Megan Drummond's Blog

Posted by Megan Drummond

My husband has been my primary care attendant since we moved in together four years ago, including the duration of our engagement. I changed my last name after the wedding a month ago and, suddenly, it's not allowed anymore.'s

In a way, I can understand the agency's reasoning, as I'm sure many married couples can. They don't want to be taken advantage of by people who just want the money.

In a way, I can't understand the agency's reasonng, as I'm sure many married couples can't. Your spouse is, more often than not, the one who is with you the most. I know mine is. He's the one who does all the things that my aide isn't here long enough to do.

Theoretically, I could get my PCA to stay longer or to come back in periodically throughout the day/night to do all the little things I need help with that my husband does. But I am fairly independent and don't want an aide around all day, especially when I am working or Ian and I are watching TV or a movie, etc. I am certain that many others are in the same situation.

Mothers, fathers, sisters and brothers are allowed to be PCA's. That wasn't allowed when I started receiving attendant care. Live-in attendants also weren't allowed. My service coordinator told me that the agency was trying to change this rule.

I'll keep you posted and let you know if it gets changed.

Posted by Megan Drummond

My shiny, spiffy new wheelchair, a Quantum 6000, was delivered on Monday. I had the tech adjust everything the way I needed it and he went over all the functions. Everything was all set, so he handed over the keys, so to speak, and left me in control of my new chair.

It took the rest of the evening to figure out that I had been seriously misled about the capabilities and features of my new chair. When the rep came to my house to evaluate me, I made sure to ask all the right questions.

• Do the armrests lift up? Yes.
• Can I drive while elevated? Yes.
• Do the footrests pull in under the chair? Yes.
• Is the chair any higher than my Permobil? No.

The answers to all these questions were just the answers that I wanted to hear. The armrests do lift, but I can't do it by myself. The chair can't be driven while elevated, prohibiting me from doing any cooking or cleaning. The footrests stick out far enough to prevent me from getting close to the breakfast bar in the kitchen. And the seat is much higher than my Permobil, high enough that my feet don't reach the floor, making it impossible for me to transfer by myself.

A new wheelchair was supposed to enhance my independence, not diminish it.

I wanted and needed a new chair before my insurance ran out at the end of this month. Now I have to return the new one with no time left to get a replacement and go back to my old Permobil until my husband graduated and gets a job with insurance in two years.

Posted by Megan Drummond

A demo of my new wheelchair, the Quantum 6000Z, was delivered today. The agency that I work with is allowing me to keep it so that I can get used to it before my own comes in in a few weeks. The demo model doesn't have everything that my chair will have, namely the seat elevator, and it has parts that I will not have on mine, but it is basically the same and will allow me to get a feel for it an how it drives.

I've only had it for two hours and I'm impressed and extremely frustrated. I am impressed because of how much better it is than my Permobil. It has good shocks, it's extremely quiet and it is cosiderably more stable than my Permobil was.

I am frustrated because I can't seem to drive it yet. I know I've only had it a few hours, but I just assumed that I would hop right in it and be on my way. I was very wrong. I've been in a rear-wheel drive chair so long -15 years - that I can't even get this chair to go in a sraight line. It has casters in the front and the back to give it more stability and the big wheels are directly under the seat. That configuration makes the chair drive very oddly, at least for me right now. I'm sure I will get used to it in time, though.

My advice to anyone out there who may be considering a chair that's radically different from the one you're currently driving is to ask your equipment provider if it would be possible to get a demo model. That way, you can drive it for a week or so and get used to it before you get your own chair.

Good luck!

Posted by Megan Drummond

During former football champion Ray Crockett's 30 days in a wheelchair, he was 'mentored' - so to speak - by a 35 year old quad who'd been injured at the age of 17. While talking with his girlfriend and Ray, he said something that I had to laugh at - something along the lines of everything taking longer for a person with a disability to do. I wasn't laughing at what was said because I know it's the truth, but at the recognition that slowly dawned on my fiance.

I had told Ian this many, many times before and he had a tendency to think I was just making excuses for not getting everything done in a day that I had planned to. But since it was said on TV, it must be true.

It can take me 10 or more minutes to make a sandwich, where it takes him about three. Cooking dinner is a 2-hour undertaking for me (and that's with something simple like pan fried chicken and scalloped potatos from a box). Putting one load of clothes in the washer can take me 30 minutes. And that's just the big stuff. Even small things like writing a check take me longer than most to do.

My suggestion, if you have this problem, is to prioritize and then make a to-do list. Put the things that you absolutely need to get done that day at the top of the list and the things that could possibly wait until another day at the bottom. For example, if you need to clean the living room but also want to finish that book, put cleaning at the top of your list. The book can wait until later in the day or tomorrow even.

How do you help keep yourself organized and on track?

