from falling.

My doctor, once again, begin giving a not-so-subtle push towards getting a wheelchair. He felt it would help in preserving my energy as well as the wear and tear of my body and hopefully reduce the number of falls I have since most of them were caused by fatigue. Falling had become so commonplace, I really didn’t think they were all that dangerous despite the bruises and abrasions but when my doctor heard I had hit my head after falling in my bedroom I was handed a prescription for a wheelchair.

The idea of a wheelchair wasn’t new. As a child I remembered doctors telling my parents that when I was older a wheelchair would be an option for me, and it had been suggested again years ago after I’d been seeing a physiatrist but I didn’t feel I needed it just then, and even after getting the prescription, it was months before I acted on it.

I have since been in contact with a doctor who is more familiar with cerebral palsy and have learned that what I’m experiencing is a condition known as Post Impairment Syndrome. Cerebral palsy in itself does not get worse as you age, however because of the long term stresses in joints, as well as your muscular and skeletal and cardiovascular systems being under constant stress, there is a whole crop of physical issues, and premature aging that begin a new set of complications. Weakness, increased pain, fatigue, muscle loss, Arthritis, and problems due to overuse or strain on joints are common. I was told again that people with cerebral palsy use 3 to 5 times more energy than an able-bodied person to do the same tasks. This doctor stated that approximately 40% of adults with Cerebral Palsy begin using a wheelchair by the age of 50 and those numbers increase with age. The lifespan of those with CP are close to average depending on the severity.

My upper body strength tested better than average and my lower body strength tested far below average which was not a surprise to me but it was good to know that my feelings on my energy and strength deficiencies were not just “in my head” but a fact, and thinking that I was tired because I “am not active enough” was completely off base.

This doctor, after performing strength tests and measuring the amount of flexibility I had as well as watching me walk and perform basic tasks (such as standing from a seated position) stated he was surprised that I had “held out as long as I had” without using more aids especially considering that I work full-time and lived alone.

So after many months of putting it off, I begin what was to be a long journey of becoming a wheelchair owner/user.

Once I got my chair, my first inclination was to use it only when I was feeling “bad” for example if I had had a health issue like the flu or other such virus that had compromised my strength I would use the chair until I recovered.

When I picked up my chair ATP people suggested I use it and become used to it as soon as possible and that way when I did feel that I needed it I would be comfortable in maneuvering it in different situations. I had no idea what was going to happen: after the first couple of weeks of just learning to get around and basic skills like how to push in a straight line or turn corners nicely I became aware of something that really surprised me; I knew I had been tired to the point of going home after work and feeding my dogs and going to sleep and spending at least one full day of my weekend asleep recovering as it were from the stresses of walking during the week, but I hadn’t really realized the amount of fatigue and pain I had been living with until I started using the chair. Because my upper body was so much stronger at propelling myself than my lower body had ever been, my energy level was almost immediately, obviously improved.

I went from on average three falls a month to less than one. In the four months that I have been using my wheelchair I have fallen two times; once being knocked over by my pet (non service) dog, and the other after being very tired after doing yard work.

My pain levels have also decreased significantly. My ankles, knees, and lower back no longer need the same amount of pain relief or careful babying they once did. It’s not 100% a cure-all by any means, but it has improved my physical mobility far more than I imagined it would.

I have become completely comfortable using my chair during my work week and although my experiences away from my office are still limited, I expect to increase my use and learn and perfect new skills. I discovered my leg spasms caused my feet to move forward off the footrest, when I’m standing or in bed they cause pain and my legs to jerk, but when my feet were off the footrest the forward momentum was hard to maintain. I added a strap that sits across the front of my legs that prevents my feet from moving too far forward and it’s made a huge improvement.

Although I have discovered very positive aspects to using a wheelchair, I have also discovered a few that aren’t so great.

When you go through your daily life with a service dog you learn that things take longer. Getting ready to go somewhere, loading up in the truck, dealing with people who want to stop and talk about your dog or their dog, and just generally the care and time it takes to do things with a dog at your side. Add to that a wheelchair and you have a whole new set of challenges.

I arrive to work the same time in the morning that I used to however, just getting ready to get started takes longer. Unloading the chair from the back of my truck, securing any items that I need to take with me as well as the safe unloading of my service dog takes time.

