The doctor’s role as an authority figure is very much deeply ingrained in the American culture. In addition, no one wants to be perceived as a difficult patient. It’s fine to follow your doctor’s orders if it is based on shared medical decision-making. However, when you’re in a room with a paper on the exam table crinkling under your bare bottom you may not feel so empowered. That being said, you cannot afford to be intimidated by your doctor and be a passive bystander. You need to keep focused on what is being ordered for tests and medications. Do not make rash decisions at that moment but rather go home and research it and look at other options if they are available. I would disregard those doctors who tell you everything on the Internet is incorrect. You must be careful when researching of course but there are very reliable nonprofit organizations that provide sound guidance like the Mayo Clinic and the Cleveland clinic. Dig for the facts and not someone’s recommendations because they had a similar medication or similar test. Ask a lot of questions, make sure you know the tests are justifiable and medications are not in conflict with what you are ready taking or the side effects that could be dangerous to your particular condition. We would not dream of buying a weed-eater let alone a car on someone’s recommendation without looking at facts and figures and comparisons first.
Be careful and be precise when you explain a symptom to your doctor. Many unnecessary x-rays, MRIs, and other procedures are commonly ordered because doctors do not want to be sued for not screening properly, for instance, if the patient has a heart attack or some other unknown known event after the appointment. Doctors are often paid a fee for these procedures and have a “better safe than sorry” justification. The same goes for referrals to specialists. They are invaluable in diagnosing a problem but need to be terminated when their expertise is no longer needed and a primary care physician can take over.
Make sure your communication is open with your doctor.
- Ask questions such as “what does that mean”? Most doctors just assume that you understand their medical terminology that they use every day. They are under incredible time pressure and if you do not bring a list of complaints to them you will probably get rushed out before you have all of your answers and concerns addressed.
- Don’t be afraid to tell your doctor that you’ve considered other hypotheses about your health based on your own observations.
- Avoid “on the way out the door” complaints. Those are things you suddenly remember like “oh and by the way I’m having pain in my back or trouble swallowing”. At that point the doctor can’t really do anything so they tell you to make another appointment or go to the emergency room. By then your 15 minute allotted appointment is up.
- Be honest when talking to your doctor about your out-of-pocket costs. Most people are shy about bringing up financial concerns even thinking they might get substandard care if they mention money is an object. But the fact is that in almost all cases physicians have good options available. They may know about free prescription drug samples or programs from the pharmaceutical companies that could pay for your medications.
Putting these suggestions in place may be difficult at first but it will empower you as a patient. After all it is your body and your life. Too many times miscommunication or lack of communication between patient and doctor ends up with serious consequences. There are no old-time general doctors anymore that know your family and have the time to sit down and have a conversation with you. The old practice of physicians using critical questioning to get a better knowledge of what’s really going on with the patient has been replaced by scheduling as many patients in 15 min. increments as possible. Never forget the medical field is a huge business and as such you are the customer. You are the profit and the loss on their financial sheet but that also gives you enormous power because without your insurance and money they would not exist as the huge corporation that they are. You are the customer, you are the product and you have a right to accept or decline medications, tests or procedures. If you have a doctor that is very uncomfortable with that you need to look around and find a doctor that became one for the right reason.
Universal design is the design of products and environments that is usable by all people without the need for adaptations. Some people use the term “aging in place”. Owning a home is a huge investment but so many reach that goal only to find later it’s not user-friendly as they age and their physical limitations prevent them from using most of the features in the home they originally loved. In addition the need to remodel usually comes at a time when people are on fixed incomes and cannot afford it. Other events such as accidents or illnesses can make it difficult to remodel as money is flowing out to the medical field while on a drastic time limit.
The answer, of course, is to be proactive in design when you buy your home or remodel your existing one. The best time is while you are still working and can afford it a little at a time.
Some areas to consider are –
- No step entry. No one needs to use stairs to get into a universal home or into the homes main rooms.
- One story living. Places to eat, use the bathroom and sleep are all located on one level, which is barrier free.