Posted by Megan Drummond

After two months of trying, I finally fot approved for Section 8 renter's assistance. I was given two months to find apartment or a house. That was in the middle of April. My two-month timeline is up on June 14th,

and I've had absolutely no luck. After that, I can get a two month extension.

My first apartment wasn't exactly accessible on the inside, but there was a very nice ramp built onto the outside of the building that allowed me to get in and out easily. And I found ways to work with the inside and make it as accessible as I could. I've had no such luck this time around. I haven't found one with a ramp - only steps - at the front entrance. I've looked at places where I can't even get into the rooms. I can't get landlords to call me back (once they hear my voice, they think I'm either drunk or a little kid playing on the phone). And when I do get a call back, I can't find a landlord who is willing to work with Section 8.

And as if all that isn't pressure enough, my wedding is in 45 days and I really don't want to get married and be living with my husband in my old bedroom at my parents' house.

I thought that looking for a house was a difficult task. I was wrong.

At least you know that when you buy a house, it's yours. You own it and can make whatever changes or adjustments that you need to in order to make it accessible.

How difficult was it for you to find your apartment or house? Leave me a comment and let me know.

Posted by Megan Drummond

i spent a large portion of the day Thursday laying on a very uncomfortable bed in the emergency room of my local hospital. I didn't want to, but with all the problems I've had over the years, my motto is "Better safe than sorry."

It started in the morning when my PCA Nicole noticed that the toes on my right foot were a very unusual color. I've always had poor circulation in my lower extremities and they always have a light purplish tinge, so I paid no attention. But Nicole was concerned enough to call my fiance in from the other room. When he became concerned over the unusual color, we decided to go to the ER.

I checked in, waited 20 minutes for a room, then waited another hour for the doctor. When he showed up, he ordered the standard tests for a blood clot and came back an hour after he got the results. During the initial exam and when he gave me the results of my tests, the doctor seemed more concerned with preventing contractures in my hand (I wear a splint for that reason) than with my leg.

And that brings me to my first piece of advice. Always follow up with your regular physician. Make this a priority when you leave the emergency room. Your regular doctor knows your history better and will be better equipped to diagnose any problems.

And bring a good book or your iPod. You can never predict how long you'll be there (my record is 9 1/2 hous) and you don't want to be bored out of your mind.

Posted by Megan Drummond

When I say I thought I'd experienced everything the public has to offer, I mean it. I've had people on the sidewalk come up and ask whoever I'm with, "What's wrong with her?" I've had a man in a restaurant dump the remains of his lunch on my lap because he wasn't paying attention to where he was going and them blame me. And my absolute favorite - I've had a woman drive my chair a few feet because I was blocking her view of the cards.

But I had an experience while out shopping the other day that just left me floored and reminded me that some people are still nice to strangers. A woman in the grocery aisle actually asked me if she could help me get anything down from the shelves that were out of my reach. I thanked her, pointed out what I needed and thanked her again when she handed it to me.

I was very pleasantly surprised. Usually, people just reach around me to get what they want off the shelf or sigh impatiently and tell me to hurry up. Some have even gone as far to call an assistant manager and complain that I should have someone with me to help shop because I take too long by myself. When I do ask someone shopping in the same aisle to help me get something, they act like it's the end of the world and how dare I interrupt them.

If you are out by yourself and do need help opening a door or getting something off a high shelf, don't be afraid to ask. Some people may very grudgingly help you, but others will be more than glad to help.

And the rest of society should take a lesson from the latter.

Posted by Megan Drummond

When my fiancé started culinary school in January, I didn’t leave the house for a month and a half except on weekends when he was home. I dreaded using public transportation that much. I had only used it once before and had a horrible experience.

Here’s the story: When I was working, my mother would pick me up from work in her van. She was going to be out of town all one day so I made arrangements for a ride with the bus. I got off work at 3:00, so the designated pickup time was 3:15. I was just finishing up the project that I was working on when I happened to look up from my computer in time to see the bus pull into the parking lot, never slow down, turn around and leave. It was 2:45.

I thought things would be better this time around. And they were for the first few times I took the bus. Then last week, the dispatcher scheduled me and told me they’d pick me up at one time and told the bus driver an hour later, which caused me to completely miss my appointment. A few days later, they “forgot” to pick me up and then wanted to drop me off at the wrong address, causing me to be 15 minutes late.

Starting today, I am recording all my conversations with them so that I have proof of what they tell me.

If you have trouble like this with your bus company, try doing the same. Also, be sure to tell the driver how to tie down your chair or you may end up with broken pieces. I’ve had that happen, too.

Just use a lot of common sense and you’ll be fine.

Happy riding!

Posted by Megan Drummond

If the people on the other end of the phone had to put up with as much as we do on a daily basis, they would not take such pleasure in making it next to impossible for us to get the equipment that we need.

