Category: <span>Online Caregiving Resource</span>

Capital Public Radio offers a series of stories on family caregivers titled, “Who Cares“. In addition to the stories, CPR provides data on caregivers. The story, “To Have and Have Not”, is especially poignant.

Learn more at Who Cares

Online Caregiving Resource

I’m sure this handy online tool has been available for a while, but today I discovered a wonderful medication interaction checker on Drugs.com.

Drugs.com offers an Interactions Checker which displays the potential interactions between two or more medications. Or between medications and food. After you agree to the terms of service, you can enter a list of medications, click “Check Interactions”, and see a list of the drug/food interactions ranked by potential risk: Major, Moderate or Minor.

A nice feature is being able to choose between the Professional and the Consumer report of interactions. Of course, the Consumer version is written to be less technical/medical. However, having access to the Professional version offers more details. Another nice feature is that the Interaction Checker allows you to save lists of medications so one is not required to re-enter long lists of medications.
Drugs.com’s Interaction Checker is now in my saved bookmarks!

MS Medications Online Caregiving Resource

As a caregiver, you know your family finances are probably different than those of some of your friends. You have medical expenses most of your friends do not have. Chances are good that your friends’ families are dual income families. Yours is probably not. Caregiving often brings its own unique set of financial burdens.

Helpful information is available if you wish to learn how you might better manage your financial burdens, especially as they are compounded by the current economy.

TAKE CARE! – Self Care for the Family Caregiver is the National Family Caregivers Association‘s quarterly newsletter written to provide members of NFCA with information, insight, support and knowledge. It’s a great little newsletter with well-written articles.

In the current issue (Winter 2009), there is extensive information for caregivers about managing family finances in the current economy. And it’s good information. Articles include “The Costs of Caregiving”, “Money-Saving Tips for Family Caregivers”, “Protect Yourself Against Financial Fraud”, and “Tax Tips for Family Caregivers”.

As a member of NFCA, I receive a paper copy of National Family Caregivers Association’s TAKE CARE! newsletter. Mine arrived in yesterday’s mail. I’ve just checked the NFCA web site and this quarter’s newsletter is already available online in the caregiving resource section of the NFCA’s web site.

Caregiver Tip:

If you’ve not yet discovered the National Family Caregivers Association, take a moment to visit their website at www.thefamilycaregiver.com. I think you’ll find it to be a solid source of helpful information.

MS Caregiving Online Caregiving Resource Practical Tips

You may remember a teacher saying “you must use authoritative sources” when writing a research paper for class. What your teacher meant was to use sources written by people with academic or professional credentials.

For example, if you were to write a paper on growing roses, your neighbor with a green thumb and beautiful New Dawns might be a great source of information. However, unless she has a degree in botany or is a Master Gardener, your teacher will not consider her an “authoritative source”.

When researching medical information online you may be overwhelmed with the amount of information available for you to choose among. There are web forums, blogs (like this one, MSCaregiver.com), web portals, industry-related web sites, and online encyclopedias.

Be careful. Pay attention to what authority stands behind the information. A good example is this blog, MSCaregiver.com. I am not an authority on Multiple Sclerosis. I am not a physician or research scientist. I will not write beyond my authority. I am a man married to a woman with Multiple Sclerosis, “doing my best when I can’t make it better”. I write about what works for me and I share it here. Some of it is practical information like “Tips for Traveling and Multiple Sclerosis” and “How Does One Talk with a Doctor?“. Some of it is inspirational, “How Do You Pray?“. Because I am not an authority on Multiple Sclerosis, I will not say, “take drug X and it will relieve your symptom Y”.

Why this discussion about authoritative sources?

It is vitally important that caregivers and patients not base their medical decisions on bad information. Bad information is information that is wrong or incomplete. An example of incomplete information is discussed in a recent article on MSNBC.com titled, “Wikipedia often omits important drug data“. The subtitle is “Study: Entries may not include side effects or risks from mixing medications”. I encourage you to read the article. It’s important.

The article mentions a better source for medication information is Medscape Drug Reference, a free, peer-reviewed web site. The article also mentions using medlineplus.gov for “good quality information that you can feel confident in.”

If you want to learn about joining a support group or what my wife means by “leg hours“, this blog is for you. If you want professional help with an issue more critical to health, that might be risky or is medical in nature, talk with a physician. Use authoritative sources.

MS Information Sources Online Caregiving Resource

“Follow the money,” is a truism that many appreciate.  Often, simply knowing who paid for something gives one a good idea of who “owns” the message.

So here’s the logical question for readers to ask when they read MSCaregiver.com, “Who pays for this blog, MSCaregiver.com?”  In fact, this is a question you must ask of any information source, “Who is paying to present this information?  Who funds this message?”

The quick answer is for MSCaregiver.com is, “I am.  I’m Rick Wheat.  My wife has Multiple Sclerosis and I’m an MS caregiver.”  The financial costs of maintaining this blog (and most blogs) are minimal … only $1 per month for hosting and a few more bucks a year for the domain name.

Why is it important for readers to know who pays for MSCaregiver.com?  Because you need to know that no one is paying for advertising here and no one is paying me to write content.  I write what I wish, about what I think may be helpful, and about what I’ve found to be helpful to me and my wife.  I write it because I want to offer support to others who care for a person with Multiple Sclerosis.

