Hypersexuality and Huntington’s Disease

Hypersexuality and Huntington’s Disease

By Sharon McClellan Thomason

Of the troubling behavioral changes that occur with the onset of Huntington’s disease (HD) and Juvenile Huntington’s disease (JHD), and there are many, one of the most troublesome can be hypersexuality. It’s important to realize that this is a part of the disease, that there is no shame or embarrassment in talking about it, and that there are treatments that can help resolve the problem.

The Symptom

According to an article in Huntington’s Disease News, “Studies have found that up to 75 percent of women and 85 percent of men with Huntington’s report difficulties in their sexual relations.” (https://huntingtonsdiseasenews.com/sexual-problems-huntingtons-disease/)

While a loss of interest in sexual relations is openly discussed in the literature, hypersexuality and inappropriate sexual behavior are not frequently talked about. In fact, when they are discussed, they are downplayed as something that doesn’t occur very often. The same article in Huntington’s Disease News says,

Less frequently, Huntington’s disease may also cause an increased sex drive and inappropriate sexual behavior. Such disinhibition is thought to be due to damage to the caudate nucleus, a deep area of the brain that controls behavior.

Some patients may be more likely to engage in risky sexual behavior, such as one-night stands or sex under the influence of alcohol or illicit substances. It is important to always ensure that safe sexual practices are upheld, including using condoms and taking oral contraceptive pills to avoid sexually transmitted diseases and unexpected pregnancies.

Families will tell you, though, that an increased sex drive and inappropriate sexual behavior are NOT rare; it’s just rarely discussed openly, perhaps because of embarrassment.

In fact, the Journal of Neuropsychiatry and Clinical Neurosciences reports, “Psychiatric syndromes (present in up to 79% of patients) most commonly include impulse control disorders, depression, personality changes, and, more rarely, psychosis or mania. Symptoms include disinhibition, irritability, aggression, apathy, and neurovegetative markers of depression. The suicide rate has been reported to be up to 20 times that of the general population over age 50.1 Increased criminal behavior and hypersexuality have often been reported in HD patients.” (https://neuro.psychiatryonline.org/doi/10.1176/jnp.11.2.173)

Recently, one woman posted in a Facebook caregivers’ group, “I’ve (yet again) been approached by a Facebook friend, and my brother has been harassing women. Young, old, married, or single. He begs for dates and tells them all the same lines about how attractive they are. So far, all I know it that he compliments them ‘sexy or beautiful’ and how he dreams about them. I would be uncomfortable if a man sent these messages to me. He has been doing his for years, and it is getting more frequent. Can I report him to Facebook? He won’t listen to me. I’ve begged, yelled, and threatened, to no avail. Maybe therapy? He’s so lonely. But he’s losing the few contacts that he still has!”

Several people responded with empathy. One said, “Dealing with the same issue with my son. Like many others dealing with this disease, the impulsive behavior is out of control. I have been dealing with this for years. Sometimes it is worse than others. We deal with it as we go. I will send messages and explain the circumstances, and most people understand. As the disease progresses, there will be different things you have to deal with. This is just a stage. Look at it as unfortunately at some point they will not be able to do it at all … deal as it comes is my outlook. It’s temporary, unfortunately.”

Another commented, “I reported my ex (we have two daughters). It’s sad, but I did not want them to see it.”

One woman wrote about the potential consequences. “My son has definitely changed. His mind has taken him to all kinds of stuff … porn from women, men, transvestites, gay, anything he can watch …. very scary to think what’s going on in his mind. However, I have to remember he’s 24, trapped in a body that is not functioning properly. He is not living a normal life, and that is his outlet, I would assume–so it’s definitely a fine line. He’s usually good about keeping within his bedroom and closing the door, so I don’t bother him too much unless he starts texting and sending inappropriate pictures to people. I explain to him that some people will not understand or do not care; it’s inappropriate, and you will go to jail, and at that point, I will not be able to help you … with Huntington’s and especially Juvenile Huntington’s it doesn’t matter how many times you say it; it’s in and out of the brain. It’s a constant battle [because] they cannot manage thoughts like they used to.”

Another woman shared, “My husband is starting to be the same way. He sends messages to my friends all the time, even if he hasn’t met them. He has no concept of it being awkward and weird. He even got blocked too many times on a dating app.”

I went through similar problems with my ex, back before we had Internet and dating sites. He once picked up a strange woman and brought her to our home, even gave her some of my clothes, and sent our young four-year-old son off in her care, not knowing her last name or how to contact her. Another time, he went to my son’s first grade Christmas party and gave the teacher a very sexy piece of lingerie, which she opened in front of students and parents, something that was incredibly embarrassing for her and for the parents and the students who realized something inappropriate was happening.

The problem with hypersexuality and inappropriate sexual behavior does not occur only with males affected by HD. One man shared, “I have been having a similar issue with my wife. She claims that she has no sex drive due to all the medications that she is on for her mood, and her doctors verify her claims of reduced libido. Yet she keeps reaching out to her ex-boyfriend from almost 20 years ago, trying to hook up with him. She claims it was a one-time thing and apologized, yet I have caught her calling him or messaging him many times now. I even checked the GPS history on her phone and found out that she left the house one night after I fell asleep. Sure enough, when I checked the call history on that day, her ex called her, and within minutes, she left the house and went to a local park for about an hour. When confronted with all this, she confessed to meeting him, yet she SWEARS that they just met up to ‘talk,’ yet according to the phone records they talk on the phone all the time (even though she keeps telling me that she doesn’t really talk to him anymore). I just don’t understand how if she supposedly has no sex drive, then why does she keep trying to hook up with this guy?? I finally called his wife and told her what was going on. Now I have seen messages between her and another guy (her friend’s 27-year-old son) that were VERY sexually explicit. This caused a huge argument and nearly ended our marriage.”

The problem, when it’s a woman sending sexually explicit messages and invitations, seems to be quite different than when it’s a man doing the same thing. The same poster added, “If a man with HD sends a woman a sexually explicit message, or flat out asks for sex, 99% of women would be very offended and even get angry. But if a woman offers a man sex or a ‘sexual favor,’ a LOT of men will actually entertain it to see if she is serious and possibly even take her up on it. I have heard of MANY female HD patients being taken advantage of by men because they are hypersexual and being VERY flirty with men.”

In another caregivers’ group, someone shared how his wife enjoyed masturbation with a vibrator so much that when the batteries ran out, she went to the neighbors’ house, naked, and threatened to set their house on fire if they didn’t give her new batteries for the vibrator.

Another woman shared, “My Phd sister-in-law (now passed) was very sexually promiscuous, to the extreme of bringing home men from the bar with her husband and son right there in the house and also taking off with men she met for days at a time.”

The fear that a loved one will go to jail because of inappropriate sexual behavior is real. The tragic story of Joseph Heverin in Delaware serves as a reminder of just how dangerous it can be. Joseph was convicted twice of unlawful sexual contact, something that his family believes stemmed from the effects of Juvenile Huntington’s disease—hypersexuality and poor impulse control. His mother, Dianne says she had reached out to mobile crisis and mental health before the police became involved. Because he had just turned 18, Joseph was considered an adult, even though he was disabled, and he spent about nine months in jail, waiting for sentencing. At 21, he was admitted to Dover Health Behavioral Systems for depression. Dover Behavioral, a short-stay psychiatric facility, tried for a year to move Joseph but was unable to find a place that would accept him because he’d been labeled a sex offender. At the age of 22, Joseph choked to death on a grilled cheese sandwich while eating without supervision at Dover Behavioral. Although his mother fought hard for justice, no one was ever found culpable for his death.