- Wide doorways that are 32 to 36 inches wide let wheelchairs pass through. They also make it easy to move big items in and out of the house.
- Wide hallways. Hallways should be 36 to 42 inches wide. That way, everyone and everything moves more easily from room to room.
- Open floor designs. Everyone feels less cramped. And people in wheelchairs have more space to turn as well as people using walkers.
- Some universal features that could make it safer as you age or incur a disability are-
- Floors and bathtubs with nonstick slip surfaces help everyone stay on their feet. They’re not just for people who are frail. The same goes for handrails on steps and grab bars in the bathrooms.
- Thresholds that are flush with the floor that could make it easy for a wheelchair to get through a doorway as well as walkers.
- Good lighting helps people with poor vision. And it helps everyone else see better too.
- Lever door handles and rocker light switches are great for people with poor hand strength. But others like them too. Try using these devices when your arms are full of packages. You’ll never go back to knobs or standard switches again.
As a society we are proactive in so many other areas like insurance, retirement savings, yearly wellness checks and we also need to be proactive in keeping our independence and freedom to stay comfortable in our own home by making these changes. Aging happens to all of us, it is inevitable, and by preparing for it we also prepare for any other physical changes that may come down the pike before retirement. Many people end up in nursing homes waiting on remodels to happen so they can go home. Don’t let this happen to you. There is much more you can provide that can make your house user-friendly to all ages and all people in your family.
For more information on Universal Design you can contact Southwest Center for Independent Living by visiting their website at www.swcil.org
Delilah doesn’t feel the need to impress anyone or prove herself.
She is not concerned with social image.
She is concerned with being happy which includes belly scratching and “Beggin Strips”cheese flavor.
She is built for speed but has couch potato syndrome.
She has a propensity for biting her nails and shaking all over when something is confusing or scary or needing to get attention for “Beggin Strips. She’s not into biting, she’s into loving and being loved. Her life is simple, easy and is lived in the moment.
Delilah shows me what life should be about. I wish for you all what Delilah has, happiness, ability to love and be loved, living each day looking for the good stuff and as many “Beggin Strips” you can hold.
Why is it that when most of society looks at people with disabilities or seniors they only see what is apparent right in front of them? Actually, if they consider looking beyond that to transferable skills the person carries within them it would blow them away. Just the fact that they have survived by pushing through obstacles mentally and physically all their lives creates a person who knows how to get things done. Thinking out-of-the-box to accomplish most things others take for granted is a unique talent. These groups are doers. They don’t have time to complain of headaches, aches and pains or limitations. They are the champions of “if there’s a will there’s a way”. I think transferable skills are so overlooked because they are so basic. Here is a list of just a few –
There are hundreds more. Ask yourself this question. If I were in a car accident tomorrow and became a paraplegic what transferable skills could I use to continue a quality-of-life? What are my three favorite accomplishments? What activities make me the happiest? Use these awareness tools to empower not only yourself but seniors and people with disabilities that cross your life experience. There is energy in empowerment and power in potential.
What’s in a name? Well, for one thing it’s how our language identifies things like people, places and objects. Words have the power to create pictures in our mind. Depending on our experiences, beliefs and concepts, we automatically pre-judge. For instance if you are told the word “horse” many would come up with a completely different picture of one. In addition, emotional response would also be varied based on your experiences and what you have been told about horses. Words even have the power to affect us physically. Think of sinking your teeth into a juicy sour lemon and you get the picture.
When using words to communicate we may intend one concept while the receiver is forming another. This phenomenon seems to happen a lot in politics wouldn’t you say? So, how do you say exactly what you mean? One way is to use correct descriptions and shy away from slang. We have all heard the jokes about the latest “politically correct” terms for various cultures, jobs, life events and so on. I admit they can get pretty absurd when taken to the extreme but there are reasons they exist nonetheless. Using descriptive words in a careless way can destroy not only a persons self image but whole cultures that are already struggling to hold their position of equality. The disability culture is a good example. In the past society saw them as weak, sick and helpless. Some still adhere to this misconception.
