For People With HD/JHD & Their Caregivers
By Lauren Holder
Figuring out what to get someone who has Huntington’s disease can become more and more difficult as the disease progresses.As promised, here is a list of great gift ideas for a person with HD/JHD, as well as some ideas for the caregivers! Happy Holidays!
- Subscription to Netflix or Hulu or Audible
- Weighted blanket
- iPad or tablet
- Mighty Mug – https://themightymug.com/
- Gift certificates for getting nails or hair done, etc.
- Gift certificates for ice cream or lunch
- Weighted pens/pencils
- Adult coloring books with markers (Osborne Big Color by Numbers Book, Books Dream Big, Draw Bigger, Draw, Doodle Design & Doodle Imagine, Draw) You can find these on Amazon.
- “Tickets of Love”
This is a personally-made booklet of coupons that is filled with little gifts the giver (child or adult) wants to give the recipient. For example:
- This coupon is good for a free foot rub, or
- A free hair wash and style,
- A free nail-coloring session,
- An afternoon walk,
- A picnic lunch,
- A reading from a favorite book, out loud,
- An afternoon ride to the ocean (lake, park, etc.)
Other Great Ideas
- Chapstick (a good stocking stuffer item!)
- Slipper socks with ‘treads’ on the bottoms
- Funny, colorful socks
- Gloves, winter hat, and/or scarf
- Purifying Salt Lamp
- Essential oil diffuser
- Motion detector lights inside and outside the home
- Electric toothbrush
- Memorabilia from favorite sports team(s) (i.e., jersey, t-shirts)
For the Caregiver
- Gift certificate to a local cleaning service
- Hire a Virtual Assistant for an hour or two every month to help with staying organized.
- Create a break for the caregiver! Schedule it, make the plans for them, oversee the help (i.e., getting a manicure or having lunch with a friend).
- “Host the holidays” – Decorate the inside and outside of the home, take care of the planning or the cooking, etc.
- “Tickets of Love” (See above.)
***Please check out https://dailycaring.com/the-11-best-holiday-gifts-for-caregivers/ for these and other ideas for caregivers!***
You can also listen to Help 4 HD’s archived program about gift giving on BlogTalkRadio. Listen to Katie Jackson and Lauren Holder’s discussion at http://www.blogtalkradio.com/help4hd/2018/12/12/gift-giving.
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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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.”
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 #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 #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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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!/* Custom Archives Functions Go Below this line */ /* Custom Archives Functions Go Above this line */
HD Youth: We Are the Future
HD Youth: We Are the Future
By Ashley Clarke
They say there’s a reason for everything.
So there must be a reason my life is affected by Huntington’s disease.
And that is the reason for this blog.
My name is Ashley. And I have a story to tell . . . .
If you have read some of my previous blogs, you will know that I have been caring for my father for a number of years; in total, Huntington’s has been in my life for around 10 years. It is 2016, and we have amazing organizations around the world which offer support to young people worldwide.
At a young age, I was told my father had an incurable disease which I had a 50 percent chance of inheriting. This was a tough pill to swallow; there were no answers for my mother, brother, or me on how to cope with the news or what Huntington’s was/is. There were, on the other hand, plenty of horror stories, and this is what I filled my mind with.
I was obsessed with Huntington’s disease and what it would do to me. I was obsessed with it taking over my life and taking control. I had to be in control! Control was something I did not have and still do not have. I cannot control what will happen in my future; I do not know if I will make it to 50. I understand that no one knows what will happen tomorrow, and the most frequent thing which would be said to me would be, “You could get hit by a car tomorrow,” because getting hit by a car is the only thing that can kill you, right? There are millions of diseases and millions of different ways to die, but I have a 50 percent chance that my way could be because of Huntington’s disease.
At the age of 16, I decided to organize a fundraiser for Huntington’s Disease Association Northern Ireland. They had been supportive of my family in the first few years of Huntington’s entering our lives again, and I wanted to give something back. I was obsessed. This night had to be perfect. I held it at our local hall and had a friend come and be the DJ. I got tickets printed and sold them for £10, I think; friends and family donated raffle prizes; my father’s late brother donated a lot of tools from his hardware store; and all night, people were coming up to me, giving me large amounts of money. The bar alone donated £250. In the end, we raised £1500, which was overwhelming! I got up on stage and made a speech. I thanked everyone for coming, and there was no surprise, but a fight had broken out, and I told the entire room to wise up, grow up, and remember why we were here, and what we were supporting.
As said before, I was obsessed. I had spent months planning this night. I had made a presentation to be played on the night about Huntington’s disease, and watching it now, I’m not entirely sure all the information on it is correct; there’s even a spelling mistake! A friend of my dad’s made DVDs of Dad and his friends skiing on Lough Erne over the years, before his plane crash. Once the night was over and the mini bus I had arranged to bring people home was done, it was time for Mum, Ryan, Mary (a family friend), and me to head home to our house in Killylea. We got home, and everyone headed to bed. I sat in the living room with the light off watching the DVDs of the man my father used to be, crying hysterically because I was losing my dad, and I didn’t know what to do next.
I felt lost. I was lost.
I am now 23, and it didn’t exactly get any easier. There was no support, doctors, social workers, and health professionals. Everyone was concerned about how Dad was and how the disease was progressing, and I understand that more than anyone. I watched him every day deteriorate and continue to do so. Carers are important, too, though. As much as my father is my life and his care and well being are everything to me, my mental state is important as well. My future is important.
Having a youth programme for the young people affected by Huntington’s disease is vital. Society needs to look after young people’s state of mind and ensure that they get the information they need and not scare stories. Most important, young people need to get the support they require, trying to cope with the fact that a loved one suffers from a disease which is incurable and the fact that the same disease may take their life.
We need to support the young people and show them that Huntington’s disease does not define you; it is not who you are. It may be a large part of your life, but that’s just it, a part of your life, not the entire thing.
It took me many years to realize this, and through #imnotdrunk I would like to get this message out to the world.
You can still do everything you want to do, go to university, travel, and live your dreams. Huntington’s does not have to control your life; you can still be positive and live the life you choose. Take control. If you want to get tested, then that’s your choice, and don’t let anyone take that away from you; if you do not want to find out if you have inherited the disease, then that’s also fine. Whichever your decision may be, let it be your own, and continue to live your life how you want to.
You can follow Ashley’s blog here: https://kyraashley.wordpress.com/
You can follow her on Facebook here: https://www.facebook.com/hdawarenotdrunk/?hc_ref=SEARCH
You can also follow her on Twitter at #imnotdrunk
This blog originally appeared on Ashley’s blog on October 11, 2016./* Custom Archives Functions Go Below this line */ /* Custom Archives Functions Go Above this line */