Treatment Options

So what can we do about hypersexuality and inappropriate sexual behavior with our loved ones? First, we must recognize that it’s not their fault; this is the HD/JHD brain acting. While it involves problems with executive functioning (lack of judgement, poor impulse control), Dr. LaVonne Goodman considers it a part of OCB (Obsessive Compulsive Behaviors). Goodman, an internal medicine doctor in Washington state who lost her first husband to HD and is the founder of Huntington’s Disease Drug Works, notes that, “These behaviors rarely occur in isolation and are associated with anxiety, depression, agitation and can occasional [sic] be associated with delusional thoughts.” (http://hddrugworks.org/treatments/obsessive-compulsive-behavior)

Her approach to treatment includes both behavioral and pharmacologic approaches. Behavioral strategies include both a “do” and “don’t” list:

Do” behavioral strategies include modifying the environment by simplifying life:

  • Regular schedules/routines. If change is necessary give advance warning
  • Allow more time for accomplishing activities
  • Identify triggers of overstimulation like noise, too rapid requests/demands
  • Distract
  • Non judgemental response
  • Give time to cool down

Don’t behavioral strategies:

  • Don’t try to rationalize or convince
  • Don’t respond with anger

She adds,

First line treatments are SSRI antidepressant drugs, several of which have been FDA approved for obsessive compulsive symptoms. These include fluoxetine (Prozac®), paroxetine (Paxil®), sertraline (Zoloft®), and fluvoxamine (Luvox®). The NSRI antidepressant drug venlafaxine (Effexor®) has been approved for severe anxiety and is also used for obsessive compulsive symptoms. Duloxetine (Cymbalta®) is a good alterntative NSRI. Often higher doses of these drugs are needed than those used for depression. Clomipramine (Anafranil®) that has combined SSRI and tricyclic that can be used in more severe presentation, but is not used first due to greater side effects than SSRI or NSRI drugs.  Mirtazepine (Remeron®) is an atypical antidepressant that is FDA approved for obsessive compulsive disorders.

Antipsychotic are not the drugs of choice for obsessive compulsive symptoms, but are often added if this symptom causes agitation.

Another article in Huntington’s Disease News concurs:

Disinhibition can be one of the most troublesome symptoms in Huntington’s disease, particularly for the family and caregivers. Milder symptoms can include speaking out of turn, embarrassing remarks, and childish behavior. More socially compromising behaviors, such as inappropriate sexual remarks, hypersexual behavior or exhibitionism can be particularly troubling.

Studies also show that disinhibition is closely linked to delusions, irritability, and agitation, suggesting that the symptoms may be on a spectrum of more classical psychotic symptoms, also commonly seen in Huntington’s.

The problems may also be more severe in younger Huntingtin gene carriers. The reviewers noted that disinhibition can be treated both with behavioral interventions and with selective serotonin reuptake inhibitors (SSRIs). Drugs used for behavioral problems in frontotemporal dementia might also be valuable. (https://huntingtonsdiseasenews.com/2016/09/29/psychiatric-and-behavioral-symptoms-in-huntingtons-ignored-in-research-review-finds/)

Others report having their loved ones put on a medication that lowers the sex drive. As always, consult with your loved one’s doctor before making any medication changes.

Most importantly, recognize that it’s okay to talk about this problem, that it’s a symptom that, if left unchecked, can lead to legal problems, and that it IS treatable! Keep talking because this subject is no longer taboo!

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Gastrointestinal Symptoms in Huntington’s Disease

Gastrointestinal Symptoms in Huntington’s Disease

By Katrina Hamel, Katie Jackson, and Sharon Thomason

Let’s talk about one of the “untalked about” symptoms of Huntington’s disease: gastrointestinal (GI) issues. According to Dr. LaVonne Goodman’s article “Gastrointestinal Problems in Huntington’s Disease,” “Human study shows that inflammation in the esophagus (swallowing tube) and stomach is common and occurs more frequently in Huntington’s disease (HD) as it progresses. Study also shows that individuals often do not complain. Lower GI function has not been investigated in individuals with HD, but if mouse models of HD are predictive, we can expect problems there, too. But the biggest contributor to gut distress in HD is likely due to medication side effects, less intake of water and more sedentary lifestyle as the disease progresses.” More details, including suggested treatments, can be found here: http://hddrugworks.org/dr-goodmans-blog/gastrointestinal-problems-in-huntingtons.

Anecdotal evidence suggests that lower GI function is indeed a problem for many with HD, just as upper GI function is. Three of the members of Help 4 HD International’s Executive Board (Katrina Hamel, Vice President and CFO; Katie Jackson, President and CEO; Sharon Thomason, Executive Secretary and Director of Education) decided to share their stories.

Katrina’s Story

Sometimes, people with Huntington’s Disease experience gastrointestinal complications due to medications, which is common in people outside of the HD community as well. In my mother’s case, she took zero medications. Believe me when I say she needed them, because she truly did, but medications were not the reason for her gastro discomfort.

As my mom’s disease progressed, she had many body systems change and slowly fail her. Before she had psychiatric issues, before she had behavioral issues, and before her chorea, she seemed to have an “upset stomach”; we ALWAYS had Imodium and Pepto in our medicine cabinet. As time moved on, and she continued to physically change, so did her bowels. Some days, my mom would go to the bathroom several times with no results. This would frustrate her to no end. Her stomach would become distended, and she would have trouble eating. Can you imagine? This must have been so uncomfortable and was also something that triggered perseveration.

This wasn’t always the case, though; she would also have days where she would go too frequently. On these days, we needed to stay close to home because her bowel movements were constant. Her skin would become raw. We needed to clean the bathroom several times a day, and I could always hear her growling, upset stomach. Some days, she wouldn’t be able to get from her room to the toilet quickly enough, and she would leak or have full blown accidents on the way there. This caused her so much shame, even though we tried hard to avoid her feeling that way. My mom ate a balanced diet, and despite our efforts, we never did find any type of food that made the GI issues better or worse.

Dr. Goodman suggests that gut motility and absorption of nutrients are both impaired in patients with HD because of a compromised lower GI function. This was the case with Katrina’s mother. Dr. Goodman also cites a 2009 study which shows that 32 percent of HD patients had an inflammation of the esophagus (esophagitis), and almost an equal number had inflammation of the stomach (gastritis). Many experienced both. This is the case with Katie’s husband.

Katie’s Story

I remember when I first found out my husband was at risk of inheriting Huntington’s disease I went to town, looking up as much as I could to learn more about HD. What I read was terrifying. To think my husband was going to have to endure the suffering I was reading was an indescribable feeling. My husband now has been living with Huntington’s disease for over 13 years. Little did I know upon that first google search that all the symptoms I was reading about weren’t going to be some of the most challenging symptoms we would have to deal with.

One of the most extreme struggles we’ve dealt with is issues with my husband’s stomach. That first google search, I didn’t see anything about gastrointestinal problems. Even when my husband started experiencing severe stomach pains and excessive diarrhea, I could still find very little information about this in the searches I did. The one place I was able to find a lot of information about GI issues associated with Huntington’s disease was in the support groups on social media. It was a common topic. Caregivers are constantly talking about how their loved ones are suffering with GI problems.

The symptom my husband was experiencing was not only incredibly uncomfortable and sometimes painful for him, but it also scared me. I was constantly wondering if he was dehydrated, and keeping my husband at a stable weight once the GI problems really kicked in was impossible.

