Surviving the Holidays

Surviving the Holidays

  by Lauren Holder

Happy holidays! ‘Tis the season to be stressed. At least that’s how it feels for me, so I decided to do some digging this year and find some tips for surviving the holidays.

I found some really great articles about caregiver tips for the holidays, and I figured I would share my top five tips with you.

  1. Be flexible! There is no such thing as perfection. I think in every article I read, it notes to not expect everything to go right or to be perfect, because it won’t be. So we need to be flexible and willing to adjust with the issues and changes that arise.
  2. Make a holiday calendar and to-do list (Beal, n.d.). This is helpful to both the caregiver and the person with HD. I know for my father, it helps him to know what to expect, so to speak. If he can look at what’s coming up, he prepares a little better mentally; if we spring it on him the day of or the day before, then he’s unwilling to go because it’s a last-minute change in his routine. It also helps my mom because she knows what she needs to prepare for him (and for her) before the event.
  3. Start new traditions – This one has to be my favorite! The article from AARP says, “Instead of focusing on losses and what you and/or your loved ones aren’t able to do this year, try doing something new. If your care recipient has trouble getting around, drive through a holiday light display or watch a holiday concert on TV. If you can’t make it to a holiday gathering, have a video chat. Are your loved ones unable to participate in decorating this year? Invite a friend over to help, with your loved ones nearby to watch and cheer you on. Start a home holiday movie night tradition — or watch old home movies so everyone can participate.”(10 Tips for Caregivers During the Holidays, n.d.)
  4. Have a safe space. If you have a big get-together at your house, or you’re going to someone else’s house for a get-together, establish a space for you or your loved one to be able to take a break from the noise and commotion. Maybe it’s the patio outside or an empty bedroom, but have somewhere to go to relax for a minute in case you or your loved one needs to.
  5. Ask for help! This seems to be another one that can be found in EVERY article about surviving the holidays. Ask family and friends to help with cooking or wrapping or doing the shopping. This seems to be the hardest one to do, but it’s the most necessary, because we can’t survive the holidays alone.

If you would like to look at some of the other tips for surviving the holidays, you can visit the following links:

https://www.aarp.org/caregiving/life-balance/info-2018/holiday-stress-tips.html

https://caregiver.com/articles/surviving-the-holidays/

http://www.benrose.org/SuccessfulAging/sa_0511.pdf

Works Cited

10 Tips for Caregivers During the Holidays. (n.d.). Retrieved from AARP: https://www.aarp.org/caregiving/life-balance/info-2018/holiday-stress-tips.html

Beal, E. (n.d.). Surviving the Holidays: Strategies for Caregivers. Retrieved from Benjamin Rose: http://www.benrose.org/SuccessfulAging/sa_0511.pdf

Lauren Holder is the program director for “Help 4 HD Live!”, the first online radio show dedicated to the Huntington’s and Juvenile Huntington’s disease community.

 

 

 

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I Never Thought It Would Get Better, Either

I Never Thought It Would Get Better, Either

By Leah Amberly Barker

So, this is hard for me to write about. Like really, really hard. My fingers literally try to curl up every time I go to hit a letter on the keyboard.

I need you to hear me out, though. I am writing this for you. The you that is hurting, feeling hopeless, worthless, unloved, alone, and stuck in one place. Hear me out.


A little more than a year ago, I sat alone in an old motel room, rolling a bottle of pills in between the palms of my hand. I can’t even recall the specific events that led me there, but I do remember exactly how I was feeling and exactly what I was thinking.

This will be my first time putting all of those emotions in one place. Or most of them, at least.

The most distinct emotion I remember was hopelessness. I couldn’t see a future in anybody or anything. Usually, if I’m depressed, I’m able to rapidly search my mind for something lovely to cling onto, and eventually, it helps me pull myself out. This time, I couldn’t find anything to cling onto at all. Everything in my head was just … black.

I sat on the musty motel mattress for hours, listening to music I remembered as being my favorite and trying to justify what I was about to do.

I remember thinking that having HD was going to ruin my life. I wanted to have complete control over my brain, and just knowing that I would have to lose myself someday left me feeling like I wasn’t a legitimate human being. And it wasn’t even myself I was mostly worried about … it was the fact that in losing myself, I would probably end up hurting the people I loved the most.

My grandfather was the sweetest man I’d ever met until he got sick. When he did get sick, I’d hear stories about how he’d threaten my grandmother and throw things at her. He began to suffer from extreme paranoia, convincing himself that my family was plotting to kill him. I never got to see him during his rapid progression into HD, but I remember thinking that I was terrified to see him when we finally got to visit. He was really sick by that time, unable to care for himself, twitching, falling, mumbling, and unfamiliar. He wasn’t the big, strong, caring papa I remembered, and the last memories I have of him are the suffering circumstances that HD threw him into.

As horrible as it sounds, I was terrified of turning into him. I have so much love to give, and it crippled me to think that I might degrade into a paranoid, angry, abusive stranger … as unintentional as it may be. I didn’t (and if I’m being honest, don’t) want to be a burden to anyone, emotionally or physically.

And if anybody loves love, it’s me. Sitting in that motel room, I thought about how badly I wanted to fall madly in love, get married while watching the sunset, pop out a whole litter of children, and grow old with the love of my life, but anyone with HD knows that it’s not that simple. My husband would eventually end up as my caretaker. He might end up really lonely while I’m sick, burdened emotionally, physically, and missing me while I’m still alive. And I have the risk of passing HD down to my children if I’m unable to afford fertility treatments.