The simple task of going through doorways has the extra challenge of maneuvering a wheelchair and a dog, often with item in my lap and a drink in my drink holder. Based on where I am going and what is in front or behind me as well as the way the door is constructed are all things that I consider before going through a doorway. My dog was not trained to work beside the chair because I didn’t use one when she was placed with me, so we have both had to make adjustments and learn new ways of doing things when I am using it. Sometimes I have Hope go ahead of me through doorways, another times she goes behind. Again it all depends on the situation.

The amount of space we take up has changed too. When going down narrow hallways at work a chair and a dog take up more space than a person and a dog.

One factor I had no way of anticipating was when I use my chair I am virtually silent. When I walk I sometimes compare myself to a horse clomping. Even when I am trying to be quiet there is no way that you would not know that I was approaching. In my chair however, unless you hear Hopes feet or her tags, I am able to sneak up on someone, so I have actually had to learn to be more aware of doorways and areas where someone could step out suddenly. I have to admit I really like the idea of being quiet as I move but it also comes with a new way of thinking.

It would be pretty embarrassing to take out my supervisor as they stepped out of their office!

Before using my chair many people would go out of their way to ask if I needed help, now, people seem to expect I need assistance with everything.

I made it a point to ask my coworkers not to assist me unless I specifically asked for help because I wanted to learn to do things on my own especially at the beginning. I have found many people especially think that I cannot open a door from my wheelchair, and are actually surprised when I tell them that it’s easier for me to do it myself then to have it opened for me because I can use the handle and doorframe to move myself through the door.

Having my service dog learn the place and speed at which I want her to heel in was a learning curve for both of us. Even when we were going along at a nice pace and I felt she was in a good position I found when I turned the chair to make a left-hand turn I was often close to running over toes. So Hope has learned to heal at a different place when I use the chair then when we are walking. It’s not perfect yet, but we are getting there.

I have also taught her the task or command “Forward.” I wanted her to be able to assist me in a situation where I may be on a slight incline or in a spot that needed just a bit more strength or stability, so she is now able to pull me as I grasp her vest or vest handle.

She is quite happy that she is assisting more now that I’m using a chair with items I can’t reach or have dropped, opening doors, as well as bracing as I get out of my chair. She is so happy to work and probably wishes I began using a chair sooner because she has more to do.

I have yet to use my chair during my (mostly) once a week grocery shopping because of the amount of items I buy. Having Hope (usually wearing her mobility harness) and holding onto the cart handle are still sufficient for me at this point, but I have used my chair for work daily since I got it and when I go on longer outings or shopping for a few items at large home improvement or warehouse type stores I use it then too. Some stores are a challenge with overcrowded or narrow aisles (I’m talkin’ ‘bout you Kohl’s) but, just like everything else, it will get better with time and practice.

I guess one thing I hope that people will realize is that going from walking to a wheelchair is not something to be sad about. It is not giving up. It is not being defeated by a disability. It is not being “more disabled” than I used to be. For me it has been a completely positive addition to my life as far as my mobility and overall health is concerned. The only negatives I have found have actually been due to other peoples thoughts and perceptions about this change. I did not start using a chair to become special or to make a statement that my disability is more real than your disability, or more valid. I did not start using it because it looked cool or I liked the color (although I must admit it is an awesome looking chair) or wanted to go fast (although that’s been a plus too).

I started using it because I wanted to improve the quality of my life and it has done that. If it seems odd to you that I get excited over new components or my new wheels, I guess it’s just because you can’t feel how it feels to be in a body that is constantly fighting you for every movement. This chair has been like a cool drink of water when you’ve been out all day in the summer sun. It’s a relief to my tired, aching, demanding body, so yes, I do appreciate it and it can make me happy.

I am very grateful for the opportunity to have such tools at my disposal. I know I’ve been lucky.

So even though I cannot stop the hands of time I have discovered a new way of living that is proving to be beneficial and I hope it can help me enjoy many more productive and happy years.

The next time you see someone in a chair, don’t think of it in a negative way. Yes they may have a disability, or have been through an accident or illness, But they are also able to be more independent than their bodies would allow, and able to move and do many more things than most people would realize.

