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They Raised Two Children With Huntington's Disease

Hope for the Caregiver / Peter Rosenberger
The Cross Radio
May 18, 2022 3:30 am

They Raised Two Children With Huntington's Disease

Hope for the Caregiver / Peter Rosenberger

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May 18, 2022 3:30 am

May Is HD Awareness month, and our guests for this episode were Drs. Elton and Laquita Higgs. The couple adopted a little girl many years ago - who developed Huntington's Disease (HD). One of the most horrific diseases on the planet, HD eventually cost their daughter her life - but not before she had a daughter who also developed the genetic (and terminal) illness.

Listen to their inspiring and insightful story - from their book, SHATTERED DREAMS - BUT HOPE: Encouragement for Caregivers of Huntington’s Disease and Other Progressive Illnesses  

For more information on HD, please visit HDSA.org (The Huntington’s Disease Society of America)

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Me know. Only this program for you as a family cured my wife Gracie from receiving resilient see that my life is in your hands that messages particularly poignant for my guest on the program today. You know, our program is designed specifically to help those who are caring for clinically impaired loved ones in my opinion. Nowhere is that more brutal than caring for somebody with Huntington's disease. Those of you regular listeners to the program.

You've heard me talk about Huntington's disease several times of spoken at several conferences national conferences dealing with this particular disease and this disease was in my father's family. So grateful that it wasn't passed on to him and subsequently to us.

It is a horrific deceit and no one knows this more than the couple I want to introduce you to today Dr. slick Wieder and Elton Higgs. Their new book is called shattered dreams but hope and encouragement for caregivers of Huntington's disease and other progressive illnesses. Now for those of you unfamiliar with this disease. It is a genetic disease that is loosely the combination of Lou Gehrig's Alzheimer's and Parkinson's, and maybe a little bit of schizophrenia all rolled into one. It is a horrific horrific disease. You don't necessarily know that you have it until your of AIDS a contest for it now at 18, but symptoms don't start showing up until you much later. Often times, sometimes into your 30s, maybe even early 40s. If you have this disease. You have a 50-50 chance of passing it on to your children and they won't know until they are of age. It doesn't diminish over time. If you get it you get it in all its full force now once it's broken, it's broken and the family can go on without having this looming over them, but it is always fatal. Once contracted my guest today know this all too well. They adopted a little girl just a baby and she developed this and it took the entire family into a very dark dark place. This daughter her name is Cynthia eventually had a child and the grandchild developed Huntington's disease as well. But when the grandchild was little baby Cynthia. By that time, her Huntington's disease was already going and she couldn't take care of this baby and so they adopted their grandchild and raced to girls with Huntington's disease there here to share their insights things they've learned of the painful journey, but ultimately the hope that has sustained them so Outlook Wieder welcome to the program. Absolutely, I want to start off with you Coweta. As I was reading your book are certain things just leapt out at me and one of those was on page 32 you over and over kept trying to change Cynthia's behavior to hold her accountable and you became so puzzled that she was able to make choices for why can she choose to be reasonable you would want to become agreeable and kind around people she wanted to impress and then become very rude and sullen with you and abusive with and as you share in the book Huntington's patients as well as called HD Huntington's disease is called HD. They can choose to be reasonable at times, but they can't sustain it. It's it's fleeting for them. Talk little bit about that liquid where it might be. Keep teaching them to child and yet were, and it takes in current well to learn that it took me a long time to realize I got to just accept her as she isn't, whether I like you don't enter member.

It's hard to get that collect and I made many take in trying to get in trying to understand it all. There have to be boundaries sometimes but they there to be necessary boundaries and not just preferable right. I remember so well. After this, actually been through an awful lot with Rachel and delete each centerleft net. Now she just graduated high and decades that I think now is the caregiver not parent and made it may sound simple, but it made a big difference to me. I can just accept her mother and not try to change it because it was counterproductive not tried to try to stop her from doing just go ahead and expect to fit one of the things you can expect it's only what is it proper care and when case is only a plant just go ahead and let her tear and cut it out.

It's okay. You references in your book you said they have childish behavior but they can't grow and learn as a child, they are locked in that place and they have serious consequences for their behavior.