My husband has been on anti-diarrhea medication now for over six years, and even with that medication on board, he still has problems daily. We have had him see our primary care doctor as well as a GI specialist, and no one can figure out what is wrong. They thought he may have Crohn’s disease, but they ruled that out. When they couldn’t figure it out, his primary care doctor said he was probably dealing with IBS (Irritable Bowel Syndrome). I accepted that diagnosis until I started seeing things pop up all over the internet from HD families living with the same problem I was seeing.

A little over a year ago, we placed Mike in a care home, partially because of the severity of GI symptoms. Around Christmas time this year, we noticed that my husband started throwing up. Not only was he throwing up, but he was intentionally making himself throw up. I brought my husband home for Christmas to make sure he was here when the kids woke up Christmas morning. Right when we woke up, Mike started throwing up everywhere. I decided to send my kids to my mom’s for the day. They deal with HD already, and I wasn’t willing to let the memory of Christmas with their dad throwing up all day be a memory they had of him. My mom came and picked my kids up, and I spent all day in a dark room holding my husband as he made himself throw up all day. He is pretty much nonverbal at this point, but he did express to me that his stomach hurt, and when I asked him how he felt, he responded, “like crap.” That is a Christmas I will never forget. In order to protect our children, my husband and I weren’t able to spend Christmas with them that year. Was it hard spending Christmas isolated away from our children and family? Of course, it was. The isolation wasn’t the hardest part, though; the hardest part was watching my husband suffer the way he was with stomach pains all day.

The throwing up and stomach pains continued for about a month. We talked to our specialist about what was going on. One doctor thought it may be a psychiatric symptom, kind of like an OCD behavior. I still, to this day, believe that may have been part of it. When I asked Mike why he was making himself throw up, he told me it was because his stomach hurt all the time, and it was the only thing that made him feel better. So now, myself, my mother-in-law, and the nursing staff at the facility my husband is at have really started watching him closely. We are concerned about dehydration and weight loss, but our biggest concern is Mike’s comfort. Can you imagine having to make yourself throw up multiple times a day to try to get some relief from the stomach pains you’re experiencing? It’s awful. We put Mike on Protonix as well as anti-nausea medication to see if that would help. After a while, we think it helped because we don’t see him making himself throw up anymore. I am not sure if this is because of the medication or because he has really cut back his eating to hardly anything now.

If your loved one living with HD is experiencing GI problems, please know you are not alone. There are a lot of us out there trying to help our loved ones on our own with this symptom because it is rarely talked about, and no one really knows how to help our loved ones.

Like any of the untalked about symptoms of HD (hypersexuality, suicide, psychiatric), GI falls into this category as well. It is hard to talk about these things, but you are not alone, and we need more research about HD and the gut. Like all HD symptoms, your loved ones may not experience GI problems, just like your loved one may never manifest chorea over the course of the disease. I am just noticing there are a lot of common stories out there, and I think we need to talk about this issue.

Sharon’s Story

My husband and two of his brothers suffered from HD. Paul and his youngest brother both had severe problems with vomiting. No matter what they ate, or when, chances were, it was coming back up. Their mother, Gwen, was the caregiver for both, and she was from the old school South where we believe that one of the ways you show love for people is by feeding them. It was so frustrating for her not to be able to feed “her boys” the way she wanted. Paul stopped eating because he either choked on or vomited up his food. Paul was still mobile at that time, so the decision was made to insert a feeding tube so that he wouldn’t choke or vomit anymore. Unfortunately, a feeding tube does NOT prevent vomiting, and with vomiting comes aspiration. With aspiration comes pneumonia. Paul continued to vomit and aspirate, even with the feeding tube and not eating. The same was true of his brother, who also had a feeding tube and went through a continuous cycle of vomiting, aspiration, and pneumonia. Both ultimately passed away from pneumonia, a direct result of the GI symptoms.

Conclusion

As always, if your loved one is experiencing GI issues, contact your care team right away. It must be terribly uncomfortable for our loved ones to have to deal with these issues, and if there is anything we can do to relieve some of the pain, we should try. Until then, families will continue to help each other through these symptoms, giving advice to each other like we always do!

 

 

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Choosing Death with Dignity in Huntington’s Disease

Choosing Death with Dignity in Huntington’s Disease

  by Sharon McClellan Thomason

Alan Pfeffer is a retired attorney in New York state whose first wife died from Huntington’s disease (HD) and whose 37-year-old daughter resides in a nursing home, slowly dying from HD. Alan is leading the fight for laws that will allow those like his daughter to choose a peaceful death rather than suffering the ravages that HD inevitably brings in the end stages.

Those of us who have lived with HD have seen the suffering. We’ve seen loved ones who can no longer swallow, talk, sit, walk, or attend to personal hygiene. We’ve seen our loved ones reduced to a decimated body, curled into a fetal position. We’ve seen our loved ones throw up repeatedly, unable to keep down any food or liquids. We’ve seen our loved ones refuse feeding tubes and starve to death, painfully. Perhaps worst of all, we’ve seen our loved ones, like my brother-in-law, resort to suicide, often violently.

While there are currently six states with Death with Dignity laws/statutes (California, Colorado, District of Columbia, Oregon, Vermont, and Washington), none of these laws provide relief for those who are suffering from HD or Juvenile Huntington’s disease (JHD). Based on the Oregon model (the first in the nation to pass Death with Dignity legislation), the law requires standards that are impossible for someone with HD to meet. In Oregon, the following criteria must be met:

  • The patient must be at least 18 years of age.
  • The patient must be capable (defined as able to make and communicate health care decisions).
  • The patient must be diagnosed with a terminal illness and within six months of death, as certified by two physicians.
  • The patient must make two oral requests to his or her physician, separated by at least 15 days.
  • The patient must provide a written request to his or her physician, signed in the presence of two witnesses.
  • The prescribing physician and a consulting physician must confirm the diagnosis and prognosis.
  • The prescribing physician and a consulting physician must determine whether the patient is capable.
  • If either physician believes the patient’s judgment is impaired by a psychiatric or psychological disorder, the patient must be referred for a psychological examination.
  • The prescribing physician must inform the patient of feasible alternatives to DWDA, including comfort care, hospice care, and pain control.
  • The prescribing physician must request, but may not require, the patient to notify his or her next-of-kin of the prescription request.
  • The patient must be able to self-administer the medication by swallowing; if the pills are dropped or regurgitated, or if the patient regains consciousness, there is not a second chance.

(http://www.oregon.gov/oha/ph/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/Requirements.pdf)

In order to make sure patients with HD may avail themselves of the mercy intended by these laws, Alan is filing this month to present an argument to the NYS assembly at its Public Hearing on Physician Aid in Dying (PAD).

Alan asks the question that strikes at the heart of the matter:

So why do people with Huntington’s refuse feeding tubes when they can extend their life? Because it is life they don’t want to continue to live. My daughter watched her mother slowly die and spend years rigid, unable to move any body part, unable to speak, orally eat, painful muscle contractions, no hope for a miracle drug being researched, placed by the nursing home staff in front of a TV all day. My daughter has a health care directive not to prolong her dying. She was a woman of the world, a Peace Corps volunteer who served her country by teaching the children of Turkmenistan in Central Asia English, who worked and lived in Thailand teaching English to children, who volunteered as an English teacher to foster care children in Israel. She lived for 18 months in Argentina; she speaks five languages; she toured the world; and she has made her choices and wants the same right of choice that is being considered for other people dying of things like cancer. Let’s not leave anyone behind.

Alan proposes that people with Huntington’s disease execute an advanced health care directive, while still of “sound mind,” that would request PAD when they reach the point that they no longer have what they have personally predetermined as “quality of life.” Just as people are currently able to execute a DNR (Do Not Resuscitate) order or refuse a feeding tube or a ventilator, they should be able to execute a request for PAD.

