My Life On Six Legs Continues

Dezzi gave birth to four males so I knew that choice had been made for me. It would be my first male dog.
Since Dana knew what she was doing, we agreed that she would choose the puppy she felt had the best temperament to be trained as a future service dog. We both knew that many dogs in training didn’t make the cut to be a service dog, and I agreed that if the puppy she chose didn’t work out, he would be my pet.

The puppies were “color-coded” on the day they were born and as the days passed I had my eye on one particular puppy that I thought was just a little cuter than the others. Dana and I would talk often on the phone and FaceTime so I could see the puppies as they reached different milestones.

Red, Blue, Orange,and Green

It wasn’t too long before she began talking more about “orange puppy.” I studied the photos and honestly I wasn’t too sure about him. He was a little smaller than the others and that didn’t bother me much but he also looked… Softer or fluffier or something. I couldn’t quite express what it was and I didn’t NOT like him but he was not my first choice.

Getting Bigger!

The puppy I did like had a very classic English lab look to him and Dana said he was a very good puppy as well and she was considering him, but she just had a gut feeling about “orange puppy“ and the more she worked with the pups and the more time that past she became more sure that he was the one for me.

On my birthday she let me know she had decided “orange” was mine.
I trusted her 100% and knew that I would have the perfect match, so I let her know what I’d named him: Echo.

It’s Echo!

When Echo was about three months old I got to go for a visit.
Any doubts I’d had completely vanished the second I met my beautiful boy!
I remembered when I’d first seen a photo of Hope…I was familiar with the American Labradors so seeing all her hanging skin and droopy English Labrador eyes was something I wasn’t sure I liked. Once I met her I thought (and still do) she was the most beautiful dog I had ever seen. It was the same when I saw Echo.
It’s kind of even embarrassing now because he is so cute!

Meeting Echo!

Just after he turned 6 months old, I brought him home for a visit. I wanted to bond with him and he knew his tasks well enough that I could easily continue working with him here.
We had thought a week visit but once he was here it was wonderful having him!
I often drop things and he would pick them up and hand them gently into my hand. He won’t do any weight-bearing tasks until he’s two, but for now he has already been a help and for the first time since Hope passed, I have been happy when I wake up.

Good boy!

I’m happy to report that he has some personality traits that Hope (and Hopes sister Peanut) had. When very happy he will hold a toy in his mouth and happily snort. He likes water and rides in the truck and playing fetch and is a love-bug.

Echo and Duck

He is so light he definitely got his color from his English Cream Retriever genes. His ears are dark and the tip of his tail has a little hint of color.
It will be a challenge to keep him looking clean because his rear will show a dirt spot after practicing “sit” out on the driveway LOL I will be including pet wet-wipes in my regular supplies.

Happy boy!

I’m enjoying getting back to a life with a dog. Morning coffee and brushing him out on the patio, lunch breaks for training and a bit of play, dog toys in the living room and having the extra laundry of dog blankets…hair on my clothes. For now I’m taking care of him but as he grows older he will also take care of me. I had no idea this was the path my life would take but I know it’s what is meant to be and Echo will be by my side so all will be good.

Morning walk with Echo and my Alinker

My life on 6 legs continues…

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The Gift

As I have mentioned in previous posts Hope completely changed my life. Not only was I able to do much more myself (with her help of course) I became friends with so many new people and I even accepted a job with Little Angels Service Dogs (best job ever)!

Among my coworkers is a woman named Dana. She is the Prison Program Manager, which is really cool, but she is also the Whelping Coordinator. What that means is; she makes it possible for the organization to continue producing our wonderful dogs.

The first time we met was on my infamous “black-eye head cold” camping trip before I even worked there. She was friendly and funny and l found out she owned Peanut who had the same parents as Hope (but born a year or two after Hope) so of course that was really cool and gave her instant points in my book of good people.

Hope (back to camera) and sister Peanut

She also owns Peanuts daughter Dezzi as well as a beautiful St.Bernard named Penny who thinks she’s a small dog and tries to sit on your lap when you visit.

