One Foot In Front of the Other

This Valentine's Day we visited Lacy as usual.  Kenny and I often talk about how thankful we are that we can see Lacy every day.  Even if he is angry or upset, we visit for a few minutes.  He sees our faces every day, and knows that we love him.  Today he wasn't at all talkative, but was agitated.  I was a little worried that he'd had some kind of neurological event, but he didn't display any signs of a stroke or injury.   We didn't stay very long since he was upset Later we got a call that he had an episode of being unable to speak.  When he finally did start to talk, the words were unintelligible.  This has happened several times over the past couple of years.  It's like he has some sort of storm in his brain.  I sometimes think that his agitation is a sign that he is experiencing a brain storm of some kind, especially when this kind of episode follows the agitation.  The nurse let us know that his speech is gradually returning ...

Huntington's Disease - "the cruelest genetic disease known to man." What can we do?  I feel so helpless as I watch Lacy's deterioration.  Sometimes it hits me in such a way that I can't catch my breath.  He must have help to shower, shave, change his clothes.   He must be supervised in the bathroom and at mealtimes.  He is often unaware of what is going on - he lies on soiled bedclothes and waits until someone comes to check before he asks "Can you change my bedding?" This week I walked into his room to find him covered in vomit.  He was oblivious.  Still watching television, still sitting quietly.  Retching and then taking a breath before he continued singing his worship songs.  I pressed the call light and waited for someone to come.  There are many others in this place, and it sometimes takes a while for a call to be answered.  I know in my heart he would have sat there quietly until someone came.  He does not understand...

Lacy has been at a nursing home now for almost three months.  We are sure we made the right decision, and are confident that he is well cared for. Huntington's Disease has not been a part of the professional experience for most of the caregivers at Lacy's nursing home.  The behavior issues - perseveration, paranoia, anger - confound many of the dedicated staff.  His speech is becoming more difficult to understand, and these folks haven't known him long enough to be able to decode his speech just yet.  We are still working to make sure his needs are met, and that he has the adaptive equipment he needs (like adaptive silverware). No matter what we do, or how we try to help, we are pretty powerless in the face of the ravages of HD.  We are all feeling our way.  We have found that it is important to share our knowledge and any information or materials we can supply.  Either Kenny or I (or both of us) are there at some point every day, and sometimes mul...

There is a melancholy that surrounds a new year.  Passages through grief and tears mingle with the joy that a new beginning brings.  May this poem speak to you as it does to me. William Wordsworth. 1770–1850    Intimations of Immortality from Recollections of Early Childhood    THERE was a time when meadow, grove, and stream,     The earth, and every common sight,             To me did seem     Apparell'd in celestial light, The glory and the freshness of a dream.          5 It is not now as it hath been of yore;—         Turn wheresoe'er I may,             By night or day, The things which I have seen I now can see no more.         The rainbow...

As 2015 draws to a close, I've been thinking about the adventures we experienced during this year. 2015 was the year of emergency room visits.  I have pictures on my phone that document the head injuries Lacy received during the year. This was the year I began to see the effects of aging on my body:  A broken toe and knee surgery kept me sidelined for nearly 6 months. 2015 was the year that we realized Lacy needed to be in a nursing home. This was the year that God again showed His mercy and grace.  We were given wisdom in selecting a nursing home.  The fears we had about the transition were never realized.  Lacy is doing very well. 2015 was the year of advancements in the quest for a treatment or cure for HD.  New drug trials are very promising.  There will be a cure. The new year holds the unknown.  We have no idea what is ahead of us.  None of us has a crystal ball to see what is coming.   Thank God we do not know.  W...

I thought I would share the honest Christmas letter one might send out as an  HD family.  We do laugh at some of the things that happen, and even the most terrible incidents are darkly humorous.  As you know, I am not normally a "Debbie Downer," and I would never send this to someone in real life.  Hopefully you'll laugh a little with us, and pray for a cure! Dear Family and Friends, This Christmas season finds us all licking our wounds from a particularly brutal year.   We’ve survived and we are sending you this letter to prove it!   As most of you know, we usually take a week long vacation sometime during the year, but we elected instead to take several short but meaningful trips to an Emergency Room.   We’ve seen two different ER waiting rooms, so message us if you want the low down on the most commodious.   Suffice it to say that you get in quickly if you A: come by ambulance (our preferred mode of transport this year!), B: Have an...

The holiday season is upon us, and I find myself at odds with the festivities surrounding these next couple of weeks.  I've vacillated between being joyful and feeling great sadness.  Kenny and I talked about this today, and he's felt the same way.   I think that loss is felt so keenly at this time of year, because the focus is on getting together with loved ones, having a great time, giving and receiving gifts.   Our family's traditions are changing.  Huntington's Disease has robbed us of so much.  Lacy is unable to come home.   Leaving the facility in which he lives upsets him so much, and he just doesn't care about holidays much anymore. During the Christmas holidays we used to bring Lacy home for at least a week.  We'd put together jigsaw puzzles and watch episodes of Matlock on TV.  On Christmas morning we'd have biscuits and gravy.  Lacy would play Santa and give out all the presents. This year, Kenny and I will eat Christma...