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  • Writer's pictureSharon McClellan Thomason

First HIPE Day Answers Questions from Huntington’s Disease Community

Have you ever wanted to sit down and just talk to a healthcare professional who is actually knowledgeable about Huntington’s and Juvenile Huntington’s disease? Maybe you’ve wanted to ask, “How do I know when it’s time for my loved one to stop driving, and how do I tell him/her?” Or maybe you have questions about feeding tubes or physical therapy or medications for psychiatric and behavioral symptoms. Maybe you want to know more about hospice or the difference between palliative care and hospice. How do you know when it’s time for those services?

People in the HD/JHD community have so many questions, but often have nowhere to go for answers. We end up frustrated with the lack of resources and the dearth of credible information. We feel isolated and alone, burdened with many unmet needs.

That’s why Help 4 HD International began offering our HIPE (Highly Interactive Participant Education) Days in March of this year, in Sacramento, California. The brainchild of Katie Jackson, president and CEO of Help 4 HD, HIPE brings a panel of experts to an audience of HD/JHD families and others interested in the disease. The participants come up with fictitious crisis scenarios like the questions above that might come up (and may have actually occurred) in HD/JHD households. The scenarios are written down, handed to Jackson or another facilitator, and then read one by one to the panel. The experts on the panel problem-solve, often identifying local resources that can provide help, and sometimes participants offer answers as well. It’s a way to get questions answered without identifying the people who are asking the questions, while also respecting and protecting the anonymity of the HD/JHD patients.

The sessions are presented live on Facebook, with as many as 2,000 viewers, and are also posted on our Vimeo channel. In addition to the Sacramento HIPE Day, we’ve hosted HIPE Days in Kirkland, Washington, and Atlanta, Georgia. Our next one is in Cedar Rapids, Iowa (August 26), followed by Houston, Texas (September 30) and our annual symposium in Tampa, Florida (October 21).

This series of articles brings to you the questions and answers from all of the HIPE Days, as transcribed by Katrina Hamel, vice president of operations at Help 4 HD. We hope you find this information beneficial!

This particular article includes the first three questions and answers from the Sacramento HIPE Day.

Question #1: What do you do when your loved one with HD loses their job from HD and cannot afford to pay rent in the community where the rent is very high?

Are there any options or resources for rent assistance?


First thing, if they (your loved one) were working and got fired from their job or got laid off or they quit because they weren’t meeting expectations, you should look into disability. [Look into] whether they have supplemental disability that they maybe got through their employer or state disability, if they paid into that system, or Social Security Disability [SSDI] or Supplemental Security Income [SSI]. So that’s another way to get some more income into the home; all of those things are not super easy to navigate, so if you’re in that situation, of course call me, and I have lots of information, and I can give you all of the details of all that.—Lisa Mooney, social worker at UC Davis HDSA Center of Excellence, Sacramento

Note: SSDI and Medicare are federal programs; SSI and Medicaid or MediCal are state programs, and laws for those will vary from state to state.

Question #2:

Can one get unemployment in that situation? (Asked by Dr. Vicki Wheelock, UC Davis HDSA Center of Excellence)


Part of that is yes, if you paid into the system; if it’s where they’re unable to return to work, then it would be disability. It’s basically the same pot of money, unemployment and disability. As far as rent assistance, each county has a Housing and Urban Development [HUD] branch of their county government. Now, I’ll tell you a lot of them have a long waiting list – that doesn’t mean it’s impossible; there are ways to sort of negotiate. If you’re in a rented space, and you just lost your job, always talk to the landlord and/or the home supervisor to see if you can strike a deal because of financial hardships at the moment in time. Things are always negotiable; most things are not set in stone, so always ask questions; the worst they can ever tell you is “no,” and then you are in the same situation you were in before you asked. No harm, no foul. As far as rental assistance, there’s really not a lot of resources. There is like Section-8 housing for low-income persons and things of that nature. Most counties have two- or three-year waiting lists, which are not helpful, but what I would say is if you’re in that situation, definitely reach out for help. Start calling people, seeing what options are available to you. I of course can be one of these persons that you call for help and support and [I can] help sort of problem solve the details of your situation.—Lisa Mooney

Note: Unemployment benefits also vary from state to state. HUD is a federal program administered by each state.

Question #3: How can a caregiver have a getaway? What if something happens to me, and I can’t care for my loved one anymore?


So what we tell families is whether you have Huntington’s disease in your family or whether you don’t, we all need to do future planning. We never know what tomorrow holds for any of us, so it’s important that you have plans in place to take care of your family members if you are sort of are the primary breadwinner in your family or you are the primary care provider, so there is a lot of future planning that sort of needs to go in process, especially with Huntington’s disease. Caregivers aren’t saved from death; just like Huntington’s disease, or me or Dr. Duffy or Dr. Wheelock, we’re all going to die. So we all need to prepare for that, so you need to do things like advanced health care directives, and that’s for everybody, whether you have Huntington’s disease or not. We need to make health directives so that we have a power of attorney in place so that that person can make decisions for you in the event that you are unable to [make decisions for yourself]. You need to look at your finances, make sure that you have a second person, a person you trust, on all of your finances, your bank accounts, and things of that nature. Make sure your loved ones maybe have a binder on a shelf that has all of your information about what accounts you have, where they can get access to them, what your passwords are – I know you’re not supposed to share those – but you should with your loved ones . . . those types of things ’cause in the event of an emergency, people will need those. If you are in an accident, it’s important to have a plan B. You always need to have a plan B, so if you get in an accident, or if you have surgery, or something of that nature, you need to make sure that you have arranged for family and/or friends to come help you out and support you in that situation and help care for your loved one if you’re a primary caregiver. Those all need to be done beforehand so hopefully you have some leeway like in your surgery situation. If it’s an emergent situation, sometimes if you’re at a hospital, hospital members can help, but definitely always have a family member that you can call or a friend (it doesn’t have to be family) or a friend that you can call that can sort of support you in that situation.—Lisa Mooney

Note: My attorney, Victoria Heuler, in Tallahassee, Florida, advised me to have an alternate guardian assigned for my son, since I am his plenary guardian. There are forms that have to be filled out by the plenary guardian and by the alternate guardian, then filed with the court. Guardianship laws are also going to vary from state to state.

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