A nice thing about not being paid for my efforts here is that I can write when I wish.  Follow MSCaregiver.com long enough and you’ll notice that sometimes I write frequently, other times I take frequent breaks.

Now that you know this blog is not a commercial endeavor, but about my own personal experiences, I hope you’ll share what works for you.  If you have something to offer, sign up and share your comments!

Online Caregiving Resource

An important resource for MS patients and caregivers is the Multiple Sclerosis Foundation (or MSF). The mission of the MSF is to “ensure the best quality of life for those coping with MS by providing comprehensive support and educational programs.”

The quickest way to begin taking advantage of the free resources offered by the MSF is to visit the MSF web site. There you’ll find information about MS; links to information about support programs, grants, patient services; free online publications and fact sheets and information for health care professionals.

MSF’s publications include MSFocus magazine and Support Group News, both available at no cost to MS patients, relatives, caregivers and healthcare professionals. Also, MSFYi is a free email newsletter about the latest developments in MS research and treatment. Visit the MSF Magazines and Newsletters page to subscribe to any of these publications.

All MSF services, information, literature and subscriptions to publications are provided free of charge.

Caregiver Tip: Because of the current wild Winter weather, one of the most appropriate MSF articles to start with is “Emergency Planning“.

Online Caregiving Resource

ABLEDATA is an excellent online resource which provides information on products for people with disabilities. ABLEDATA is sponsored by the National Institute on Disability and Rehabilitation Research (NIDRR), part of the Office of Special Education and Rehabilitation Services (OSERS) of the U.S. Department of Education.

ABLEDATA offers several different types of resources including links to web sites that share information on assistive technology and other disability-related issues, a searchable “Assistive Technology Library”, product reviews, and news items on assistive technology and disability issues.

As examples of what ABLEDATA makes available: in the Caregiver section of the Resources menu there are 60 different resources for caregivers. In ABLEDATA’s long list of fact sheets and consumer guides, you’ll find the very helpful, “Informed Consumer’s Guide to Wheelchair Selection”. and the extensive (and practical), “Intensive Mobility Training for Disabled Drivers for the Safe Use of Power Wheelchairs, Scooters & Automobiles”.

Caregiver Tip: Take advantage of the information available on the ABLEDATA web site.

Online Caregiving Resource

It’s normal for us to wonder if our own experiences are similar to others who find themselves in a similar situation. We expect to look around us and see people acting in certain patterns of behavior. We want to believe we all respond in a similar fashion to life’s hurdles. Of course, this isn’t true. And, in regards to Multiple Sclerosis, there are many responses to the disease.

What I find inspiring are the stories of people with Multiple Sclerosis who just won’t quit.

If you find yourself wondering about the stories of other people with MS, you’ll be interested in this YouTube video titled, “Living with Multiple Sclerosis”, about Dan Powell, an art professor at University of Oregon who is living with MS.


Online Caregiving Resource

Online Caregiving Resource

While searching for a solution to my wife’s driving difficulties I came across NMEDA.org. It’s the website of The National Mobility Equipment Dealers Association.

From the website: “NMEDA is a non-profit trade association of mobility equipment dealers, driver rehabilitation specialists, and other professionals dedicated to broadening the opportunities for people with disabilities to drive or be transported in vehicles modified with mobility equipment. All members work together to improve transportation options of people with disabilities.”

The website is a great resource for you if you’re considering a modified vehicle. The site’s Dealer Directory offers links to websites of companies which modify vehicles

Online Caregiving Resource

The Multiple Sclerosis International Federation (MSIF) is an international organization which links the activities of national MS societies around the world.

A growing series of publications is a free resource for people with MS, their caregivers, medical professionals and MS support groups. The series addresses the broad spectrum of issues related to living with Multiple Sclerosis. Each of the 10 publications is available as a free PDF download.

Titles in the series include, “Pain and MS”, “Caregiving and MS”, “Genetics and hereditary aspects of MS”, “Rehabilitation”, “Intimacy and Sexuality”, “Healthy Living”, “Emotions and Cognition”, “Special focus on the family”, “Dealing with Bladder Problems”, and “Dealing with Fatigue”.

You can also sign up for a free paper subscription or an email subscription. It appears a new publication in the MS in Focus series are released each 6 months.

Caregiver Tip: Take advantage of the free information about Multiple Sclerosis. The Multiple Sclerosis International Federation is an example of the organizations created to help MS patients, caregivers and healthcare professionals.

Online Caregiving Resource

Caring Today Magazine, LLC publishes Caring Today. You can purchase a 1 year subscription to the hardcopy magazine for $12.95 on the CaringToday.com web site. I’ve not yet read the magazine, but I do like the information available on their website. The information is practical, personal and enlightening.

The focus of the website is on caregiving for people with all types of illnesses and needs. The results of the “Caring Today/CVS Pharmacy Family Caregiver Insights Study” are available online. The study of 500 caregivers offers a more positive perspective about caregiving than many may expect. For example, 59% of caregivers surveyed report an increase in the quality of relationship with the person for whom they care. That’s a good thing.

Caregiver Tip: Remember that being a caregiver can actually strengthen the relationship you have with the one for whom you care.

Online Caregiving Resource