Sunday, December 4, 2011

Tennis Balls for Walkers: A Sorry Way to Help Disabled People Get Around Easier

I was finished with my visit at a doctor’s office when he commented on my walker. It was my Stander  walker, a lightweight walnut brown model that I take with me when I drive. 
“Nice walker,” he said. “I’ve never seen one like that.”
It’s a remark I get often, so often I feel like I should get a commission on those walker sales.
Then the physician said, “It’s better than those ones with the tennis balls.” 
To which I responded, “I’ve got one of those, too.” 
“By the way,” he added. “What are those tennis balls for? I’ve always wondered that.”
This was an educated man, a specialist, who was puzzled by walker tennis balls. I understand. I, too, am puzzled. 
The tennis balls
I know what they are for. But I’m not sure how they came to be the go-to accessory for people with walkers. And I don’t particularly like them: they’re difficult to put on, they wear out rapidly and they make me feel clown-like when I really don’t want to call too much attention to myself.
And as I have found with many mobility aids or walker accessories, there is a huge need for improvement.
Here’s what I know about tennis balls on walkers. They make for a smoother walk. Walkers come with either wheels or caps on their four legs. The rubber caps on the back legs wear out fairly quickly, leaving you to scrape along as you walk and possibly mar your floor (I have hardwoods). 
Here’s what I think about tennis balls on walkers. I really, really don’t like them. 
Number One, they are garish.  I mean neon green or flourescent yellow or whatever you call it? And tennis balls? Tennis, sadly, is a dim memory for folks who need walkers. Even walking unassisted is a dim memory for me.
Having sporty balls that practically glow in the dark seems just plain silly and insulting.
My husband once found some pale pink tennis balls that he bought and put on my walker for a change of pace. The idea, I believe, was fashion fun. Instead I found them creepy and mildly obscene.
It’s not just my imagination. People do notice my balls and often comment on them. Children, toddlers in particular, are hypnotized by them. They will stop dead in their tracks, eyes glued to my tennis balls. They will try to get the attention of their parents and try to form the words to ask the question: Why does that woman have tennis balls attached to her ... thing? One mother headed her kid off at the pass, interjecting, “She has trouble walking and the balls help her walk.”
One little boy’s eyes were huge as he pointed and exclaimed to his mother, “Look, she’s got basketballs on her....”
Dogs want to chase them. My cat is afraid of them.
Able-bodied grown-ups don't understand them. I’ve had more than one person ask me what they were for. One woman, accompanying her aging mother, asked my husband and I how to attach tennis balls to the walker.
Which leads me to my complaint Number Two: They are difficult to put on. My husband has to get a sharp kitchen knife and slice a gash in the bottom of each ball, then wiggle it onto my walker. A disabled person could not easily accomplish this.
Complaint Number Three: The soft fuzzy bottoms of the balls don’t stay soft and fuzzy for long. So after a while, you are scraping along again and you need to replace the balls.
Ball complaint Number Four: They’re expensive. My friend who is a tennis teacher gave us lots of used practice balls but they were already worn out and last just a few journeys before they had to be replaced.
There are few alternatives to the balls. Some walkers work with gliders, sort of miniature skis that attach to your walker’s rear legs. But they are hard to find. And replacements are usually in white, which continues the garish look.
Fake tennis balls
I did find a tennis ball look-a-like with removable bottoms in a local drug store. Those are easier to change (you don’t need a knife) but they wear out just as often and it's expensive to keep replenishing the bottom portion.

I found colored balls at another drug store -- blue ones made by Walkerballs. They were precut, but I had to cut mine further to attach them to my walker. They cost around $10 for two, which would be a worthy investment if they last longer than regular tennis balls. 
Blue Walkerballs
Here’s the catch: the package said “for indoor use only”.

That’s not practical for me or other walker users. I try to conserve my tennis balls by using them only inside but I used my blue-balled walker one day for my exercise class. Just walking 30 feet each way in the parking lot on asphalt chewed up my expensive walker balls. The Walkerballs website offers a variety of colors and prints so if someone was only an inside walker, he or she might find a pair an attractive and affordable option.
I also found one company that made walker glides that resemble tiny tennis shoes. That might appeal to some disabled folks, but not this one. I just find it cartoonish.
On a previous blog post, I wrote about how inventors need to come up with better walkers.  (I recently learned that there is a place in Southern California, Nova,  that is devoted to making stylish walkers and other types of aids.) I feel the same way about walker balls:  what’s the point of having a fashionable, modern walker if you’ve got to put tennis balls on it?

