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Wanting What Once Was

I have lived with H.D. for over twenty years. My Father had it back in the early 40's or 50's. Nobody knew anything about it then. They thought at that time it was alcoholism, as my father was always...

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Here she comes... Miss America!

Jim PollardOur former Miss America, Katie Harmon, spoke about quality of life for those sick now, specifically with breast cancer. She made an interesting comment in the interview about how appalled...

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Trudy's Story

Trudy StapletonThis story is about the impact that growing up with an HD positive parent had on the author's life, and learning to deal with the inevitable issues. Huntington's Disease has been...

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Self Advocacy - Equipping Yourself and Preparing Your Approach

This is the first part of a series of articles authored by Marsha Miller that constitute lessons learned through her efforts to self-advocate for her HD afflicted family and friends. I hope you find...

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Coping with Loss as a Caregiver

Taking care of a loved one with Huntington's Disease is never easy no matter whether it is a parent, a spouse, a child, or a friend. All along the journey there are triumphs and grace periods and lots...

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Self-Advocacy, Part Two: Documenting Disability

Documenting a disability like Huntington’s Disease can be difficult because there are a multiplicity of problems that combine to prevent an individual from working. If it was just mood problems, they...

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David's Gift

It was five days before Christmas and I was feeling pretty sorry for myself. I wasn't even 50 years old yet, but my husband, David, was living in a nursing home full time with a progressive,...

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JHD Retreat in Arizona June 1-3

EXCITING NEWS FOR THOSE WITH Juvenile Huntington’s Disease! 2007 JHD Arizona Retreat June 1-3 Since the number of those with JHD is so small, every single comment, concern, and corresponding need must...

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I Hate this Disease, but I Love Him

Today is our 46th wedding anniversary. As I sit here, I remember a special young man, cute, warm hearted, with a sense of humor that wouldn’t quit. He was smart, articulate and sexy, not like any other...

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Long Journey Home

It was early August 2000, a lovely Summers day in Scotland (rare). Michael and I were going to Yorkhill hospital. He had been having problems -- falling, deteriorating motor skills, bad muscle tone;...

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Swimming against the Tide

The topics that are covered in this article are only my experience and in no way a guide or a criticism of how others think. When caring for someone with JHD we encounter many problems; one of the...

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Family and Friends

One of the blessings that come with Huntington’s Disease in the family is that you will, if you do not already, come to treasure the family and friends who offer continued support and friendship as...

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A Caregiver's Self Talk

I often tell myself that if Tony can live his life with dignity, courage and good humor despite his Huntington’s Disease, then I can be a caregiver with patience, understanding and serenity. I tell...

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Managing Medications from a Caregiver's Perspective

Medications are one of the most difficult issues facing Huntington’s Disease (HD) caregivers and patients (pHD). What medications do we need? Who should prescribe medications? What dosage? Why do...

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Imagine the Perfect Huntington's Disease Family Care Center

There have been numerous stories of families struggling with issues caused by having one or more family members struggling with Huntington’s disease.  I’ve always wondered what an ideal support network...

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