Physically, my life has not been easy. Emotionally, I want to do things myself and be able to rely on myself to do the things that everyone else is doing and I will continue to educate myself and explore options that could be beneficial in maintaining my independence and health. I’m a firm believer that the only limitations are those you set yourself. I choose to go beyond what was and is expected of me and if that includes paws and wheels to get me there then thats the way I’m going to do it.

I have even begun thinking about participating in “fun runs” in my chair and I would have never imagined I’d have the ability to do that until recently. We will see about that but it’s nice to even entertain such thoughts.

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Three Years

Three years ago today I met a yellow Labrador.

Many people came together to make this happen. Month after month for two years, friends and strangers gave their time, shared their skills, and money, and asked nothing in return.

Others spent many hours raising, training, and caring for the dog I had yet to meet.

During this time I gained new friends and proof that kindness, generosity, and love exists beyond the pages of a fairytale.

On April 20th 2015 I watched as Katie from Little Angels Service Dogs came out of the kennels with a yellow Labrador named Hope.

I had known for a few weeks that this dog had been chosen for me and I’d seen some photos but when I saw her walking towards me, l remember thinking that they must have made a mistake; that there was no way I was deserving of such a beautiful animal. I wanted to get down on the ground and grab her and roll around but I sat as calmly as I could as Katie brought her to me.

She was smaller than I expected but solid as a rock. Her ears where thick and soft and I understood the term “rudder tail” as I ran my hand over it.

She did a “paws up” and as I felt the soft, flaps of her mouth, she licked my face with her very wide, wet tongue, and happily gave my chin a tiny nip.

The following two weeks went by in a blur. Learning how to work with a service dog in public, as well as understanding the level to which she must perform in, her care, as well slowly realizing this was really going to change my life seemed like so much to learn in such a short time.

It took awhile for me to change the way I thought about getting around. With Hope I could go places I couldn’t go before and she made everyday challenges easier.

Today I am writing this and Hope is curled up next to me in the chair. We spend every day together at work and on the way home she always wants some kisses and it’s like we haven’t spent the last eight hours less than two feet apart.

When we are home she is always nearby and loves to be my 65 pound lap dog.

When I think back to those first days together and how complicated everything seemed I laugh now because I can do just about everything with her without even thinking. I don’t have to think about how I’m holding the leash or where we are walking or what commands to use for different situations.

There are things in my life that, when I look back, I wish I’d made different choices but I think to myself if I had I wouldn’t be where I am today and I might not have this incredible dog and I know that I am exactly where I need to be and exactly where I am supposed to be, because we were meant to be a team.

As time passes I find myself continuing to strive to stay independent and active and I can’t imagine doing any of it without Hope.

Thank you to everyone who was and continues to be part of this journey. I am eternally grateful and blessed to have received such an amazing gift of Hope and the friendships I have because of it.

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Working it Out

Now that I’ve been on wheels a few weeks I can say there have definitely been some changes as a result.

When I first got my chair I thought I’d probably only use it if I were planning on going on longer outings, or if I were recovering from an illness but something has been happening and I know it’s a direct result of using the wheelchair at work; on weekends I’m actually able to stay awake and get things done, and my back and ankle pain is nearly always gone.

I’m not at an activity level I was when I was in my 20’s (don’t I wish) but I’ve actually been moving furniture in my living room the past two weekends and that would have been impossible a few months ago, and I know it will be improving over the next few months. I’ve also gone from an average of 3 falls a month to less than one because I’m not constantly exhausted.

I’m definitely getting around my office much better; doors are usually pretty easy and Hope is helpful opening them, and I have no problem carrying my tea or coffee now.

I did not love the leash hook I put on my chair so have had a custom leash made that’s due to arrive any day.

I absolutely love my chair, but I did have a few things that I found weren’t perfect after I’d used it a bit. Firstly, my Cerebral Palsy caused my muscles to become tighter at times I’d physically be trying to maneuver a tricky spot, push (or in my case pull) up an incline, or even during random times. My legs would move forward and my feet would move off the footrest and it made a huge difference in the power I was able to generate for moving forward.

