Huntington's Disease

Nurses General Nursing

Published

Merry Christmas All! Hope you and yours are enjoying your Holiday.

I have a project due when we get back from Christmas break. Yeah, wonderful, all other teachers actually gave us a break. My clinical instructor decided on Friday that I was going to do my teaching/education project the day we get back 1/3/08! I'm the only one in the entire clinical group with the project due the week we get back!! AHH!! Anyway, she decided that mine would be on Huntington's Disease.

I have done a search on it but I keep coming up with the same info. I need to have a teaching/education presentation. Its supposed to be as if i were teaching a patient and their family about the dx. Its supposed to be about 10 minutes long. And I need "visuals"

Do any of you have any experience w/Huntingtons Disease? Is there anything in particular I should add to my presentation? I'm not asking for anyone to do my project, just point me in the right direction. Most of what I've found is geared more toward the research aspect of it and the info is more for health care professionals, nothing really geared toward the pt.

Any help would be appreciated. I put "Project typed out and display made for me" on my Christmas list but I guess Santa had a hard time finding info too. :lol2:

Up Vote Up Vote ×
Specializes in Medical and general practice now LTC.

not sure if this will help

http://www.patient.co.uk/showdoc/40001244/

http://www.kumc.edu/hospital/huntingtons/

Up Vote Up Vote ×

Off the top of my head, a couple things that you could cover would be nutrition and safety. Because of the chorea, Huntington's patients are constantly moving and they burn through the calories. In later stages, swallowing can be affected. Nutrition is of utmost importance. Falls are another big concern as the disease progresses. And what about driving? When do you know when it's time to give up the keys? This is such a terrible disease. Another thing you could talk about is the availability of support groups, if there are any in your area. These can be invaluable for both patients and their families. And of course, genetic counseling is a big thing with this disease. That alone could take up all your 10 minutes. I hope that gives you some ideas.

Up Vote Up Vote ×
Specializes in Family Nurse Practitioner.

Advanced directive education? With the outcome of this horrible disease that would be something I'd think would be important to cover early.

Up Vote Up Vote ×
Merry Christmas All! Hope you and yours are enjoying your Holiday.

I have a project due when we get back from Christmas break. Yeah, wonderful, all other teachers actually gave us a break. My clinical instructor decided on Friday that I was going to do my teaching/education project the day we get back 1/3/08! I'm the only one in the entire clinical group with the project due the week we get back!! AHH!! Anyway, she decided that mine would be on Huntington's Disease.

I have done a search on it but I keep coming up with the same info. I need to have a teaching/education presentation. Its supposed to be as if i were teaching a patient and their family about the dx. Its supposed to be about 10 minutes long. And I need "visuals"

Do any of you have any experience w/Huntingtons Disease? Is there anything in particular I should add to my presentation? I'm not asking for anyone to do my project, just point me in the right direction. Most of what I've found is geared more toward the research aspect of it and the info is more for health care professionals, nothing really geared toward the pt.

Any help would be appreciated. I put "Project typed out and display made for me" on my Christmas list but I guess Santa had a hard time finding info too. :lol2:

I have a cousin who died from it. I have another cousin in the late stages of the disease. It isn't in my genetic line thankfully.

Some topics to include in your presentation could be:

genetic testing and counseling...

planning for LTC needs....

Dealing with grief and loss....

Hope this helps....

Up Vote Up Vote ×

I have cared for pts w/ this disease. They suffer terribly. I think a lot of teaching should be related to resources for these pts to help them with with ADLs, and ways to ease their suffering.

Up Vote Up Vote ×

This semester, we did Huntingtons Disease. I believe patients get chorea movements because of the excess of Dopamine. Since the is no cure, the main goal is to encourage patients to perform as much ADLs as they can and assist them as needed. I have never see a patient with this disease.

Up Vote Up Vote ×
Specializes in icu, er, transplant, case management, ps.

I had one patient in the late stages of this horrible disease. And one who successful committed suicide after learning that she was the forth member of her family to be diagnosed with this disease. The only teaching that I feel is appropriate is genetic testing and advance directives and health care proxy. The genetic testing gives the family a head's up and a chance to determine the quality of life they want. The health care proxy gives them the opportunity to let their proxy and physician to know there wishes. And to plan ahead. This is a terrible, life altering disease that ruins the lives of the family members who do not suffer from it. And provides, for most, a horrible death.

I am Roman Catholic and generally do not support intentional suicide. But a person suffering from Huntington's, is distended to die a horrible, linger death. And in their case, I support mercy killing and suicide.

Woody:balloons:

Up Vote Up Vote ×

WOW! Thank you all for the info. I have limited knowledge of this terrible disease. My clinical pt has a dx of HD and since its not a common thing to see, that is why my instructor decided for me that this was my topic. I was planning on doing it anyway when I pulled out the Tabers and saw the s/s of it. Very interesting although very sad.

Tomorrow is the day I'll start pulling up the info.

Any suggestions as to what visuals to use for my pt teaching? would one thing be better than another? I'm thinking of putting support group website addresses, physical addresses etc on it..not to sure what else I want to put on it.

Thanks again for all the info..its truly appreciated.

Up Vote Up Vote ×
Specializes in Community, OB, Nursery.

I went to highschool with a girl who had it, and it was so sad to see her go from perfectly normal our sophomore year to barely able to walk as a senior. Falling all the time, very uncoordinated. Her dad had died from it when she was in her early teens, and she was very young to have it strike. Her brothers chose not to have themselves tested. They didn't want to know.

Can you imagine the agony of her mother....they were such nice people.

What a horrible disease.

Up Vote Up Vote ×
Specializes in LTC/Rehab, Med Surg, Home Care.

A thought for visual aids...adaptive equipment, resources (could do a teaching brochure) where to get adaptive equipment such as eating utensils, and clothing issues, such as snaps vs. buttons, clothing without zippers, slip on shoes--stressing non-skid, of course.

Make this generation the last generation with HD!

Up Vote Up Vote ×
+ Add a Comment