A lady with brown hair is in a pink sleeveless t-shirt out walking in her wheelchair on a bright sunny day. She has a towel on her lap and gloves on her hands. The text on top of the image reads: “Rethink the way you speak about walking!”

Exercise for Every Body

Last month, I wrote this post in response to an article about walking as a means to improve health and fitness. When I hit “publish” I had no idea what type of reactions, if any, my readers would have. My fellow wheelchair-using readers all said, “Right on!” Or something very similar.

Then, more and more people started asking me about options for physical activity for people with disabilities. I started to provide information when a friend posted this comment on my Facebook page:

Why don’t you research and write your own article on fitness for those with disabilities?

Before long, the idea took hold. Why don’t I do more than just complain? While I am not an expert on physical fitness, in my prior career I did spend time researching and writing about health and wellness for people with disabilities. So, here goes my attempt to tackle this topic. Keep in mind, I am not a person who loves to exercise. In fact, I am pretty much a person who would rather do data entry into an Excel spreadsheet before exercising. And I HATE data entry.

Whenever anyone asks me about fitness for people with disabilities, I start by referring them to the National Center on Health, Physical Activity and Disability (NCHPAD), a “public health practice and resource center on health promotion for people with disability.” NCHPAD works to improve health and wellness for people with disabilities through increased participation in physical and social activities. Their website is a wealth of information and a great resource for people of all ages and abilities.

I really like their campaign How I WalkThe movement aims to rebrand the word ‘walking’ so everyone is included in the many walking initiatives. Through images, like the one below, videos and social media messaging, the campaign hopes to show how walking is an activity for people of all ages and abilities – even those of us who cannot “walk” in the traditional sense of standing on two feet and putting one foot in front of the other.

A lady with brown hair is in a pink sleeveless t-shirt out walking in her wheelchair on a bright sunny day. She has a towel on her lap and gloves on her hands. The text on top of the image reads: “Rethink the way you speak about walking!”

I especially like this campaign because I regularly go for walks in my community. From April to October, as long as the weather allows, I spend at least part of every weekend taking walks on many of the local bike paths and trails. My favorites are the Old Champlain Canal Trail and the Erie Canal. Parks & Trails New York has a great interactive map for people who want to explore the Erie Canal, which stretches across New York State. I enjoy being out in nature, and the trails allow me an accessible opportunity to explore. And while I may not be actively wheeling a manual chair, the simple act of maintaining balance and equilibrium on an uneven surface still requires muscle use. Trust my knees and hips on that!

Photo of a walking shaded walking trail next to a canal. Tall green deciduous trees line both sides of the path.
One of my favorite paths, the Old Champlain Canal Path is mostly accessible.

Sometimes people hear “exercise” and immediately think “gym” or “fitness center.” While I do have many disabled friends who do exercise regularly in fitness centers, that has never really been an option for me. My physicians have discouraged extended land exercise for me, so the benefits of joining a gym do not merit the expense. Instead, with the help of my Personal Assistants (PAs) I perform regular stretching at home and use exercise bands a few times a week.

The one activity my doctors and physical therapists agree is great for me is aqua therapy. Three mornings each week, I go to a local therapeutic pool and complete an exercise routine focused on strength and cardio. I’m not going to lie – I love the pool but I still hate exercise. I go regularly because it reduces pain and makes me feel better to spend three hours each week in warm water. I am privileged to have the income to be able to afford a membership, and PA staff who can accompany and help me. These are obstacles for many of my disabled peers.

Exercise doesn’t need to be organized or expensive though. I have friends who exercise by turning up the radio in their house and dancing to their favorite tunes. Other friends of mine count on their intimate moments with partners to burn some extra energy.

Any movement that gets your blood flowing and heart pumping is better than no movement at all!

30 Days of Thanks Day 15 – Mary Frances

I first wrote about Mary Frances earlier this year. Mary Frances was the woman I was fortunate to share a room with during my stay at Sunnyview Rehabilitation Hospital. Some of my newer readers may not have had a chance to read about her, so today I am recycling this post in honor of the woman I am now proud to call friend.

