Diagnosis and prognosis are very different concepts based on different criteria. Diagnosis refers to identifying the nature or cause of the condition. Prognosis refers to the future of the condition based on previous case histories. People very often get these terms confused and link them together as a predetermined outcome of their injury or their illness. In other words, the prognosis is the likelihood of the person’s future with their condition based on other cases. It is a subjective not an objective conclusion but remember there are no two humans exactly alike physically, mentally, with beliefs or inner strength and ability. So really, how much credibility does that really give a prognosis?
In my long career as a disability advocate I’ve seen hundreds of people come for help as victims and helplessness because some doctor told them that they would never be able to do this or that and their future would be pretty bleak. Negative prognosis is more dangerous than the diagnosis itself because it fosters an attitude of giving up and giving in.
Why do doctors continue to make these negative diagnosis? I think there are two main reasons. One is that they are trained to look at facts based on previous outcomes and not to give patients “false hope” (how I hate those two words). Another reason is they are medically and scientifically trained and are not invested in transitioning their patients into the world after the hospital or diagnosis. In summary, they do not know the almost unlimited options living with disability.
They rely on a rehabilitation facility to do that but the rehabilitation staff is bound by doctor’s orders and his prognosis. Our whole medical system is based on specialists who are all under the control of the doctors. But guess who has the control over the doctors? You and only you. That’s right, you have the last say, you decide your own prognosis. You empower yourself by digging out the options, learning what is possible. You are a unique human with your own brand of determination and courage. Only you know what you’re capable of. Don’t let the medical field take away your self-determination by telling you what you can’t do.
The life journey is not about the destination but the process of every day and how you live that process is totally up to you. If you or someone you know needs a peer support or options in technology or just a place you can see people who have beat the odds and are living life on their own terms take a look at the website www.swcil.org it could possibly change your life. There is also a blog where you can ask questions and find resources.
Super Easy Peach & Blueberry Cobbler
4 1/2 cups frozen sliced peaches
3 cups blueberries
1/2 cup water
1/2 cup sugar
1 tbls plus 1 teas cornstarch
1 tbls lemon juice
Butter for the baking dish
1 can tube biscuits pulled apart
Heavy cream for brushing biscuits
Vanilla ice cream if desired
Arrange a rack in the center of oven & preheat to 450 degrees
In sauce pan combine peaches, blueberries, water, sugar, cornstarch,
and lemon juice and bring to boil, lower heat and simmer for 5 minutes.
Transfer fruit mixture into buttered baking dish and arrange biscuits on top and brush with the heavy cream. Bake cobbler until biscuits are browned and fruit is bubbling (about 15 minutes). Let cool & eat with ice cream.
- Peaches help stop strokes, aids digestion and prevents constipation and good for dry coughs.
- Blueberries stabilize blood sugar, boosts memory, protects your heart, improves night vision and stomach aliments.
Not too long ago society’s expectations of a person with a disability and their potential was pretty limiting. Mobility equipment inched along with adaptive aids slowly advancing in design and function. Then in 1990 the Americans with Disabilities Act was enacted opening up the world for the disabled to get out and enjoy their community and country. Part of this important law refers to equal access to transportation and public and commercial facilities. The demand began to increase for equipment that would provide a way to integrate into everyday life of travel, grocery shopping, camping, football games and other activities previously very limited for people with disabilities. The medical equipment industry begin to see money in this new demand. As it always has been, profit is the real mother of invention. Money being the motivating factor led to more inventions, improvements and options of medical equipment than ever before. We began to see things like stair lifts, portable and permanent ramps, motorized lift chairs, mobility scooters, hand controls for vehicles and all kinds of computer technology as well as huge design improvements in power in manual chairs. These improvements in medical equipment have become so lucrative that new inventions develop constantly. I’ve included a small list of some of the most intriguing ones below.
- IBOT STAIR-CLIMBING WHEELCHAIR
DEKA Research designed this for rough terrains but it can also climb stairs up and down with it’s self-balancing technology and even “stand”.
- DYNA VOX EYE MAX
Dyna Vox EyeMax uses eye-tracking technology for computing, tv watching, reading and speak for people with limited mobility. It tracks users eye movements by blink or gazing.
Neil Harbisson invented EyeBorg because he can see only black and white. Strapped to the head EyeBorg can identify 360 hues and send audible tones through bone conduction.
- BRAILLE SMARTPHONE
Touchscreens are not user friendly for vision loss. This phone has a screen comprised of grid pins. When the user receives a message, the pins form shapes and characters using “Shape Memory Alloy”technology.
- KAPTEN PLUS NAVIGATION DEVICE
Traveling alone foe visual impairment is a challenge. This device has a ver small GPS locator into it. As the user walks down the street, it speaks the direction and location the user is going. It can also sore routes in it’s memory.
ORCAM recognizes text and products and speaks through bone-conduction earpiece.it can read newspapers, books, signs, labels on products even text or computer screen.
- SPEAKS FOR ITSELF RIGHT?
- IROBOT HOME ROBOTS
Some items designed for the general public also assist people with disabilities in cleaning their homes.
There are so many more inventions on the horizon. These technologies have opened a world not accessible to the disabled before. If you would like more information on these or other technologies check out the website under Assistive Technology at www.swcil.org.
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