Sunday, July 31, 2011
Healing Whole Now on Facebook
August marks the 2nd year anniversary of my starting the Healing Whole Blog. I've started a Facebook page This way I can link to articles that may be of interest and increase topics of conversation.
Saturday, July 30, 2011
Being an e-Patient: Social Networking for Health
UPDATED APRIL 2015
This week, I watched Dave deBronkart’s presentation on TED Meet e-Patient Dave and as a result read a great deal about how patients are using social networking to heal. This presentation, along with new research recently released by Patients Like Me, is forging a whole new path in health care that is being driven my patients. While I have been a major advocate for both patient empowerment and the usefulness of belonging to a support group, social networking provides a very useful tool for people living with chronic and/or life threatening conditions.
Patients like Dave aren’t the only ones fueling this movement. Tom Ferguson, MD, has written about the “empowered medical consumer since 1975. In fact, he was the section editor for health, medicine and self-care for “The Whole Earth Catalogue.” He was also an early advocate for the development of on-line health resources and the new field of Health “Informatics.”
With more and more patients moving away from “content” sites, and choosing social media sites, medical centers are taking note. On July 5, 1911 the Mayo Clinic launched a social network site for patients and caregivers. Within the first seven days, they had 1,000 enrollees. Not limited to Mayo Clinic patients, the site is free and is open to anyone, not just those who have been patients at Mayo Clinic. It includes content from various Mayo Clinic blogs, health and medical videos from Mayo's YouTube channel and links to news articles about Mayo Clinic research and treatment advances, along with a member discussion forum. Clearly the e-patient is here and it wont be long before other medical centers will begin offering programs similar to what Mayo Clinic and Patients Like Me are offering. In fact, if you want to know how your hospital is doing as far as social networking, check out Found in Cache: Social Media resources for health care professionals.
Some take home points about being an E-patient:
• Keep a personal health notebook (be it on-line or written) and make sure you have “your data.”
• Participating in an on-line community can help you identify a variety of resources and treatments, to say nothing of emotional support. Don’t limit yourself to content sites only. Social networks are playing a very important role and will most likely play an even bigger one in the coming years.
• By sharing your data, as described in the Patients Like Me article, you can help to better determine what treatments might work for you as well for those with similar conditions.
• Use the same cautionary measures you would use on any social networking site (Facebook, Blog, Twitter etc.): Watch out for scammers; limit how much personal information that you share; be clear about what you want from the group.
• Share what you are learning with your medical provider. Many providers will welcome what you are learning, as they don't have the time to follow everything that happens on line.
Resources to check out:
• Health Central
• Shared Health Data: Design, Deliver, Better health with Your Own Information
• Patients Like Me: Includes 500+ conditions
• Society for Participatory Medicine The Society for Participatory Medicine is a 501(c)3 public charity devoted to promoting the concept of participatory medicine by and among patients, caregivers and their medical teams and to promote clinical transparency among patients and their physicians through the exchange of information, via conferences, as well through the distribution of correspondence and other written materials.
• e-Patients.Net Blog of the Society for Participatory Medicine
• Association of Cancer online Resources
• e-Patient Dave: A Voice of Patient Engagement
• Other on-line resources
This week, I watched Dave deBronkart’s presentation on TED Meet e-Patient Dave and as a result read a great deal about how patients are using social networking to heal. This presentation, along with new research recently released by Patients Like Me, is forging a whole new path in health care that is being driven my patients. While I have been a major advocate for both patient empowerment and the usefulness of belonging to a support group, social networking provides a very useful tool for people living with chronic and/or life threatening conditions.
Patients like Dave aren’t the only ones fueling this movement. Tom Ferguson, MD, has written about the “empowered medical consumer since 1975. In fact, he was the section editor for health, medicine and self-care for “The Whole Earth Catalogue.” He was also an early advocate for the development of on-line health resources and the new field of Health “Informatics.”
With more and more patients moving away from “content” sites, and choosing social media sites, medical centers are taking note. On July 5, 1911 the Mayo Clinic launched a social network site for patients and caregivers. Within the first seven days, they had 1,000 enrollees. Not limited to Mayo Clinic patients, the site is free and is open to anyone, not just those who have been patients at Mayo Clinic. It includes content from various Mayo Clinic blogs, health and medical videos from Mayo's YouTube channel and links to news articles about Mayo Clinic research and treatment advances, along with a member discussion forum. Clearly the e-patient is here and it wont be long before other medical centers will begin offering programs similar to what Mayo Clinic and Patients Like Me are offering. In fact, if you want to know how your hospital is doing as far as social networking, check out Found in Cache: Social Media resources for health care professionals.