Monday, November 14, 2011

Regis Philbin: An Important Part of My Life Before and After Cancer

When Regis Philbin signs off this Friday on his last “Live with Regis and Kelly”, I will be sad.
There will definitely be a hole in my mornings.
Regis Philbin 
Even before I knew who he was, he was a part of my life. When I was a girl, beginning in the late 60s and into the 70s, people were always saying my dad looked like Regis Philbin. 
At first, I didn’t know who Regis was. Neither did my friends, when someone would tell my dad in front of me, “You know who you look like?” 
My dad
Yeah, my dad would say, Regis Philbin.
I learned from my parents that he was a guy on TV. At the time, he was breaking onto the national scene as a talk show sidekick for Joey Bishop. Then he moved on to local TV and game shows.
But over the past four decades, Regis has become a household name -- THE guy on TV -- holding the Guinness World Record for Most Hours on Camera. And over the last 6-plus years, he’s been a background face and voice in my struggle for health. Because I probably hold the world record for hours spent with a television on.
You watch a lot of TV when you are sick. At least I did.
During much of my lengthy battle with cancer, my brain was too fuzzy to read or concentrate. My family couldn't believe I wouldn't look at a newspaper.  I couldn’t follow the plot of a TV show. For months, I couldn’t move from my waist down, so I couldn’t walk around or look out the window. I spent years in bed, sleeping or paying slight attention to the TV.
A friend bought me a portable CD player, a relative gave me books on tape, my husband and others would buy me musical CDs. But I never used any of them. During my month-long stem cell transpIant hospitalization, I had a portable DVD player and a bunch of discs to choose from. I didn’t use them.
I was so weak and sick, they all seemed like too much of an effort.
Instead, I became dependent on my television for company and distraction. Light shows without a story line were preferable. I learned that technique from my mom, who I visited at home during her cancer battle. She would sit in her recliner, trying to watch a TV program, but falling asleep quite often because of her pain medication.
I remember sitting near her in the family room in the evenings, when she would wake with a start, angry because the crime drama she was watching was over and she didn’t know how it got resolved. (Those were the days before DVR, so you couldn't just rewind.) It just added to her misery.
During the mornings, she loved watching “The View” --- particularly Joy Behar (a Brooklyn native like my mother). And sometimes while watching that show, she would nod off holding her coffee. I would take it out of her hand so she could nap safely. Mom would awake happily, just picking up on the conversation. “I love Joy,” she would say out loud. “I love hearing her accent.” She would laugh out loud at Joy’s jokes.
When I became hospitalized for months and bedridden for years, the television was almost constantly on. I would not have the stamina to watch hour-long shows with plots. But “The View” and “Live with Regis and Kelly” were regulars on my bedside screen.
My dad doesn’t look just like Regis anymore. Only a couple years older than Regis, he once looked like his twin. My dad had the same handsome Irish face, the same curly dark hairstyle and the same endearing smile as Regis. Now my dad’s hair is grayer and the curls are gone. The handsome face and the smile are still the same.
He still looks like Regis to me. A few months ago, a friend of mine who did not know my dad in the earlier days, said to me, “You know who your dad reminds me of, Regis Philbin.”
Now people know who Regis is. He’s been a warm, genial and enduring entertainer. He’s been a welcome presence on my television for years.
And I know he has served that same role for many, many others.
One of my earliest weeks in the hospital, my roommate was a woman in her 90s. Because I was so physically close to her, I knew a lot about her, her health and her family. Her doctor had said there wasn’t anything more they could do for her. It was just a matter of time.
Her family was a source of disappointment, from what I overheard. Too busy to come visit or stay with her. But her paid caregiver would come every day and sit with her. The woman’s personal TV was on quietly for many hours during the day, mostly for the visitor to watch while the patient slept.
But every day at 9 a.m., her caregiver would turn up the volume and holler at the woman, “IT’S REGIS! REGIS IS ON!!”
“She loves Regis,” the caregiver would explain. She would try to awaken the woman for one last show. It worked. The woman would rally a little, then nod off.
“YOURE MISSING REGIS,” the caregiver would shout. “REGIS IS HERE!!!”
After a few days, I was moved out of the room to a rehabilitation wing. But every day when “Live with Regis and Kelly” came on my TV, I wondered if my former roomie had lived to see her Reeg just one more day. 
I am happy to say that I did for more than 6 1/2 years.