I met Mary Frances shortly after my arrival at Sunnyview Rehabilitation Hospital on January 27. I was sprawled on my bed, waiting for the next doctor to assess me, counting down the hours until I could take more pain medicine. The nurse was attempting to make my broken leg more comfortable by rearranging the pillows while giving me information about the unit. She looked up as a woman was wheeled into the room saying, “And here’s your roommate, Mary Frances.”

Hello. How are you? Welcome to rehab.

The sonorous voice modulated in pitch and prosody, the syllables elongated – a technique I used to teach my clients when I worked as a speech-language pathologist. Mary Frances sat regally in her institutional chrome wheelchair, feet firmly planted on the foot pedals. Her slightly askew smile lit her face and the twinkle in her eye told me we were definitely going to cause a ruckus together.

My years of employment in a variety of healthcare facilities gave me multiple opportunities to observe the social interactions between patients and their roommates. The right roommate can make or break  your rehabilitation experience. Negative roommates or those who complain nonstop can make recovery more taxing for the people on the other side of the curtain.

Mary Frances was the best roommate I could hope for. She was optimistic, intelligent, determined, and talkative. We bonded quickly as we shared our respective stories. Mary Frances was recuperating from a stroke which had affected both her fine and gross motor skills as well as her speech and language. Like me, she was learning to do everyday tasks a new way.

The two of us connected over the silliest rehab moments – things which were incredibly meaningful to us but perhaps not to an outsider. She was seated on the other side of the curtain the first time my occupational therapist and I attempted to use a slide board to transfer me onto a bedside commode. I can only imagine what we sounded like as we struggled to find the right positions and hand holds. When my session was over, mission successfully accomplished, I saw that same gleam in her eye as she congratulated me.

You peed on the potty like a big girl! 

Each night, we watched Jeopardy! together. Mary Frances didn’t mind me blurting out the answers to questions. A former teacher, she did well on the literature and history questions. She also beat me on most of the pop culture questions, even with her speech delay.

Mary Frances was determined to do her best every day. She challenged herself in her rehabilitation, often working on hand exercises during down time in our room. One afternoon I returned from the therapy gym to find her making faces at herself in a small hand-held mirror. She attempted to excuse herself for what she assumed must look like silly behavior. I laughed at her, and asked to see her speech therapy homework. Thus began our daily routine of extra speech and language assistance. We spoke to Mary France’s speech-language pathologist who agreed extra practice would be wonderful, as long as it reinforced what they were working on in therapy sessions.

Mary Frances wasn’t my client and I knew it was unethical for me to act as her therapist. However, having the opportunity to use my clinical knowledge to help her provided a reminder that I was more than just a patient. At night when we practiced conversation repair, word finding techniques or facial exercises, I was able to escape from my own pain and injury for a brief time. I felt better because I was helping a friend who was making improvements each day.

Patients at Sunnyview are welcome to move independently about the facility as long as they have been cleared by therapy and nursing. Once cleared, you are given a green wrist band to indicate your freedom of movement. Not knowing this rule, I had been wandering the halls for two days before receiving my green tag. Mary Frances received her green tag a couple days later. We would go down to the cafeteria together for real coffee (Starbucks, not the kind they sent to our rooms on the morning trays). If she was too tired to wheel herself down the carpeted hallway, I sat closely alongside her so she could grab my handlebar, giving her a tow with my power wheelchair. Staff laughed at us before they realized they probably shouldn’t encourage this behavior. We ignored their warnings. Although we worked diligently, we both knew how to be non-compliant at times.

Mary Frances was self-conscious about her oral weakness and took steps to eat without drooling her food and beverage down her clothes. A few days before her discharge, we sat in our room eating roasted peanuts. Mary Frances concentrated all her energy on using her weaker hand to pick up the individual nuts and put them in her mouth. I asked Mary Frances if I could write about her and our rehabilitation adventures on my blog. She stilled her hand, swallowed her mouthful, and thoughtfully gave me verbal consent. I thanked her, then made a comment about how well she was doing eating the nuts without drooling.