Not to mention, I had already been suffering from debilitating depression and anxiety for years, and I couldn’t fathom those parts of my brain degrading even more, becoming worse and worse over the years. Oh, and while that’s happening, toss in some memory loss, paranoia, agitation, and whatever else my own body decides to throw in.

The only pro that I had on my list was my family and friends, but at the time, they just weren’t enough to stop me.

It’s not that I didn’t love them. On the contrary, I loved them more than anything. People HAVE to stop with the notion that suicide is selfish. Can it be? Well … sure, anything could be considered selfish, depending on how you look at it. Most of the time, though, people who commit or attempt suicide are suffering from one mental illness or another, which inhibits them from thinking rationally. In my case, I genuinely thought that my loved ones would be better off without me because I wouldn’t have to burden them.

In my head, I believed I was doing everyone a favor, including myself. It was a win-win. I absolutely, positively could not see any other way. I needed the hopelessness and despair to end. I was tired of being depressed. I was so over feeling alone.

I remember barricading the motel room door with a dresser and securely locking all of the deadbolts. The Discovery Channel played silently in the background as I emptied the first bottle, the second bottle, and then the third bottle onto the TV stand, crushing them one-by-one and mixing them together in a pile. I created a funnel from a piece of paper and sifted the mixture into a bottle of beer, swirling it around for a bit until everything dissolved. I begged God to please forgive me, told Him that I loved Him and to take care of my family, and then downed it.

 

Fast forward 16 months. I’m still here.

And, can I just say, thank God.

After getting out of the hospital, I felt like a baby deer trying to stand up on its wobbly legs for the first time (although the deer probably mastered walking much faster than I did).

It took time, as all good things do.

Ohhhh, that time went by so slowly, but now, I’ve got more to look forward to than I’ve ever had before. I’m in a place that I firmly believed did not exist during those dark times.

I’ve found someone who loves me with all of the baggage I carry along with me. He doesn’t have any mental or physical problems at all, yet he still does his very best to understand what I go through. He knows about HD and what may be to come, but he loves me enough to stick by my side through it all. I know he’s afraid, but he stays and loves me anyway. It blows my mind (in a good way).

Have the fears I had about HD gone away? Of course not. I think about it every day, but I figure that I may as well love the hell out of someone as passionately as I can in the meantime. I’ll love him hard enough to pierce through his memories of me in the future, when times may not be so good.

And I’ve been loving my family, friends, and everyone I can in that way, too. It feels so much better than being lost in your fears.

I have a great job, a beautiful home, and people who love me. I mean, it’s not perfect by any means, but it’s proof enough that amazing things can come from your hopelessness. I still suffer from severe lows and short-lived highs very often, but I’ve slowly been learning how to deal with it better. It doesn’t necessarily get easier, you just get stronger.

Yeah, I know, it kind of feels like you’re reading repetitive advice from some cliché writer, but if nothing else, just know that I’m all too familiar with your struggle, so you’re not alone. I never thought I’d get out, either.

Getting my life back was one of the hardest things I’ve ever had to do, but I’m here now… in all of my messy, clumsy, love-crazy, insecure, depressed, happy, struggling glory. I’m here.

You can be here with me, too.

If you or someone you know is considering suicide, please call the national suicide prevention lifeline: 1-800-TALK (8255).

 

This article originally appeared in Leah’s blog, “Capturing the Corners.” You can read more of her articles here: http://capturingthecorners.org/welcome-home/

According to the National Institute of Health, the rate of suicide, suicide attempts, and suicidal ideation among people with HD far exceeds that among the general population. 

“Suicidal ideation in Huntington’s disease: The role of comorbidity” reports that in the study conducted by the authors, 26.5% of patients in the study reported suicidal ideation, compared with 3.3% in the general population. “In a subsample with the greatest suicidal ideation, alcohol and drug abuse were also predictive.” Completed suicide in HD has been reported to be as high as 13%, a seven- to twelve-fold increase above that of the general population’s suicide rate of <1%, while 27.6% of individuals with HD reported at least one suicide attempt. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3790459/)

To learn more about suicide risk factors and civil liability, please visit this link: https://www.hoganinjury.com/suicide-risk-factors-and-civil-liabilities/

 

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Huntington’s Disease: Filing for Disability

Huntington’s Disease: Filing for Disability

By Sharon McClellan Thomason

Filing for disability and navigating the system of SSDI, SSI, Medicare, and Medicaid can be both challenging and frustrating. It’s a world we usually know little about until we plunge headlong into the journey of Huntington’s and Juvenile Huntington’s disease.

I consider myself to be a well-educated and reasonably intelligent woman, but I can tell you that helping my son file for disability and associated benefits stretched my knowledge and problem-solving skills to the limit.

Here are some things I learned along the way.

First, some simple definitions you will need to keep in mind—make these a part of your new vocabulary:

  • SSDI stands for Social Security Disability Income. This is administered by the federal government, once it’s determined that you have a disability.
  • SSI stands for Supplemental Security Income. This is administered by the Social Security Administration and is income-based, providing cash assistance and healthcare benefits (Medicaid—see below) to people with limited income and resources.
  • Medicare is a federal healthcare program. Once you’ve been on disability for two years, you are automatically eligible for Medicare. People who have worked and paid into the system are also eligible for disability upon turning 65. Medicare has Parts A, B, C, and D. Part A is hospital/hospice insurance; Part B is medical insurance that covers doctors’ visits; Part C is an optional Medicare Advantage plan; Part D is a prescription drug plan.
  • Medicaid is a state-run program for people with limited income and resources. It also covers things not normally covered by Medicare, like nursing home care and personal care services. It is funded jointly by the state and federal government, but eligibility varies greatly from one state to another. States that have granted Medicaid expansion under the Affordable Care Act are more likely to grant eligibility for Medicaid. The map here (https://commons.wikimedia.org/wiki/File:ACA_Medicaid_expansion_by_state.svg#/media/File:ACA_Medicaid_expansion_by_state.svg) shows which states have Medicaid expansion. Medicaid also includes optional dental services for people over age 21.