Monday, October 31, 2011

Hospital Roommate Etiquette: Rule Number Four

Here’s another in my suggested rules of hospital roommate etiquette. Rules onetwo and three involved things patients can do to make life more comfortable for the roommates.
Rule number four expands the horizon a bit to include people who visit you.
Rule Number 4. Control your visitors.
Let me say that I loved having hospital visitors, in small doses and at the right time. During my ordeal fighting paralysis and cancer, there were weeks when I was so out of it, I didn’t know who was visiting me. There were times in the Intensive Care Unit when visitors were not allowed. And there were times when I felt too bad or what was happening to me was so embarrassing, I didn’t want any well-intentioned extra guests in my room.
But overall, I was deeply grateful to have visitors. Some patients never had a visitor. It broke my heart. 
But a few of my hospital roommates needed to rein in their guests.
One older woman had a crowd of people coming to see her. They would have to walk by me to get to her, glancing at me from the foot of my bed to walk to her area.
One day, they all came at once. I didn’t have any visitors at that time.
As more and more people filed by me, I thought of the routine at the circus when an unending stream of clowns emerge from a car.
This was the clown car in reverse. 
The room was set up so each patient had half of the space, separated by a curtain that had to be drawn to provide us some privacy and pulled back to allow us to see each other and speak.
It was closed the day the clowns were sent in. The curtain next to me begin to undulate as more and more visitors crammed by my neighbor’s bedside. Soon the fabric had moved about a foot into my space and a couple of men’s back sides could be seen nearly hitting my bed.
Just then, thankfully, a nurse came in and sternly told members of the crowd they needed to stay on their side of the room and could not infringe on my area. She showed them the imaginary line that they were not allowed to cross.
I think a few of them left, because the space couldn’t contain them. 

It’s not too much to ask for boundaries when you are confined to a bed and have a tiny living space to begin with. I was using a bedside commode, a toilet right by me, so it was particularly creepy to think of sitting on the pot with a host of strangers close enough to touch.
I learned that not only does the number of visitors matter, it’s what they do there that can also be incredibly rude.
I know patients are sick and might not feel like policing their guests, but please, people, have some common sense when it comes to your visitors.
I’ll never forget one roommate I had who had issues with her mom. The mother brought the patient’s little boy, Damien (real name), to visit. While the two women were hollering at each other, the toddler would run over to my area, stare at me and touch everything.
This incensed me because I was immunocompromised, highly susceptible to any type of germ. And Damien's mother in the next bed was suffering from a staph infection! 
I had one roommate whose grown brother was a germaphobe who would use the hand sanitizer mounted near our doorway about once every 10 minutes. I had no problem with that visitor quirk.
But this kid was running around hog wild and the grownups’ only possible use for the hand sanitizer was as a weapon they might dislodge and hurl. 
One young teenage girl I was roommates with brought her boyfriend, who was in his 40s, with her and made him her permanent visitor. He slept in the hospital bed with her, fully-clothed, for days on end. He hid when the meal server came by, then the patient would ask for a second meal (claiming she didn’t like the first) and he would emerge later and eat it.
And he would use the patients’ bathroom.

Major piece of advice: NEVER USE A PATIENT’S HOSPITAL BATHROOM. It is  for the patient. Hospitals provide public restrooms on every floor for visitors. Walk a few steps (it will feel good getting out of the room for a while) and visit those when you have to relieve yourselves.
Not only is cleanliness a factor when anybody off the street is using your bathroom, but there’s a dirty little secret about that toilet. It will likely have a “hat” in it.
A hat, a cute name for something weird, is a plastic thing the nurse sticks in the toilet to catch urine or feces of a patient. When the person fills it, she is not allowed to flush, but has to notify the next attendant who comes by so it can be noted and recorded in the charts.
It’s just another part of being sick that is humiliating. But while your hat is waiting to be emptied, you don’t want somebody’s significant other running in there to use the facilities.
Lastly, make sure your visitors are rested enough to come by. If they are too sleepy to interact with you, what’s the point of visiting? (This doesn’t apply to those kind souls who plan to stay all night with you.)
One roommate had a daytime visitor who walked into the room, set his cell phone on a table and fell into a deep sleep. The phone would ring every few minutes, blaring screechy, grating music over and over. He did not wake up.
The woman he was visiting was kind of out of it. Two other visitors thought it was amusing, said he needed his sleep and did nothing to wake him up or grab the phone.
Which made for a lovely afternoon for her roommate: me.

