Criteria For JHD vs HD

I've seen a couple different versions of the data criteria for determining whether or not a patient is considered JHD.  My daughter was diagnosed before age 20 and has a repeat number of 69 so was clearly diagnosed as JHD.  My son, however, was told his is adult onset originally but the neurologist he sees now said with a repeat of 55 (50 or more) and symptoms beginning in early twenties, he is JHD as well.  Not that this makes much difference as we still cannot stop this beast in its tracks, but it's interesting to know from this standpoint:  HD is rare, JHD is more rare, and with the small number of JHD patients in one state, for instance, we have two of them.  And even though they are siblings, only two years apart, their symptoms are most definitely not the same.

I'm interested in finding out if others see very different symptoms among close siblings.

Loss

I'm saddened by the loss of another young life to JHD. This young lady is near the age of my daughter and was diagnosed just a few years prior.  I'm sure I'm not alone in all the wondering about the things we do, or don't do, and what might have an effect on the length of time we have with our loved ones.  I like to think that maybe some of my proactive moves are helping my daughter and son to hold on longer, and possibly be around for a cure someday.

 

Helpful Hints

Although some of these may not help everyone, I would like to share a couple things I figured out that helped us, in case they may be useful to someone else.

Feeding tube info:  We're on tube #3.  To do gravity feed, we have the gtubes with the part that hangs out.  We were directed to tape it to her tummy.  Instead, I got cotton stretchy fabric (like tshirts) and sewed a velcro strip along the ends of pieces that go around her middle.  It holds the tube in place and is far more comfortable than tape.  Also, tube 1 came with a clamp, tube 2 didn't so I used a small chip clip on the tube for 11 months.  The surgeons don't understand that HD means all muscles, including tummies, are contracting randomly so we needed the tube clamped to avoid messes.

caregiver time

I'm curious to hear what others do for caregiving.  My husband and I both work full time.  My JHD daughter (now 26 yrs old) lives with us and has a 40 hour caregiver in our home.  We feel very blessed to be able to keep her at home as we realize this is not easy and it takes a lot of work on my part to get things arranged to get us the things we need to make this all happen.  Erin is at the point now that things seem to be changing quickly downhill.  December has not been kind to her.  At the start of the month, she transferred with help more often than not, but we could do that with just one person assisting most of the time.  She had occassional bad days where it took two of us, but now we are two for almost everything and that's a struggle.  Her chorea is bad and gets to a point that she cannot even hold herself into her chair the past few days.  We are requesting a lift once the doctors are back from holiday breaks.

Has anyone ever requested and received two caregivers at the same time so that patient and caregivers are all safe?  It has to be cheaper to get two full-time people in our home than to put our daughter into a nursing facility.  I'm wondering if anyone has dealt with this before and might know some information about the best way to approach it.

getting started

I've begun this site in hopes that it's found to be helpful as a communication tool for moms who are dealing with JHD or HD in with children (adult children included).  It's clear that no two HD patients are the same in terms of symptoms or circumstances.  I have a son and daughter both with HD, only two years apart in age, and both are very different.  My objective here is to help one another the best we can, to share some of our stories, insights and suggestions, all in a non-judgmental fashion.  No one knows our particular situation but we are all connected in our love for our children and our desire to keep them safe and happy while we wait for our cure.

I'm hoping this blog reaches as many moms as possible so please pass the word. If there are questions you have that someone may have dealt with before you, let us know.  If you have found something that works well, let us know.  If you need to vent because things aren't working for your loved one, let us know.  I want this to become a forum for advice and compassion so let's reach out to one another and help each other out.