My husband would not have chosen PAD. He wanted to live as long as possible, in a nursing home, assisted by a feeding tube, to share in every part of our son’s life possible. His brother was the opposite. He had no children, and he had said from the time he was diagnosed that when it got to the point that he could no longer take care of himself, he would take his own life. Any of us would have taken care of him, but he did not want to live life on those terms.

Another shortcoming of current law is that it automatically eliminates the children who are suffering from Juvenile Huntington’s disease, since they have not yet attained the age of 18.

The whole point to this is that end of life should be a personal and humane choice. To this end, Help 4 HD International has issued an official position statement on Death with Dignity, which states in part:

HELP 4 HD International supports efforts to increase services and support for HD/JHD families, including palliative care from the time of diagnosis through their loved ones’ remaining lifespan.  This includes educating the community about what options are available to them at any time in their journey to retain as much control as they can.

HELP 4 HD International is not a lobbying group and thus does not participate in activities to promote legislation on this issue. Neither does HELP 4 HD International have an official position on what families “should” or “should not” do. We believe, though, that Huntington’s patients should have the right to choose death with dignity by a prior health care directive, a prior appointed agent, and, if necessary, physician assistance in order to enable people with HD to access the mercy that Death with Dignity laws intend.

If you wish to read and/or print out our official statement of position, it may be accessed here: https://help4hd.org/wp-content/uploads/2018/04/HELP-4-HD-Death-with-Dignity-Position-Statement.pdf.

To hear an interview with Alan Pfeffer on “Help 4 HD Live!” click here: http://my.blogtalkradio.com/tools/#/my-episodes/edit?episode=9611851

 

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Ray Glasser: Huntington’s Warrior

Ray Glasser: Huntington’s Warrior

By Sue Gamble

Sue Gamble is the caregiver for her brother, Ray Glasser. He has been in Lakeland Skilled Nursing and Rehabilitation Center in Angola, Indiana, since January 23, 2014. Sue says that working as a team with the nursing home staff has helped to ensure that Ray’s needs are met. Ray’s picture was chosen by the Huntington’s Disease Foundation for a billboard that appears in South Bend, Indiana, and on the back of buses in Fort Wayne. Ray is now fighting kidney cancer in addition to battling Huntington’s disease.

This week marked the 22nd anniversary of the start of Ray battling Huntington’s … I don’t know the exact date, but January 4th is when the MRI was done, and I know that we all knew something was not right when Ray was 35.

Our mother had taken Ray to a free clinic in Ft. Wayne, Indiana. The doctor was very knowledgeable about Huntington’s, and I can’t imagine hearing that she was 99.9 percent sure it was Huntington’s. Of course, our mother and Ray had no idea what “Huntington’s” meant as we had never heard it before. The doctor ordered an MRI; our mother took Ray for it, and they had to put pillows all around Ray because the chorea was awful!

Ray didn’t go back for the MRI results; he instead went to prison for a year for back child support. In prison, Ray befriended a lot of inmates, and although the guards would yell because he couldn’t do things fast enough, the inmates would put Rays boots on and lace them up so he didn’t get yelled at. They would help him with his meals.

When Ray got out of prison, he came to live with Mike and me. I went to the hospital and got his MRI and took Ray back to the free clinic and was told yes, it is Huntington’s. We looked things up, and I was shocked by the things we saw and read. Ray would read whatever he could and would tell me what was going to happen. A month after I got the MRI, I filed for disability for Ray. We went to three doctors; Ray struggled so badly with each one, but within a month, he had his first check. A few months later, we went to Indianapolis to have blood work done by a neurologist. The neurologist’s words have stayed with me all these years . . .  “No matter how many twists and turns you take on this roller coaster ride, always remember, even when it gets to the point he can’t talk, he’s in there. Don’t ever treat him any different than you always have.”

Ray’s CAG is 42, which means his Huntington’s gene [huntingin] repeats 42 times, and it should be like 17-20 [to be in the normal range]. The neurologist also told us that Ray would pass within 10-12 years. Ray has beaten every challenge that’s been put before him. Many times over the years, I thought, “This is it,” but he managed to bounce back. Now when things happen, I don’t get upset . . . I just say we have to wait and see how this goes.

Years ago, Ray’s attitude was, “Shit happens.” I say now that that attitude has carried him through to today. We face more challenges as we travel down this road, but I know that Ray has been able to touch sooo many lives. He had told me a long time ago to spread awareness as much as I can . . . through social media, the billboard, and now on the back of buses . . . I think he’s done a great job!!

I hope that someday in the near future, there is a cure for this worst disease known to man. I hope Ray is here to see it. Our family has grown stronger facing this battle with Ray, and I know he appreciates everyone that has walked beside him through this journey. Ray faces every challenge with such grace and dignity. He has taught all of us sooo much!

Thanks for beating the odds, brother, and I hope you never lose that beautiful smile!!! Ray is our Huntington’s Warrior!!!

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Gifting and HD

Gifting and HD

By Sharon McClellan Thomason

 It started with a post on Facebook. Ashley Yerby wrote, “My mom has HD and has been in the nursing home for a little over a year. She is wheelchair bound. I’m wanting ideas for Christmas gifts.” Ashley added, “I am going to get her a build-a-bear with our voices on it, and probably some socks and stuff she needs. I also found a wheelchair pouch to keep her phone and such.” She wanted more ideas, though, especially from people who make/sell things for HD patients.

The response was overwhelming, with many creative, outside-the-box suggestions.

Valerie Roark suggested, “Specialized cup that makes it easier to drink from, but monogrammed in vinyl. My uncle loved his ‘sippy jug.’ Movies or home videos, pictures, collage art, anything she enjoyed doing that she might still can. We bought lots of candy, and slippers. Take her online shopping for something she might like. If she’s a delivery flowers or goody basket kinda gal, she might enjoy looking at flowers. The bear is a good idea! It’s hard to buy for parents but especially when they have limited mobility. Monogrammed bathrobe, or shirts with her grandkids names. . .”

I thought back to when my ex-husband was in a nursing home and how we struggled to come up with gift ideas for him. Sweat shirts and sweat pants were always welcomed. He had a TV and VCR in his room, so we’d get him favorite movies that he and our son could watch together. He also had a CD player, so our son would create playlists of songs he knew his dad loved, and he would burn CDs for him. We tried audiobooks, but he said he couldn’t concentrate or focus well enough to keep up with the stories. Framed photos and artwork done by our son were always favorites. He loved the giant teddy-bear our son gave him one year and named him “Rambo,” his nickname for Randy. Even after he had a feeding tube, chocolate milkshakes always brought a great big smile to his face.

Carol Morgan suggested, “My mother loves a photo frame I recently gave her—like a bulletin board with ribbons stretched across it in a diamond pattern. Easy to stick a lot of 4×6 photo prints in it and to change them. We are getting ready to hook up a DVD player and take some of her collection of old shows. She is wheelchair bound in assisted living, with moderate level of dementia. Staff will change the DVDs for her. We also have a white board in her room—handy for staff to communicate with me.”

Ashley said she’d thought about a memory board, but didn’t think she could have anything with thumbtacks because of suicidal episodes. Several people suggested alternatives to thumbtacks, including crisscrossed ribbons, magnets, double-sided tape, glue dots, and a sticky, malleable product called Tac. Another possibility might be Velcro.

Amy Lou said that her husband loved music and suggested a radio or mp3 player. “The music really calmed him. He loved me playing his fave Pandora stations for him,” she added.

