Huntington's Disease

jolleygirl · Dec 26, 2007

I have taken care of a few patients with Huntington's, The first pt, a female was totally bed ridden.Hygiene, skin, nutrition were key for her. The other two were men, one an older gent that his wife tried to care for at home until he became to much to handle. He was a large man and became aggressive to care givers, very hard to handle even in the nursing home. The other gent was 29 yrs old, had toddler daughters, and his wife had left him. His brothers also were showing s/s of the disease. His problems, aside from all the other ones I mentioned, he was angry over the loss of his family, the loss of his cognitive skills, he was so unsteady on his feet that several times a week he would fall. He also became very aggressive to staff. It is definately one of the most heart breaking diseases I've ever seen, and of course it is genetic. Good luck, its really very intersting topic, I'm sure you'll do well.

Daytonite, BSN, RN · Dec 26, 2007

did you check the consumer resources on medline plus (http://www.medlineplus.gov/) or the consumer information websites

on https://allnurses.com/forums/f205/medical-disease-information-treatment-procedures-test-reference-websites-258109.html? they will give you not only information about the disease, but will be good guidelines in how to set up and organize your project. you should also check the appropriate institution on the national institute of health (nih) website (http://www.nih.gov/). medline plus should link you into it. there are usually a lot of teaching materials posted on the nih sites.

EricJRN, MSN, RN · Dec 26, 2007

Make sure you look up the work of Dr. Nancy Wexler, who is a neuropsychologist and one of the primary researchers into HD.

pagandeva2000, LPN · Dec 26, 2007

There was a documentary about this disease on the Discovery, I think. It was horrible. A woman's husband died from it first, then, her two sons simultaneously got affected, and were admitted together to share a room in a nursing home. The mother was so devastated by watching her two sons suffer that she brought in a gun, shot them both to death and then called the police. If I remember correctly, she had to do some time, but not as much as to be expected after reviewing her history. What a sad, sad disease.

Elvish, BSN, DNP, RN, NP · Dec 27, 2007

I remember seeing that program, deva.

SunnyAndrsn · Jan 3, 2008

Not sure how long you'll be working with this pt. once clinicals start again, but I had a few more thoughts:

-Dr. Martha Nance at HCMC in Minneapolis is working with end-stage HD pts. and the need for palliative care. Try looking her work up. She's amazing.

-Tetrabenazine is a medication used for hyperkinetic movement. Clinical trials were successful in the US, but the FDA still didn't (won't) approve it. It's used in Europe and Canada with good success. It's SPECIFIC for HD.

-Although communication becomes difficult for HD pts, techniques similar to those used with AD pts are helpful. Ask concrete questions, give either or choices. Allow enough time for the pt. to answer. If you can get your hands on a copy of the fall 2007 Marker (HDSA publication) do so, as it has great info about communicating with HD pts, as well as an herbal cocktail that is showing anecdotal promise.

Fairemaid · Jan 3, 2008

Unfortunately, I'm very familiar with Huntington's as it runs in my family. I would like to add a few things that I don't think were covered in any of the posts, though they may have been covered in some of the off-site info. Since this disease generally doesn't show signs and symptoms until the pts are middle aged, it is important for family members to make sure they have a durable POA made out and also HCP, and do whatever they can do to protect their assets. Especially important in families where age of onset is lower. Get the house out of pts name along with any bank accounts.

My other points would deal with physical safety of the pt, assist w/ ambulation, switch to wheelchair when needed, pad the floor next to the bed (we have used a gym mat bought at sporting goods store).

As swallowing becomes impaired, need for dysphagia diet, pureed, thickened liquids, and calorically dense food or drinks.

Fluoxetine has been helpful to decrease the fear and crying episodes, in my family member. There are no meds specifically for Huntington's.

Give the pt time to answer questions, also time to move if asking them to roll over or sit in the chair, there is a noticeable lag, sometimes.

Good luck at clinical;)

Rebecca

CT Pixie, BSN, RN · Jan 3, 2008

Unfortunately, I'm very familiar with Huntington's as it runs in my family. I would like to add a few things that I don't think were covered in any of the posts, though they may have been covered in some of the off-site info. Since this disease generally doesn't show signs and symptoms until the pts are middle aged, it is important for family members to make sure they have a durable POA made out and also HCP, and do whatever they can do to protect their assets. Especially important in families where age of onset is lower. Get the house out of pts name along with any bank accounts.
My other points would deal with physical safety of the pt, assist w/ ambulation, switch to wheelchair when needed, pad the floor next to the bed (we have used a gym mat bought at sporting goods store).
As swallowing becomes impaired, need for dysphagia diet, pureed, thickened liquids, and calorically dense food or drinks.
Fluoxetine has been helpful to decrease the fear and crying episodes, in my family member. There are no meds specifically for Huntington's.
Give the pt time to answer questions, also time to move if asking them to roll over or sit in the chair, there is a noticeable lag, sometimes.
Good luck at clinical;)
Rebecca

So sorry to hear of your family's history Rebecca . Actually, I did a rough draft of the presentation and the first thing I mentioned was getting "affairs in order" ie: advanced directives, POA's etc.

The next topic I put was safety..giving all the suggestions you mentioned and lots others. Then I went to meds (my pts is on Fluoxitine along with a slew of other psychotropics all that were mentioned on the sites given and ones I found)

I basically focused on pts safety in the home/community and the choking/aspiration risks.

Thank you for your suggestions. Now I'm glad I put those main points in.

CT Pixie, BSN, RN · Jan 20, 2008

Just wanted to send a big thank you to everyone who responded! I took a bit from everyone's suggestions and I did my project on the day we got back.

I got my grade back this past Friday. I got a 98!! I lost 2 points because she claimed I only used one refrenece (I guess she didn't see the full typed page of all my refrenece sites, books etc) I haven't gotten my typed project back, only the scoring section she had so i guess I won't know what was missing until (if) I get it back. Which I think I should as I worked very long and hard on it. Its mine, I want it.