Who knows better than us or our doctors and therapists what equipment would benefit us physically or just make our lives a little easier? Insurance companies do ask for a statement of medical need from a physician, and then they ignore it and turn down the equipment anyway.

I couldn’t get the exercise bike I needed last year, I can’t get an iBOT this year, one of my friends needed a standing frame to strengthen her leg muscles and was turned down. There’s really no helpful advice I can give except to keep trying. Keep after the insurance company to get an answer and keep fighting if you are turned down for something that has been prescribed and that you feel you need.

As of this writing, there is still no word on an iBOT. The chair has been approved by my insurance company but the insurance company in New Jersey, where the iBOT is made, won’t tell Independence Technologies how much they will actually pay in reimbursement and Independence Technologies can’t order the chair until they know if they’ll be paid.

Dreams of the iBOT have gone out the window. Since no one is cooperating, I won’t get one unless I miraculously win the lottery and can buy it outright with no insurance companies to hinder me. So now I’m just concentrating on getting a wheelchair that works and hasn’t had to have every part on it replaced.

Posted by Megan Drummond

I’ve never visited Disability Travel or any similar website to plan an accessible vacation. I just go and hope for the best. And it usually works out just fine. If this is how you take trips or if it turns out that the hotel you choose just isn’t accessible as you thought, there are some things you can do to make your stay easier and more comfortable.

When choosing a hotel, do your research. Check out the hotel’s website to read about the rooms and amenities that are offered. Then check out Hotels.com and similar sites that offer reviews from travelers who have actually stayed there. Unfortunately, most of these sites do not offer reviews from disabled patrons. You can, however, read about the cleanliness of the rooms and the friendliness/helpfulness of the staff. After you’ve researched your hotel, call them rather than book your room via the Internet. This will help ensure that the staff is aware of your situation and that you get an accessible room.

Make sure you are traveling with a PCA, friend or family member who is capable of assisting you in somewhat awkward accommodations. Oftentimes, an accessible hotel room simply means that there is a wider entry way and bars in the shower. In all my travels, I have only been in two hotel rooms with truly accessible bathrooms – The Sands in Atlantic City, NJ and Comfort Inn in Terre Haute, IN.

The most important thing to remember, though, is not to get stressed out. If you’re stressed, it will have an effect on everything. Your mood and demeanor will change, thereby changing your attendant’s mood, etc. And this can make your entire trip much less than it could be, even with less than accessible accommodations.

Posted by Megan Drummond

Wii-hab is the new trend in physical and occupational therapy in rehabilitation hospitals l across the country. The unique design of the Wii controller and its motion sensors make it a great tool to help patients relearn motor skills and enhance hand-eye coordination. One benefit of Wii therapy is that, because the sports games require the user to mimic the actual motions of games such as baseball and tennis, playing these games for an hour a day can provide a great cardio workout and can help build endurance.

While none of these hypotheses has been scientifically proven, ask any rehab professional or Wii player and they will tell you that they have seen the benefits of these games.

I would like to see some of these benefits from my Wii. I bought my system in January 2007 and have loved it since. For the first few weeks, I simply marveled at the fact that there was a video game system that could be played with one hand. I started reading about the therapeutic benefits of Wii and thought it was a great way to exercise. And it was. For an hour a day for about a week, I played sports. When I started to get more games, any benefits I could have gotten were gone.

I still have every intention of playing sports and getting a good cardio workout every time I turn on my Wii. Then I get distracted by Excite Truck or Super Monkey Ball, games that require nothing but a steady hand and a flexible wrist, and all my good intentions are gone again.

If you have been lucky enough to get your hands on a Wii, remember this: Not only is it great for playing games, it also has some wonderful therapeutic uses.

Posted by Megan Drummond

The vast majority of the stores, shops and restaurants in my town of 8,500 aren't accessible in any way, and don't seem to care if this causes them to lose business. The majority of establishments in most small towns are this way and don't seem to be in any hurry to meet the accessibility requirements of the Americans with Disabilities Act.

I didn't ever pay much attention to the inaccessibility in my town or give it much thought until about seven mnths ago. I could just send my mother, my boyfriend or my PCA into that particular store to get me what I needed.

Then I got engaged. Suddenly, I found myself facing dress shops, florists, stationery atores and photography studios that I couldn't get in to. And as any bride or bride-to-be out there can tell you, these are parts of the wedding plannning process that you definitely want to be involved in. I've managed to get around all these obstacles and am now trying to figure out a way to get around the biggest of all: The courthouse where I need to get my marriage license is totally inaccessible.

i am currently drafting a letter to send to the new mayor of this town to propose that he and other city officials to spend a day, or even a few hours, in a wheelchair trying to navigate the streets of this city and experience firsthand the broken sidewalks, the 6" "curb cuts" and and sidewalks so narrow that you have to drive your chair down the street. My feeling is that if they experience it for themselves, they might start to change things.

