Hello Im an Occupation Therapy Assistant Student in Farmington, NM and I am having to do a report on Huntington's Disease. Part of my project requires me to participate in a diagnosis-related online support group or message board such as this one and discuss the difficulties and adaptations of this horrible disease with persons living with the illness, or the caregivers of said persons. I have been reading as much as I can on HD but I need to hear a first hand account to get an idea of what persons with, or you guys, go through. I know I can never truely grasp the effect this has on individuals and their families without experiencing first hand, but as the closest organization to me in over 4 hours away, I would love to hear it from you all. Please write back to me if you have any insight to the daily difficulties (ANY) and Adaptations you have experienced with HD.
Sincerely,
Chanelle Reynolds
OTA Student at San Juan College
tcreyn@gmail.com

You wrote a very nice post, and introduced yourself very nicely to us, better than some students for sure. I for one appreciate that, but I'm trying to figure out, occupational therapy has to do with a persons job, and there is no therapy for hd in relation to jobs. There is no rehabilitation to help someone with dementia keep their job, as compared to someone with a physical disability, for instance, someone in a wheelchair, how to make their job easier and more accessible for them, so I wonder if you can explain why you were asked to study hd in this regard, it just doesn't make sense to me at all

Occupational therapy

An occupational therapist can assist the person with Huntington's disease, family members and caregivers on the use of assistive devices that improve functional abilities. These strategies may include:

Handrails at home
Assistive devices for activities such as bathing and dressing
Eating and drinking utensils adapted for people with limited fine motor skills

Isn't home therapy a physical therapist? I'd think occupational has to do with the patients place of work, their occupation.

hmmm, thank you janigirl, after your post I decided to google the difference between occupational therapy and physical therapy, and it looks like you are right, there's more to occupational therapy than I thought, interesting, I learned something new tonight

Hey Barb....I am an occupational therapist. It is a confusing name derived from our "occupations" as being all the skills we use to get through our daily lives. These fall into 3 categories..WORK, PLAY, and LEISURE. Meet any OT, and you'll hear how we are always having to explain the difference between OT and PT, and between OT and Vocational Rehab, which is the job focused therapy.

I had worked home care for the last 15 years before taking the role of my husband's caregiver. PTs and OTs (as well as Speech Therapists ) all work in many levels of care. The OT role for helping people with Huntington's disease is in looking at the patient and the environment to see what adaptations or different approaches can be applied to your daily living skills (self care, dressing, bathing, cooking, medication management, mobility in the home, caregiver training, leisure and cognitive skills to name a few.) This might include instructing caregivers to provide the best level of assistance, balancing the patient's abilities with their assistance to maximize independence, function and safety.

April is OT month in the US. If you are interested in learning more, www.aota.org has a lot of great information.

Channelle, I'd be happy to answer any questions from an OT or a caregiver's standpoint. In progressive conditions such as HD, the therapist's role is to facilitate continued function through different approaches and adaptation. My husband is at mid- to early-late stages. He is still mobile, but depends on a wheelchair much of the time due to frequent falls. ADL's are about 50%. With Huntington's, your goal is not to regain full independence. Recently lost strength can be regained, but coordination skills are consistently inconsistent, so if a caregiver is available for instruction, your role will be to teach the "best fit at the moment" approach. There are some days when my husband requires closer contact while walking, some days he is more steady. There are some days he can button his jeans independently, some days I need to assist. Feeding varies by day and by consistency as well (strange example here, he can feed himself ice cream just fine, but spooning a cup of yogurt is a mess...)

Balancing the best fit level of assistance is crucial for his self confidence and pride in his performance. You are always using your skills of observation to offer the appropriate level of assistance.

I, and many other caregivers relate that task initiation is decreased as the disease progresses. In our case, hubby is able to participate in leisure tasks (playing cards, computer games, etc, but needs me to suggest or sometimes prod him to do it. On a day when I'm exhausted, I might not be as aggressive as I should to prod him to be active. We all have good days and bad.