Sandy Laundra suggested decorating the room, adding that because her mother got moved to different rooms frequently, “You can get stick-on decals that don’t ruin walls at Dollar Store or Michael’s. You can get sayings and designs. . . . They also come down and are reusable.”

This suggestion triggered a memory of decorating the door to Paul’s room and putting a small Christmas tree on a table in his room.

Sandy added that another cute idea was laminated artwork made by their kids. Amy Lou added, “I made a scrapbook using the clear plastic inserts that holds papers. I put birthday cards in them, photos, movie ticket stubs, etc. The inserts already are three-hole punched, ready to go in a binder.”

Natalie Kristin Canuso said, “A photo book, soft blankets, pillows, make her a CD with music she enjoys . . . those are things I did for my mom when she was in the home.”

Janet Buhagiar suggested borrowing talking books from the library and added, “I created a garden on the balcony of her room; it’s nicer then looking at bricks.”

Marie Clay said, “I’m going to have a blanket made for my daughter with her favorite photos on it.” Items like this can be made through online sites such as Personal Creations.

Tatiana Adler suggested a basket of treats and favorite drinks/juices.

Doreen Schellerer Norwood added, “How about a poncho (with her name on it)? Hopefully she is taken outside when the weather is good . . . easy on, easy off,” and the ever-popular, “Chocolate!!!!”

Sandra from Australia recommended, “Maybe a pamper pack with all her favourite soaps, body wash, shampoo/conditioner, powder, or deodorant.”

Vicki Owen added, “My mom wasn’t in a nursing home but loved looking through her photo albums . . . maybe make one with pictures of her life . . . young to now.”

For my son, who is not in a care facility but is isolated at home by anxiety, gift ideas can also be tough to come up with. We’ve decided that comfy clothes, things for his room (bed linens, a rug, wall décor), and gift cards for online movies and music are the things that will give him the most enjoyment. He still enjoys playing his guitar and drawing, so things like guitar accessories and art supplies are also possibilities.

For some of our loved ones, it’s become difficult to unwrap a package, so decorated gift boxes with a top that just lifts off or gift bags might be an easier option.

Whatever your loved one’s situation, there are sure to be things that will delight him or her! Sometimes it requires just getting creative and thinking outside the box.

While we’re struggling to come up with gift ideas for our loved ones, we need to think of gifts for ourselves, too, gifts that will keep memories of our loved ones with us forever.

“It’s so important for us to record our loved one’s voices,” says Katie Jackson. “So many people told me to do that, and I’m so mad at myself that I didn’t record more of Mike talking, ’cause now he can’t talk, and now it’s too late.”

Other ideas include videos, handprints, photo ornaments, a locket with hair inside it, and thumb- or fingerprint necklaces. Kits for making many of these personalized items can be found online. The key is to think ahead to what you will most want to hold on to as a keepsake for memorializing your loved one.

Whatever gifting you decide on, we at Help 4 HD International hope that you and your loved ones have a Merry Christmas and a Happy Hanukkah!

 

 

The Huntington’s Post is made possible by grants from Teva Pharmaceuticals and the Griffin Foundation.

         

 

 

 

 

 

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Dealing With Irrational Behavior

Dealing With Irrational Behavior

Tools and Skills for Dealing With Irrational Thoughts and Behaviors in Huntington’s Disease

By Debra E. Andrew 

What gives? Suddenly, your loved one with Huntington’s disease is making no sense at all; his or her behavior is totally off the wall. What in the world is going on? When it comes to irrational thought, and irrational behaviors, it’s important to note that rational thought includes logic and reasoning. When the brain is impacted by Huntington’s disease, there is often a lack of reasoning or logic. This is because of damage to the brain in the frontal lobe. As brain cells die, logic and rational thought are interrupted, confused, or even absent.

If the thoughts and behaviors of the person with Huntington’s disease aren’t based on logic or reasoning, then what are they based on? The answer is need and an extreme anxiety that is overwhelming to the person with HD. Each person has many needs throughout a given day. Most of the time, we can meet those needs on our own, with little thought. This isn’t the case with Huntington’s disease. When HD is involved, the ability to act, process, sequence, and come to a logical conclusion doesn’t happen the way it does when HD is not present.

Although it can be very frustrating for loved ones and caregivers to understand and have patience with irrational thoughts and behaviors, the truth is this is a time for understanding and compassion. Remember that the thoughts in the mind of a person who has HD may demand the fulfillment of a need that doesn’t even make sense to you at the time. To that person, though, it is a pressing need that must be met.

Yes, it’s true that a person with HD can respond very rationally at times. That makes things even more confusing for those around them. It could be easy to think that sporadic irrational thought or behavior is on purpose. It isn’t.

What is a person to do? One thing that doesn’t work with irrational thought and behaviors is reasoning with the person. That person can’t be rational or logical at that time. Don’t even expect it. You might as well ask them to spread their wings and fly! The capacity to do so just isn’t there. Even worse, trying to use logic or trying to reason with a person in this state will probably escalate the situation and could lead to aggression or violence. Just don’t do it.

In addition to providing reassurance, love, and support to your loved one with Huntington’s disease, the following techniques may be helpful when interacting with someone who is experiencing irrational thought patterns or who is in an HD “episode.”

Distractions

Distraction #1 – The Switch – Sometimes it is much easier to distract a person who is behaving irrationally. Assisting that person to switch his or her thoughts can be helpful. To do this, present something to the person that will catch his/her attention and require some type of response or interaction. Offering a favorite food, perhaps, or shifting the conversation to something the person really enjoys and has an interest in. Sometimes, handing the person an unexpected object that really catches his or her attention can help. Whatever safe and kind distraction you can come up with that fits the person, and the current need that he or she has, is an option. The more extreme the distraction, the faster it will catch the person’s attention. Again, we are speaking of safe, and kind, options. Something that is mean may seem to work, but it isn’t appropriate to use a negative behavior to “re-frame” another negative behavior. Doing something negative or mean will only backfire anyway. Any type of abuse is unacceptable. Treat your loved one with Huntington’s disease with kindness, love, compassion, and understanding. Your loved one truly isn’t trying to be difficult and certainly didn’t ask to have Huntington’s Disease. Be compassionate.

Distraction #2 -The “Oh No!” Shocker – In an extreme situation, the “Oh No!” technique offers a quick redirection of thought, by presenting a type of shock or emergency. This, of course. isn’t really a serious emergency that you have created, but is framed in a way to create surprise and urgency.  Perseveration (getting stuck on a repetitive thought or need) can be a real challenge with HD, so it may take some very consistent distraction to make a shift from irrational thought patterns to something else. Sometimes, the perseveration is so severe that an average distraction won’t work. Something a little bit shocking and unexpected can redirect the mind very quickly. This is helpful when things are more extreme, and the person is getting aggressive or violent. Even a loud, unexpected sound can stop behavior in its tracks. Perhaps “accidentally” turning on music loudly, or banging a cupboard extra loud, blowing a whistle, or making some other loud sound can do the trick. It’s important to immediately follow the sound with another distraction. The idea is to take the person’s mind off the thought pattern he or she is “stuck” in, and to redirect the person to something else. If this technique is used, use it only rarely, or you will dilute its effectiveness. Misuse of this technique can aggravate aggression, so use it wisely, and with common sense.