After a bit of experimentation and internet searches I found a foot strap used to keep athletes feet in place during wheelchair sports. It uses a ratcheting system to tighten a padded strap down and can be fastened and unfastened easy. It was amazing at how having my spazzy feet contained allowed me to apply strength where I needed it.

The second issue I found was my seat pad is not going to work for me. It’s a bit slippery and has absolutely no air circulation at all. I live where summer temps are triple digits, and I don’t want to live in damp underwear!

I will be upgrading to a better seat cushion soon.

I also realized my seat back angle is a bit too reclined to be ideal but that can be improved with an adjustment.

My biggest change however is in the works; my Rowheels are on their way back to be rebuilt.

I had chosen the HX model but found it was difficult for me to get around carpeted areas as well as inclines. I really hadn’t realized how much effort I was exerting until I used my traditional (push) wheels one day and I was heartbroken. I love Rowheels and wanted them to be perfect so I was almost in tears.

I was thrilled when I found the Rowheels company was willing to work with me to ensure I have the perfect wheels. They will be rebuilding my HX set to the lower geared LX. They will require less effort to move and I think it’s going to make all the difference in where I can go and the energy I need to use to get there.

I’m very excited, because I have good upper body strength and was pretty surprised I wasn’t just nailing it. Rowheels are awesome, but the model I had weren’t quite perfect for me, but I’m sure the LX will be. My advice (as well as the advice of the people at Rowheels) is if you are interested in these please get a test drive!!

The downside is, I will be using my spare wheels while my Rowheels are being rebuilt.

I have only used them once before and was completely shocked at how my brain was already “set” in the ways of the Rowheels.

Logically, it seemed like it would be no problem to push the handrims instead of pulling, but I’d only been in my chair a minute before I was laughing like a maniac because I could not make myself move correctly. Tasks I was now doing without thinking were seemingly impossible. So much so by the time I got to my desk I joked if we had a fire I would be stuck within my cubicle walls, unable to move in the correct direction to escape.

I have to say, despite the small detours and adjustments, I think my start has been positive.

I was concerned because not only did I have to get out and learn to do things, I also had my service dog Hope that was learning too. She has done very well and I’m learning what works well for us in these new situations.

In a couple of weeks when my Rowheels are back, I’m planning to start putting some good distances under my wheels. I’m pretty comfortable in my workday situations now, so it’s time to branch out a bit and learn some new skills.

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On Wheels Day One

Today was the first day I used my wheelchair away from home. Before I say another word I would like to take a moment to extend huge respect to anyone who uses the chair either full-time or part-time.

I think once I get the feel for things it’s going to be easier for me to use the chair than to walk as far as my energy levels go but in my first 10 hours I had a few eye-openers:

BEING ON TIME.

In a perfect world you would leave the house in plenty of time to arrive at your destination with a comfortable amount of time to spare however as we know that is not always the case.

Today we arrived at work with just a few minutes before we needed to clock in and although I’ve become pretty skilled at unloading Hope and getting all my stuff together today was something completely new with the addition of the wheelchair.

I would like to say that I rolled on in; but I have to be honest here: I put my backpack in the seat of my wheelchair and pushed it in through the doors to the time clock. I was honestly afraid that I would be late trying to deal with my card key and the heavy double doors for the first time.

CLOCKING IN:

I did however sit in my chair to clock in and that was interesting.

We use a system that uses a personal identification number as well as a photo to clock in and out. Sitting in my chair the photo that was captured looked like someone about to go under water: a little face tilted up, barely on the edge of the screen. It was so ridiculous I started laughing but didn’t have the time or drive to re-do it.**

SORRY YOU CAN’T DRINK ANYTHING:

Normally during the early part of the morning my computer is running a program that takes a couple of minutes so I use that time to go get some hot water for my tea and another water for Hope. I rolled myself over to the coffee area and with a bit of a stretch I was able to get a cup and lid however it occurred to me that I really don’t know how I was going to carry near boiling water safely in a styrofoam cup in my lap (I’d left my good coffee tumbler at home). I rolled back to my desk and walked over to get the water. It didn’t get past me that I had been there all of 15 minutes and had already walked to do two of the things that I needed to do.

After my initial poor performances the morning went well and I actually found that my wheelchair was quite comfortable and I didn’t miss using my desk chair at all.