As a basic review, SSDI and Medicare are federal programs that are not income based; SSI is a federal program that is income based; Medicaid is a state-run program that is income based.

Compassionate Allowance List and Appealing a Denial

When applying for SSDI, it is helpful to know that Huntington’s and Juvenile Huntington’s disease are included under something called the “Compassionate Allowances List,” or CAL. (https://www.ssa.gov/compassionateallowances/). According to the Social Security Administration, “The CAL initiative helps us reduce waiting time to reach a disability determination for individuals with the most serious disabilities. The Compassionate Allowances program identifies claims where the applicant’s disease or condition clearly meets Social Security’s statutory standard for disability.”

So this should make the awarding of disability benefits automatic, right? Not necessarily. The trick to claiming this allowance is knowing where it is listed and alerting the claim worker that HD is on the CAL. Interestingly, HD can be found in two places: under ‘A,’ as Adult Onset Huntington Disease, and under ‘M,’ as Mixed Dementias, where Huntington’s dementia is listed under alternate names. It is NOT listed under ‘H.’ Juvenile Huntington’s disease isn’t so hard to find—it’s under ‘J,’ as Juvenile Onset Huntington Disease. The complete list, with links to the above named, can be found here: https://www.ssa.gov/compassionateallowances/conditions.htm. The listing for each includes the necessary documentation to include with your application.

When I helped my son apply for SSDI, HD was not listed on the CAL. I used the guide developed by Phil Hardt, available through the Huntington’s Disease Lighthouse Foundation (http://hdlf.org/node/210), which many families have used successfully. After a few years of severe psychiatric symptoms, a positive genetic test with a CAG of 45, and a diagnosis by a neurologist, I started the application in the summer, after school was out (I was still teaching full time). Despite following the guide precisely, the application was denied. We then had the option of appealing. By then, I was back at work and was afraid I didn’t have the time to do the appeal properly, so I hired an attorney who specializes in Social Security law. This seemed like the ideal solution since they, by law, do not require any payment up front, and receive a set payment only upon a successful appeal. I should’ve done my homework, though, as I learned that all Social Security law firms are definitely not created equal! The one I hired had me do all the work (gathering and mailing paperwork, filling out forms), and I only met the attorney once—to sign the contract. After that, I dealt with a paralegal who sometimes returned my phone calls, most often, not. I even found out that the appeal had been approved before they knew it!

My hope is that with the Compassionate Allowances, and with organizations that help you with applying for disability, you will not experience the difficulties we experienced. At one time, the Caring Voice Coalition helped people apply for disability; however a statement on their website (http://www.caringvoice.org/disability-assistance/) says, “CVC’s disability program supports patients through the various stages of the Supplemental Security Income and Social Security Disability Insurance application process. Our patient advocates coordinate supporting evidence, assess eligibility, submit claims for benefits and draft arguments. The disability program is temporarily at capacity. We hope to begin accepting new applicants for this service soon.” Instead, they are referring people to the Huntington’s Disease Assistance Foundation and the National Organization for Rare Disorders (NORD).

Additional Benefits

Another thing I learned that evidently is not generally known is that my son, who had very limited work experience before the onset of HD, qualified for additional benefits as the “disabled adult child of a disabled adult.” The window is very limited, as defined below:

An adult disabled before age 22 may be eligible for child’s benefits if a parent is deceased or starts receiving retirement or disability benefits. We consider this a “child’s” benefit because it is paid on a parent’s Social Security earnings record.

The “adult child”—including an adopted child, or, in some cases, a stepchild, grandchild, or step grandchild—must be unmarried, age 18 or older, and have a disability that started before age 22. (https://www.ssa.gov/planners/disability/qualify.html#anchor8)

Since my son’s father had passed away from Huntington’s disease, and he had a strong work record, Randy was able to qualify for about $250 extra in SSDI benefits, more than he would have received under his own work record.

Social Security also provides something called “Extra Help” with the Medicare prescription drug plan. To see if you qualify and to apply, go here: https://secure.ssa.gov/i1020/start. Note: if you already receive Medicare and Medicaid or Medicare and SSI, you do not need to apply as the extra help is automatic.

As daunting as it may seem, don’t give up on applying for these benefits! If you are a person with HD, get an advocate to help you with applying. The benefits are ones to which you have a right, and they can make a huge difference in your quality of life!

 

 

 

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Placing a Loved One with Huntington’s Disease

Placing a Loved One with Huntington’s Disease

By Katrina Hamel

My Story

In January of 2009, I started caring for my mom in my home, after years of her being homeless, ill, unreachable and 3,000 miles away. At the time, I was so glad to have her at home that I did not even consider placing her in a care facility.