Survivors adapt. Other people drool. Put that in your blog!

Survivors adapt. Two simple words with a meaning much more complicated and nuanced.

Thank you Mary Frances for helping me adapt to my new normal. Your encouragement and optimistic support made my rehab journey fun, something I never considered as a possibility. I am grateful for your friendship and so happy we have kept in touch. You continue to inspire me with your progress and improvement.

 

30 Days of Thanks Day 8 – Sunnyview Rehabilitation Hospital

When I was a college student preparing for a career in speech-language pathology, I always hoped for a clinical practicum at Sunnyview Rehabilitation Hospital. This facility, located in Schenectady, New York, a short 15 miles from my school, specializes in physical rehabilitation. As an aspiring rehabilitation professional, I wanted to be where the action was. I wanted to get clinical experience with people who were motivated to work towards a goal, who (unlike me) maybe looked forward to their time in rehabilitation.

*Side note – I know there are writing experts who will say I should spell out “rehabilitation” throughout this post, but all my life I have been calling it “rehab” and to change now would make this post sound not at all like me. Deal. It’s my blog and I can do what I want.

Does anyone else see the irony in me, a person who has always hated her own rehab and physical therapy (PT) and occupational therapy (OT), wanting to work at a facility that specializes in rehab therapy? While it’s true that I usually hate going to my own PT sessions, I have great respect for the professionals who have always tried to get me to maintain my physical function. Just because I despise the pain and torture of contract and release when applied to my own contracted joints doesn’t mean I don’t have admiration for those tasked with helping me preserve mobility and range of motion.

So, when the discharge planner and social worker came to visit me after a week in the hospital, I did not hesitate to tell them I wanted to go to Sunnyview for my rehab. I am well acquainted with the discharge process, and knew I might not be be viewed as a good candidate for intensive rehab. I understood my insurance might not authorize a stay at Sunnyview. But I did not want to go to a nursing home for rehabilitation. If I wanted to regain maximum function, I needed the best and that meant Sunnyview.

Thankfully, there was a bed available on the neuro unit, and insurance said yes. On Thursday, January  28, fifteen days after fracturing my femur and forty minutes after my morning pain pills, I was transported to Sunnyview.

One of the best parts of completing rehab at a rehab hospital is that the staff understands you are there to work. This may seem like an obvious point, but this mindset is not found at nursing homes where the majority of admissions are not high level rehab patients. However, all of the nurses and patient care techs on my unit knew I was there for a reason – to learn new ways of functioning so I could go home. From the first day, I felt everyone was there to help me do my best so I could make progress towards my goal. Everything was designed to give patients like me the best opportunity to perform well during PT,  OT and speech therapy. I did my part, participating in three hours of therapy each day without complaint. Well – I may have complained some. But, I still did everything that was asked of me.

By far, the two people who had the most impact on my successful rehabilitation were Tracey (my primary PT) and Joe (my primary OT). Tracey and Joe took the time to ask me questions about my life, my routines, my goals and my concerns. I was involved as an active participant on my rehab team at every step of the way. As a woman who has had to convince multiple medical providers I am indeed an expert on my body, I was prepared to have clashes with the rehab staff. Those clashes never happened with Joe and Tracey. They acknowledged my history with disability and encouraged me to try what felt right for me while still pushing me to explore new options.

My primary goal was to be able to transfer in/out of my wheelchair without needing a mechanical lift and without putting weight on my injured leg. Tracey and I tried different transfer boards, wooden and plastic boards designed to help a person smoothly slide from one surface to another. When I suggested the Beasy Board, which would ultimately become my new mode of transferring, Tracey didn’t question me. She just hopped up and went to find one so we could practice. After the first transfer we knew we were onto something good, so Tracey called Joe over to our mat in the gym to watch. The patient in me was excited to have found a good option. The rehab professional in me felt like I was once again part of an interdisciplinary team, only this time focused on me.