When Dana found out that Hope was diagnosed with IMHA, she worried because she had known other dogs with that diagnosis and they had not survived. She also worried because she knew how much help Hope was to me and how much I needed her everyday. She hated the thought of me having to live without a mobility dog now that I had had that life. 

Unfortunately, years ago when I had been matched with Hope, I had not thought to continue fundraising afterwards. I didn’t even think about the day when Hope would not be able to work, or wouldn’t be here at all, so if I needed another dog I would have started from step one of the process to get a dog and I was looking at 2 to 5 years or more before being matched.

Shortly after Hope passed away my boss emailed me and said when I was able, to give her a call because she wanted to talk to me about something. 

A few days later I called her and was told that if I was agreeable to it, Dana wanted to give me a puppy that would be trained as my service dog. 

After crying from the shock of such a generous offer,  I contacted Dana. 

As I have mentioned I am a firm believer in things happening the way they are supposed to happen and things that some people might call coincidence, often have a higher meaning to me because of my faith. 

I didn’t (and still don’t) yet know why Hope left me, but what Dana told me made me believe things were happening for a reason. 

Normally, when Dana arranges dogs to be bread it is with the intent of becoming service dogs for our organization (or other service dog organizations). For some time she had wanted to breed Dezzi with a particular male Lab and about a month before Hope passed away she had Dezzi breed, but unlike all the other parings Dana had arranged for dozens of dogs over the years, Dezzis pups would belong to her.

When I called her, she told me what my boss had told me; that she would like to give me one of the puppies that was going to be born and she would like to help train it to be my service dog. I don’t remember everything about the call because I was in such shock that I was being offered such a gift, but as the conversation continued and Dana told me that this puppy would be related to Hope I was unable to do anything more than cry with happiness.

Not only was she offering me a gift that meant so much, I felt that she was also giving me a little of Hope back.

Unfortunately I don’t live close enough to Dana to stop in and visit but over the next few weeks she included me in everything that was happening with Dezzi. I got to listen to the puppies heartbeats before they were born and I got to watch them kick and move.


Dezzi wasn’t huge, and we joked about her only having one puppy. 

She was due on St. Patrick’s day which I took as a good sign because that is my favorite holiday. I thought it would be neat if they were born the day before on my dad’s birthday, but we watched and waited as those days came and went. I was slightly disappointed and paused collecting Irish names for my puppy, thinking I might consider other names as the days past. 

One evening I sat in the living room and wrote down random words/names without really thinking about them. I came up with a good sized list and then put them away for a few days. Later I went down the list and crossed out the ones that I didn’t like. When I got to one in particular I remember wondering to myself what made me write that name down. I thought to myself what that particular word meant to me and when I did, it became very obvious that that was the perfect name for my puppy!

I want to mention here that I have a pretty small family. Out of all 365 days in the year, Hope had shared her birthday with one of my two sisters. I wasn’t overly surprised then when Dana text me one morning near the end of March to say she was taking Dezzi to the vets. 

It didn’t go unnoticed that Hope and my pup shared this “unusual coincidence.”

The puppies, four males, were born that morning. It was my other sisters birthday as well! 

Dezzi and her four sons the day they were born

I also discovered that the veterinarian that delivered the puppies had the same last name of Hopes veterinarian up in Davis.  

I felt that I was being told that Hope was part of this and still helping me. It probably sounds silly to some but I found comfort in these small connections. 

So after living through three of the worst months of my life, I had the first inkling of happiness. A small spark of light had been lit in my heart…

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A Life Without Hope

Trigger warning:
This entry contains topic of illness/loss of service dog.

Before I have written the first word of this blog, I have tears streaming down my face and my heart is constricted with grief. I’m not going into too many details but wanted to keep this blog going and know it’s time to post this.

It has been almost 7 months now… in some ways it feels like an eternity, but in other ways a blink of the eye.

