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Tio D. hunting for the cure to Huntington disease great Huntington disease awareness thanks to House MD tv show

Untitled 12 months ago

This goal wasn’t easily measurable but there has been growth in this area. It’s time to accept that this item has been accomplished about as much as one can say that it is accomplishable.

The latest coup was to finally bring together two care receivers who live more than 80 km apart and neither is able to drive or travel independently. These two had not seen each other in about 4 years. Hoorah for busting up isolation (or unwanted compartmentalization)!



Tio D. hunting for the cure to Huntington disease great Huntington disease awareness thanks to House MD tv show

Many steps to destination 12 months ago

Almost to the point where it’s possible to check this item as ‘complete’ but need more time and practice to demonstrate that my service has increased.

Taking a much more active role with a different care partner over the next month which will require relocating to a different community nearly 100km away. This care partner is much more active and coherent and still making decisions about activities. So my job will be to step into the shoes of the primary caregiver and keep up the momentum of the care partner’s routine for a couple of weeks.



Tio D. hunting for the cure to Huntington disease great Huntington disease awareness thanks to House MD tv show

Learning names 18 months ago

Met some of the medical and health professionals who help one of my family members. This is a small step forward.

The real test will be to remember all of their names over the next few days and weeks as our paths cross again.



Tio D. hunting for the cure to Huntington disease great Huntington disease awareness thanks to House MD tv show

Christmas carols 19 months ago

Lots of hugs, tears and singing Christmas songs this week.



Tio D. hunting for the cure to Huntington disease great Huntington disease awareness thanks to House MD tv show

One Flew Over The Cuckoos Nest, appropriate for Chronic Care Hospital or Nursing Home Secure Ward setting? 23 months ago

Couldn’t help but notice the other day that this was playing on a large TV near the main door while I was visiting. Do you think that was wise?

It took a lot to keep it together and not laugh before completely exiting the building and making sure the doors were closed. The neighbours across the street probably thought I was escaping by the cries of laughter and the running away from the building and all…

Have your say: cool or not cool?



Tio D. hunting for the cure to Huntington disease great Huntington disease awareness thanks to House MD tv show

Breakthrough! 23 months ago

While sitting next to a piano recently, I put 2 and 2 together and found some very deep, strong, happy memories about music from youth and got a great smiling, laughing, animated reaction. Huge!

The memory is still there, the HD has it locked in tightly, but it is such a big deal to her that she can still recall it when prompted in the right way.

My guess is that nobody has asked her for that memory in a long time, but it appears to be retrievable anytime we want!



Tio D. hunting for the cure to Huntington disease great Huntington disease awareness thanks to House MD tv show

Get outside, the weather is fine! 2 years ago

Took my one carepartners outside yesterday. She really needed some sunlight. We found a nice shady spot and a sunny place for a bit of variety.



Tio D. hunting for the cure to Huntington disease great Huntington disease awareness thanks to House MD tv show

Made the difference 2 years ago

The other day, one care partner needed to get an x-ray after having taken a nasty fall a week ago. Also got his laundry started which was needed.

One of my other care partners had a nice visit with me. She seemed to follow the conversation and enjoyed having her hand held.



Tio D. hunting for the cure to Huntington disease great Huntington disease awareness thanks to House MD tv show

Good result today 2 years ago

with laundry completed for one carepartner and a good visit with lots of kisses and hand-holding for the other. A little love goes a long way.



Tio D. hunting for the cure to Huntington disease great Huntington disease awareness thanks to House MD tv show

A Caregiver's Goodbye 2 years ago

Given to me by a caring social worker:

Millions of people we see each day.
To most of them, not much to say,
But once in a while, in the middle of life,
We’re made to stop because of their strife.

They let us in; we glimpse their soul.
The joy of youth gone long ago,
Now replaced by pain and fear,
Wondering why they still are here.

They look to us and question why
They are not yet permitted to die.
You want to care, but not too much
About their fears and problems and such.

And then it happens, not really fair,
They creep into your heart; you start to care.
Then comes the time to let them go,
Unable to keep them forever, you know.

Sadness, I know, will pass in time.
The memories I have to cherish are mine.
I hoped I helped you at least for a while.
You gave to me and made me smile.

And now you’re there, where you wanted to be.
No longer crippled, your spirit is free.



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