Avoidance

Avoidance #1- The Subject Changer – If the subject or experience at hand is causing the irrational behavior to escalate, it’s important to change the subject, scenery, or other focus as quickly as possible to avoid continuing the negative escalation. It is possible to catch the irrational thought patterns or actions early. By acting quickly, trouble can be avoided. A soft reply, directed at something completely different (changing the subject), along with more distracting replies to follow, can sometimes avoid an escalation of irrational behavior. Sometimes, quickly removing your loved one from a situation that is creating anxiety is the best option. Take your loved one to a quiet area, and help him/her to calm down. Reassure your loved one. Often, this is what is needed. The point is to find a way to avoid the irrational behavior by using this technique.

Avoidance #2 – Remove Yourself – Sometimes the best thing you can do is to remove yourself from the situation. That may mean going into another room. If needed, use a locked door. At times, and if it’s safe for your loved one with HD, you may need to leave the house for a short time. Although you may need to avoid the situation, abandonment or neglect isn’t the answer. Make sure you aren’t leaving a vulnerable person unattended. Speaking of safety, in no way should you allow yourself to be abused in any way. Your loved one with HD may say terrible things when he or she is in an episode, and may also become aggressive or violent physically. It isn’t OK for you or for them to be abused emotionally, mentally, or physically. If you are not safe, get to safety and call for help. It is important to stop any abusive cycles before they begin. There are techniques for dealing with verbal abuse. Those will be addressed in a future article. If at all possible, simply walk away, without any response. Or if you must, say, “What you are saying to me isn’t OK. I’m going to leave until you are calm, and speaking to me appropriately again.” Remember, don’t rationalize, don’t get caught up in arguing, or talking about it right then. Just walk away.

Avoidance #3 – Remove Them – It may be necessary for the person who is experiencing irrational behavior to physically change his or her environment. If caught early, this may mean taking a walk, exercising, listening soothing music, or similar ways to remove your loved one from the situation. If your loved one is wheelchair bound, consider taking him/her on a walk outside. We all get sick of four walls and need to get out. If your loved one can exercise, see if he or she can do that. That may be difficult when your loved one is extremely irrational; however, if you can get the exercise started early, it can help relieve the anxiety and confusion your loved one is feeling. In extreme cases, you may need help from others to remove your loved one for a period of time, either to take him/her outside, or in the extreme, for medical care until your loved one is calm and stabilized again. If you need medical help and intervention, call for it. Sometimes it takes a stay in the hospital to get your loved one stabilized again. Although that is more of a rare situation, it does happen, and if it does, be strong enough to do what needs to be done. You are the protector and caregiver to your loved one with Huntington’s disease. Our loved ones can’t do these things for themselves, and they rely on you to do what is in their best interest and well-being. Medications help to manage these types of symptoms, and it may take a hospital stay to get the right medications found and going.

Calming

Calming #1 – Music – As mentioned before, soothing music can help with anxiety, and often, the high levels of anxiety experienced by a person with Huntington’s disease contributes to the irrational thoughts and behaviors. Nature sounds are also a good alternative. Music can calm a person, and can actually tap into someone’s mental brain patterns. If possible, dancing with the music can also help to relieve anxiety and has been shown to actually benefit the brain. Or if movement limitations don’t allow for dance, try to add some type of fun to the music.  Which brings us to #2.

Calming #2 – Laughter – Humor is a must when it comes to dealing with Huntington’s disease, and when the irrational hits, it can save the day. Try to find the humor to laugh “with” your loved one, and to get him/her also laughing and being silly or humorous. Laughter releases wonderful things in our brains and can dissipate anxiety very quickly. Don’t be afraid to do something really silly and unexpected if it will get your loved one laughing.

Calming #3 – Relaxation – We all love a warm shower or bath, or to feel comfy and cozy in some form or another. Some have found that essential oils can help to calm, as can the use of melatonin. Melatonin helps a person relax. That means reduced anxiety levels and a better result for both of you. Melatonin is often used to aid in sleep; however, a smaller dose can simply help a person to relax. Consult with your doctor before adding any substance, even a natural one such as melatonin, to what your loved one is taking. The right medications are a must. Help your loved one to get them and to take them as directed. In addition to these, a soft, snugly blanket may help; a weighted blanket may also help. Treat pain as quickly as possible. Check for room temperature as well. Although the person with HD may think he/she is hot, his/her skin may be cold, and that is subconsciously aggravating your loved one.  He or she may also be hot and need to become cooler to relax. Work with your loved one on filling his/her needs.

Find the Need

Pain, hunger, being uncomfortable in some way, having an infection or other health problems can cause undue anxiety which contributes to irrational thought. The best way to deal with an unmet need is to fill the need. It sounds simple; the problem is that sometimes people with HD don’t even know what the need is themselves. And if they do, they may not be able to communicate or express the need. Using visual cards, charts with images, phone apps, or apps on a tablet or other device that uses pictures and other visual clues can offer another option for communication. This is especially helpful when the ability to speak is diminishing.

If the problem is perseveration that just won’t go away, they need your help to change the mental topic. Coping well is not easy for people with HD. They are overwhelmed, frightened, confused, and their brains are giving them grief. Assisting them to cope with whatever is going on is what they need from you.

It can be overwhelming to be a caregiver to someone with Huntington’s disease. It may seem like you are always doing the hard work. That is because you are. Your loved one can’t do it for him/herself. You can learn and use valuable techniques that can help you and your loved one to have a better quality of life each day.

About the Author

Debra E. Andrew lives in Utah, is happily married, has seven children, 23 grandchildren, and one soon-to-be great grandchild. Her love of health and wellness has led her to empower others in all eight areas of health and wellness in her daily life and businesses.

Debra is the creator of Business Hands, a non-profit serving those who are disabled and their caregivers; the founder of Power HC, PWR HC – Preventative Wellness Resource Health Community; a Huntington’s Disease Regional Advocate; and she has established several Facebook groups supporting those with Huntington’s disease, their caregivers, and families. She also has a blog, http://hdinsider.weebly.com, where you can find more of her articles.

Debra’s educational background includes Business Management, Marketing, and e-Commerce, and she holds a B.S. in Community Health and a minor in Community Health Education. She is also a Certified Brain Health Coach.

Debra’s husband, Allen, has Huntington’s disease, and Debra is his full-time caregiver. The Huntington’s disease incidence rate in Allen’s family is 80 percent.

 

The Huntington’s Post is made possible by grants from Teva Pharmaceutical and The Griffin Foundation.

 

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Understanding Irrational Behavior in Huntington’s Disease

Understanding Irrational Behavior in Huntington’s Disease

by Debra E. Andrew   

It happens out of the blue. There you are, going along with what appears to be a somewhat normal moment in time, when suddenly the irrational behavior rears its ugly head! It isn’t that you have never seen this before. It’s that even though you have seen it, you are still caught off guard. One second, your loved who has Huntington’s disease seems rational, and then suddenly, he or she is anything but. How does one cope with irrational behavior?

First, let’s talk about the why. Knowing the why won’t change the behaviors you see, but it may help you to wrap your head around what is going on. The brain of the person with HD is being attacked. We could go into all kinds of medical and scientific descriptions about that, but rather than do that, let’s understand it in simple terms. The brain is being attacked, injured, damaged, and brain cells are being murdered. When that happens in the frontal lobe of the brain, it impacts behaviors.

Some factors that trigger irrational behaviors are:

Impulse control

Frontal lobe damage erodes impulse control. At times, we may all have some irrational thoughts, but our impulse control allows us to get rational again and to get control of any irrational thoughts. That is an impossibility for people with Huntington’s disease who are experiencing irrational thoughts or irrational understanding. The brain has taken off on its own direction of thought, and what the brain believes to be true is true to that person. To someone with HD, every one of those thoughts is real and true. And they behave accordingly.