Some take home points about being an E-patient:
• Keep a personal health notebook (be it on-line or written) and make sure you have “your data.”
• Participating in an on-line community can help you identify a variety of resources and treatments, to say nothing of emotional support. Don’t limit yourself to content sites only. Social networks are playing a very important role and will most likely play an even bigger one in the coming years.
• By sharing your data, as described in the Patients Like Me article, you can help to better determine what treatments might work for you as well for those with similar conditions.
• Use the same cautionary measures you would use on any social networking site (Facebook, Blog, Twitter etc.): Watch out for scammers; limit how much personal information that you share; be clear about what you want from the group.
• Share what you are learning with your medical provider. Many providers will welcome what you are learning, as they don't have the time to follow everything that happens on line.
Resources to check out:
• Health Central
• Shared Health Data: Design, Deliver, Better health with Your Own Information
• Patients Like Me: Includes 500+ conditions
• Society for Participatory Medicine The Society for Participatory Medicine is a 501(c)3 public charity devoted to promoting the concept of participatory medicine by and among patients, caregivers and their medical teams and to promote clinical transparency among patients and their physicians through the exchange of information, via conferences, as well through the distribution of correspondence and other written materials.
• e-Patients.Net Blog of the Society for Participatory Medicine
• Association of Cancer online Resources
• e-Patient Dave: A Voice of Patient Engagement
• Other on-line resources
Wednesday, July 27, 2011
Take a Break: Create Temporary Tattoos and Body Art
One of the favorite activities of summer camp was making temporary tattoos on one another. While we would buy henna and stencils, I was always on the look out for cheap body paints (left over from Halloween). Sometimes I’ll find them at the discount stores, like Dollar Stores. Also be on the look out for cosmetic grade glitter and jewels.
Since my family are major soccer fans, we watch a lot of European events and the face painting is amazing. From the look of it, they use a lot of stencils and face painting stamps (usually made of rubber with a foam backing). While you can use stencils you may already have-they should be very flexible- you can also download free ones from the following sites:
• Free face painting stencils
• Free Stencils from All-About-Stencils
Keep in mind, whether it’s for face painting or a tattoo, just because something is labeled non toxic doesn’t mean that it belongs on your skin. Some things you might try:
• Mix food coloring with body lotion-I used the Wilton food coloring dye and a little goes a long way. Makes very rich color. Apply with a cue tip. Comes off with soap and water. You can also just use the dye by itself.
• Liquid eyeliner comes in a variety of shades and makes very interesting body art.
• Eye and lipstick pencils are good ways to outline design. Fill in with various types of make up, including lipstick and eye shadow.
• Some food stains, such as beets and blueberries.
There re are such things as sterile surgical skin marking pens, which can be ordered on-line as well as semi permanent tattoo pens. There is even tattoo paper you can use in your printer.
How to Make a Temporary Tattoo using Eye Liner
Since my family are major soccer fans, we watch a lot of European events and the face painting is amazing. From the look of it, they use a lot of stencils and face painting stamps (usually made of rubber with a foam backing). While you can use stencils you may already have-they should be very flexible- you can also download free ones from the following sites:
• Free face painting stencils
• Free Stencils from All-About-Stencils
Keep in mind, whether it’s for face painting or a tattoo, just because something is labeled non toxic doesn’t mean that it belongs on your skin. Some things you might try:
• Mix food coloring with body lotion-I used the Wilton food coloring dye and a little goes a long way. Makes very rich color. Apply with a cue tip. Comes off with soap and water. You can also just use the dye by itself.
• Liquid eyeliner comes in a variety of shades and makes very interesting body art.
• Eye and lipstick pencils are good ways to outline design. Fill in with various types of make up, including lipstick and eye shadow.
• Some food stains, such as beets and blueberries.
There re are such things as sterile surgical skin marking pens, which can be ordered on-line as well as semi permanent tattoo pens. There is even tattoo paper you can use in your printer.
How to Make a Temporary Tattoo using Eye Liner
Saturday, July 23, 2011
Medical Jargon Translator
Several years ago, several friends and I went to visit a mutual friend who was very ill and heavily sedated. I had stepped out of the tiny room, to give some space for the other visitors, but went dashing back when one of the them was trying to sit the patient up and get her to drink water. My first reaction was to say “didn’t you see the sign on the door?” but I stopped myself. She very well could have, but she would have no way of knowing that the NPO sign meant “nothing by mouth.”
So to help you understand what a doctor or nurse is telling your, or if you want to just sound like a medical professional, try the following links:
MedTerms Medical Dictionary A- z List
Medical abbreviations of general interest
Medical Dictionary: This site also has a medical vocabulary tutorial.