Between 2009 and 2012, my mom’s psychiatric and behavioral issues became a big problem for her and for my family’s day-to-day life. She also had some of the worst chorea and eventually dystonia that I have ever seen. She would become very angry and would throw things, hit and scream. She also had paranoia and delusions that must have been terrifying for her. I had always wished that I’d found her sooner, so I could have gotten her in to see an expert in Huntington’s Disease, thus avoiding some of the pain and sadness that can come along with being unmedicated when you need medications. Some days were really hard, and I lacked resources in my area and knew no one else going through anything similar.

I had always thought about the idea of placement, but most of the time, I had too much guilt to actually “try hard” to get her placed. By that, I mean that I would call places and ask simple questions about cost, insurance, and Huntington’s disease experience and history. In doing this, I realized that the intake offices in very few places knew what HD was. I would guess that I called around 15 different homes that were near me, and out of those care facilities, two places had heard of HD, and one place had someone for a brief stay, but it had been years ago. I thought about how hard this must be for families who have nowhere to go, no places that know what HD is and how to help them. I remember thinking, I am a caregiver! I can do this! I can take care of MY mom! But at what cost? The attention to my kids, my job, the cleanliness of my house, my own health, sleep, the list goes on.

My background, before hands-on care of my mom, was in caregiving. I took care of people that had Alzheimer’s, dementia, and chronic diseases. I also specialized in Hospice care. I worked in care homes, and I also worked in people’s homes that wanted to stay home versus go into a care facility. Nothing could have prepared me for caring for my mom, though. HD is a whole different type of care that requires endless amounts of patience, acceptance, strength, disassociation, and the ability to continue day after day.

The bad days were bad, hitting, pushing, screaming, yelling, cursing, throwing food, falling, not bathing, spitting, talking to the dogs, paranoia, delusions, throwing excrement, screaming for someone to call 911, saying vile things to me and my family, breaking things and hurting herself. Good days didn’t happen in my home; good days were defined as only two or three of the above situations happening instead of all of them. I remember not even being tired at one point; I was on auto pilot; I survived, and that’s how.

My mom had always refused care from a primary doctor, a neurologist, a psychiatrist, even an eye doctor at some point. I called the police on her, in hopes of creating a paper trail for when the time came that I would be forced to place her involuntarily. She went to the ER one time, and the social worker told me that basically she was my problem, that my mother declined placement, and that she said she was fine living at home. I tried educating this woman about HD and how things may seem fine, but they weren’t. I also told this woman that I would not be picking up my mother, that they needed to help me with her care and medications, etc., before she came home. That didn’t happen, and I ended up having to pick her up.

Fast forward – I took my mom to the store for our routine monthly trip, and at some point, she decided to jump out of my car, screaming and yelling. I had my son in the car, so I had to go park and get her out of the middle of the road because she couldn’t walk well. She managed to walk/crawl/stumble into the nearby liquor store and was destroying the inside of the shop. She was screaming to call 911. So we did. I explained on the phone that my mom had HD and what that meant. They, of course, had no idea what I was describing, so I did ask for the psychiatric team to accompany them. The police came, and so did the psych team. I talked to the woman about my mom and what had been going on at home and the fact that I had been reaching out to every agency I could think of, to no avail. She saw that I had a child and knew that there was no way my mom could continue living with us without having medications on board.

My mom stayed in the hospital while I called all over Santa Barbara County and all of California, really, looking for a home that would take someone with combative behaviors and that has Huntington’s disease. I found no one willing to do so. The social worker told me that she would be releasing my mom. When I said she couldn’t come home, she replied, “How would you like it if your mom just wandered the streets of Lompoc?” Back then, I was a lot less informed about what should have happened in this situation. I said that the hospital, and more specifically the social worker, would be held liable if anything happened to her. This woman began looking for a facility to take my mom. Eventually my mom ended up in Los Angeles, which was 4.5 hours away from me and all of her family. When I walked in, the smell of urine smacked me in the face, a man was screaming and walking into a wall, there were three caregivers watching TV and ignoring everything around them. I knew I wasn’t happy, as my standards for care are pretty high. My hope was that she could get on some meds that would stabilize her, and I could get her moved closer to home or even back into my home.

Over the next several months, my mom would do well on the medications they were giving her, and we visited as often as we could. Some days, she would refuse her medications, and they would have to be forcibly given. This opened my eyes to the fact that she needed to be in a home that could provide this type of care. I would visit, and she seemed to become more and more submissive, almost defeated. Slowly, I realized that she was progressing pretty quickly. I then moved her to the care home I worked at that was for low-income people on Hospice. I was able to stay with her every day, sleep in her room next to her, and regain the love that was always hidden by daily caregiving and HD. She died 11 days later.

Tips to Help with Placement

I’d like to share some key knowledge that I have gained from my story and the stories of other people that I have helped with placement.

Since 2012, I have helped several families find placement for their loved ones. Here is a list of factors I found to be the most important to consider and talk about:

  • Insurance/veteran benefits
  • Financial obligation to the family
  • Distance from home
  • Quality of care
  • Stages of care, through Hospice?
  • Knowledge of and willingness to take someone with HD
  • Do they have any waivers available (for someone that is young?)

Start by getting a notepad and writing down the names and phone numbers of facilities in your area, or the area of interest. Have a list of questions that you want to ask and start by asking to speak with someone in the admissions office. If you have insurance, I would start by asking a care facility if they accept your insurance, and if so, does that cover all the cost? If it doesn’t, what will be the monthly cost that the family needs to come up with? At this point, if there is a financial cost that you or your family will not be able to afford, I would ask about financial assistance. I would also reach out to your loved one’s branch of armed forces if applicable, to see what is available. With each question, you will see if there is any need to move on to the next question, or if it’s time to move on to the next facility.