 Anxiety

People with Huntington’s disease can feel very anxious when their brains aren’t working for them like they realize they should be. Their ability to cope is undermined, they feel a loss of control, and their anxiety begins to rise. This isn’t the basic anxiety that a person without Huntington’s disease faces. This is an intense, all-consuming anxiety that begins to overwhelm them completely.

Being overwhelmed

With so many emotions swirling around all at once, it is confusing and extremely overwhelming. There is no way for people with Huntington’s disease to sort through all of those extreme emotions. It becomes so overpowering that it removes rational thought from them. Just coping with those emotions is more than they can do; forget adding rational thought to that. Even if the processing of the brain allowed rational thought at that point, this extreme mixture of emotions would hijack it.

Confusion of thoughts and emotions

There’s a part of the person with HD that will fight to find what is true, what is going on, and even what is rational. Much like being in a room full of mirrors with hundreds of reflections, people with HD are seeing all of these thoughts and emotions, and they’re trying to figure out which is real. They may doubt if any of them are real, yet then believe all of them are real. Imagine how overwhelming that would be. The only survival available is to choose, to decide what is real and hang on to it. Unfortunately, that often can be the irrational thoughts that take over.

Frustration

Things just aren’t adding up. Things aren’t working like they should work. And there is no way to understand why, or to sift through things and get them lined up again like they should be. That is where the frustration begins. A loss of control. A loss of understanding that is frightening and overwhelming. It often comes out as frustration because acknowledging the fear that they truly are “losing their mind” is too much to process or accept.

Unmet Needs

Being hungry, thirsty, or having pain or other unmet needs isn’t something that people with HD can always express or process. Their bodies may hurt, but their minds may not tell them what they are feeling is pain. They may be hungry but can’t express their hunger. Gnawing at them is some feeling they can’t communicate, process, or meet for themselves. And yet, the feeling is relentless. They are at a loss of what to do. Remember, HD erodes the ability to know how to choose or how to do an act. The desire to act is there, yet all that comes out is to be frozen, unable to act on what they want to act on or unable to choose how to do it.

Perception, Unawareness, Lack of Emotional Recognition

Adding to this terrifying scenario is the inability to perceive exactly the responses around them. People with HD may be unaware of others’ responses, emotions, and much more. Although the facial cues that we normally would see and understand are there, they can’t pick up on those cues. They are left without understanding of any response, or they become extremely confused at the responses being received. When responses are negative or unexpected (and they are all unexpected), it’s like being hit in the head with a two by four. They are caught off guard, and now, added to all the above extreme confusion they are going through, they are baffled and often irrational. Reality is fractured.

Conclusion

Although it is natural to attempt to rationalize with a person who is behaving irrationally, all these factors make a rational discussion or reasoning with an irrational person with HD futile. This may sound hopeless, but it isn’t. Thankfully, there are ways to manage and to cope with irrational behaviors. Those will be discussed in a follow-up article.

About the Author

Debra E. Andrew lives in Utah, is happily married, has seven children, 23 grandchildren, and one soon-to-be great grandchild. Her love of health and wellness has led her to empower others in all eight areas of health and wellness in her daily life and businesses.

Debra is the creator of Business Hands, a non-profit serving those who are disabled and their caregivers; the founder of Power HC, PWR HC – Preventative Wellness Resource Health Community; a Huntington’s Disease Regional Advocate; and she has established several Facebook groups supporting those with Huntington’s disease, their caregivers, and families. She also has a blog, http://hdinsider.weebly.com, where you can find more of her articles.

Debra’s educational background includes Business Management, Marketing, and e-Commerce, and she holds a B.S. in Community Health and a minor in Community Health Education. She is also a Certified Brain Health Coach.

Debra’s husband, Allen, has Huntington’s disease, and Debra is his full-time caregiver. The Huntington’s disease incidence rate in Allen’s family is 80 percent.

 

The Huntington’s Post is made possible by grants from Teva Pharmaceutical and The Griffin Foundation.

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On Being Resilient

On Being Resilient

By Sharon McClellan Thomason

 

One thing that families living with HD/JHD learn fairly quickly is resilience.

As a grassroots nonprofit run by family members living with Huntington’s disease, Help 4 HD International practices resilience as an organization on a daily basis. HD hasn’t been able to break us as individuals, and Mother Nature won’t break us as an organization. We will continue to serve our families, despite devastating events like Hurricanes Matthew, Harvey, and Irma. Matthew didn’t stop our annual symposium in October 2016; Harvey is not stopping our Houston HIPE Day on September 30; Irma is not stopping our annual symposium in Tampa on October 21, next month. We are resilient!

According to “Developing Resilience” (https://www.skillsyouneed.com/ps/resilience.html), resilience is “the ‘rubber ball’ factor: the ability to bounce back in the event of adversity.” The article goes on to say that, “Resilience is NOT [emphasis mine] necessarily about overcoming huge challenges; each of us faces plenty of challenges on a daily basis for which we must draw on our reserves of resilience.”

Sometimes, then, resilience doesn’t mean we vanquish adversity; it means we keep going in spite of  adversity.

Those who live with Huntington’s and Juvenile Huntington’s disease would probably agree that there’s more than enough adversity to go around just in the course of daily life: being at risk, learning that a loved one has tested positive, dealing with a new symptom, finding a doctor who’s familiar with the disease, finding the right med (or combination of meds), finding an appropriate care facility, losing one’s independence, losing part (or all) of the family’s income … the list goes on and on.

So does everyone have resilience? Is there some secret formula? How do you deal with all the adversity this disease throws at you?

First, everyone who is not totally compromised by physical or mental illness has some degree of resilience. It may be physical, mental, or emotional, or any combination of the three.

Think back to childhood: when you fell on the playground and scraped your knee, you got back up and kept playing. That’s physical resilience. Nearly all of us have seen a child who’s been felled by the flu only to bounce back, filled with energy, as soon as the fever is gone. Again, physical resilience. An adult who’s had a knee replacement eventually walks normally again. Physical resilience.

Again, let’s go back to childhood. Remember that bad grade on a school test? You studied smarter the next time, and you aced the next test. That’s mental resilience. As an adult, you may have become frustrated at getting to the grocery store only to forget what you went there to get. Next time, you write out a list, or you use a mnemonic device (a memory trick). Mental resilience. Sometimes it’s devising a strategy to deal with adversity.

Maybe as a teen you went through a bad breakup, but eventually, you decided to try dating again. That’s emotional resilience. Most of us have known someone who’s gone through severe depression, but through medication and/or counseling, that person has come through the depression. Again, that’s emotional resilience. Someone who’s lost a beloved pet has grieved the loss but has learned to love a new pet. Emotional resilience. Sometimes it means admitting there’s adversity and asking for help.

But what if the hurt or the grief or the loss or the fear is so overwhelming that it seems impossible to bounce back from such intense adversity? Can resilience be learned? Yes! It can be learned, and it can be practiced.

According to “Developing Resilience,” the first step is awareness. Notice what is going on around you and inside your head. Second is thinking. Learn how to interpret the events that are going on in a rational (“it’s not the end of the world”)way. Third, reach out. Know when (and often whom) to ask for help. Finally, develop fitness—the mental and physical ability to cope with adversity without becoming ill.