NEED TO ORGANIZE:

I wasn’t well prepared when it came to Hopes leash and treat bag. I ran over her leash several times and I ended up fastening Hopes treat bag inside my jacket (my chair is made to fit snugly and I don’t really have room to wear the bag on my hip). It worked but looked pretty funky.

THE WORLD IS NOT FLAT:

During my lunch hour Hope and I went out to the parking lot and did a few circles out there and then I decided to go ahead and venture out. On my first journey around the building I discovered that apparently there isn’t one single flat surface on the face of the earth! LOL

As we cruised along one of the sidewalks, it was so slanted I only had to use one arm to move one wheel. I joked that I would have to go back the opposite way to work the other arm or I was going to be lopsided.

GOOD THINGS:

I did notice one neat thing today: I’M QUITE!

I have never moved quietly in my entire life! With my dragging, stomping, jangling mess of a walk I always felt everyone knew where I was at all times. Today I felt almost sneaky! Hmmmmm.

During the afternoon I noticed Hope was heeling better and was watching me more often and was very aware of what I was doing as we turned corners. I didn’t think it would take long for her to realize what I wanted her to do and it was nice to see her figuring it out. I hope I can get the hang of things quickly too but for now I’m just pleased to have my first day in the books.

**I’d like to add that my HR department is working with me to make sure I can access everything I need and that the office is safe and functional for me.

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I May Hit the Wall but I’ll Look Good Doing It

It’s amazing how your perspective of things can change literally overnight. As someone who enjoys cycling on a recumbent trike, whenever I travel anywhere new, my eyes always look at the streets from a cyclist perspective; are the streets smooth? Are they wide? Do they have bike lanes? Are there dedicated bike paths somewhere? Does it look like a fun place to ride? And now being the owner of a wheelchair for exactly 6 days I have already found myself critiquing our sidewalks, store entryways, walkways etc.

In my extremely brief experience I have found that even though curved walkways and sidewalks are pretty, they’re harder to maneuver especially when you’re brand new. Also, it’s amazing how that street you thought was flat, the one you drive over every single day suddenly has quite an incline once you’re pushing yourself in a chair (it’s the same when cycling too).

Yesterday I spent a good part of the day just rolling myself around my driveway and down the sidewalks in front of my house and I see that there is a lot to learn.

Luckily my chair seems to have been set up correctly in that it feels very stable. That wasn’t the case at the beginning though and I actually would’ve had a bad fall if the ATP guy hadn’t been walking directly behind me the first time we went out.

When I was measured and my chair was built it was set up for traditional wheels, however I’m using Rowheels and because I am pulling to propel myself my weight and momentum was going backwards instead of forward as I would have been with traditional wheels.

As I was going down the sidewalk I came to a little dip and I had just pulled on the handrims as my chair started up so all the force was going back and the chair tipped.

After we went back inside the center of gravity as well as the other components were changed just a little to accommodate the balance point of the chair.

It feels extremely stable now and I even spent a while in my living room attempting to tip myself backwards (I positioned myself in a way that if my chair had tipped backwards I would have touched the couch so I would’ve been OK) of course it’s going to be different out in real world situations but yesterday I did go up and down some angles that I felt were pretty challenging and I felt very stable.

After cruising around in circles for a while I got Hope (Who had been supervising from her MuttMat in the back of my truck) and we did some heeling.

I started out by having a short traffic lead around my wrist and that worked okay and then I tried using my regular leash and wearing it over my shoulder and that was okay too although the leash clip eventually moved to where it was touching the hand rim and I didn’t want the metal banging against each other. Lastly, I fastened the traffic lead to the frame of the chair and that worked well too, although that wouldn’t be ideal once we are out somewhere because I need to have her more maneuverable depending on different situations.

I know that there is a wheelchair leash with a frame hook and leash with multiple D-Rings made at Bold Lead Designs that allows you to easily change the length of the leash as needed so your dog can go behind your chair to go through doorways and then stay closer next to the chair. It would be helpful too when you came to a door with a pushbutton opener because the dog could go push while still being on leash.

I’m thinking that is probably the most attractive option at this point. Hope will need to be in the heel position almost all of the time but I want her to have the room to go behind my chair or to pick up objects I drop and bring them to me.

