Thursday Thirteen - The COPD Christmas Wish List

Well, I've done the Thursday Thirteen on my Grammy blog and on my journal blog - it's time to wander over to where I really work and add a bit of thirteening here too.

The Thursday Thirteen - Thirteen Gifts Your COPD Person Would Love For Christmas!

This Christmas gift "wish list" was compiled last year with the help of the super members of the forum Sharing COPD Information

It's certainly true that people with COPD are in most respects people just like you or me.
(hey...wait a minute... "they" are me! And quite possibly you. Or someone you know.)

We're still the same people we always were and the gifts that we've received in the past, we'll probably still enjoy now and in the future.

But there are some changes that are unique to the COPD lifestyle. That's where this "wish list" comes in. If we could ask Santa to bring a few things, here's what they might be:

1. an oximeter

2. good books/movies, especially happy/humorous ones

3. comfortable walking shoes & insoles

4. warm jacket with pockets
(a down jacket or similar outerwear is much preferred to the synthetics for warmth, especially for those of us who don't move too fast when we're outside- even though they are a bit more pricey)

5. rolling backpack/suitcase

6. gift certificate for favorite restaurant (especially ones that have take-out)

7. one frozen lobster

8. a bus tour – the kind that usually feature some sort of concert or show,
then lunch and perhaps a few other stops before heading home

9. a nice, soft scarf that can be worn over your mouth and nose when outside

10. a very good office armchair with all direction rollers.

11. a trip to the mall for 2 hours with door to door service as well as someone willing to carry packages as I shop.

12. take my car to the car wash (or do it yourself) for a wash, wax and general cleaning

13. a fluffy bathrobe

We have a lot of great ideas on that forum, so here's nine more:

1. help running errands for 4 hours

2. a warm, washable lightweight vest

3. comfortable, padded barstool with seatback to be able to sit comfortable at the kitchen counter while preparing meals

4. door to door service for two-three hour outings

5. an emergency dialer with speaker phone and panic button (push the button you wear around your neck & the base will automatically call the numbers you programmed until someone answers; they can activate the speakerphone & talk to you--NO monthly service fees)

6. a pre-paid cell phone for emergencies

7. a MedicAlert (or similar) jewelry & service

8. housekeeping service for one day

9. a portable voice recorder to record the questions & doc's answers at appointments to listen to again at home


For some more good ideas, I found a catalog that I like at
www.wellhaven.com
They have garden tools, mobility accessories, music collections-
I really like the long handled body lotion applicator for your back or legs....

another catalog- www.ActiveForever.com is more medically oriented and not as much fun, but they do carry almost everything you might need to assist you with the "activities of daily living" at a pretty good price
(no lotion applicator though)

In the sidebar to your right, you'll find the link to the Problem Solvers shop. There's lots of stuff to drool over in their catalog!

If you can think of items to add to our wish list, please leave a comment and I'll be sure to let Santa know.

Just For Fun - How Many Forum Members...? - (thanks, Penny!)

I'm sure most of you belong to a number of discussion forums and have experienced this. I found it on another forum and thought it was hilarious.
*********************
How many forum members does it take to change a light bulb?

1 to change the light bulb and to post that the light bulb has been changed

14 to share similar experiences of changing light bulbs and how the light bulb could have been changed differently

7 to caution about the dangers of changing light bulbs

6 to argue over whether it's "lightbulb" or "light bulb" ...

another 6 to condemn those 6 as stupid

2 industry professionals to inform the group that the proper term is "lamp"

15 know-it-alls who claim they were in the industry, and that "light bulb" is perfectly correct

19 to post that this forum is not about light bulbs and to please take this discussion to a light bulb forum

11 to defend the posting to this forum saying that we all use light bulbs and therefore the posts are relevant to this forum

36 to debate which method of changing light
bulbs is superior, where to buy the best light bulbs, what brand of light bulbs work best for this technique and what brands are faulty

5 People to post pics of their own light bulbs

15 People to post "I can't see S$%^!" and their own light bulbs

7 to post URL's where one can see examples of different light bulbs

4 to post that the URL's were posted incorrectly and then post the corrected URL's

13 to link all posts to date, quote them in their entirety including all headers and signatures, and add "Me too"

5 to post to the group that they will no longer post because they cannot handle the light bulb controversy

4 to say "didn't we go through this already a short time ago?"

13 to say "do a search on light bulbs before posting questions about light bulbs"

1 moderator to lock the light bulb thread.

1 forum lurker to respond to the original post 6 months from now and start it all over again.

Just Between Us - "From" COPD'ers "To" COPD'ers ....with Love and Understanding......