Mobility wise, we have chosen to use the wheelchair at home and in the community. He had a power chair for a while, but he was running over too many toes, so I discourage it's use for other's safety. We do have grab bars in the bathroom, including replacing our towel rack with a grab bar, as he was instinctively reaching for it for support. 2 bars in the shower/tub area, 1 outside the tub which doubles as a towel rack. I always used to tell my patients, "You can use a grab bar as a towel rack, but you can't use a towel rack as a grab bar." He reports feeling very secure standing in the shower with my standing by. He was not ready for a seat yet (he is only 46) and his standing endurance is good enough, so we declined that.

I help with the shower, shaving and oral care when I noted he was less than complete in his performance. Not only was he missing whole parts of the body, his coordination was not giving him the effective "scrub" needed to really clean his hair etc. We use an electric toothbrush. I floss him. Especially when aspiration is a risk, oral care is of utmost importance, so we do not leave that to chance.

I use backward chaining to help him dress, get him started, then allow him to finish it off. I help pants over feet to avoid his frustration, as this was often a place where he would get hung up. I observe to see if he is fastening his buttons and ask if he wants assistance. He still wears blue jeans...his preference, not mine, but I defer to his preference.

I have adapted feeding to an inner lip plate, bent fork and weighted spoon. I cut his meats for him. I use plastic cups for drinks, as they are lighter and easier for him to bring to his mouth. He is on thickened liquids, so we use Simply Thick (gel thickener) for his liquids. It mixes quickly and easily, and it doesn't thicken over time. This also makes it easier for him to get himself a drink if he chooses.

He did get a feeding tube during his last hospitalization, but he has strengthened back to all nutrition by mouth. We are just flushing it daily. We will not take it out unless there is a problem with the tube or the site..

I fill a pill box weekly and he takes the daily box to self medicate at his scheduled times. He is very rigid with his schedule and keeps track of this himself. The only time he misses a dose is if he sleeps through it. In that respect, I have it pretty easy.

I manage all the household money management, maintenance and cleaning. For a person with Huntington's living alone, these areas can be very challenging and the first indication of whether or not that person cn suceed independently in the community.

Good luck on your report. I'll send this along on email as well, but posted it here, as it might be helpful to someone else on the board. No sense in typing it twice..

Have a great day everyone!
Patty

Hi Barb,

Thats interesting how we all interpret "occupation." In actuality, "Occupation" is not just about work related jobs! Its really about the person as a whole.

What is the Occupation of a stay at home mother?

She cares for her children, cares for the home, cares for herself, and possibly has some enjoyable moments to herself such as gardening or walking her dogs. So if she gets injured or is "temorarily out of service" Occupational therapy goes in and finds activities that are meaningful to her to get her back to her prior level of function of independence.

So we toilet train, do hygiene, help with feeding tasks, writing, motor abilities, all aspects that would get functional independence in activities of daily living back to the individual.

So YES we do help people get back to their "job" and work with quite a bit of workmen's compensation, but we also help with the "occupations of life tasks." Its very rewarding.
Thanks
Chanelle Reynolds

Thanks Janigirl for that. I've been busy with school and just barely got back to the conversation, late apparently.

The more Im reading into it Im seeing that Occupational therapy, although helping in all areas, really focuses on basic ADL independence, which we dont realize its importance until its not as easy as it once was, and safety, and preventing contractures.

I liked patty c's "best fit at the moment" concept. It seems that is repeated in most all therapies as the "just right challenge."

Patty c as a therapist, spouse, and caregiver I can only imagine the stresses that you have to go through. You seem like an amazing person for the care you give your husband. I am glad you explained about the different thickening products, and interesting challenges with feeding himself.

Are you involved in many forums such as this? If so, do you join them for self support, or to help others?
Thanks again,
Chanelle Reynolds

HI Chanelle.

This is the primary HD related forum I participate in. I have often been on both the offering and receiving end of advice. None of us are perfect and we take each day as it comes. I am now working on finding endeavors I can do from home to supplement our income. The tough thing about being a therapist is I can't seem to get the patients to come to my home..LOL. I am training for medical transcription. It seems an easy fit, as I already speak the language. I am also considering creating a caregiver blog for all caregivers. My special areas of interest as a therapist were geropsych and brain injury. It would be quite a time before I could turn that into a marketing and income opportunity. Not looking to break the bank, just support my family.

Good luck with your studies.
Patty