I would then start talking about Huntington’s disease and listen to their reaction. Sometimes people have no idea; sometimes they are almost an instant no. Other times, they have had someone with HD and are willing to take someone else with HD. Be ready to talk and educate, if they are willing. You are also welcome to download our brochure (https://help4hd.org/education-resources-information/) What is Huntington’s Disease? to have facts to support your conversation.

Something to remember is that “no” doesn’t always have to be accepted. You can still ask if there are any ways around it, if there are exceptions. In many states, in the care home world, they are licensed to care for certain populations, and sometimes this includes only adults over the age of 55. A lot of times, our community needs care prior to age 55. Each facility that has this particular license also has a certain number of waivers that allow them to care for a handful of people outside of their license. This is where younger adults with HD that need care will typically fit into.

Something to consider is, do you want to ever have to move your loved one once he/she is placed? When I placed my mom, I was glad to know that they did offer end-of-life care; even though my hope was to bring her closer to home, it was nice to know that I wouldn’t HAVE to move her. If you do not want to move them again, an important question to ask is, “Do you offer Hospice care?”

If you live near the care home you are looking into, stop by for a visit. Try not to judge the book by its cover, and introduce yourself to the caregivers in the home, if possible. Oftentimes, care homes that have the nicest, most loving people working there don’t always have an updated facility. But would you rather have great quality of care or an aesthetically appealing building?

Some important tools to have and use are social workers who have experience with placement and HD. Even if your loved one isn’t being seen by a specialist, you can reach out to your local Center of Excellence and request someone to speak with. I think having someone as support and backup from a Huntington’s disease organization can also be helpful, someone to help you navigate your specific situation. For whatever reason, sometimes care homes listen to social workers or advocacy groups more than the families, though we all know that the families are the experts! Last year, I helped a woman with placement after her family found me through Facebook. She was no longer verbal, mainly bedbound, and the family was low-income, with only state insurance. They had tried many different homes and were turned down because she had HD. I started to help them, letting care homes know I was part of an advocacy group, trying to help a family survive, as the husband needed to get to work and was having trouble caring for his wife. I would get the same story, and I started describing the care that this woman required, that she hadn’t been combative in over a year, and that she was quite docile. After talking to them about her needs, they were open for more discussion. I asked them about their waiver count, and they had two waivers available. Slowly, the process began to move her into a facility that benefitted her and her family.

Sometimes, I have helped families in situations that didn’t work out as easily, and they had to struggle before we came up with a plan.

Don’t lose hope. Do your homework and gather a team of soldiers to help you battle and advocate for you and your loved one.

 

Katrina Hamel is the vice president and CFO for Help 4 HD International Inc. She is currently caring for one of her brothers who has HD. Please be sure to tune into Help 4 HD Live! on Wednesday, June 13, at 4 p.m. ET/ 1 p.m. PT to hear Katrina talk about the challenges of placing someone with Huntington’s or Juvenile Huntington’s disease. You can listen to the show live (or in the archives after June 13) at http://www.blogtalkradio.com/help4hd/2018/06/13/challenges-in-placing-our-loved-ones-with-hd.

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Navigating Juvenile Huntington’s Disease

Navigating Juvenile Huntington’s Disease

By Denise Hudgell

“Sometimes superheroes reside in the hearts of small children fighting big battles.” – Author Unknown

Any parents who have or had a child with a terminal illness know the heartache of watching their child suffer and the heartache that it brings. Navigating through the world of Huntington’s disease (HD) is especially difficult at times, due to the lack of knowledge, awareness, and providers that are familiar with the disease. The Juvenile Huntington’s disease (JHD) world has its own set of challenges, from difficulty getting a diagnosis to even fewer providers that know about JHD to unrecognized symptoms that appear in JHD. The inability to receive a diagnosis of Juvenile Huntington’s disease in a timely manner can make a big difference in the way a child is treated. For example, children with JHD are often misdiagnosed with ADHD and treated with medications that can actually make JHD progress more rapidly. It can also make day-to-day activities difficult for families when a potential diagnosis is looming over their heads. When a child is at risk for HD, and he or she begins to have symptoms that could be HD-related, it can be very difficult for the parent to not wonder if it could be JHD. Every little misstep, fall, change in behavior can trigger worries in the parent.

Being the parent of a child who is at risk for HD is scary, especially when symptoms appear in childhood  or adolescence. I’ve been navigating the JHD world for over eight years, beginning when my son Aidan started having symptoms at the age of four. It is both frustrating and heart wrenching. I know the fear of JHD and the anxiety of waiting for two years to receive a diagnosis. Aidan started to show mental health symptoms such as aggression, agitation, and obsessive-compulsive behaviors at the age of four. His physical symptoms were only a few months behind. Aidan began falling more frequently, walking on his tiptoes, and having difficulty with balance. He also started to have staring spells, which were suspicious for petit mal seizures. I spoke with his preschool teacher and asked her to keep monthly handwriting samples so that I would have those to take with me to our neurology appointment that was still nine months away, since handwriting difficulty is one of the symptoms in JHD. Being an RN (registered nurse), I was very involved in our local medical community, so I started to research providers that I could reach out to. The hours I spent researching, making phone calls, and worrying were all-consuming. Once we received a diagnosis, even though it wasn’t the outcome we had hoped for, we were able to move forward with finding a specialist and focusing on how my son’s JHD was going to be treated.