Remember that there is no shame in not understanding what something means.
So to help you understand what a doctor or nurse is telling your, or if you want to just sound like a medical professional, try the following links:
MedTerms Medical Dictionary A- z List
Medical abbreviations of general interest
Medical Dictionary: This site also has a medical vocabulary tutorial.
Remember that there is no shame in not understanding what something means.
Wednesday, July 20, 2011
Take a Break: Stay Cool with a No Rush Day
With a heat wave sweeping most of the country, it’s time for a “No Rush Day.”
I grew up in Baltimore, MD, where temps were easily 90 or more most days in the summer, plus lots of humidity. Besides swimming, my favorite way to beat the heat was to lie on a lounge chair in the shade and read. I’d eat M & M’s when they were available, which left my hands stained with red dye number 2 or something probably just as nasty. However, the combination of sounds (cicada and the occasionally bird), smells and heat would lull me into a bit of a stupor that was quite pleasant.
The adults, who were not at work, would do the majority of the shopping and chores in the morning, leaving the afternoon for naps, reading in the shade or in front of a fan, or catching up on more sedentary tasks like paying bills. The heat of the day was spent out of the sun, with curtains drawn to keep the sun from shinning in the house.
In the cool of the evening, the neighbors were out on the porches and kids ruled the street until the streetlights came on. One of our neighbors rigged it up so they could watch TV on their porch. Once it was dark, we’d lie on our backs stargazing or we’d have a special game of “kick the can.”
I’ve rarely lived with an air conditioner in my home, even in Baltimore. In Vermont, the weather, in my view, has never been hot enough to merit even a consideration of one. My kids would disagree. There is something so nice about just not doing too much as a way to stay cool.
My idea of a perfect “no rush day,” is head to the beach, lake or pool where there is hopefully, a good breeze and cold water to jump in and out of. If that’s not an option, consider the following:
Make Ices and/or Popsicles: My Mom would make lemonade, pour it into a pan and stick it in the freezer, for us to enjoy in the evening. We would sneak in during the day and take a fork and “shave it.” We had never heard of granatas, but we knew that we liked putting our head in the freezer, and loved the pieces of shaved ice that resulted from the “raking.”
There are all sorts of inexpensive Popsicle molds on the market, including some you can pick up in the Dollar Store. Pour juice, tea, coffee or whatever flavor suits you and freeze. Ice cube trays work, as do the small paper bathroom cups.
For recipes and other idea check out 50 Amazing Homemade Popsicle Recipes and Ideas.
Drink Cucumber Water: Just cut up a cucumber and place in a large pitcher. Add water and ice. Very refreshing. You can also add lemon.
Skip the stove: Eat small meals that don’t involve cooking-salads, watermelon, and sandwiches or go out for a meal. Spicy foods are very popular in hot climates. Many swear that eating hot cools them down. Try a spicy salsa and chips and see how it works for you.
Use a fan to cool down: Even air condition after a while can feel hot. Adding a fan, to circulate the air, will make you feel cooler. Remember to turn it off if you aren’t in the room.
Spray yourself: Keep a spray bottle of water in the refrigerator. When you are particularly hot, say just coming in from outside, spray your face.
Catch a Matinee: In the heat of the day, chillin’ at the movies is a nice way to stay cool.
Cool your pulse points: Running your wrists under cold water, sticking your feet in the kiddies pool; and wrapping one of those Australian cooling ties around your neck are great ways to cool off.
Lie in a hammock and read a cool book: This maybe the time to read “Into Thin Air,” about the Mt. Everest expedition. “The Long Winter” by Laura Ingalls Wilder is a good read aloud with kids. If you are into snow sports, catch up on your ski magazines. Check out Cold Cases: Icy Books Offer Relief from the Heat.
Think cold: There are lots of movies out there with winter themes that can provide some chilly thoughts.
I grew up in Baltimore, MD, where temps were easily 90 or more most days in the summer, plus lots of humidity. Besides swimming, my favorite way to beat the heat was to lie on a lounge chair in the shade and read. I’d eat M & M’s when they were available, which left my hands stained with red dye number 2 or something probably just as nasty. However, the combination of sounds (cicada and the occasionally bird), smells and heat would lull me into a bit of a stupor that was quite pleasant.
The adults, who were not at work, would do the majority of the shopping and chores in the morning, leaving the afternoon for naps, reading in the shade or in front of a fan, or catching up on more sedentary tasks like paying bills. The heat of the day was spent out of the sun, with curtains drawn to keep the sun from shinning in the house.