It also occurred to me yesterday that I want to find a small under the seat bag. I don’t carry a lot of stuff with me but my normal things are cell phone, keys and a treat bag that also is carrying my license, cards, and Hopes poop bags. I don’t know why I didn’t think about that sooner because you can’t have all that junk in your pockets when you’re sitting down.

There are several out there that look interesting I just have to decide on one.

I’m not sure yet whether I want an under the seat bag or a small backpack style pack. I can always have Hope carry them for now and that may be all I need. If anyone out there reading this uses one type or the other or both and has a suggestion I’d appreciate hearing from you.

Actually I wish I knew someone locally who uses a manual wheelchair and had some insight, some tips and tricks to make things easy it would kinda be a cool way to get an idea of how things work. I know my situation is different because I am still ambulatory (if I found myself in a difficult situation I can always get out of the chair and push my chair etc.) but I’m sure that I will come upon situations that it would be nice to know what I was doing before hand. I need a Drivers Ed class 😉. I also would like tlo know if any accessories are worth having or needed (especially when partnered with a service dog). My plans at this point or to keep it very simple. Once I decide on how I’m going to deal with the leash and the treat bag (At this point I think I’m just going to use a Velcro loop to hang it from the frame of my chair and have Hope carry my phone and keys) I think that will be just about all I need.

I don’t want to load myself down, nor do I want to load my chair with things to change its look.

I do think after watching videos of myself yesterday I want to move the seat angle forward just a touch. I seem to be in a little bit of a reclined position and I think I would be a little more comfortable sitting up straighter.

I did not get the upholstery I’d wanted (another style was ordered and I was not shown what was being submitted before it went to the manufacturer), and the tires on my spare wheels aren’t what I would have chosen (I don’t know if I will ever need those though so that’s no big deal) but all in all I’m pretty darn happy.

My chair is a TiLite Aero T and I think it’s pretty cool looking!

TiLite was always appealing to me for their design, fit, and quality and the Aero T was recommended as very well made and dependable model and it seemed it would be ideal for my needs.

The Rowheels are really exciting. Although I have not used a chair before I already appreciate the benefits using the rowing (pulling) motion vs pushing. I’m looking forward to long open spaces so I can “open her up” and see what kind of speed I’ve got 😂. It’s kinda funny that I love using my indoor rower and now I am using wheels that are compared to rowing.

When I was being evaluated, it was suggested I get in there and get comfortable with using my chair as soon as possible. Even if the plans were to use it during low-energy times or times when I was planning to expend more energy than normal, I was told it would be better to get some chair time in to get the feel of things right away instead of waiting so I’ll be taking it to work next week. Since it’s my week to use my truck (I carpool with my sister and we change cars every week) it will be easy and fast to transport. I’m sure that will be interesting and I won’t be surprised if I do something embarrassing (hold on please I’m stuck in the door) but hey, you gotta start somewhere, and no one knows what they’re doing most of the time anyway.

I’ve got my Apple Watch set to “Roll” so let’s go and get this done!

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Life Rolls On

Cerebral Palsy isn’t progressive in the traditional sense. The amount of spasticity I have will be pretty much the same throughout my life however my mobility does change due to many different reasons. As I grew and changed physically my gait changed. After a surgery it was like hitting a reset button; after I re-learned to walk and continued with physical therapy I would have a new way of waking. I never remember feeling like a surgery made a huge improvement but I’m sure they helped.

Now that I’m grown and done with surgeries it seems my biggest opponent is just plain old time.

Anyone who is beyond the age of 40 can probably think back to a time when they had a lot more energy. I know people in their 70s who are cycling thousands of miles in a year but even being in excellent physical health aging changes your endurance and in most cases your muscle strength.

My service dog Hope continues to help me every day however, over the past year, I have had a marked decline in my endurance. I’m still working full-time and weekends are the time I run errands, clean the house and attempt to keep the yard presentable (sorry neighbors I’m kinda slacking there) but I’m finding this past year I’m completely run down by the end of the week.