After Aidan’s diagnosis, I became very involved in the JHD community, raising money for research, advocating, spreading awareness, networking with providers across the country, and working for Help 4 HD International, a non-profit that is committed to the HD/JHD community. Working so closely in the community was cathartic, even as we lived through some of the worst days of our lives. The amount of love and support that I received from the HD/JHD community, both families and professionals, local and worldwide, has been wonderful. It’s a club that none of us want to belong to, but I have met some of the most loving and caring people along our journey.

Over the last eight years, I have experienced care for my son through several different providers and specialists. There are a couple that stand out in the care that Aidan received. University of Iowa’s Center of Excellence played a pivotal role in Aidan’s care. Their medical and professional staff are very knowledgeable about JHD. They are compassionate, caring, and understand that a diagnosis of JHD encompasses caring for the family as a whole. The support and care that we received was second to none, and I am grateful for their time and passion for treating children with JHD and their families. Unfortunately, since we live four hours away, having continuous care with them was almost impossible, especially as Aidan became more symptomatic, so we only had the opportunity to see them once a year. Aidan had been getting his regular JHD care from a local HD provider, but we didn’t feel that it was the right fit, so about three years ago, we switched the rest of Aidan’s care to our local Children’s Hospital. While none of the specialists had specific knowledge and experience with JHD, all were more than happy to research and gain knowledge on how to best treat Aidan. They listened to my concerns, and we established a wonderful team for Aidan. I went with my gut, and Aidan received the best care these last three years.

In 2015, I had the pleasure of meeting the regenerative medicine team from Dr. Jan Nolta’s lab at UC Davis in California. I was able to tour the lab where regenerative medicine research is being done for JHD. It was a wonderful experience, meeting with their team. Seeing and hearing their passion, compassion, and overall love for the HD/JHD community was humbling. They are truly warriors in this fight against HD/JHD, and I feel very fortunate to have been able to get to know all of them and also to have had the pleasure of interacting with them throughout the HD/JHD community.

Unfortunately, on March 7, 2018, I became a member of another club no parent wants to be a part of. Aidan lost his battle with JHD at the young age of 12. We thought we had another year or so, but JHD had other plans. The last two months of his life were spent in and out of the hospital. Without the support of my family and the HD/JHD community, I wouldn’t have been able to make it through the worst experience of my life. Two months later, I still have so much love and support from the community, and I know that will continue. I feel very lucky to be a part of this community. I encourage everyone who has a family member with HD or JHD to become involved in some way. There are many ways to become involved: online, working with non-profits, hosting an event, educating and awareness, research. Being involved and getting to know others who are in similar situations can be very helpful and can make you feel less alone in a world that can be very lonely at times.

Although Aidan left this world way too soon, I still will be involved with the HD/JHD community, and I live in hope that a cure will come soon so that no one else has to suffer at the hands of this awful disease. I will continue to fight in Aidan’s name and hope that no parent has to experience what I and so many other parents of children with JHD have experienced.

Aidan and his family are featured in the award-winning documentary The Warriors: Fighting the Incurable Juvenile Huntington’s Disease. With a suggested donation, the documentary is available for virtual download, or you may order a copy of the DVD. Information can be found here: https://help4hd.org/events/the-warriors-fighting-the-incurable-juvenile-huntingtons-disease-is-now-available/

 

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Huntington’s Awareness Month, Here We Come!

Huntington’s Awareness Month, Here We Come!

By Ginnievive Patch

May is the month that inspired my caregiver’s book, I Fight for Understanding. May is Huntington’s Awareness month!! As a way to give back and help educate other caregivers, I had decided to write tips for each day of the month every year, and Help 4 HD published one of those years into an easy-to-read booklet that reads like a daily devotional.

When my ex-husband, and current charge, was first diagnosed, I did not have a complete grasp of how convoluted the illness is. I was beaten down by his irritability and demeaning comments. I was constantly trying to fix myself. I was blessed enough to have met a group of people online that helped me learn the truth about this illness. They supported me, educated me, and befriended me, so now I feel it is truly my mission to do the same for other caregivers.

I am an RN (registered nurse), which also hands me the responsibility to educate the community as a whole. Help 4 HD is a leader in spreading awareness and education for families. This group educates law enforcement, publishes books and films, and has public conferences to share information and enlighten the world. I ask you to take up your purple and blue flag and help continue this mission and join forces with Help 4 HD. We are a force that is making waves. HERE we come, world!

I Fight for Understanding: 31 Days of Coping with Huntington’s Disease may be purchased in paperback or on Kindle from Amazon. If you order from Amazon Smile, you get the same products, service, and benefits as from Amazon, but you can designate Help 4 HD as the nonprofit that will receive a donation from Amazon for every product you purchase. The Amazon Smile link for I Fight for Understanding . . . is https://smile.amazon.com/Fight-Understanding-Coping-Huntingtons-Disease/dp/1545534632/ref=sr_1_1?ie=UTF8&qid=1526322946&sr=8-1&keywords=I+Fight+for+Understanding.

 

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Help 4 HD Announces Huntington’s Disease Awareness Month Programs

Help 4 HD Announces Huntington’s Disease Awareness Month Programs

By Sharon McClellan Thomason

“We are excited this year about our programs we will be launching in the month of May for HD Awareness Month,” says Katie Jackson, president and CEO of Help 4 HD International Inc. “This year, we spent a lot of time thinking of things we could offer our community during the month of May.”