In the cool of the evening, the neighbors were out on the porches and kids ruled the street until the streetlights came on. One of our neighbors rigged it up so they could watch TV on their porch. Once it was dark, we’d lie on our backs stargazing or we’d have a special game of “kick the can.”
I’ve rarely lived with an air conditioner in my home, even in Baltimore. In Vermont, the weather, in my view, has never been hot enough to merit even a consideration of one. My kids would disagree. There is something so nice about just not doing too much as a way to stay cool.
My idea of a perfect “no rush day,” is head to the beach, lake or pool where there is hopefully, a good breeze and cold water to jump in and out of. If that’s not an option, consider the following:
Make Ices and/or Popsicles: My Mom would make lemonade, pour it into a pan and stick it in the freezer, for us to enjoy in the evening. We would sneak in during the day and take a fork and “shave it.” We had never heard of granatas, but we knew that we liked putting our head in the freezer, and loved the pieces of shaved ice that resulted from the “raking.”
There are all sorts of inexpensive Popsicle molds on the market, including some you can pick up in the Dollar Store. Pour juice, tea, coffee or whatever flavor suits you and freeze. Ice cube trays work, as do the small paper bathroom cups.
For recipes and other idea check out 50 Amazing Homemade Popsicle Recipes and Ideas.
Drink Cucumber Water: Just cut up a cucumber and place in a large pitcher. Add water and ice. Very refreshing. You can also add lemon.
Skip the stove: Eat small meals that don’t involve cooking-salads, watermelon, and sandwiches or go out for a meal. Spicy foods are very popular in hot climates. Many swear that eating hot cools them down. Try a spicy salsa and chips and see how it works for you.
Use a fan to cool down: Even air condition after a while can feel hot. Adding a fan, to circulate the air, will make you feel cooler. Remember to turn it off if you aren’t in the room.
Spray yourself: Keep a spray bottle of water in the refrigerator. When you are particularly hot, say just coming in from outside, spray your face.
Catch a Matinee: In the heat of the day, chillin’ at the movies is a nice way to stay cool.
Cool your pulse points: Running your wrists under cold water, sticking your feet in the kiddies pool; and wrapping one of those Australian cooling ties around your neck are great ways to cool off.
Lie in a hammock and read a cool book: This maybe the time to read “Into Thin Air,” about the Mt. Everest expedition. “The Long Winter” by Laura Ingalls Wilder is a good read aloud with kids. If you are into snow sports, catch up on your ski magazines. Check out Cold Cases: Icy Books Offer Relief from the Heat.
Think cold: There are lots of movies out there with winter themes that can provide some chilly thoughts.
Saturday, July 16, 2011
How to Respond when you learn that someone is ill or injured
Updated September 2016
At a party in July 2011, a group of us were talking about gift
cards and how we used them. I was saying about how helpful they were when
someone was sick or injured. One of the women said, “can you put this in
writing and e-mail it around? This is something we all experience at some time
or another.” So below is my response to that request that I continue to update. Please note that if you are the person responsible for someone who is injured/ill, there is a special post for such situations at
Gift Cards: If
someone has been newly diagnosed with a very serious illness or is injured,
this can be a difficult time for the person and those closest to them. Whether
they are a close friend, a work colleague,
a friend’s parent or sibling, or even a neighbor, sending a card with a
gift card enclosed is very helpful. You don’t have to write an elaborate note. Just
saying “thinking of you” with the gift card speaks volumes. As one person at
the party pointed out, “cash can just
get spent so quickly, that it’s sometimes better to give a gift card for
something you know they’re going to need.”
Types of Gift Cards to Enclose:
• Gas: Traveling back and forth for hospital visits,
doctor’s appointments etc. can be very costly.
• Local Pharmacy: Most likely medications and other
items will be needed.
• Food Store: People do have different tastes, so giving
them a card for their local grocery store lets them make the choice. Besides,
many stores have “to go” departments.
• Restaurants: Select ones that the person likes, they can
access easily and have a “to go” menu.
• Master/Visa Cards: You can purchase these type of cards
for selected amounts.
Please be advised that gift card fraud is on the rise so be sure to purchase them from a reputable dealer. For other safety tips, go to Gift Cards Safety.
Please be advised that gift card fraud is on the rise so be sure to purchase them from a reputable dealer. For other safety tips, go to Gift Cards Safety.
Helping out at Home:
There are many things you can do to help out at home. Saying “call me if you
need me” isn’t sufficient. People can be very overwhelmed so provide specifics
of what you can do and when. There are a variety of these types of tasks that
can be done, such as
- mow the lawn, tend the garden, stack wood and other yard
work and outdoor chores
- plow the drive and walk after a snow
- clean the house
- household repairs
- take out garbage, recycling
- childcare/elder care
- transportation-driving kids to school, hospital etc.