Not only does that impact my home life my overall quality of life has gone down. It’s super frustrating to spend all week at work and then on the days I could be out doing something fun or productive, I’m sleeping the entire day. I’m awake long enough to do laundry and basically prepping for the next work week but that’s no way to live.

Being tired also contributes to more falls. I’ve been great outside (no falls) with Hope to help make a quick adjustment when I need it but in the house Hope is usually just called to help with tasks (bringing items, picking up things I drop) when I do fall indoors she will help me up if I need her to but I don’t use her as a crutch or have her at my side at all times so I do fall.

Even though my falls have always been something that happens and they have been without major injury so far (fingers, knees, elbows get banged up) they have concerned my doctors (especially anytime I hit my head).

Nearly a dozen years ago my doctor brought up the topic of using a wheelchair during the times I was experiencing phases of being over tired. I’ve actually been told I would probably need to use a chair “When I was older” as long as I can remember, but I was in no rush and when my doctor broached the subject I considered it but didn’t pursue it at that time.

Early last year it was suggested again during a doctors visit that I get a chair to use for longer distances or when I’m recovering from an illness or just having a low energy time.

I have great upper body strength so using a chair will hopefully help me conserve energy and it will reduce the damage I’m doing to my lower back, feet and knees because of the way I walk. The rehab specialist I saw was most concerned about reducing the number of falls I have and if I have more energy the amount will lessen.

I know some people (maybe a lot of people) would see using a wheelchair as something sad, as giving up, admitting you’re getting your ass whipped, but I don’t. It’s a tool. Just like my crutches and just like Hope. I have lived every day trying to get out there and do the things everyone is doing. It’s a lot of work! So after a few more months of finding myself worn out more often than I would like, back and ankle pain, I agreed to go for an evaluation.

It was the start of quite a detailed process.

I spent weeks researching different chairs and spoke with many professionals as well as wheelchair users and decided a TiLite was the one that would be best for me.

During the beginning stages of this process, totally out of the blue, I was sent what I can only describe at this time as a gift from God. A person who not only became interested in what was going on but insisted on helping in every way (boy I thought I was stubborn!!). They became immersed in every detail of the process (in a totally positive way) and was a great sounding board, cheerleader, expert of customization, and offered a (somewhat) gentle reminder to keep the ball rolling when I’d hit a snag in the process (i.e. doctors offices that can’t seem to fax requested paperwork, or return phone calls for example).

I would have never been able to get through this as quickly or get a chair of this quality on my own.

As it was during my years waiting for Hope, I was once again humbled by the generosity and kindness of someone who wanted nothing in return and yet gave much more than I felt I deserve. I hope they know I feel truly blessed by what they have done and am very fortunate to call them my friend.

I have to say this process has taken much longer than I imagined (I believe we are closing in on seven months since my first doctors appointment) and I had no idea how many component options there were on a chair. It’s actually more detailed than buying a new car. Paint color and finish, front wheels, forks, rear wheels, breaks, upholstery, foot rests, seat angles, wheel camber, and on and on.

It’s actually pretty cool to not only have the best fitting and performing chair but one that could be completely different than anyone else’s.

It’s not quite over yet. As I write this my chair is being built (hopefully almost done) and I have to admit I’m getting really excited to see how it looks.

I also have an awesome set of wheels going on the chair called Rowheels that was totally my partner-in-crimes doing that I can’t wait to try out.

They are completely different than traditional wheels and the Rehab doctors I saw as well as the ATP that I am working with had nothing but positive things to say about them. They are made so instead of pushing, you actually pull the handrims to move forward. You use a larger set of muscles with the pulling motion, it keeps you sitting more upright, reduces shoulder pain and you go further with each stroke than traditional wheels.

My ATP said that since I don’t have the “push to move forward habit” in my head (this being my first chair) I should do great with them. Since Indoor rowing is a daily thing for me I am thinking that might even help too.

Hope will still be working every day. On days I use the chair she will still be able to do most of her tasks (she won’t need to brace or help with counter balance unless I need help getting out of the chair but everything else will be helpful) and she will probably like having me use it because we will be able to go on “walks” instead of just sitting around when I’m too tired. I really don’t expect her to have a lot of trouble learning to work next to a wheelchair. It will be a learning experience for both of us I’m sure she’ll pick it up easier than I do, but that’s nothing new LOL

So now I guess my life will be on six legs and occasionally four legs and four wheels. It’s all good. I’m looking forward to more energy, less injuries, and a really cool chair.