Friday, October 21, 2011

Hooray! Two Disabled Accessories To Make Life Easier and Better

I’ve discovered two disabled accessories I want to share. I recently wrote a post about walker pouches and how important they are for every person who uses a walker.
But I was lamenting the fact that there is a large supply of boring utilitarian-looking ones, but very few fun, fashionable ones. I ended the post with a call to crafters to start sewing some attractive products.
A friend found someone who does just that. Her name is Kathy and she sews quilted walker pouches in almost 40 different patterns.
She says her mom needed a walker after knee surgery and her therapist hung a plastic bag from it to tote stuff around.  "Yuck", Kathy said, or so she told me. I can make something better than that, she thought. And she did.
One of Kathy's pouches
She offers a fabulous array of colorful patterns and has some that would be appealing to men, soon to be expanded.
Kathy sells them on Etsy, the internet marketplace for handmade items. 
The second disabled accessory is a day planner for caregivers. It’s written by blogger Tory Zellick, who provides a wonderful complement to my blog: she gives insight and advice for the people who care for the sick. Zellick was 18 when her mother was diagnosed with breast cancer and she was a full-time caregiver for the rest of her mom’s life, more than six years
She says her caregiving  would have been easier had someone handed her a day planner to keep track of all the important information. So she wrote one to help others who find themselves in similar situations.
“The Medical Day Planner: The Guide to Help Navigate the Medical Maze” is available to pre-order from Amazon

It centralizes all the information one needs when caring for a sick person. Whether you are alone in taking care of your loved one, or you share that duty with siblings or professionals, a planner where you can write stuff down is vital.
When you get a diagnosis of cancer or something else serious, your brain immediately gets fuzzy. While the doctor is talking to you, it’s hard to digest what he or she is saying. And it’s even harder to remember it.
A book I just read, “Carter Beats the Devil” which is historical fiction about magic and has nothing to do with serious illness, captured how I felt when I first got the news I may have lymphoma. In a scene where two people are having a conversation, the author writes not that one character’s mind was elsewhere, but that it “flew up, around the room and out the window.” 
When you get a life-altering diagnosis, your brain finally comes back to earth. Hours or days later, you ask yourself, “Now, what did the doctor say?”
Many people advise you to write things down, questions and answers for your doctor. It’s good to have something to consult when your memory differs from that of someone who was with you.
Later, as you go through the treatment and healing process, there are multiple medications, tests and appointments to juggle. And often, several people involved.
In my years-long case, I had voluntary caregivers, my wonderful husband and family and friends, a paid caregiver and a host of nurses who would visit my home to give me infusions or injections.
My kitchen island looked like a pharmacy, with mountains of meds (including two bottles that were so high, I called them the Twin Towers). Making sure I got the right doses of stuff at the right time was a confusing job with many participants.
When I first got sick, I started keeping a folder of my test results and notes. Sometimes a friend or my husband would write things down while I talked to the doctor. And we added it all to the folder. It got huge.
A day planner would have kept essential information in a central, organized spot, so anyone visiting my home could consult it. It would have assisted in the continuity of my care. As Zellick points out, it would even be useful for an able-bodied sick person  to keep track of his own medical journey.
My mother-in-law is fighting cancer now. She has a blend of family and professionals taking care of her. At one point about four months ago in the middle of what seemed like tag-team care, my sister-in-law said to me: “I need to get a book where we can all write things down and leave it at the house.”
The Medical Day Planner could not only be used at the house, caregivers could bring it to appointments. Too bad it won’t come out until March. We could have used it in our family for the past 10 months.
It would be a good gift for someone who has received a serious diagnosis of cancer or anything else, when you are not sure what to do or say. He may not even know he needs it (his mind might be still out the window). But he does.