Beginning today (May 1), we are making available to the HD/JHD community, free of charge, an    “a-WEAR-ness” package. The package includes wristbands, buttons, a keychain, a window decal, and brochures. We are also offering a set of six communication boards. You may order all or any portion of the package. Items will be shipped at no cost, but because of the prohibitive cost of international shipping, the package will be available only in the United States.

“We started creating projects like communication boards and window decals to bring awareness about what Huntington’s disease is to first responders and the general public when approaching a car with one of our loved ones in it,” Jackson said. “We do hope that our community finds value in the items that we came up with.”

The window decal alerts first responders that there is an individual with Huntington’s disease on board and lists some of the symptoms that might occur with that individual.

A-WEAR-ness items can be ordered at https://www.research.net/r/Order_Form_May_2018.

Something we are extremely excited about offering for the first time is our long-anticipated award-winning JHD documentary, The Warriors: Fighting the Incurable Juvenile Huntington’s Disease. In exchange for a donation to JHD research, you may receive a DVD or a download of the documentary. Levels of donations are:

  • $15—receive a DVD of the documentary
  • $10—download a permanent copy of the documentary
  • $3.99—download a copy of the documentary to keep for 48 hours

To make a donation and order your copy of the documentary, go to https://help4hd.org/events/the-warriors-fighting-the-incurable-juvenile-huntingtons-disease-is-now-available/.

Another feature of HD Awareness Month is a special radio program every Wednesday in May. Programs air live at 4 p.m. Eastern/1 p.m. Pacific and may also be heard in our archives. To listen, go to www.blogtalkradio.com/help4hd.

You can also go to our website and download a copy of a Proclamation establishing May as Awareness Month. The Proclamation can be customized for a particular city, county, or state. We encourage as many people as possible to consider doing this for your hometown, county, or state! The template can be found here: https://help4hd.org/events/request-a-proclamation-from-your-city-or-county-for-hd-awareness-month/

Finally, a new article will run in The Huntington’s Post each Friday in May. The articles will offer information and insights into rarely talked about symptoms of HD and JHD, including gastrointestinal issues and hypersexuality.

A couple of years ago, Katie Jackson came up with Help 4 HD International’s motto, “Help 4 HD International is in the trenches with the people because we are the people.” Jackson says, “We are your community, living in homes that are impacted by HD every day. We love our community and want to bring as much support and resources as we possibly can. We are your grassroots organization started by families and continue to be run by families. We hold tight to our grassroots values and know that we are fighting to be the last generation to live with Huntington’s disease and Juvenile Huntington’s disease the way our generations and past generations have been forced to do. We hold tight to the hope that one day soon a viable therapy or the cure will be found. Till that day, we continue to fight beside you, proud to be a part of a community as compassionate, resilient, supportive, and strong as our Huntington’s disease community.”

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Stepping Away to Step Up: When Huntington’s Disease Is Too Much

Stepping Away to Step Up

When Huntington’s Disease Is Too Much

By Ginnievive Patch

 

Often, I hear the pleas of caregivers saying, “I feel overwhelmed.” “My HD loved one does not qualify.” “I hate my life.” “I want normal.”

Does this sound familiar? The controversial subject of staying/keeping a loved one at home is one that can strike up a fierce, judgmental war, including hateful reprimands from family members without Huntington’s disease. The struggle is real.

For my own family, I had to step away so that I could step up. We were at a crossroads in the HD world. I was caring full time for my end stage mother-in-law, still raising our youngest son, and battling my in-denial, prodromal HD spouse. My life seemed like nothing but a nightmare. If this sounds harsh, do not judge me; hear me out.

Feeling all alone is the silent killer of an isolated, uninformed caregiver who is left flailing along, not knowing what is HD, and what is not. Trying to separate the illness from the person is nearly impossible to do when you’re in the thick of it.

At the time all this was going on in my life, I had to make some really hard choices. My beloved HD man was verbally acting out and targeting his own mom and son and . . . me. I had to make the choice to step away. I searched endlessly for a nursing home to take Nana, and I searched for a house to rent for my son and me.

The night we moved out was a nightmare. The police had to be called, or I literally would have been murdered by my HD warrior.

It was ugly.

It was painful.

It was the right thing to do.

Some may think leaving is cowardly. It is actually brave. Moving a loved one into a home or temporarily leaving a still-working person with HD until later can make you a better caregiver!

Yes, you read it right. I stepped away for five years. During that time, my loved one still worked, and I monitored him. I invited him to all family functions and holidays, and I spent lots of time with him, but I got to go home and get away from it. Our son blossomed and grew. I was able to get my son and myself into counseling, and I visited my mother-in-law every weekend, picking up her laundry, doing her nails, and taking her outdoors. My relationship went from bitterness to pure enjoyment. I looked forward to being with both my man and Nana.

If your own mental health is suffering as a caregiver, if you are feeling resentful, hateful, scared, and you are having trouble coping, think about doing this temporarily to get back on track. It does not have to be permanent, maybe just a week’s vacation without them. Maybe a temporary separation, maybe a divorce on paper to help them qualify for more care, with you remaining a caregiver, maybe a nursing home near you. These are things to ponder. I am not an advocate of divorce or abandonment. I am not saying cut and run. What I am saying is sometimes you can become the best caregiver in the world by putting some space between you and your loved one with HD.

Step away to step up. If you are not making a point of letting yourself have time to heal, you may end up being neglectful and resentful and suicidal. YOU will lose you. Your loved one will suffer because he or she needs love and support, and if you resent your loved one, he or she knows it.