Because they knew I would need to train my PAs in this new method of transferring, Joe and Tracey packed my schedule with opportunities to work with other PTs and OTs. Each day, I had the opportunity to practice teaching at least 2 new people my new transfer technique. This prepared me well for the transition home, when I had to teach my home care team and friends how to help me.

After 2 weeks, I was ready for discharge. I had progressed as far as I was going to in the hospital setting and it was time for me to tackle the next step – my own home environment. I left Sunnyview on February 10, nervous about the transition but ready to sleep in my own bed. It was not the end of my rehabilitation, simply the end of the inpatient journey.

I am grateful to all the staff at Sunnyview who helped me make the transition from hospital to home. The nursing staff of 2 West treated me with dignity, compassion and kindness. Joe, Tracey and the entire therapy staff pushed me to do more than I thought I was capable of doing and encouraged me to keep working when I felt I didn’t have any energy left. I know I am where I am today because of their care and expertise.

 

Mission Accomplished!

For the past five months, I have posted rehabilitation updates on my Facebook feed as I reached rehabilitation milestones. I have been overwhelmed by the support and encouragement from hundreds of friends whenever I shared a progress report. Yesterday, I shared an important update – one I was not confident about achieving back in January when my former personal assistant dropped me and I fractured my femur

Rehab update: I have been discharged from outpatient physical therapy (PT)! And my sitting left knee flexion is 90 degrees! Without pain! 

Yes, I have been discharged from outpatient PT! The range of motion in my left leg has improved dramatically from January. Although pain is still a frequent companion, it is less debilitating than it has been in months. My tolerance for physical activity has increased. I have lost twelve pounds since my discharge from the rehabilitation hospital in February.

Do I sound like I’m bragging? I AM!

On January 11, while sobbing on my bedroom floor waiting for the ambulance, I knew I had sustained a life changing injury. When you live with a progressive neuromuscular disease, you know these types of events can strip you of independent mobility and function. It has happened to me in the past, and I was fearful of how this incident would impact my daily life.

I knew recovery would be a long, painful process. I was not wrong. There have been countless times when sudden pain caused instant tears and furious outbursts of expletives. Rehabilitation has been tough, and certainly not pretty. I have been cranky, moody, short-tempered and brusque with those who love me. I have snapped at family members who offered assistance, and pushed away well-meaning friends because I didn’t have the energy to be social.

But I am not a quitter, particularly when an orthopedic surgeon who doesn’t know me well tells me I will never do something again. Those who DO know me understand the best way to get me to do something is to tell me you doubt my ability to get it done.

And I don’t know how to fail with humility and grace. If I set my mind to do something, I stubbornly persist until I have accomplished the goal.

Back in January, I could not predict how long it would take me to get to this point or if I would ever get to this point. Yet, somehow I have made significant progress and my therapists feel I can be set free to continue rehabilitation without their assistance.

I WILL continue my rehabilitation program even though I have been discharged from PT. I know it is working. I see it in my movements and feel it in my leg strength. I have worked too hard to stop now. The scary truth is this injury may have finally created what physical therapists have tried to create since I first started PT as a child back in 1978 – a Denise who voluntarily engages in and enjoys routine exercise.

Current status: Relaxing with a gin and tonic while shopping online for a cute bathing suit in a smaller size. 😉

 

 

Happy Birthday Mary Frances!

Today is National Teacher’s Day. My life has been enriched by many teachers through the years. I would like to thank them all for helping to shape me into the woman I am. But I would especially like to express gratitude to a new friend – a teacher who taught me important lessons of perseverance and strength this year when I was facing new challenges.

I met Mary Frances shortly after my arrival at Sunnyview Rehabilitation Hospital on January 27. I was sprawled on my bed, waiting for the next doctor to assess me, counting down the hours until I could take more pain medicine. The nurse was attempting to make my broken leg more comfortable by rearranging the pillows while giving me information about the unit. She looked up as a woman was wheeled into the room saying, “And here’s your roommate, Mary Frances.”

Hello. How are you? Welcome to rehab.