On January 1, 2020 I went out into the backyard and watched Hope as she went out into the grass to go potty. She sniffed just a bit and squat to pee. A few seconds later she took some steps forward and squat again. I took notice of that because it wasn’t normal for her. I think that some dog owners would not think twice about that, but being the handler of a service dog you have a different sense of awareness about your dog and their behaviors. Working dogs become such an important part of your life that you are always keeping an eye out to protect them, to keep them well, to see that they are happy and will have a long and successful working career. When Hope squat a third time to pee I knew something was wrong. I got the first available appointment on January 2nd and took her in for what I was expecting to be a UTI. Unfortunately, it was something much much worse, and even though the year got very bad for everyone this marked the beginning of a nightmare that I wouldn’t wish on anyone.

That morning when the vet came into the room she sat cross legged on the floor in front of Hope. As we discussed what was happening and general things about her health and daily habits I remember the vet lifting Hopes lip to see her gums and her expression changed drastically. When they brought Hope back in from running some lab tests I was handed some papers that described something called IMHA. Although I think I have always been aware of the health and behaviors of all of my animals I had never heard of this before. IMHA is Immune-Mediated Heymolytic Anemia. The dogs immune system begins destroying its own red blood cells. Prognosis is low; usually around 30% until you get past the third month or so and then it goes up slightly but it is a very very serious condition. I knew that it was going to be a very hard fight but I also knew that I had to do everything within my power to give her the best chance or I would not be able to live with myself. After some frantic research I knew that I wanted to get her up to UC Davis. I felt that if anyone could save her they could and although it was about a 5-6 hour drive from me I knew I had to try.

In the “visiting room” at UC Davis

Over the next six weeks Hope had approximately a dozen vet appointments between her local vet, the emergency vet, and UC Davis. She received blood transfusions, many medications and lots and lots of prayers. I spent hours sitting in the waiting room or parking lot of her local vets because I didn’t want to drive home and leave her. We made unexpected trips overnight to the UC Davis ER, driving up with nothing more than what we were wearing, booked hotel rooms from the parking lot at 2 a.m. and going to Walmart to buy deodorant, toothpaste and underwear so we could stay. A friend started a go fund me that thankfully covered the cost of gas, food and some of the medications and hotel costs. Hope had insurance but I paid up front and within 2 months the vet bills were almost $8000 (Our local ER vet being the most costly.) Hope seemed to be improving, but then would take a turn. Unfortunately her case was not textbook and had even the best vets in the United States unsure of why some of the things were happening the way they were. She was tested for so many underlying conditions but not everything in her results made sense so her treatment plan sometimes had to go with what they thought was happening. All this was going on before we knew about Covid so I was able to stay in a hotel very close to the hospital on the days that Hope was an inpatient. They would let me have a visiting hour where I could go in and she would have breakfast and I could take her out for a walk. The nights she spent in the hospital were the only time we had been apart since we met. It was so strange to not have her there with me. Even though I knew the odds were against us, I never expected anything other than for her to get well. After a few weeks the doctors begin talking about her future and it made me feel better that they were optimistic.

As usual Hope was happy and we were expecting the best

We had been up to Davis on Feb 19th and Hope had a check up and the doctors felt she was doing well. Her numbers were improving slowly, not as quickly as we hoped but still every little bit was good news. But, it was not to be…a week later at home, Hope passed away suddenly. I held her, covering her head with kisses and tears and felt all my joy and happiness draining from my heart.
To lose a beloved pet is hard. To lose my Hope was beyond anything I could imagine.
I spent the next weeks numb. Had this really happened? Why her? Why? She was nothing but love. My happiness and independence. The one who changed my life in ways I could have never imagined. I was alone again. Older now, with less energy than before, and a knowledge of how much easier my life had been with her by my side.

I was blessed with many friends who had been aware of Hopes illness from the beginning. Prayers, donations, cards, and flowers came in from all over the world, so many people loved my sweet girl! I felt guilty that people had donated and Hope had not survived, but I was so grateful that those gifts allowed me to give her the best chance of survival and allowed me to stay near her during her treatments.