Whatever they desire.

At that moment is unleashed without any thought to safety or common sense over consequences are other people and this is where you found yourself for many years and and I don't think people quite understand the heartache. This involved with HD you all had to have law enforcement come to the house and other first responders come to the house numerous times they have dessert behaviors childish tantrums with adult consequences, violent, destructive, adult consequences where you were concerned about her life and euro want to pause for just a moment point listeners to HDS a.org Huntington's disease Society of America.org. It's a wonderful resource for you to go and learn more about this he was going on. May is May is HD awareness month, and this is an appropriate time to go out and learn more about this disease and what's going on with what's new in treatment and how families are coping with the families like the Hicks family that were talked with her about 1/4 million people in this country. I believe that are struggling with this and their families, and it starts all it's a progressive disease so you'll see twitching in some of these become Huntington's Korea at UC symptoms. The body acting very spaz tickly, and then the cognitive component starts kicking in. And then it just decisions and to just horrific circumstances for these families until I think 1993.

There was no way to diagnose with this was unless it was just through observation. There are now tests that they can do to identify this disease and there are resources being developed every day, but as liquid as you stated in the book. Unlike Alzheimer's and some other diseases.

Progressive diseases you can kinda wrap your mind around some of that but with this disease. It kinda comes at you from every front, and their young people dealing with that.

They're not elderly people.

Rachel was diagnosed when she was still a teenager. Cynthia believe was 25 when she was officially diagnosed with this is that right 25 so you're dealing with someone who is vibrating young and you as of the exciting life and then this thing takes a hold of them and in fact it was one place about you related story where first responders had to come in and literally haul her way and you went out to meet with the verse to plead with them to be gentle because she has a disease talk about that yet. When it went out to mention I felt they really needed some preparation before coming in the house but I'm sure that there there a lot of cases there called out to take care of domestic violence that is not the frame of reference that they needed in order to handle the situation with Rachel L painful 50 child killer gurney, but it it okay lately just wanted better treatment. It and thankfully we have brochures now that the patient wishes that we can give to your local law enforcement to help them understand when kind Cynthia went almost arrested for drunken myth because they stop the policeman saw her walking down the top.

She was drunk and the thing happened when they're out in the community to expect a lot of law enforcement. I know quite a few shifts that using cops and they all echo that going to the domestic events some type of situation going on in the home can often be the most dangerous call for law enforcement and the more education we can provide them well for you if I got a friend of ours who has a son with significant mental issues.

Peace, like six, three or four but like almost 300 pounds with Utica and one particular event.

He came to the door with a paintball gun and that could've gone really really bad so something think about it, please are called in the big hulking guy shows up in the doorway looking like he's carrying a weapon, even if it's just a paintball gun.

That's a recipe for disaster. In your case you had both daughters law enforcement was called numerous times for both of them different times a course in an and they don't know what to expect. They don't know they just see somebody that's out of control and is not math. It's not cocaine is not heroin. It is a disease, a disease that is beyond what most people could really wrap their minds around. There was one scene you mentioned the button and the reasons for this much time with this is it more dispensable time is the show unfolds as I want people to understand what a disease of this magnitude does to the family so that they can offer more encouragement and compassion and not lecture try to preach it and there was one particular passage liquid liquid where you stated it broke my heart because you said I just got tired of talking about it. I didn't want to have to keep explaining what HD was to people. It was just exhausting to you talk about that little bit. It occurred right there but try to do that but they Did not know our mall but we all have that I not normal barely are again to be quiet and talk about this some more in the next several blocks of the program were talking with doctors Lita and Elton Higgs in their journey with Huntington's disease with their daughter into their granddaughter. They ended up adopting care for both of these women through this horrific disease. This is hope for the caregiver will be right back up euros burger many years ago when my wife Grace became a AA PT. She sold the importance of quality prosthetics. He saw the importance of a support team and people that could help her regain her life after losing both legs. She had this vision of creating an organization that would help others do the very same thing while pointing them to Christ and for more than 17 years we been doing just that we purchase supplies. We send equipment and we trained recent teams over to West Africa.

We been working with the country of Ghana. Several clinics over there now and each week more people walk because of Gracie's vision 2011.