How accessible or inaccessible is your town and what are you trying to do about it?

Posted by Megan Drummond

The Canadian Transportation Agency will soon be faced with a nearly impossible task: Deciding just which airline passengers are disabled enough to qualify for the new "One Person, One Fare" law.

This new policy states that any disabled person can get a ticket for their attendant for free. But only if the person needs assistance while in flight. If the person needs assistance on the ground before takeoff or after landing. they are not "disabled enough" to qualify for the free attendant fare.

This makes no sense to me. How do you know if you will need assistance during the flight or not? There are unforseen circumstances in every situation. they could range from something as simple as a seatbelt becoming stuck to something such as your ostomy bag beginning to leak.

And what would happen in the rare occurence of a crash? You may not otherwise need help but you would in that instance.

I think that it is unrealistic for the CTA to presume to know who is disabled enough to require assistance during the flight. All the times I have flown, I have needed help boarding and deplaning, but required no assistance during the flightThis may change, though, the next time I fly. Would I not be offered "One Person, One Fare" because I have never needed in-flight attendant care befre?

Who decides? And how?

Post a message in the forum and share your thoughts on this.

Posted by Megan Drummond

Miss Wheelchair America is a program of advocacy for women with disabilities. Each state that participates in the program selects the woman that they feel is the most accomplished and poised to represent their state in the national pageant.

The duties of a state Ms. Wheelchair include speaking about her chosen issue (or platform) and any other disability-related issues to schools, colleges, local government, civic organizations and clubs. The winner must also represent her state at the national pageant, held in July of each year.

The requirements to become a contestant are simple: be between the ages of 21 and 60 and use a wheelchair or scooter for 100% of you daily mobility. Marital status is not a consideration. The contestant must also pay the entrance fee, either on her own or with the help of sponsors.

The Ms. Wheelchair Pennsylvania pageant is looking for contestants to become Ms. Wheelchair 2007. The pageant is tentatively scheduled for the weekend of March 29th. If you are interested, please contact me as soon as possible and I will put you in touch with the people you need to talk to.

Take a look at the calendar to see a complete listing of all the state pageants and consider participating in or attending your state’s event.

Posted by Megan Drummond

Cooking dinner and cleaning the house aren’t anyone’s favorite things to do. Having a disability can make these chores just that much harder. Over the years, I’ve developed some tricks to make both chores easier. Most of these tips and tricks are outlined in my articles Cleaning the House and What’s for Dinner?

The most important thing to remember when it comes to cooking with a disability is to keep it simple. Don’t attempt to tackle a recipe that you feel is too complex for your abilities. Hamburger Helper and similar products, such as the everything-included dinner bakes, make wonderful, and wonderfully simple, meals.

If you want to make a dessert, try looking online. Allrecipes.com has a fantastic selection of simple and easy to make pudding pies and no-bake desserts.

Perseverance is the main thing to keep in mind when it comes to cooking or cleaning. The bathroom, kitchen, etc., may not sparkle the first time you clean it and it may seem to take hours to finish. But if you keep at it, it will take you no time at all and will look great.

Who cares if the hamburger burns the first time you try browning it or if the spaghetti sauce boils over? I know it can be disappointing and frustrating when things don’t turn out as planned but as they say, Rome wasn’t built in a day. Keep on trying and soon, you’ll be able to put together a meal your family will love.

Posted by Megan Drummond

Shortly after Christmas, I got a letter from a church where I’d applied for a secretarial position at the beginning of December. The letter thanked me for my resume, said my qualifications looked like a good fit and that the pastor (who I assume does the hiring) would contact me after the holidays. She looked forward to meeting me.

Needless to say, I was thrilled. For the first time in the eight years since I’d left my last job and after about 60 resumes (at least 14 in 2007 alone), I had gotten a response. I texted my fiancé at work to tell him that his advice to take so many mentions of disability off my resume (I ran a support group for teens with disabilitiesat my last job, organized disability awareness days in college, etc.) worked.

That was a month ago and I haven’t heard from them. I called to follow up on the letter and got the answering machine. I left a message and, a week later, haven’t heard anything.

The skeptic in me is inclined to believe that they heard my voice and immediately thought, “There’s no way that this girl can answer phones.” More than likely, what happened is that they found the perfect person for the job before they got to me. Or, when they said they’d get back to me after the holidays, they meant Martin Luther King Day and I’ll hear from them tomorrow.

How do you make your resume reflect who you are without going overboard on the disability mentions? How do you deal with not getting a job you had your heart set on? Stop by the forum and share with us.