During this time someone else had been aware of what was happening and made a decision that would change my life…

As soon as we met, she changed my life

continued soon…

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A New Path

Over a year has passed since my last post here. I think about updating it often, but it seems that I just haven’t had the time to sit down and talk about what’s been going on with me lately. There have actually been huge changes in my life and it still amazes me when I think about them.
Just a couple of months after my last blog post, I did something that just a few years ago I would never even have considered. It sounds simple really but for someone with mobility issues it really was a big deal. Hope and I took the train to San Diego to visit my friend Judy. I had met Judy when I went for handler training. She is a professional comedian but was also working for Little Angels Service Dogs. After I got home with Hope, Judy and I became friends on social media and she invited me to come for a visit sometime. 
Every year I thought about it but I had never done any traveling as an adult and frankly I was not sure about it. I’m one of those people that always has to know details of things; make plans and lists and know as much about something ahead of time as possible, so traveling any distance made me worry. Not only had I not traveled as an adult, I now had a wheelchair and a service dog to think about.
I don’t know what it was exactly but when Judy asked again about coming for a visit I just decided to go. I don’t have a lot of life experiences but I decided I wasn’t going to make any more sitting at home. 
As soon as I agreed to go of course I started worrying about everything but our plan was just to hang out by the pool maybe go see show, just relax and let the dogs play (Judy has a retired service dog and a working dog). 
A couple of days after I started planning we found out that on the days I was going to come visit, Little Angels Service Dogs was having a working vacation event that Judy was scheduled  to work. They were all camping with dogs. When the director of LASD found out that I had been planning to come visit she said there was room for Hope and I in one of the trailers and we were welcome to come along. 
Once again I went into a bit of panic mode. As a child my family camped quite often, but I just worried whether I would be able to do anything physically as an adult. 

On the train. Adventure awaits!

After the trip when people would ask how my trip went I would say Hope had the best time of her life and I didn’t quite LOL Hope swam in the ocean, she swam in the swimming pool, she swam in the bay. She was surrounded by other dogs and played fetch and ran and had the best time ever!

Best day ever!

Pools are fun too!
Hope and Oprah livin the life
For me, I started my vacation by doing a literal face plant on the sidewalk outside of a store. I cut my brow next to my left eye and spent the rest of my vacation looking like the loser in a prizefight. I still think about the two poor guys from REI that came out to help.

Looks like I lost the fight!

On the second day I was the lucky recipient of the cold virus so between my beat up face and my cold I was not in the best shape. I spent a lot of time trying to sleep. 
But now if I am to tell the story of that vacation I would say that Hope had the best time of her life and it was life-changing for me…
One morning I went out to sit at the campsite and the Director of LASD, who had also caught the cold, was sitting bundled up in her chair and we started visiting. We talked about general things and the conversation worked itself around to my job. I was telling her how I liked my job but it has been very hard since they had moved my department  out of town and I was having to commute. I told her that I had never been able to work on a normal schedule easily; even as far back as kindergarten I struggled with the normal school day schedule. I always needed to rest more and have different hours than what is traditionally accepted so as an adult working full-time plus a commute, it was hard. Little did I know that morning I was in exactly the right place at the right time…
I went back home with a healing black eye, a cold, and…a job offer!!
A few months after that conversation I begin working for Little Angels Service Dogs as the Applications Assistant. It was actually scary to leave my job after 15 years but it was absolutely something I could not pass up! It is a job that would allow me the flexibility my previous employer could not give me. I would be working remotely so could work anywhere I had my laptop. If I were having a bad day and needed a little more rest I could do that and make up my time in the evening. I did not have to work in someone else’s set schedule. But the other thing that has been so liberating is that I absolutely love everyone there and what I do! I have been an applicant myself so I know exactly what it feels like to wait and to worry and to question. I know how big it is to apply for a service dog and all the thoughts you have about how your life would change and all that questions you had and feelings about everything. And now that I have Hope I know what it’s like living with a service dog, so that really makes a difference with how I relate to the applicants. It is not an easy job. Sometimes it is heartbreaking. Sometimes I have to just take a break and cry a little bit, other times it makes me so happy to know that I’m even just a tiny part of someone getting a life-changing service dog. 
I have to laugh though when I think that not only does my dog assist with my mobility she assisted with me getting my job! 
We are both adjusting nicely to our new life. 

My screensaver looks awfully familiar

This was just the start…more to come. 

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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:


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.


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.**


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.


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.


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.


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!

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