Hello everyone I work for a film production company and I'm doing some research about Huntington''s Disease for a film that is currently being developed. A character in the film will have HD. If people could answer the questions below, it would greatly help

1. How aware is someone with HD of their own illness? Are they self-aware or do they try to deny it?

2. (From an actors point of view) At what point do they know they have HD? When do they know they are behaving badly for example.

3. What are family members trained to do to care for a person with HD?

4. How fast is the process from not knowing they have HD to knowing for sure?


Thank you very much in advance for any responses

Good and difficult questions.

This forum is a good place to start gathering data and personal stories about the everyday struggles confronting people with HD. Marsha Miller and Steve Ireland who oversee The HD LIGHTHOUSE are good people and respected professionals within the community.

Your research department may wish to contact a medical institution involved with HD research and care who will be able to speak to your questions. Locally, The Baltimore Huntington's Disease Research Center at John Hopkins University where Dr. Ross and his staff can be a resource for what is going on relative to research in the HD community and Georgetown University in Washington DC which has started an initiative reaching out and caring for pHDs, or people with HD.

From an actor's view point, time spent at a facility that provides long term care to pHDs, such as Laurel Lakes Nursing Home and Rehab Center in Lee, MA, will enable them to observe the physical, cognitive and psychological manifestations of HD.

Advice from the south of Maryland, be factual and keep it honest.

I care for my husband with HD. He is 46 and in later-mid-stages. We care for him at home. I have 2 school-aged children who are at risk. My husband was adopted, so we did not have other family members to "show us the ropes" so to speak. I have my own opinions and experiences to tell you about.

1. How aware is someone with HD of their own illness? Are they self-aware or do they try to deny it?
Each person with HD presents differently. Some will have physical symptoms first, some cognitive, or personality changes. It is very common that the person will not be aware of these changes as they are emerging. Anosognosia is a medical term for decreased awareness of your own symptoms. It can be misconstrued as denial, or found together with true denial. In my husband's case, he had little awareness that the reason for losing job after job was likely his poor performance, or that the reason he was getting into road rage arguments and arguments with me and others was because he had a short fuse. Our marital problems were because I knew too well how to push his buttons. Sadly the blame was always on me and the apologies never came. His physical symptoms came later, and were exacerbated when he was drinking. We were separated at the time and he was living with a brother. His family contacted me telling reports of strange walking behaviors, falling and agitation. They asked me to help get him to a medical appointment. I worked at a hospital at the time. The first neurologist he went to (mis)diagnosed him with Tourette's syndrome. Looking back, I realize it is because Rus was only aware of his walking and falling, his verbal tics. Given that he went to the appointment alone, he did not report any of the cognitive limitations or aggressions he was having as an associated symptom. We went together to another neurologist about 4 months later. Given that I was able to report some of the cognitive and behavioral symptoms, this doctor (who was also more experienced with Huntington's) was pretty sure it was HD. He sent Rus for an MRI and the blood test for confirmation. He was diagnosed at age 40 with a CAG count of 43. Looking back, I suspect some of his cognitive and behavioral symptoms were emerging as early as 36, but we never knew to suspect Huntington's, nor did we have family members around to clue us in. I am told by many family members I have met that the family around the person often know they are becoming symptomatic long before the person becomes aware.

2. (From an actors point of view) At what point do they know they have HD? When do they know they are behaving badly for example.
My husband was poorly aware of his bad behavior. He went through a period of time where it was unsafe for him to live with me and the kids because of his aggressions. The police were frequent visitors.

3. What are family members trained to do to care for a person with HD?
Families are trained to whatever degree they are willing to reach out to the HD comminuty and network with other HD families. There are no "programs" or quick guides to caring for a person with HD, although there are some useful publications and networks like the HDLF and HDSA. The neurologist will manage the medication regime, and may have social workers and counselors on staff to help with access to resources. Many people with HD have watched parents or grandparents, aunts, cousins, etc. decline with the disease. A spouse marrying into the family would need to be strong to adapt to the caregiver role, not having grown up with it. I anticipate that my kids will be good caregivers later on because at 10 and 11, they have already watched me in that role, and helping their dad comes naturally to them. The caregiving role tests a marriage more than any other challenge possibly can.