COPD Canada has a section on their website for the "Newly Diagnosed" created with both compassion and wisdom to share with those just beginning their journey with COPD.
These stories of "seasoned" COPD'ers offer information and just as important (maybe even more important) the anecdotal evidence that life does indeed go on, long after your diagnosis of COPD.

Five For Friday - Five Ways YOU Can Become Involved

"Ah, what can I do? say a powerless few..." (Buffy St. Marie 1979)
There's a lot you can do - and ultimately? You're only as powerless as you let yourself be.
So what can you do?

1,2,3 - Advocate.
EFFORTS - the Emphysema Foundation support group currently has three email campaigns underway - all aimed at Congress, and all pushing for better care for COPD patients. So far, 31 Senators and 120 Representatives have agreed to sponsor one or more supporting bills in Congress! That's great!

Please consider joining these campaigns - we really need your help NOW!
Congress is likely to consider some of the health related bills soon, and, if we hope to influence them in our favor,we have to get our word out now -before they take up the bills.

WHAT ARE THE CAMPAIGNS?
-------------------------------------------------------
(1) Get Uniform & Complete Pulmonary Rehabilitation Coverage
(2) Eliminate the Medicare Waiting Period for the Disabled...
(3) Expand membership in the Congressional COPD Caucus...

HOW CAN YOU PARTICIPATE?
-------------------------------------------------------
It's easy! Read about the campaigns on our webpages, then send your own emails, or use the samples on our webpages:

(1) Pulmonary Rehabilitation
(2) Disabled Waiting Period
(3) COPD Caucus

4 - Join
Find and Join a Support Group. Educate yourself about this disease, learn how others are living with it, share your experience.
We all need support and we are all needed. There is a full list of support groups and forums Here

5 - Register and Be Heard
COPD research is needed to find new therapies and possibly even a cure for COPD. In order to advance COPD research it is very important that the COPD community shows their interest and willingness to participate in research by completing their survey and joining The COPD Foundation Research Registry

Get Moving and Get Involved!

Join Us!

I feel very lucky to live in a time with the technology that allows me to communicate easily with other people living with COPD. I am a member of a few support groups, each one enhancing my ability to live well with this disease.
There is a new group, however, that I am excited to be in at the beginning stages,
helping to launch it to what we hope will be Great Heights.
So...
in a bit of shameless self-promotion (because I'm proud of what we're doing!), I'm inviting anyone with an interest in COPD to please join us at Yahoo group's COPD Survivors.

"Click here to join COPDsurvivors"

Finding Support Online - a list of resources

COPD Support Groups, Forums,Message Boards and Newsletters

COPD-Support, Inc The Family of COPD Support Programs a superb resource for information, support and friendship

The COPD-Support Weekly Newsletter

The COPD Support Forum

COPD Information the site of the original COPD Support Forum, before it moved to the new address (above), this excellent forum will still remain with the new title

COPD International The COPD Patient’s Community another fine support group with an extensive library of information

The COPD International Community Message Board

The Living With COPD 2 Forum Discussing everyday life- COPD and more

EFFORTS Learn more about Emphysema (COPD) from folks who are living with it Daily e-mail discussions with folks with the disease, medical folks too.

Efforts Newsletter

COPD Survivors A new support group formed to support, advocate and educate newly diagnosed patients and in addition, share experiences and knowledge with each other.

The BBLWCommunity Bulletin Board With a very diverse menu of topics

new!COPD-Canada is now hosting > a New Forum and you don't have to be from Canada to join!

The Bronchiectasis R Us Forum

COPD-Alert COPD-ALERT provides support for lung disease (COPD) patients and takes part in worldwide campaign for recognition of dangerous rise in prevalence of COPD new!

COPD-Alert Support and Advocacy Group homepage

COPD-FRIENDS · A support group for folks with COPD, pulmonary fibrosis, lung cancer and other severe lung diseases

COPD Circle Support and Friendship !

Living Life with Lung Disease The symptoms associated with respiratory diseases such as COPD (emphysema or chronic bronchitis) or asthma can make everyday activities very difficult, if not impossible. Only someone with this condition can understand the frustration of not being able to perform simple tasks that we used to take for granted. You can make a difference in someone's life by sharing how you've adapted …

State by State Directory of the American Lung Association’s Better Breather’s Clubs These support groups meet regularly to learn about tips and techniques to better manage their disease... Talk to others who might have the same questions, share stories of support and help, and connect with those in your community with chronic lung disease.