UPDATE: I wrote this a few days ago but hadn’t posted it yet and just got a phone call this afternoon that my chair was ready! In four days I’ll have my new ride!

Posted in Service Dogs | Tagged , , , , , , , , , , | 3 Comments

Why I Chose to Go Natural 

I am NOT promoting the use of medical marijuana I believe that is a choice you have to make for yourself. 

I’ve decided to write this just to give you some idea of why I chose to use it. 

My little photo collage: 


The first photo shows my abdomen after my first surgery to implant a drug infusion pump. It was, and is, considered a wonderful advancement in the management of Cerebral Palsy. I only wish I had taken more photos because the bruising was spectacular! 

The next four boxes show a brief summary of SOME of the side effects of the drug used (Baclofen) in the pump (there were too many to list). 

Personally I had many side effects of the drug. Some were just uncomfortable or inconvenient, and others were potentially life-threatening. It was a new set of challenges and stress I had to deal with in my already challenging life. 

After almost three years the first pump quit working so I had a second surgery to replace it with an advanced model which malfunctioned after three years and also quit working. At that point I felt that any benefit of the drug I might have had been receiving (reduced muscle spasticity) was vastly outweighed by the side effects, not to mention the costs (one surgery alone was over $79,000) as well as having my entire life revolve around refill dates (every 6 weeks) and related doctor and physical therapy visits. Unfortunately I still have the non-working pump in my body because even with my insurance the cost of surgery to remove it would be too much for me to take on. 

Last year I got a recommendation and begin using medical marijuana (MMJ). I switch between two or three different strains depending on what’s available in my area. They control my muscle spasms (they are completely gone the days I use MMJ) and pain, as well as helping my depression and anxiety. The side effects listed include dry eyes and dry mouth (although I haven’t noticed any) versus respiratory failure, incontinence, depression, eating disorders, just to name a few out of a long list from the drug I’d been using. 

The sixth photo shows one of the strains of marijuana I use. It’s quite pretty, smells like citrus and is not scary at all 😉. I have it delivered from a local dispensary when they have it, or a state wide delivery service if my local place doesn’t have one of the strains I use. 

The next three boxes show some details about a couple of the strains I use. I use strains high in CBD so I get the benefits of physical effects without any “mental effects” in other words it alleviates lot of my physical symptoms, without making me feel high or stoned and I can stay productive during the day. 

There are strains for daytime and nighttime use and many ways to use them. Smoking, eating, applying as lotions or oils are all choices. 

Again, this is not a promotion for marijuana but I think that more people should rethink that “Just Say No” mentality that we were raised with and see marijuana for what is; a plant with medicinal purposes. I know for me it has been a life changer.

 If you still think everyone who “smokes pot” is bad; I work 40 hours a week, pay my taxes, go to church, donate to charitable causes, participate in community events, drink coffee and love Taco Tuesday’s and basically enjoy life. My friends, coworkers, and anyone who meets me would have no idea I have used it that day.

 I chose to try a natural approach to help my medical condition because I’ve always felt that in most cases nature knows what it’s doing better than we do and the only thing that I feel would make it better is if the stigma of its use was removed, and I had no fear of retaliation because I’ve chosen to use a plant over prescribed pharmaceuticals. It really is a shame that even with legalization there is a feeling of needing to be secretive. I have put off writing this for many months because of fear of backlash. I hope that this will change so other people who may be intimidated to try it as an alternative approach to their care will feel comfortable. I know some people will always feel is wrong; I grew up feeling that way myself, we were taught drugs were bad, but I guess I was too young to question why we would accept without question anything a doctor told us to use but a plant was considered dangerous or evil. 

After my latest surgical approaches lost their appeal I begin researching other less-evasive treatments and I realized it was something I wanted to pursue and am very glad I did. So for me it’s plants over pharmaceuticals. 

I hope this helps you understand why I made the choice I did and see that use by an informed individual should cause no more concern than any other natural method. 

Posted in cerebral palsy, Medical | Tagged , , , , , , , , , , , , | 3 Comments