- run errands
- pick up mail and the newspaper
- laundry
- keep an eye on the house
Keep in mind there are cleaning services and a gift
certificate might be appropriate.
When it’s a work
colleague: If this is someone you work with, in addition to the various
suggestions in this post, consider donating vacation and leave time to help
offset the time they are missing at work.
Unique Situations:
Certain situations have unique requests, such as donating blood or signing up
as a bone marrow donor. You may not be in a position to donate, but you can
help make donations possible, by helping to organize blood and donor drives,
providing transportation to those who need rides and/or making food for the
events.
Finding Out How They
are Doing: Then there is the question of stopping by, calling or e-mailing
to find out how the person is doing. There are no rules on this score, but
everyone seems to have an opinion about it. Some people want to be left alone,
and for others, they gain support from each person that calls or stops by. What
you may think you would want in a particular situation may not be right for
them. Use your best judgment. You can try contacting people closer to the
situation than you are and ask if they are taking phone calls or want visitors.
Organize a
Response: One of the most helpful things a community can do in these
situations is organize their response. This can now be done for free and quite
simply by creating a Lotsa Helping Hands website. With the approval of the
family and/or person injured or ill, a site can be established very quickly, ?” Lotsa Helping Hands is a private, web-based caregiving
coordination service that allows family, friends, neighbors, and colleagues to
create a community to assist a family caregiver with the daily tasks that
become a challenge during times of medical crisis, caregiver exhaustion, or
when caring for an elderly parent. Each community includes an intuitive group
calendar for scheduling tasks such as meals delivery and rides, a platform for
securely sharing vital medical, financial, and legal information with
designated family members, and customizable sections for posting photos, well wishes,
blogs, journals, and messages.
For the person who is injured/ill: Check out Unique Gifts for Hospitalized Patients.
Learn more ways to help: If you are a good friend or family member, learn more about what the person(s) directly responsible for the person who is ill/injured needs to do- WhenYou’re Responsible for Someone Who has been Injured or Diagnosed and don't ignore the financial strain brought about by the event-In Lieu of Flowers: Help with Finances Please!
Be realistic in your expectations: This is an extremely stressful time, so don't expect thank you notes, cards etc.
Be realistic in your expectations: This is an extremely stressful time, so don't expect thank you notes, cards etc.
Wednesday, July 13, 2011
Take a Break: Make Bubbles
My good friend’s birthday was this past weekend and I decided bubbles were in order. However, I didn’t have any wands or bubble mixture, or the time to get either. However, I remembered my mother making us a bubble mixture out of dish washing liquid (Joy, Dawn) and water. She didn’t add glycerin or white corn syrup, but the ratio always seemed to be a lot of water to a little bit of the washing liquid.
I should mention that years ago, at a music festival, I saw I Tom Noddy of Bubble Magic fame make a square bubble. I was hooked. I spent quite a bit of time working at duplicating his tricks, but gave it up since it involved cigarette smoke. Fortunately, Noddy is still at it but has figured out a way to use a tiny fog machine to give the same effect.
But back to Saturday’s bubble experiments. It was time for a bit of R & D. I took a plastic lid and squirted a little dish detergent (do not use dishwasher liquid as that is designed to decrease bubbles) and a lot of water. The ratio is usually around 1 part liquid to 15 parts water, but I didn’t measure.
All I needed was the wand. I found the coolest one to make from two sheets of paper at the Bubble Town website. It’s basically making a tube-looks like a mini horn of plenty, which I tapped off with a sliver of duct tape. Most people would use regular tape, but I have more duct tape in my office than the other stuff. Well, if you must know, I make a lot of stuff out of duct tape.
I dipped my “wand” into the mixture and blew the biggest bubble I’ve ever made. The downside of the paper wand is that you do have to let it dry. However, try other items you might have in the kitchen, like a funnel, an empty juice can or yogurt container cut into rings (make sure the edge is smooth), cookie cutter, etc.
The Bubble Town website mentioned that if you let the bubble mixture sit, it gets better over time. I’ve been trying it at various points for the last forty eight hours and I discovered two things, you can’t blow bubbles and be angry or ticked off about anything-it’ll make you laugh, and the longer the mixture sits the better it gets. I finally washed my lid on Monday, having made the biggest and best bubble of all. My number one fan, our dog, loved it and of course needed to “nose it.” You can imagine what followed.
You can add food coloring to the solution and make colored bubbles. The downside is that it will leave a stain when it pops. However, you could lay down a piece of paper, blow colored bubbles, and end up with a cool art project.