4. How fast is the process from not knowing they have HD to knowing for sure?
The only time you know for sure is if you test positive. There have been many people on this forum who know they are at risk, are noticing tremors, forgetfulness, and other suggestive symptoms and are CONVINCED they have the gene. They test, and the result comes back negative. Stress can play awful tricks on our bodies. It's called symptom hunting. I'll admit that every time my children stumble, or throw a fit, or have difficulty in school I worry if something is "happening" to them.
I'll leave that one for someone else to answer. During my husband's pre-diagnosis period, everyone knew something was wrong with him-except for him.

I hope you get some good answers here. Feel free to PM me if you would like to talk further. Rusty likes to be involved with education and awareness of HD. He would gladly speak to you all as well.

Good luck.
Patty

Patty's reply was extremely good, mine will not be as eliquent

1. How aware is someone with HD of their own illness? Are they self-aware or do they try to deny it?
For my Wife, she was raised in a HD family with multiple uncles, aunts and cousins effected. When we met in her 20's she told me of the possibility of her "going crazy" and if it occurs she would "take care of it" like the majority of her male family members. Her father took his life after his mother passed from HD.

We cared for her younger sister for nearly 30 years till she passed. We were aware of her older brother being institutionlized (he left home right from HS and moved to the far coast). a couple years ago, her baby brother, who was not raised exposed to HD, took his life after it is believed he was informed by doctor.

Ever since I met her, the wife has always been eccentric, but about 15 years ago things went crazy. about 5 years ago her movements became very obvious. I have quit work to stay home with her and walk beside her to catch her and when out, she rides in a wheel chair. She is completely unaware that she has HD and I protect her from anyone informing her.

and event that confirmed this to me a year ago, was that she fell and we went to the hospital. the diagnosis was subdural hematoma with an expectation she would not make it. When asked about advance life saving procedures she was insisting they do all they can to save her. During the discussion the Dr slipped and mentioned HD, her reply was she did not have HD and IF she ever did she would take her own life. even the Dr was surprised at her response.

So will she ever be aware?


2. (From an actors point of view) At what point do they know they have HD? When do they know they are behaving badly for example.

Please referance the above. again for my Wife, the strange behavoir became normal. even for some of the gradual changes I began to accept them as normal. this could be things like cleaning and house keeping rituals. violating one of these rituals would result in a crazed scream tantrum. Thus the behavoir is the most unaware symptoms.

3. What are family members trained to do to care for a person with HD?

TRAINING! what would that be?
The Wife's sister was diagnois prior to the genetic testing. the advice provided by Duke back then was to keep her safe with no prescribe medications. She was able to stay at home with only medications the last year or so for muscle pain till she was unable to communicate nor move around on her own. one just learns how to prevent the rage events. with the flood of information now due to the internet, the BEST publication I found was the "Physicians Guide" which provided information about how to help with eating.

the medical does not seem to understand the details of dealing with HD. for example how are you going to make a home safe from fails by changing furniture when moving one item will put the Phd into a rage

4. How fast is the process from not knowing they have HD to knowing for sure?
From my experaince, the knowing does not happen. It is only by others forcing them will they realize and once that happens the results can be morbid. Again another one of the details the medical proffession does not get. recall the wifes baby brother, who had no physical symptoms, possibly some emotional/cognitive, response when he "thought" he might have HD.

sorry for the rambling, but hope this provides some insight. Hopefull a rememberable charector will get HD some recognition

As stated, everyone is different. The best advice I think is to go to a facility. Talking to phd's and caregivers will give a really good insight. We all present in similar but different ways. Acceptance is not always an easy thing to digest.

My story is different from many and similar as well. I don't think anyone will be exactly the same from my reading. You can learn a lot on the forum but please by genuine and authentic with the information you gather.

You can see how I found out here....[www.hdlf.org]

I'm not good with links. If this doesn't work search for "My HD Journey"

Good Luck

A question for you Jasperematt. I am curious how HD was chosen as a disease to follow. It's good that someone did, but how did it come to be the character's disease since it is not well known and doesn't get the publicity so many others do.

Just curious,
Mike

My grandmother was never diagnosed correctly, it was only decades after he death when my uncle ( her son) become ill that the connection was made.

I keep wondering what was going through her mind. She must have thought she was going crazy. The doctor said that there was something wrong with her ankles ( because she fell over a lot) and they had to break them and reset them. But it didn't work because that wasn't what was wrong with her.

A lot of of people thouoght that she was an alcoholic, which wasn't the case. It must be so horrible to never actually know what is wrong with you.