This false picture was, in most part, created from images that portrayed pity and limited expectations. The disability community constantly attempts to educate society on the destructive affects of negative language.
Listed below are typical terms that have a negative meaning because of their tendency to label a person as their disability. Listed under the negative language are examples of words that are degrading and produce erroneous images. The “words with dignity” under each group give more dignity and a much clearer concept of what you are communicating.Negative Meaning
Crippled man, blind woman, polio victim, epileptic, Cerebral palsied
Words With Dignity
Make reference to the person first, then the disability. If the disability is not the focus of the conservation don’t mention it. Crippled and victim should never be used to describe a person with a disability.
Words With Dignity
The term “handicapped” is derived from the image of a person standing on the corner with cap in hand begging for money. People with disabilities do not want charity. They want an equal access to their community.
Wheel chair bound or confined to a wheel chair
Words With Dignity
People are not tied or bound to their wheel chairs nor are they confined to them 24 hours a day. They are used for transportation, therefore, people are wheel chair users.
Invalid, victim, afflicted with
Words With Dignity
A person with a disability is not necessarily sick or unhealthy. They are often just disabled. The word invalid is actually saying the person is in – valid which I’m sure is not the intended concept you are trying to say.
As you say the words in the negative group observe the image your mind produces. Like it or not they create a reaction just as surely as that sour, juicy lemon. Everyone has the power to change society’s negative language and labels by refusing to use them. Change is difficult and you may wonder why bother? Because, if someone hadn’t bothered, the Webster definition for wife would be “ old lady” and we would all be professing our vows with “I take this dude to be my lawful wedded old man.” That conjures up a picture doesn’t it?
If you have made a commitment this year to improve your world try using more considerate language. It is a small personal change that has the power to impact the world in a giant way.
Ever notice how subtle change is sometimes? You know, like a new building appears where you were sure there was a field yesterday? That’s how I felt when I started researching this article about access to people with disabilities in our community. I found many things I had forgotten weren’t always there and now I see more and more access every day. Almost all the large department stores have electric carts. Even five years ago this was very rare. A few stores had one, now the average is four. Accessible bathrooms are being remodeled to include an accessible stall, lower sink and dispensers and larger turn around areas for wheel chairs. Automatic doors are becoming more common as are entrances with no steps. All of our city buses are equipped with lifts. If you don’t live close enough to a bus stop, and you qualify, Access Express will pick you up at your door. OATS provides vans with lifts outside the city limits. Everyone benefits, people with disabilities, people with baby strollers, and seniors with canes or walkers.
The community is finally realizing that the more they respond to the customers need, the more money they make. It has started a mind set in entrepreneurs to offer more and more convenience. For instance, pizza isn’t the only thing you can get delivered to your door. A growing number of grocers will take your order over the phone and deliver it to you. Many pharmacies are doing the same. There are even people who will holiday shop for you or run errands for a fee. Homes can be built already accessible now so it will be ready as you grow older when remodeling is usually too expensive on a fixed income.
There are approximately 54 million people with disabilities in the United States and now communities are watching this sleeping giant wake up and demand equality. Slowly but surely, it is being granted. The Americans With Disability Act is a great liberating piece of legislation but it sits silent until you give it a voice. Success has happened because of people’s perseverance and determination to set things right. Freedom is the responsibility of all people who enjoy it. We must be ever diligent, ever watchful. When you observe no access, grocery carts parked in a disabled parking space, electric carts broken or not even available, bathrooms inaccessible, entrance doors too heavy to open; speak up, write a letter, make your requests be known.
While shopping for Christmas, a sticker on one of the windows caught my attention. It said “Guide Dogs Welcome”. I had noticed a similar sign a few months ago while in Denver on vacation. I don’t know where these business owners even found the signs. Maybe it was before 1990 when ADA was passed, who knows? The law states all service animals are to be allowed in any business serving the public. There is no law stating they must be certified and no one can require the individual to disclose their disability in order to justify the service animal. They are only allowed to ask if the animal is an assistance or service animal. And the misconception that guide dogs are the only service animal certified as an assistance dog is erroneous. As more doors open for people with disabilities the duties of service animals constantly broaden to accommodate new freedom of independence.