Sunday, October 16, 2011

50/50 Movie Accurately Depicts Some Cancer Doctors

Saw the movie “50/50” the other night. My friend wanted to see it but she wasn’t sure if I wanted to. After all, I had lived through a harrowing cancer struggle and I might not be in the mood to be entertained by what was billed as a tough, funny tale of one guy’s similar battle.
I loved it.
It was true, beautifully-written and brutally-honest. It was laugh-out loud funny, hankie-grabbing moving and incredibly well-acted. (I told my friend that it helped that I knew the writer, Will Reiser, survived his cancer. Otherwise I would have cried buckets rather than cups. This isn’t a plot spoiler: he was doing pre-movie publicity.)
For a few of the scenes, I felt like Reiser had a camera behind me when I was meeting some of my oncologists. When the character Adam first meets with the physician who tells him he has cancer, the doctor, clearly uncomfortable, never looks him in the eye. Sitting behind a desk, he speaks doctor-speak and quickly directs Adam’s attention to the MRI on the computer, where he proceeds to talk in even more complicated doctor-speak. Meanwhile, Adam (who is expertly portrayed by Joseph Gordon-Levitt) is in shock, trying to comprehend any of what the doctor has just told him. When he asks a basic question, the oncologist suggests he follow up with the medical staff.
I felt like grabbing a remote and pausing the movie so I could explain to everyone in the theater how deadly accurate this is and how illustrative it is of changes that some doctors need to make in dealing with patients.
First let me say that I’ll be eternally grateful that I had the doctors I did and they treated me as they did. I’m still here after a lengthy journey with cancer
I was a tough case -- hard to diagnose for months. My type of cancer doesn’t show up on any scans or blood tests. More than one doctor said I may have had a brand new strain. Two called it “Laura’s disease.” One, a cardiologist, told me he will never forget me and will think of me when he sees my case discussed at medical conferences in the future. My current oncologist, who is younger than me, says he’s never had a patient with my type of cancer and as long as he practices, he will never see one again.
I didn’t want to be the poster child for the most difficult to detect disease on earth. Couldn’t I just get regular cancer and go for the routine prescribed treatment?
While I was on the long path to diagnosis, I was getting sicker and sicker. When a brain biopsy finally revealed a rare type of lymphoma, a nurse practitioner came to my hospital bed and told me. She was so warm and friendly and caring as she told me the news, I felt lucky to have that type of cancer and lucky to be in that hospital.
But later, as I was treated by some of the top doctors, I never got a warm, friendly or caring vibe from them. They were just like the oncologist in the movie, brilliant but visibly uncomfortable speaking face-to-face with a patient. My husband and I spent many an appointment in a dark room looking at my latest brain MRI, while the doctor repeatedly zoomed back and forth (my eye sockets coming scarily at us) and said "hmmmm."  So what does that mean? In plain English?
We got real answers later from their nurses or associates or, when I had a stem cell transplant, the transplant coordinator, who filled in all the blanks and the empty parts of me that needed nurturing and explaining and reassuring.
I can understand how this can happen. Visiting some of my doctors was a lot like the first appointment scene in “50/50” where Adam passes tragic patients in the hallway. The overcrowded waiting rooms of some of my doctors were depressing tableaus of fear and despair.
It was a revolving door of desperately-sick patients. These physicians didn’t have the luxury of time to spend with each patient: they just had time to deliver the medical bottom line and let someone else on staff explain it in human terms. 
The problem with this scenario is that to the doctor, I was one in an unending line of seriously-ill people. To me, I was the most important person in the world at that moment. It’s my life we are talking about. So to hurry through it without taking the time to add some compassion left me feeling confused, terrified and cheated. Just like Adam in the movie.
I know, some doctors are just better at the science end of things than the human interaction part of practicing medicine. But seriously, how much time does it take to put on a caring face?
Because one of the hospitals where I was treated was a teaching hospital, I was a living lesson for unending groups of doctors, residents and interns. They would enter my room en masse. White coats and serious faces. The main doc carried my chart. 
The routine usually went like this. The medical millipede would enter the room, stay at the foot of my bed. The doctor would ask me a few questions, jot a few notes, maybe check my heartbeat. Then the students would look at me as if trying to figure out what they had learned that day. Then they would shuffle out until the next time tomorrow when a new group made their rounds.
One day the man in charge asked me a question. If I could give some advice to an aspiring doctor, what would it be? Many pairs of eyes looked at me from the foot of my bed. 
I said, “Be nice.”
Visibly amused, they shuffled out.
It wasn’t what I meant to say. I didn't mean to imply they were mean. I meant to say “Be kind and offer some compassion and look at me like I’m a person, not a medical case.”
Some of my nurses were wonderful at that. Because I was a regular in the in-patient chemotherapy ward for more than a year, they welcomed me with kind faces every month when I showed up. One nurse took an interest in my family and I in hers. She kissed me when she saw me each month. Another nurse, when I told her I was not coming back for the last monthly chemo (yay), cried. She would miss me, she said. 
I don’t need kisses and tears from my doctors, but you get my point.
One hospital doctor stood out. When she would come into my room, she would not stand at the foot of my bed. She would come to my side, hold my hand and look into my eyes while she talked to me. She showed genuine compassion for what I was going through and didn’t act as if she were pressed for time.
It was nice.