We watched the new program outreach to family caregivers. Drawing on my mail 36+ years is gracious caregiver through medical nightmare. I offer insights of learned all of the hard way to fellow caregivers to help them stay strong and healthy will take care of some not you would be a part of this go out to stand without.com/giving stated with a calm/giving more steady without reaching those careful steady without.com/giving. We know the caregiver this program for you as a family caregiver hope caregiver.com report program for mother. You can fill out.

Let us know what's on your mind and heart. I am talking with doctors liquid and Elton Higgs. Their new book, a shattered dreams but hope encouragement for caregivers of Huntington's disease and other progressive illnesses. And while there journey describes their interaction with two daughters with Huntington's disease. The insights and the principles they learn they apply across the board to all of us is caregiver someone to take a little bit extra time with this is Huntington's disease by the way Scott HD let me get right back to this Elton in the book you referenced in online posting that you did to it HD group here's here's what you detailed you said I think that what we all experience is Huntington's HD caregivers has at its core. The disappointing expectation that our love one could do better than she does or he does during Ford. Obviously handicap person or crippled, mentally deficient from birth or even Alzheimer's seems so much more straightforward since there's no perception that the person could do more and you went on to share that even taking care of a baby, even though the baby seems to consume all this time and everything else you don't. We don't look at the baby is being perversely selfish it's a baby.

We understand it, but with HD they act perversely selfish, but at the same time, other able to reason certain things out. It seems like a very selective what they will do what they wanted with the kid with the captive and it causes a great deal of confusion with the caregiver talk little bit about that person who spent my career in an academic setting an academic setting is supposed to emphasize the use of reasoning and logic and so on and you try to proceed on the assumption that you just speak, Leanne would common sense that you're going to be successful in whatever relationship you're trying to manage and all that is out the window when you're dealing with Huntington's patient Huntington's patient may not even herself, be able to understand the lack of logic and what they're doing and if they don't understand somebody outside their minds pretend to comprehend it. And so that that was a big adjustment thinking and approach that both of us had to accept that liquid is already expressed you your responsibility to keep the environment safe and put whatever boundaries I need to be in place that but in matters of preference or convenience. Always be prepared to deal some ground expectation where there is much life are Rachel, 28-year-old daughter diagnosed just before great birthday and she she knew Huntington's lot looked like it. She watched her mother die biological and Beth Twilley got the title shattered during expectation. She had normal my eventually be married children whatever career she wanted no she knew that with Barry painful time tracker. She became severely depressed in your journal and life. You talk about how important it is to keep a journal like seated. Talk about how important is to keep a journal for those who are going through done with this, but other things, but you wrote in there.

Not only was she acting like a child but enforces he was nuts claimable like a child that must've been a very painful thing for you to right now. Imagine you have a lot of tear stains in your journal right and I agonized over my role and I knew I loved it. Doing it well. Not many count for me but it was very because later we could look back and trace behavior and that was especially important with social target for them to document certain behaviors mounted appointment to the doctor a lot the anecdotal journal that I can't. I can't. I can't went 20 official appointment but admitted medical yet the anecdotal Journal told the day-to-day apostolic start activity that was sell you a question.

It felt when I wrote the book and read it. I cried out. Let whichever one of you wants to address this, but I want to read this from the book once after a suicide attempt. Since you had to be taken by ambulance to the University of Michigan emergency room where she tried to escape to the staff managed to catch before she ran out the door. But as they dragged her back.

She screamed at me, why are you letting them do this to me, those words pierced my soul and still bring tears to my eyes. She had to be put into a straitjacket for a few hours and then you wrote this lot yes love sometimes means that we have to do some very hard things you wrote that liquid about whichever one of you wishes to unpack that pleased every time we had to call the police. Something out with painful it was so difficult because that way we normally operated happened to her child, stating I think we need to interject here, though, that we, in our present situation, see the hope side.

We went through. The bar living together and being their first chance to see the shattered dreams not be able to fix it just had that sort of find ways of putting parameters rounded medically, that says love to the best of the ability of the God gave but we were just in a counseling session today, and that right there with Rachel. The counselor at that, but we were able to tell him that things at present are working well between us and Rachel.