Oxygen is a good thing. It supports life. Give yourself time to breathe.

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Huntington’s Disease: All About the Kids

Huntington’s Disease: All About the Kids

HDYO Announces North American HD Youth Camp

by Sharon McClellan Thomason

Talking to kids about HD can be one of the toughest parts of the Huntington’s disease journey. It’s one thing to explain that Mom or Dad is sick; it’s quite another to explain that it’s genetic and that each child has a 50/50 chance of inheriting the disease. Fortunately, there’s a fabulous resource to help—Huntington’s Disease Youth Organization, or HDYO as it’s commonly known.

Right now, HDYO is gearing up for its annual North American HD Youth Camp at Camp Cedar Glen in Julian, California, August 11-15, 2018. Camp applications are open until April 30, 2018, to anyone ages 15-23 from the United States or Canada who is IMPACTED by Huntington’s disease. Thanks to generous donations, the entire cost of travel, food, and camp is covered for up to 50 young people!

Chandler Swope, Director of Youth Services, says, “We hope that young people will leave camp feeling less isolated, more knowledgeable about HD, and feeling more supported.”

The five-day camp is about an hour and a half from San Diego, California, and includes lots of team-building, paddle boarding, ropes courses, canoeing, archery, and much, much more! Experienced professionals from HDYO, HDSA (Huntington’s Disease Society of America), and HSC (Huntington’s Society of Canada) will be on-site at all times to support the campers. Trained volunteers will also be there to help supervise and to share their own experiences with campers.

This is an amazing opportunity for young people! For more information and how to apply, please visit https://en.hdyo.org/eve/events/569.

HDYO has also partnered with Help 4 HD International again this year to offer youth days at our HIPE (Highly Interactive Participant Education) Day in Gainesville, Florida, on June 30, and at our fifth annual symposium on October 13, in Des Moines, Iowa.

Another tool HDYO offers is an interactive web site (https://en.hdyo.org/) that is rich in resources for kids, teens, young adults, parents, and professionals. There is also a section for friends of young people impacted by HD as well as a section on Juvenile Huntington’s disease (JHD).

HDYO is an international non-profit organization that was launched in 2012. The idea originated in the summer of 2010 when Matt Ellison, the eventual founder, presented it at the Young Adults Working Group for EHDN (European Huntington’s Disease Network). HDYO is run mostly by young people impacted by HD. In its six years of existence, HDYO has developed a team of over 170 volunteers in a variety of roles. The volunteers include a board that oversees the organization, a translation team, forum moderators who respond to questions posted in the HDYO online forum, HDYO reps who spread positive HD awareness globally, and a feedback team made up of professionals who review content.

Please feel free to contact Chandler Swope with any questions: chandler@hdyo.org or 202-674-4848.

Remember: Enroll at https://en.hdyo.org/eve/events/569 before April 30th.

 

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Survivor’s Guilt With Huntington’s Disease

Survivor’s Guilt With Huntington’s Disease

by Ginnievive Patch

When it comes to Huntington’s and Juvenile Huntington’s disease, guilt can play a huge factor in the lives of those who test negative and are parents, children and siblings of someone very ill.

It is also a subject that can get thrown in the face of the ones without the illness. Many times, my own spouse and one of our oldest sons have said, “What are YOU depressed about? You are not sick.” This may be true, but watching your whole family die before you, especially knowing you had children who now have it, carries a burden like no other.

Survivor’s guilt. Imagine having three siblings, and you test negative. Imagine all your children and spouse testing positive. Imagine being the only child without HD. The questions, Why me? Why am I the healthy one? Why me? Why do my kids have to suffer with HD/JHD? Why my family? Why my parent? Why my sister? Those thoughts trample through the brain with hypervigilance. Such thoughts can actually cause severe depression. Wait! What? Testing negative can cause depression?

The answer is yes. Survivor’s guilt can cause depression. Thoughts like, “What gives me the right to be happy when my sibling will die from it?” can race through your mind. These are difficult issues that the family has to deal with. Young children with a sibling who gets all the attention because of JHD may even get really jealous of the sick sibling and wish to be sick, too, because they are in the shadows with no normal around.

Dealing with survivor’s guilt is multifaceted. Counseling, support groups, and journaling can all help. Online support groups are wonderful. Advocacy helps. Help 4 HD, Wehaveavoiceglobal, and HDSA are all groups that need help. Reading and teaching is another way to deal with it. Admitting your feelings is the first step. Tell someone, anyone, how you feel. Seeking proper medical help if depression is taking over is one thing I say really helps. Learn to forgive yourself for testing negative, for not having the disease.

Other family members may act in what seem to be inappropriate ways, such as withdrawing from the person who is ill. It helps to remember that they may be suffering from survivor’s guilt and cannot handle being around the person who is sick. Learn to forgive them, too.

Taking a break from HD can also be beneficial. It is especially important to arrange alone time with a non-JHD child, away from the sick sibling. Time alone with the well parent is important for the kids whose parent has HD. HDYO (Huntington’s Disease Youth Organization) and NYA (National Youth Alliance) also offer great camps for kids in HD families.

Things to remember: YOU did not do this on purpose. YOU did not get to choose to test negative. YOU would never have harmed a child intentionally. YOU are a blessing to the ones who are ill. HD/JHD teaches unconditional love, but it can come with a price of overwhelming guilt. Take a deep breath and stop holding yourself hostage with guilt.

 

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