Almost everyone is familiar with guide dogs for the blind. They have been around since post WWI when they were developed and trained in Germany for veterans who were blinded during the war. Now, they exist all over the world. They are easy to identify with their harness and handle. For the visually impaired they supply independence, freedom and companionship. Sixty years later we have advanced with training methods to assist many more disabilities. Most, however, are not familiar with the extensive variety of these highly trained and specialized dogs. Some people mistake them as pets and do not realize that years of training have gone into these valuable dogs. I have attempted to list the most common service dogs but training methods advance constantly and I am sure someday there will be a service dog for almost any disability.
With the success of the Seeing Eye programs, trainers began to explore other disabilities that could benefit from the dog’s amazing ability to help people. The next step involved developing a hearing dog. These dogs are trained to basically convert noise into touch. They respond to everyday sounds such as the telephone, the doorbell or even the owners name being called by rubbing, nose nudging or even tugging on its owner. In an emergency such as a fire alarm, the dog will respond by giving more agitated alerts, such as actually jumping on the owner. The hearing dog can also be taught sign language.
Service dogs assist physically disabled people by performing all sorts of assistance tasks such as opening doors, turning on lights, assisting in transferring by bracing, even pulling their owners wheel chairs up steep ramps. You can often recognize them by their backpacks full of useful items for their owners.
Seizure detecting dogs are the newest assistance dogs. These dogs are trained to recognize behaviors associated with an individual’s seizures. The dog can be trained to get help or stay with the person if needed. Alert capability is a natural occurrence where the dog “alerts” the owner that a seizure is about to occur. True alerting behavior is usually the result of the dog and human developing a very close bond. This alert capability enables an individual with seizures to locate a safe place before the seizure actually occurs.
Therapy dogs improve emotional and physical health simply by interacting with a person. Health care professionals have found that petting a dog can reduce stress and lower blood pressure and pulse rates in some individuals. There are many volunteer organizations throughout the country that help train volunteers to take their dogs to nursing homes, hospitals, mental health centers and prisons on therapy missions. These programs allow access to animals for a segment of the population that otherwise may not have access to animals.
There is even a class of service dogs called “combination dogs.” These dogs are trained to assist people with multiple disabilities that include visual impairment. In addition to work as wheelchair support dogs, combination dogs act as hearing dogs and guide dogs. They are trained to identify barriers to mobility like traffic, cracks in the sidewalk, overhanging branches and obstacles in the path of the owner. And, of course the guide training can also help the owner locate many items using the “find” command (find the door, find the elevator, find the comb).
I would like to share a few last words on some do’s and don’ts when you see someone with an assistance dog. While it’s perfectly fine to talk to the person about their dog, refrain from petting or talking directly to the dog. It will distract the dog from its work. The same holds true for feeding treats or attempting to play. Once the dogs are home their owners have built in play and cuddling time for them. Being an assistance dog is a job that these dogs love to do but keep in mind it is a structured training that has taken years to accomplish.
Living Will VS Will To Live
It is every person’s right to control his or her own body including the right to choose medical care, medications and the right to determine how one will be treated if one is incapable of voicing an opinion. Of course most people do not want to go on living as helpless victims of medical control after they lose the capacity to make decisions. This prospect fills us with dread and can be an unconscionable invasion of privacy. The “Living Will” appeared on the scene to calm that fear.
However, the primary danger of living wills lies in the fact that it is usually signed long before the person knows when he or she will be incapacitated or what the circumstances will be. Some people feel they would not want to live having to use a wheel chair or with a brain injury or loss of any of their five senses ect. But, technology has progressed by enormous bounds to assist with any disability. At the time of signing the “Living Will” most people aren’t even aware of how many ways technology can help them live more fully, therefore, not fully aware of their potential to a life of quality. “Living Wills’ attempt to predict the future so they are by nature broad and generalized.