In both cases that the daughters behavior became so extreme that we reject. We couldn't handle it well. Both when placed into adult foster care and with specially with Rachel now think it helped that we had learned a lot. We have a wonderful relationship with because we not that parent trying to keep her on the straight and narrow but cheap. At least we just enjoy each other. We have our home with 15 days a week and she's here right now. In fact that's beautiful experience and so you know, I don't think without going to go ahead without me shattered dreams and an expectation that will never be met with better people far and I'm thankful that the Lord led us onto the bed very specifically befell we were to adopt field and I know were far better people would something I would like to spend a little bit of time with you.

All you writing this the Lord is teaching us the meaning of true love. You love even receiving nothing, not even a smile or a kind word and return nothing and I don't think anything describes better love the Savior has for us. Paul said he loved us while we were yet enemies you two had to walk in that type of love where your child was screaming at you abusing beating you tearing up your stuff cheating you everything and you had to walk through this and love and I wanted to give it up to you to share how you've tapped into the inexhaustible love of God to do this for your daughters that you adopted and then your granddaughter who you also adopted Hilton would you take them.

One of the practical things that we learn in very tense situations with both daughters was just a stop right in the middle Guido nine and say a prayer. You know where Univar which they really don't react.

Pardon me for interject both of your PhD's, but I'll bet you those prayers were very academic, with not not not publishable.

Prayer assume we get that but you know I think those are the best prayers and I think they reached the heart of God because we don't know what else to do. Dear Lord help us Lord help help is a complete prayer time and time again.

He came through. We were able to find some way of resolving the situation whatever it wants the ideas.

His mercies never and they are new every morning in the face of something so horrific as Huntington's disease. Now like to say the longer we live the better the Lord Lord's record for talking with Drs. McLean and Elton Higgs in their new book, shattered dreams, but hope and encouragement for caregivers of Huntington's disease and other progressive illnesses. If you want to know more about this disease and how you can navigate through it.

If this is in your family or how you can help others to go to HDS a.ward as Huntington's disease Society of America.for their lack of resources.

There materials education community and so forth. This is a horrific disease. These are very highly trained intellectuals, academics who came up against something that was beyond their imagination of difficulty in pain and sorrow, but they persevered through it and established a beachhead for hope to talk more with them. We come back.

This is Peter Rosenberg.

This is hope for the caregiver hope the caregiver.com will be right in this. This is the bread of review is a family caregiver so glad that you is healthy. Caregivers make better. Part of that journey to healthiness is not doing this in isolation, which is one of most crippling things we as caregivers can do this part of the program and I want you to go out. Hopefully caregiver.com you can see more information we have our podcast blog writing music you hear stuff from Gracie that you just heard coming back from the break that from her CD resilient all of this is available@hopeforthecaregiver.com or talk with Drs. Lou Guida and Elton Higgs in their new book, shattered dreams, but hope encouragement for caregivers of Huntington's disease and other progressive illnesses available out of Amazon and other places. I'm sure as well. This disease is a brutal disease with massive complications to those who are involved with in their journey done. We spent one individual, but a second individual what happens. Often times it is a share in the book the disease affects the cognitive and reasoning part of their patient and they become uncontrollable. They act out sometimes sexually, and this is what happened with their daughter that they adopted it. She got pregnant she was not able to take care of the child and look we do and Elton adopted their granddaughter, who they knew had a 50-50 shot of contracting this disease. That's the nature of this disease and their oldest daughter has passed away and their youngest daughter still living, but she's in an assisted facility because she's very difficult to take care of as many patients with Huntington's disease become there's one particular part of the book that you will reference we had stayed in front of a judge, and law enforcement sadly is very much involved a lot of family members with Huntington's disease and you guys basically stay there. This judge is accusing you will be in bad parents really hard talk about that and not gotten her homework sufficiently to know what she was dealing with.*This is just the adult child engaged in disorderly conduct and the parish is not a better job. You couldn't speak back to the judge, you need about 20 minutes to understand.