The American Psychology Association (APA) in “The Road to Resilience” offers several strategies to build resilience (http://www.apa.org/helpcenter/road-resilience.aspx). Those that I find particularly helpful in living with Huntington’s and Juvenile Huntington’s disease follow:

  • Make connections—HD and JHD are isolating, partly because they are “rare” diseases that people don’t understand and partly because the progression of the diseases can stretch out over such a long period of time that people, even family, drift away. One of the most empowering things for me is knowing I am not alone. I began my connection with others back in the 1980s, with a support group that met once a month, an hour’s drive away on a school night. The love and understanding that I found there kept me going back month after month and began my introduction to community members that I’m still in touch with to this day. I’ve connected with people through Yahoo groups for caregivers, various Facebook groups, conventions, fundraising and awareness events, education days, and symposia. I talk to strangers on airplanes and in the grocery store, and find out that lo and behold, they know someone affected by HD. Hmmm ….. maybe not so rare after all? These people have become my extended family.
  • Avoid seeing crises as insurmountable problems—Granted, it can be daunting to find the answers and help we need, and maybe we can’t even find it where we’re looking. I have a friend in California who recently needed to place her son in a care home; she couldn’t find one in California that would take him, but she found one in New Jersey, and she’s moved him there and is living nearby. Not the ideal solution she’d hoped to find, but a solution nonetheless. Networking is important here; talk to those connections you’ve made!
  • Take decisive actions—This goes with the suggestion made above. We can sit around all day wishing the problems would go away, but they won’t. We have to choose a course of action that moves towards a resolution that we can live with. For me, advocacy is a large part of a very deliberate decision to do SOMEthing, ANYthing, in the face of a disease that often leaves us feeling quite helpless. When behaviors with my loved one have gotten out of control, I’ve had to take actions I didn’t want to take, having him hospitalized, which in our state involves being picked up by the sheriff’s department and taken to the hospital handcuffed, in the back of the deputy’s car.
  • Look for opportunities for self-discovery—It’s important that we not lose our sense of who we are in the face of HD. While it’s easy to get lost in the challenges of living with HD, each of us is more than the disease, more than a patient, more than a caregiver. Nurture those other parts of yourself!
  • Maintain a hopeful outlook—This is probably the most hopeful time in the history of Huntington’s disease. There are very viable therapies and even possible cures on the horizon. Read about the clinical trials. Get involved in any that you can join. Listen to our research updates on BlogTalkRadio (blogtalkradio.com/help4hd) and on our Vimeo channel (www.vimeo.com/help4hd).
  • Take care of yourself—You know the old saying, “On an airplane, put the oxygen mask on yourself first.” It’s true that if we don’t take care of ourselves, we cannot take care of anyone else. It’s true that people with HD/JHD who live a healthy lifestyle generally seem to do better with the disease. Whether it’s taking a walk, reading a book, taking a bubble bath, doing yoga or photography, playing music, getting a massage, a manicure, a pedicure, whatever recharges your batteries, do it!

Practice resilience! Be that rubber ball! Adjust your sails! And please, join us at our next event!

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Huntington’s Community Talks About Grief

Huntington’s Community Talks About Grief

The recent series, “The Grief of Huntington’s Disease,” published in Help 4 HD’s The Huntington’s Post,  an outpouring of response from the Huntington’s disease/Juvenile Huntington’s disease community. We’d like to share those responses with everyone. This is the first.

My grief began previous to my mother’s diagnosis and continues long after her death in 2011. It began the day she forgot to pick me up from town, and she never returned home that night. We searched for her for hours upon hours, the entire family frantic with worry. She arrived the next morning, walking up our driveway in the middle of the country, with no recollection of her whereabouts the previous day.

From that day, I knew I couldn’t count on my mother’s mental state anymore, and from that day I mourned the safety net my mother once provided me.

My grief is ever changing and spans across many family members. When my mom was first diagnosed, I grieved greatly for my father who took care of her on a daily basis–he fell into a great depression. I felt guilty for pursuing my own life and dreams, all the while leaving my parents alone in the background to deal with this hell. My dad passed of a broken heart in 2005, and when it became my turn as primary caregiver to my mother, I grieved for my lost freedom. No longer did I have the opportunity to pursue my life; I put everything on hold to take care of her.

This was the hardest part of the grief, watching a mother of four beautiful girls deteriorate before my very eyes–the gradual loss of a parent whom you loved and depended upon. The loss of the parent-child relationship, the role reversal, was hard. Each day brought a new level of loss: loss of her memory, of her emotional control, of the ability to walk, talk, shower, and eat alone. Finally, I had to deal with the grief of losing her physical body; this was the easiest grief I dealt with as it came with the peace of knowing she no longer suffered.

Unfortunately, this cycle could start all over again with my sisters, my aunts/uncles, my nieces/nephews, my son, or myself at any time. The disease doesn’t die with the person affected; it is a family disease, and it is a lifetime of grief as you learn who will have to face this next. At the deepest level of my soul, I am utterly exhausted from the fear of losing more loved ones in this manner.

Grief is heart wrenching; it’s the ball of emotion that creeps up the back of your throat until it comes pouring out your eyes. It is a feeling of helplessness compounded by hopelessness. I deal with it a day at a time. I chose not to know my fate just yet, but I do try and talk to my husband and son about the “what ifs.” They hate talking about it, so we typically get nowhere, but it eases my mind a bit to know I am trying to make my wishes known. I talk with my sisters and aunts about my fears in earnest, as we can be honest with each other as we all live the same hell of the unknown. I try to leave pieces of myself with everyone I love. I create photo albums, scrapbooks, letters to my son, poems, crocheted blankets, dream catchers, and I wood burn special pieces–all in an attempt to leave behind pieces of me if, God forbid, I ever lose myself.

To be perfectly blunt, I could care less about what others say about my grief. Grief is intensely personal; each person will express it the way he or she feels most comfortable. Grief has impacted my life in every way, but the way I chose to deal with it has made me stronger and more grateful for the little things in my life. I know I have to make the most of the time I have left, regardless of whether I get this genetic defect or not–no one knows what day is their last. But I would be lying if I told you I am not completely and utterly terrified to lose every piece of what makes me, me to this horrific disease.

Jennifer W.

 

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FDA Writes Back

Voices from all across the United States are being heard by the Food and Drug Administration (FDA) in Silver Spring, Maryland.

Help 4 HD International issued a call for action to the Huntington’s disease community on January 28 of this year. We asked as many people as possible to send a letter to the FDA addressing three big questions:

  • Why is there only one treatment approved for Huntington’s disease?
  • Why are clinical trials moving to other countries?
  • Does the FDA understand that time is something we simply don’t have?

We provided a pre-written letter on our web site and invited people to download the letter, add to it or change it or leave it as is, and mail it to the FDA.

Hundreds of people responded to our call, and the FDA is listening. Those of us who sent letters began receiving responses this past week, and the responses are promising. Though the letters appear to be computer-generated, they speak directly to our concerns. In part, the letter I received reads:

Your letter serves as a powerful reminder of the kind of strength it takes patients and their families to battle Huntington’s disease every day.

We understand that Huntington’s disease is a hereditary, debilitating disease with many physical and emotional symptoms that have devastating impacts on patients and their families. We also recognize the critical unmet medical need for new safe and effective treatments for Huntington’s disease.

FDA is committed to working with drug companies and the Huntington’s disease community to facilitate the development of new drugs to treat this devastating disease. We are prepared to use all expedited development and approval pathways available to us to further this mutual goal.

Thank you to everyone who sent letters, and a special thank you to WeHaveaFace.org for partnering with us in furthering our mission and to CIRM (California Institute of Regenerative Medicine) for helping publicize it. We are hopeful that this marks the beginning of a new chapter in the relationship between the Huntington’s/Juvenile Huntington’s disease community and the FDA. We’ll be keeping a close watch to see what happens with current and new clinical trials! For now, it’s important for all of us to realize that our voices CAN make a difference!

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