Why is it important to be specific?
You might be treated by someone who thinks you cannot be saved when you could. There is great danger that a vague description of what you do not want could be misunderstood or distorted so as to deny you treatment that you do want. There are those in the medical profession as well as the courts, not to mention the HMO’s, that are so committed to the quality of life ethic that some may think patients with severe disabilities would prefer not to receive either life-saving measures or nutrition and hydration.
What are the options?
There are a couple actually. One is a Durable Power of Attorney for Health Care. This is a document you can delegate to a trusted friend or a relative to become your agent for any health care decisions you are unable to make including medications as well as treatment procedures. It is much more specific than a Living Will and has areas where you can put in writing what you DO want.
Another is Missouri’s “Will to Live” document. This document starts from the principle that the presumption should be for life. However, it does provide a space for “Special Conditions” selected by you where you can state when to cease treatment and how. It will guarantee that you will receive the food and water you need should you become incapacitated, while allowing you to decide and state what you might consider “extraordinary care”. Food and water are not medical treatment or machines but basic care necessities even if given by tubes, intravenously or other means.
Medications should be given to alleviate pain not to shorten life.
Is it the law?
Don’t assume the “Living Will” or “Health Care Directive” or “Will to Live” documents are required by law and must be on file with a doctor or hospital before any procedure. While it is a good idea to do so, it is certainly not required by law. This misconception probably comes from the Patients Self-Determination Act, a bill that was passed in Congress in 1991. It says that facilities receiving federal Medicaid or Medicare funds (and that means almost all hospitals) must give adult patients, at the time of admission, written information on the “advance directives” that are legally available. In practice this federal requirement can make people think they must have an “advance directive”. They may even feel pressured to sign a “living will” or “durable power of attorney” general form that could have the effect of stopping medical care and treatment – even medical care and treatment that could save their lives! Be ahead of the game and fill out your form of choice with the specific things you want or don’t want before the need arises.
- Be sure you understand the terms used in your health directive document. A Disability Advocate at SCIL will be happy to help you read through it and explain areas where you are confused.
- Make sure that your agent making those life and death decisions for you knows your intentions behind every choice. Introduce him or her to the advances of technology for people with disabilities so that they have a clear picture of what quality of life is possible. It is important that they have a broader knowledge of potential than the medical field generally exhibits.
- Educate your doctor if possible to the endless possibilities available for all disabilities.
It’s the Holiday season! This is dedicated to those organized early Christmas shoppers (gotta love them) and their quest to find the perfect gift. The big stress, besides money, is selecting that perfect gift for someone who seems to have everything. These are great ideas for those seniors or disabilities in your family. This year why not pick something useful as well as unusual? Assistive Technology offers an endless array of items to make life easier, especially for the person with a disability or senior on your list. You would be amazed at the effect a few adaptive aids have on a person’s personal freedom.
- Walking canes – folding & designer
- Key turner
- Zipper pull
- Button hook
- Sock/stocking aid
- Extra long shoe horn
- Portable book holder
- Jar openers
- Easy grip rocker knife
- Hand held shower sprayer
- Portable tub grab bar
- Bath seat
- Pill organizer
- Pill timer
- Easy grip garden tools
- Voice activated phones and tablets
- Universal TV remote with large buttons
- Multifunction heating/cooling pad
- Hand writing aids
- Card holder/card shuffler
- Lap desk
- Lumbar cushion
- Talking watch or large number watch
- Cordless TV amplifier
- One handed can opener
It’s the Christmas season. So many people feel stressed or overwhelmed. It’s not really meant to be. It’s a time of family, love, traditions and friends. Even if you don’t have much,and there has been times when I didn’t, what it’s about is free. A time to stop and remember Jesus and what he taught us. I don’t hear people saying they hate birthdays because of the celebration. I personally love that it makes us stop and hug each other and appreciate the spiritual gifts in us all.