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Thursday August 4, 2011 - Issue #549

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From The Editor

Gary Barg - Editor-in-chief 

Three More Little Words

Now that summer is in full swing and caregivers are visiting and being visited by family members, one particular conversation with some errant relatives that has been shared with me by our readers has driven me to respond with a three-word phrase. This concept is as important to family caregivers as any other three little words they may need.  So here goes…Nonsense, poppycock and baloney!  (Please forgive me for such profanity.) 

I am driven to such a response whenever I hear that relatives feel the need to tell family caregivers that they are no longer a caregiver when their loved one is living in a care facility.   

At a recent Fearless Caregiver Conference, I even heard from a caregiver who had been slapped in the face with this thoughtless opinion from several of his relatives. So, let me reiterate...continued

Take care

Gary Barg

CMT-Charcot-Marie-Tooth Channel



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Feature Article

The Nature of a Beast: Understanding ALS

By Arleen M. Kaptur

There are so many different situations which can make someone a caregiver, like a loved one getting into a horrible accident and being rendered immobilized. The years can begin to take a toll on the mind and body, and help is needed with the simplest of things. Then there are the ravages of a horrific disease, ALS (Amyotrophic Lateral Sclerosis), also known as “Lou Gehrig’s Disease” in the United States (after the baseball great), MND (Motor Neurone Disease) in England, and Maladie de Charcot in France, which robs mobility and is eventually fatal for those who are in the prime of their lives...continued

Guest Column

A Different Vow

By Kate Arnold

"Do you know where my husband is?  Because he's a good one and I'd hate to lose him."  This is her third husband, so Holly, my 80-something-year-old patient, has room to judge.  I tell her he's reading his book downstairs and she says, "He's such a patient husband."  She asks this question every five minutes of her two-hour-long visit.  She doesn't know what city she's in, but she know she's in love with her husband...continued


Clinical Trial Tips

Appointments with the study doctor are made on a specific schedule to dispense the study medication and to evaluate your loved one’s progress. Anything you can do to make sure the appointment is not missed will be one of the best ways you can help...continued

Share your tip, advice resource or observation.

Sharing Wisdom - Caregiver Tips

From Pat in Boston, Massachusetts
Baby care monitors for day care, hospice and nursing homes give abusers nowhere to hide and peace of mind to family members. There are even two-way devices that are visual and have sound to offer both patient and caregiver added convenience. Grandma monitors would make great ideas for nonprofits and tax exempts to put a face where it is needed, and not where it isn't.

From Patty in Tennessee
I found one caregiver through a neighbor of my mom's at her retirement home. I found others through that caregiver and by word of mouth. They made more money because I didn't go through a service and all five were wonderful. Retirement homes, nursing homes and assisted living all have caregivers; you may have luck finding contacts there, although the residence itself probably won't make referrals. Best to ask family members of patients. Sometimes nurses will be good contacts. Good luck!



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Inside This Issue:

From the Editor

Three More Little Words

Feature Article

The Nature of a Beast: Understanding ALS
Guest Column

A Different Vow


Clinical Trial Tips  
Sharing Wisdom



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Educate yourself & other caregivers on any medication given to a loved one. The internet is wonderful to help you...continued


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