So create your own bubble magic today using what you have around the house.
Homemade Bubble Solutions: Lots of different recipes to try.
Antigravity Bubbles (video)
Long Lasting Bubbles: This looks like a very cool project, but I haven’t tried it yet.
Bubble wands out of Pipe Cleaners
Bubble Magic
I should mention that years ago, at a music festival, I saw I Tom Noddy of Bubble Magic fame make a square bubble. I was hooked. I spent quite a bit of time working at duplicating his tricks, but gave it up since it involved cigarette smoke. Fortunately, Noddy is still at it but has figured out a way to use a tiny fog machine to give the same effect.
But back to Saturday’s bubble experiments. It was time for a bit of R & D. I took a plastic lid and squirted a little dish detergent (do not use dishwasher liquid as that is designed to decrease bubbles) and a lot of water. The ratio is usually around 1 part liquid to 15 parts water, but I didn’t measure.
All I needed was the wand. I found the coolest one to make from two sheets of paper at the Bubble Town website. It’s basically making a tube-looks like a mini horn of plenty, which I tapped off with a sliver of duct tape. Most people would use regular tape, but I have more duct tape in my office than the other stuff. Well, if you must know, I make a lot of stuff out of duct tape.
I dipped my “wand” into the mixture and blew the biggest bubble I’ve ever made. The downside of the paper wand is that you do have to let it dry. However, try other items you might have in the kitchen, like a funnel, an empty juice can or yogurt container cut into rings (make sure the edge is smooth), cookie cutter, etc.
The Bubble Town website mentioned that if you let the bubble mixture sit, it gets better over time. I’ve been trying it at various points for the last forty eight hours and I discovered two things, you can’t blow bubbles and be angry or ticked off about anything-it’ll make you laugh, and the longer the mixture sits the better it gets. I finally washed my lid on Monday, having made the biggest and best bubble of all. My number one fan, our dog, loved it and of course needed to “nose it.” You can imagine what followed.
You can add food coloring to the solution and make colored bubbles. The downside is that it will leave a stain when it pops. However, you could lay down a piece of paper, blow colored bubbles, and end up with a cool art project.
So create your own bubble magic today using what you have around the house.
Homemade Bubble Solutions: Lots of different recipes to try.
Antigravity Bubbles (video)
Long Lasting Bubbles: This looks like a very cool project, but I haven’t tried it yet.
Bubble wands out of Pipe Cleaners
Bubble Magic
Saturday, July 9, 2011
Should I Try a Clinical Trial?
In order to see if a medication or a treatment will work, prevent a disease or even eliminate side effects of existing treatments, researchers test it out. There are different types of clinical trials, but the focus of this post is to help you decide whether to do a study where a new treatment (medication, surgical or other type of intervention) for your condition is being studied.
The pluses of participating in such a clinical trial include:
• It could result in a cure and/or improve how you feel and function
• You will be helping others
• You may get more medical attention while you are in the study
• Medical care costs and the experimental treatment will often be covered
• You may have access to treatment that would not otherwise be available.
• It may expand your treatment options
• You may feel you have more control over your situation by taking such an active role
The downsides, or risks, are quite real. These may include:
• Side effects can be serious and could even make you feel worse than you already do.
• If this is a placebo controlled study, or one trying several different regiments, you may not receive the experimental regiment
• It may require travel, and time (such as more doctor and lab visits) that could not only be inconvenient but could also be wearing on you.
• Insurers may not cover all of the costs of taking part in a clinical trial, but they should pay for normal or standard care.
Before deciding whether a particular clinical trial is one you want to participate in, you will need to meet the study requirements. These will be quite specific, including such things as your age, gender, diagnosis, prior treatment etc.
Sometimes providers will suggest studies to patients, other times, people will learn about them from support groups or looking on-line. To find out about clinical trails that you may qualify for, talk to your medical provider, check your medical center’s website, and check Clinical Trials.gov
If you qualify for a study, consider the questions below. To help you in the decision making process, rate each question with a plus –a good reason to participate-or a minus-a reason not to participate. When you finish, add up the pluses and minuses and see which seems to be the best option for you.
• Who is conducting the research?
• What is its purpose? What are the potential short and long term benefits?
• What has your doctor told said about your condition and what the future holds? Could your participation impact this?
• Has the treatment been tested before? If yes, what did the research show?
• How are trial results and patient safety being checked?
• Is there a research site close to where you live? Would you have to travel? Is so, would this present a problem?
• Would you have to change providers to be part of the clinical trial? Who would be in charge of your care? Your long-term care?
• What are the side effects of the treatment? How could they affect your life? Does it require hospitalization? Can you continue to take your current medications or engage in complimentary and alternative therapies that you may be using?