The sonorous voice modulated in pitch and prosody, the syllables elongated – a technique I used to teach my clients when I worked as a speech-language pathologist. Mary Frances sat regally in her institutional chrome wheelchair, feet firmly planted on the foot pedals. Her slightly askew smile lit her face and the twinkle in her eye told me we were definitely going to cause a ruckus together.

My years of employment in a variety of healthcare facilities gave me multiple opportunities to observe the social interactions between patients and their roommates. The right roommate can make or break  your rehabilitation experience. Negative roommates or those who complain nonstop can make recovery more taxing for the people on the other side of the curtain.

Mary Frances was the best roommate I could hope for. She was optimistic, intelligent, determined, and talkative. We bonded quickly as we shared our respective stories. Mary Frances was recuperating from a stroke which had affected both her fine and gross motor skills as well as her speech and language. Like me, she was learning to do everyday tasks a new way.

The two of us connected over the silliest rehab moments – things which were incredibly meaningful to us but perhaps not to an outsider. She was seated on the other side of the curtain the first time my occupational therapist and I attempted to use a slide board to transfer me onto a bedside commode. I can only imagine what we sounded like as we struggled to find the right positions and hand holds. When my session was over, mission successfully accomplished, I saw that same gleam in her eye as she congratulated me.

You peed on the potty like a big girl! 

Each night, we watched Jeopardy! together. Mary Frances didn’t mind me blurting out the answers to questions. A former teacher, she did well on the literature and history questions. She also beat me on most of the pop culture questions, even with her speech delay.

Mary Frances was determined to do her best every day. She challenged herself in her rehabilitation, often working on hand exercises during down time in our room. One afternoon I returned from the therapy gym to find her making faces at herself in a small hand-held mirror. She attempted to excuse herself for what she assumed must look like silly behavior. I laughed at her, and asked to see her speech therapy homework. Thus began our daily routine of extra speech and language assistance. We spoke to Mary France’s speech-language pathologist who agreed extra practice would be wonderful, as long as it reinforced what they were working on in therapy sessions.

Mary Frances wasn’t my client and I knew it was unethical for me to act as her therapist. However, having the opportunity to use my clinical knowledge to help her provided a reminder that I was more than just a patient. At night when we practiced conversation repair, word finding techniques or facial exercises, I was able to escape from my own pain and injury for a brief time. I felt better because I was helping a friend who was making improvements each day.

Patients at Sunnyview are welcome to move independently about the facility as long as they have been cleared by therapy and nursing. Once cleared, you are given a green wrist band to indicate your freedom of movement. Not knowing this rule, I had been wandering the halls for two days before receiving my green tag. Mary Frances received her green tag a couple days later. We would go down to the cafeteria together for real coffee (Starbucks, not the kind they sent to our rooms on the morning trays). If she was too tired to wheel herself down the carpeted hallway, I sat closely alongside her so she could grab my handlebar, giving her a tow with my power wheelchair. Staff laughed at us before they realized they probably shouldn’t encourage this behavior. We ignored their warnings. Although we worked diligently, we both knew how to be non-compliant at times.

Mary Frances was self-conscious about her oral weakness and took steps to eat without drooling her food and beverage down her clothes. A few days before her discharge, we sat in our room eating roasted peanuts. Mary Frances concentrated all her energy on using her weaker hand to pick up the individual nuts and put them in her mouth. I asked Mary Frances if I could write about her and our rehabilitation adventures on my blog. She stilled her hand, swallowed her mouthful, and thoughtfully gave me verbal consent. I thanked her, then made a comment about how well she was doing eating the nuts without drooling.

Survivors adapt. Other people drool. Put that in your blog!

Survivors adapt. Two simple words with a meaning much more complicated and nuanced.

Thank you Mary Frances for helping me adapt to my new normal. Your encouragement and optimistic support made my rehab journey fun, something I never considered as a possibility. I am grateful for your friendship and so happy we have kept in touch. You continue to inspire me with your progress and improvement.

Today is Mary Frances’ birthday. She is celebrating with family, something she was not certain would be possible while we were together at Sunnyview. Happy birthday Mary Frances – may your day be full of love and laughter.