Finding Support On-Line

Self-help online

As more and more ill people connect through online support groups, the founder of one big website gives savvy tips -- and warnings.
By Peter Waite

Try sharing information, opinions and feelings with others who are hurting.

More than 10 years ago, I was dealing with a medical situation. I went online and was surprised by the lack of an outlet in which ordinary people like me could share information or find an empathetic ear. For those who are hurting, the Internet offers more than the presentation of medical facts; it is an outlet for personal connection.

That's when I launched my site, HealingWell.com, which contains 30-plus forums -- also known as online discussion groups or bulletin boards -- in which hundreds of thousands of people exchange information, opinions and feelings every month. Today, there are many other outlets online that host similar health-related forums.
If you're seeking a discussion forum, keep in mind these simple, useful guidelines to ensure that your online pursuits are heading in the right direction:

Approach with both eyes open. Not all health support sites are created equal. Some sites are more interested in harvesting personal information, such as your e-mail address, to send to mass marketers (spammers). So research sites you intend to use. Read privacy disclosure statements carefully.
Look for sites that are moderated, meaning the conversations are reviewed with respect to appropriateness and tone. At HealingWell.com, for example, we use volunteer moderators who often suffer from the same ailment as the topic they oversee on our boards. These moderators also can sniff out "regular folks" who actually are promoting a product.
It also helps to make sure that a site has been reviewed or accredited by independent authorities, such as the Health on the Net Foundation (www.hon.ch), which verifies that health sites abide by certain principles of ethical and responsible behavior. You also should find out how a site is funded. If it's bankrolled by a drug company, it should be upfront about that.

Find a board that will help you. Every health-related category may have subcategories or highly specialized boards. You need to find the discussion board that deals with your situation specifically; a topic such as heart disease may have subtopics related to diagnosis, surgery, smoking and exercise. Also, make sure that the discussion board is active. Look for daily postings as you scroll down through the contents. If the last posting was a month ago, you may not get prompt answers.

Check your emotions. When you're posting on a discussion board because you're sick or a loved one is suffering, your emotional state is fragile. Most people taking part realize this and are sympathetic. But still, it's best to use a detached, information-seeking "voice." Making liberal, unnecessary use of fuming ALL CAPS letters and exclamation points may keep you from accomplishing your goals -- and alienate you from other users.

Sharing is good. Some people struggling with a disease may receive news that they're making a great recovery, yet they are reluctant to share this because it sounds like "gloating" in a forum used by fellow sufferers of the ailment. They shouldn't. The reason people flock to these chats is because they want to hear from those who are doing well -- and how they did it.
Similarly, some are reluctant to talk about their setbacks because they don't want to dole out bad news to the group or are afraid of being discouraging. Again, the whole point is to share. If you're alone and hurting, don't be afraid to seek out shoulders to lean on. Someone even may have something practical to offer, like a new remedy or just-released study.

Concise is nice. Users should seek to share, but they also should be respectful of everyone's time. So ask direct questions and avoid long personal histories or biographies. Do keep your messages as streamlined and relevant to the group as possible.

Maintain discretion and anonymity. What you post will be online for perhaps years, even decades, to come. Anyone who goes online will be able to call it up. So be sure that what you're writing won't identify or embarrass anyone you know. Never give out information that's private or reveals who you are. Before posting, take a look and ask yourself if you'd be comfortable posting this on a bulletin board at work or at church. Getting information from strangers in a public forum doesn't require you to reveal personal details.

Participate regularly. Make the bulletin board part of the recovery routine by checking in every day. You'll feel more empowered to take control over your own health care and less afraid to consult with your doctor about possible treatments. Which brings up ...

Check out everything with the doctor. Most people on the boards are well-meaning folks who want to help. But such users may offer advice that's not right for you. The forum is never a substitute for sound medical advice. An exercise that helped someone build bone strength may be too strenuous for you, and a new drug may not agree with other drugs you're taking.

Peter Waite launched HealingWell.com in 1996, and the site now averages more than 350,000 unique visitors a month.

COPD-International Newsletter

This week's edition of the COPD-International weekly newsletter is available online by following this link. While there, you can also subscribe to the email version delivered right to your inbox every Monday so you'll be sure to never miss an issue.

At the end of this week's newsletter there is a tribute to Philip Cable. It begins with a quote from Phil describing his view of online support for people with COPD:

"What we are all trying to do here is to help others when they ask and to try and put a positive spin on our lifestyle, sort of like the glass half-full analogy. I am not one of these rah-rah, shishboom bah type of people that will tell you that every thing is great and nothing you have or do is as bad as me or some body I know. Rather I want to listen to your story and help you if I can" Phil Cable, March 2005