• Can you leave the trial at any time?
• Are there costs involved in the trial, such as having to pay for travel, meals if away for extended periods of time? Will these associated costs be picked up by the clinical trial?
• How long will the trial last?
• Could the trial impact current treatment you may be receiving?
Keep in mind that all clinical trials are voluntary. Do not be talked into something that you are not comfortable with and be sure to discuss your concerns and choices with your medical provider.
Resources
Clinical Trials: What You Need to Know from the American Cancer Society: This site provides easy to read and understand information about clinical trials. While the focus is cancer treatment, the basic information applies to any condition.
FDA Basic Questions and Answers About Clinical Trials
Clinical Trials. Gov
The pluses of participating in such a clinical trial include:
• It could result in a cure and/or improve how you feel and function
• You will be helping others
• You may get more medical attention while you are in the study
• Medical care costs and the experimental treatment will often be covered
• You may have access to treatment that would not otherwise be available.
• It may expand your treatment options
• You may feel you have more control over your situation by taking such an active role
The downsides, or risks, are quite real. These may include:
• Side effects can be serious and could even make you feel worse than you already do.
• If this is a placebo controlled study, or one trying several different regiments, you may not receive the experimental regiment
• It may require travel, and time (such as more doctor and lab visits) that could not only be inconvenient but could also be wearing on you.
• Insurers may not cover all of the costs of taking part in a clinical trial, but they should pay for normal or standard care.
Before deciding whether a particular clinical trial is one you want to participate in, you will need to meet the study requirements. These will be quite specific, including such things as your age, gender, diagnosis, prior treatment etc.
Sometimes providers will suggest studies to patients, other times, people will learn about them from support groups or looking on-line. To find out about clinical trails that you may qualify for, talk to your medical provider, check your medical center’s website, and check Clinical Trials.gov
If you qualify for a study, consider the questions below. To help you in the decision making process, rate each question with a plus –a good reason to participate-or a minus-a reason not to participate. When you finish, add up the pluses and minuses and see which seems to be the best option for you.
• Who is conducting the research?
• What is its purpose? What are the potential short and long term benefits?
• What has your doctor told said about your condition and what the future holds? Could your participation impact this?
• Has the treatment been tested before? If yes, what did the research show?
• How are trial results and patient safety being checked?
• Is there a research site close to where you live? Would you have to travel? Is so, would this present a problem?
• Would you have to change providers to be part of the clinical trial? Who would be in charge of your care? Your long-term care?
• What are the side effects of the treatment? How could they affect your life? Does it require hospitalization? Can you continue to take your current medications or engage in complimentary and alternative therapies that you may be using?
• Can you leave the trial at any time?
• Are there costs involved in the trial, such as having to pay for travel, meals if away for extended periods of time? Will these associated costs be picked up by the clinical trial?
• How long will the trial last?
• Could the trial impact current treatment you may be receiving?
Keep in mind that all clinical trials are voluntary. Do not be talked into something that you are not comfortable with and be sure to discuss your concerns and choices with your medical provider.
Resources
Clinical Trials: What You Need to Know from the American Cancer Society: This site provides easy to read and understand information about clinical trials. While the focus is cancer treatment, the basic information applies to any condition.
FDA Basic Questions and Answers About Clinical Trials
Clinical Trials. Gov
Wednesday, July 6, 2011
Take a Break: Fruit Carving
It’s been hot where I live and so I have little interest in turning on my stove, or even cooking for that matter. I tend to gravitate to fruit, which has recently made me start thinking of fruit carving.
I can use a melon baller just fine, and take larger pieces of fruit, such as a melon or pineapple slices and cut with a cookie cutter, but I wanted a bit more zip to my fruit. Don’t get me wrong, there is a lot you can do with a melon baller and a cookie cutter, particularly if you cut out an interesting shape with a cookie cutter and dip a portion of it in chocolate.
If you have a chance to see edible fruit arrangements, they will use a flower cookie cutter to cut pineapple or honey dew melon. They then use a melon baller to make the center of the flower using a different color melon, attachinh the ball to the center using a toothpick. What could be easier?
So get out your pumpkin carving kit, and/or sharp knife with a point, some skewers and tooth picks and use the links below to create some amazing centerpieces as well as keep you amused for hours if you like.
Thai Fruit Carving video
Thai Carving using fruits, vegetables: Includes 16 different designs. Very clear instructions, with step-by-step pictures.
Chocolate Covered Strawberry Roses
Carving Fruit into Edible Arrangements Blog
Asia Recipes This link provides a nice overview of the types of fruits and vegetables to use for carving, how to prep them and ways to preserve them when finish. Step by step directions are provided for making a watermelon basket, apple leaf, simple white lotus cucumber garnish.
