Caregiving

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 doctors prescribe one medication for a patient and other doctors prescribe another drug? Are medications really needed? Why is my pHD taking so many medications? What are the short- and long-term side effects? What happens if I stop the medications? Can I change the dosage or change the t
Dave Kendall

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 myself that I will not stand on the street corner and yell at God that “this is not fair. Tony does not deserve this. I do not deserve this. Our sons do not deserve this.” When a well meaning, but ignorant bystander learns of the death of a child who has lived a life of ment
Maggie

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 well the new friends who will become your extended family. We live in a society that glorifies youth, beauty, and health, devalues the elderly, and denies the reality of death. This pretty much guarantees that there will be family and friends who will be unable to offer the support we need
Marsha L. Miller, Ph.D.
Marsha@hdlighthouse.org

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 biggest is trying to be understood. We try our hardest to explain our situations to doctors, nurses, social workers etc.... but often we are thought to be exaggerating or even bending the truth a bit. Sometimes its like banging our heads off a brick wall. Not only do we have to care for our loved on
Gordon Robertson

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; something wasn't quite right, I didn't know what. We were to meet a neurologist, an expert of 'the brain.' I knew very little about all of this. I suppose I was a bit 'ignorant'. Little did I know that two hours later our lives would change forever. As we walked into the neuro's office, he watched
Gordon Robertson

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 guy I had ever met before. I was madly in love and felt like the smartest girl in the world because he loved me back and we were getting married. We bought a house a few months later and settled down in the suburbs. He was still finishing college and I was working full time. We discovered
Marg

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 be voiced in order for the quality of care to improve dramatically for you and your child with JHD! Come join with other families, who are also affected by JHD, in this casual non-threatening atmosphere, where you can share your fears, concerns, experiences, hopes and helpful strategie
Phil Hardt
phardt1@cox.net

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, degenerative neurological illness. My oldest son had married over the summer and the youngest one had started college in the fall; both were fairly self-sufficient and rarely were around. Also, I had not worked since August, so I was missing the day-to-day interaction with co-workers and the daily challenge

Renee Underwood

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 could be treated. If it was just involuntary movements (assuming that they aren’t extreme), the job could be redesigned around them. If it was just memory problems, there might be some ways to compensate. But it’s not – it’s all of those things plus deficits in exe
Marsha L. Miller, Ph.D.
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