You just have to swallow it and go on and that when you're out in public and people stare you know where to you can't stop and explain what going on. You just have to assume it's going to take place in go your way and be a little bit thick skin that had to be paid to translate that experience and expression from earthly judge to your coming to understand yourself before the heavenly judge are heavenly father and how he views you all through this and how that's changed in your life. Good way to approach it and I would say that as we heavenly judge. We don't presume to say, well, Lord. We finally got it right. All we can say that in a minute thank you for being faithful and not giving up on us as caregivers and continually renewing our strength, giving out sources of getting new information that would help us in the process of dealing with those were caring for sometimes as caregivers. The judge that we stand before each day that condemns this is ourselves judgment on ourselves.

You reference this in the book several times that you both have done this yourselves and your judging yourself and you had to wrestle with that concept.

Okay why am I putting this on me when my heavenly father is not, and I think this is where we all what I said things the human condition.

You know this is this is who we are as is human beings, but we just deal with it extensively and relentlessly in the crucible of caregiving. But what would you say to others who are getting up every day look at the mirror and judging themselves without mercy, very much like that judge that you all stood before who just railed on you and had no comprehension of what she was dealing with. We treat ourselves that way.

And yet, our heavenly father does not is God of mercy who sees us and our distress that he provides for us in this reveals himself to us. These are things you've learned along the way. In your journey liquid Elton what would you say to someone who is getting up in the mirror every day and passing judgment on themselves. Current Christian prayer to trust God that fell very much more than evenly. We think we can affect children and we did not fit statement: the right people talking about being afraid or something are having a hard time trying to not convey lounge you going to get a drink here all night because you can't trust. I think I would say to people. First of all, were all in the same boat and we need all of us together to be continually reminded that our standing before God doesn't come from anything except the blood of Jesus that covers all the bad stuff and makes the stand before him as his children. It's amazing idea of being a child of God is treating us with the compassion that we know how to treat our own children. Why should we think anything less of God and also, can we really think about God as one who not only expects us to bear the burden. The intolerable burden, sometimes of caregiving, but that suffer guilt for not doing it well enough.

Can't conceive of God being the kind of person who is subject to that double jeopardy and I remember when Cynthia first went into foster care. I titrate so often are tricky and chopped forgive me. I wish I could do it then finally Rachel came along and I got back teaching not showing even now in our stage of life, when, where, more limited energy still enables the who what we can regard Rachel a lot of people may say the words that you just said about the faithfulness of God, but they don't say it with the resume of caring for someone with Huntington's disease. When you say this, there's a way to it and and I understand that because I have a small taste of the journey behind as a caregiver for keeping a journal to record things that go on and anoint the lot and so often we flip back to when we first chose to it.the first week we were offered really gently but take a hectic Child. We Artie had one child, and when I read about much back when I read that no way it can't. They talked about psychiatric changes and we did continue praying and they did not know yet you are to adopted child going back to that we've gone back to more than that the Lord will come to believe that whatever circumstance where it thankfully on the morning in the thankful first Thessalonians 518. I think it to be grateful for where he put it, even though it's so hard there's reason I it gives us the opportunity to care for one of the little mention in Matthew 25 four is not to get done it 58.

Click on anything and to remember in the last minute or two that we have this quote. There is a need for all HD caregivers. This is from your book.

There is a need in all HD caregivers not to give Huntington's disease any victories, but in addition to that for believing caregivers. There is the need to trust and praise God for the abundant life that he is so willing to give both to us and our precious love ones. Let God love you and I think that's an appropriate benediction to this message that you have brought to us today is a sermon from your life. Your life is a sermon and it is a testimony to what God can do with such harsh circumstances, I would encourage folks to get your book spent some time with it in and if you know someone who is dealing with Huntington's disease. Please be willing to reach out to them after you read the book don't do it until you've read the book to get a real understanding. It's available out on Amazon and other places and it shattered dreams but hope Dr. Eldon liquid of Hicks. I want you both know how much I appreciate you coming on the program today ensuring your heart. Your insights and your journey with.

It is a tough journey that you all had that I marvel at what you come through this in what you're able to do for so many others want to know much appreciate you being here with this is Peter Rose.

This is hopefully caregiver hopefully care.com will see next the views and opinions expressed in this broadcast do not necessarily reflect those of the American family Association or American family radio