Showing posts from October, 2011

They make that??

Well, we have been dealing with lots of issues lately related to the cognitive changes associated with Huntington's Disease. Alan forgets how to use the telephone, reprograms it with new numbers, or is certain that we have changed our phone numbers and will not answer if he sees the "old" ones on the caller ID.

With all the focus on dementia, and the needs of patients and caregivers, Kenny and I were sure that there was a phone that was so simple, it could be confusion proof.

Well....yes, they make such a thing! A phone with pictures instead of numbers (although the numbers are available if needed) and can be adapted for the hearing impaired. Alan has significant hearing loss due to strong antibiotics given to him in the hospital several years ago.

So, I ordered this phone. We'll see how it works.

In appreciation

When you have a family member with special needs, whether it's developmental delay, autism, dementia, or Huntington's Disease, you so appreciate it when someone who cares for your loved one "sees" them as a person, not as a set of issues or problems.

Last week, Alan had to go to a doctor for an urgent health issue, and I met Madeline and Alan at the doctor's office. Some over the counter meds were needed, so I purchased those and headed back to Alan's group home to leave them there. A new staff member will be working with Alan this weekend, and she was being briefed by the head of residential services. I gave the meds to Madeleine, and she told me that this new staff member would be shadowing her for a couple of days. I expressed relief that she would get to explain how to help Alan and how to react (actually NOT react) to his behavior issues.

I was almost shocked when Madeline said, "Yes, I want to make sure she understands what Alan is going throug…

Huntington's Support Group

Today we were in Tulsa at our first HD support group. Four families were represented. We shared our ups and downs, networked, and gave each other a much needed pat on the back.

Here's what I came away with:
Huntington's takes away...independence, confidence, cognition. A person with Huntington's often becomes isolated. Although a person's recognition of loved ones remains intact, the ability to make decisions, understand situations and conversations, live independently, and deal with stressful situations is eroded.

Huntington's gives...the realization that every day is a gift. The ability to see each interaction with those we love is a sweet treat to be savored. The certainty that TODAY is the best it will ever be. The desire to reach out and comfort those who walk the same road we are walking.

We shared tears, stories, and many "Ah ha" moments. Everyone left with a smile on his/her face.


Life is like a GPS system. You are going in a direction, then something happens and you have to change course. Just like the voice on the GPS, you hear it in your mind; "Recalculating..."

I have been thinking about that analogy quite a bit, and wondering how our family's life would look as a GPS printout.

"Head north on marked route..."
(New normal with a special needs child) - "Recalculating...continue west on marked route."

(Move your child to a group home) - "Recalculating...continue south on marked route."

(Diagnosis of Huntington's Disease)

We have yet to see where this new route will take us. Still "...Recalculating..."

Good to remember - God can always see the route - like the satellites we use for GPS. We might be recalculating, but He's not. He's always known how to get us from the beginning to the end.

"...'And you know the way to the place where I am going.' Thomas said to Him, 'Lord we do …