Video of roses with citrus peel
I can use a melon baller just fine, and take larger pieces of fruit, such as a melon or pineapple slices and cut with a cookie cutter, but I wanted a bit more zip to my fruit. Don’t get me wrong, there is a lot you can do with a melon baller and a cookie cutter, particularly if you cut out an interesting shape with a cookie cutter and dip a portion of it in chocolate.
If you have a chance to see edible fruit arrangements, they will use a flower cookie cutter to cut pineapple or honey dew melon. They then use a melon baller to make the center of the flower using a different color melon, attachinh the ball to the center using a toothpick. What could be easier?
So get out your pumpkin carving kit, and/or sharp knife with a point, some skewers and tooth picks and use the links below to create some amazing centerpieces as well as keep you amused for hours if you like.
Thai Fruit Carving video
Thai Carving using fruits, vegetables: Includes 16 different designs. Very clear instructions, with step-by-step pictures.
Chocolate Covered Strawberry Roses
Carving Fruit into Edible Arrangements Blog
Asia Recipes This link provides a nice overview of the types of fruits and vegetables to use for carving, how to prep them and ways to preserve them when finish. Step by step directions are provided for making a watermelon basket, apple leaf, simple white lotus cucumber garnish.
Video of roses with citrus peel
Saturday, July 2, 2011
Unique Gifts for Hospital Patients
Years ago my mother was hospitalized for close to a month. I started bringing her something small each day, which she looked forward to. After a few weeks I was running out of ideas and started asking everyone I knew for suggestions. Books, magazines and crossword puzzles only go so far.
Her favorite gift was a beta fish, which lived in a small glass bowl, only requiring feeding every other day. This kept her occupied for hours and entertained the staff as well. However, it is unlikely that most hospitals would allow such a “visitor” these days. One of the important aspects of the fish was that it gave her something she felt responsible for. After undergoing major surgery, one of her first concerns was whether “Darth,” her name for the fish, had been fed.
Studies have shown that nursing home patients do much better if they have a live plant they care for. If the person is in a part of the hospital that allows flowers and plants, give them a plant to look after-not one that requires too much care though.
Before taking something to the hospital, check out rules and regulations about what’s allowed for the area of the hospital where the person is staying. Some units do not permit cut flowers or plants. Balloons and silk flowers can help to brighten the room along with a special picture in such cases.
Feeling attractive brightens one’s mood, so providing a unique bed jacket, shawl, bathrobe or slippers can do a lot to boost someone’s morale. Old Navy will often have seasonal pajama bottoms and colorful socks that can be fun. A basket of toiletries can be very welcome, particularly if they had to leave suddenly for the hospital and don’t have their preferred toothpaste, lotion, lipstick etc. Avoid scented products whenever possible due to allergies.
Take a Break: Having something to do is critical. Using Wednesday’s “Take a Break Day” posts are a good way to have unique projects for them to do. For a quick overview use the Pinterest site Take a Break. Some of these will be fun projects to do together, which can make the visit a bit more fun for both of you.
Craft Kits: These aren’t for everyone, but if they like to make things, picking up a small craft project from stores like Michael’s or Joann’s can be a lifesaver. Some people can spend all day happily making beaded bracelets or crocheting a hat. If you think it’s a good fit, there are many different types of kits you can pick up. A set of uniquely colored and designed beads can occupy someone who likes to make jewelry for hours.
Puzzle books are entertaining and exercise the brain as well. Hospital gift shops will contain a variety of such books. However, check out your local bookstore, or even used book store, as many of them have such books on the bargain sale rack. Minute mysteries can keep one occupied for hours.
Electronics: A laptop computer, iPad, iPod, tablet, or Kindle provides hours of entertainment, as well as a way to stay connected. These are expensive items, but you can often find sales at Amazon or at electronic stores. Many hospitals and libraries offer iPad’s, or their equivalent, and electronic books on loan, so check out their availability. The toy section of your local big box store (e.g. Wal-Mart or K Mart) will have some portable electronic games, which can help pass the time. One word of caution, electronic items can easily be stolen so encourage the person to lock up their devices when not in the room.Since most hospitals offer free Wi-fi, consider giving a month or longer subscription to websites that provide video streaming-Amazon Prime, Netflicks, Hula Plus. If they aren't tech savvy, spend some time teaching them how to operate their device.
Keep in mind that the staff can be as entertained by something you bring as much as the patient. If the staff stays an extra few minutes to talk about the new gift that’s arrived, it gives a lift to the patient.
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