January 08, 2006
Depression And Huntington's Disease
Do you have a loved one who has Huntington's Disease or is at risk? (Of course I do, otherwise why would I be here?)
The outstanding researchers at the University of Iowa interviewed Huntington's Disease patients on the issue of depression. Half reported that they had sought treatment for depression and more than 10% had at least one suicide attempt.The researchers conclude that many HD patients are being adequately treated for depression.
Since there is evidence that anti-depressents not only reduces the chance of suicide but also might slow the progression of Huntington's Disease...Why aren't more people with HD prescribed an anti-depressant?
J Neuropsychiatry Clin Neurosci. 2005 Fall;17(4):496-502.
Depression and stages of Huntington's disease.
Paulsen JS, Nehl C, Hoth KF, Kanz JE, Benjamin M, Conybeare R, McDowell B, Turner B.
University of Iowa, 1-305 Medical Education Building, Iowa City, IA 52242, USA. jane-paulsen@uiowa.edu
Individuals with manifest Huntington's disease (HD) were interviewed with regard to the presence, frequency, and severity of depression symptoms to better characterize depressed mood across the disease course in HD. Rates of depression were more than twice that found in the general population. One-half reported that they had sought treatment for depression, and more than 10% reported having at least one suicide attempt. The proportion of HD patients endorsing significant depression diminished with disease progression. Despite the public health impact of depression, available treatments are underutilized in HD, and research is needed to document the efficacy and effectiveness of standard depression treatments in this population.
PMID: 16387989
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December 08, 2005
I Wish
I wish I could write better.
My (new) wife doesn't understand it when I say that. She thinks I'm a wonderful writer. Perhaps what I should be saying is "I wish I was a better communicator". Of course, some would say that by virtue of my being born male I come with a natural disability to communicate. They might be right.
Gene Veritas has the ability to communicate. He's written another wonderful article on this At Risk For Huntington's Disease blog.
In his latest he touches on spirituality and the "Why?" question. As I read his article I'm reminded at how reluctant I am to mention religion when I'm writing on this blog. After all, I don't want to "offend" any one. That would be insensitive. Or at least that is my worry.
But I see Gene and his father struggling with the same questions that I and others face in our lives. "Why?" being the big question. And while I occasionally fool myself into believing that I have the answer...I eventually find myself second-guessing my "answers".
I suspect part of the elusive "answer" can be found here in what Gene wrote:
Over the past fifteen years, it has helped him care for my mother day after day and to accept her gradual but inexorable decline into the infant-like helplessness HD causes.“You’ve shown a lot of strength,” I told him as we went out for a drive one night.
“I didn’t know how much I loved your mother until these past few years, taking care of her and seeing how much she has lost,” he said.
His father's faith gave him strength and it allowed him to learn the depth of his love for his wife. A gift wrapped in a tragedy. To me, I see that Gene's compassion was learned from (at least) his father's example. As a result, his writings in his blog allows others to know that they are not alone in their struggle.
And what a struggle. I've seen the same struggle watching a dear friend when she visited her father in a nursing home. She too, found comfort and strength through her faith. While we don't cross paths anymore, she's stil included in my prayers. Next time I'm adding Gene and his family to my prayers. While I can't prove that prayer makes a difference...I believe that it does.
For those that might find such beliefs to be quaint (or even offensive), prayer for others is done out of selfless compassion. Is that really such a bad thing??
Don't forget to visit Gene's blog.
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September 06, 2005
Disability Benefits - How To
This is the best resource on the web for information on applying for disability benefits for those with Huntington's Disease - http://huntingtondisease.tripod.com/benefits/index.html
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July 19, 2005
Transitions
Gene at http://curehd.blogspot.com/ is always a treat to read. He's posted a heart-wrenching article on his family putting his mother into nursing home.
Take a moment and visit Gene's blog. He writes what many fear to say.
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December 20, 2004
What Would You Say...
To the man in love with an 'at-risk' woman?
Scroll through the comments to this post to find a question from a man who is dating a woman who has a chance of inheriting the HD gene. He asks the questions (mostly of himself) that myself and many others have asked when dating someone with a medical condition in the family.
Please post your comments or suggestions to this post or that one.
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October 28, 2004
HD & Flu Shots
This came up on the Hunt-Dis email discussion group.
Naturally the question of whether HD patients are considered part of the "high risk" group that should get flu shots. Marsha Miller called the CDC and "they confirmed that there was no intention of excluding Huntington's Disease patients from the list of the chronically ill. They suggested that we visit our the websites for our state health departments and see what their guidelines are, and then call for clarification.
I think we should point out to the authorities that voluntary movement, swallowing and coughing to clear secretions are impaired in later stages of the disease and that 51 percent of people with HD die of pneumonia (I got that figure from the HOPES site)."
Thanks for doing that Marsha!
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September 19, 2004
Tijuana Frauds
It's been a year since I wrote on it, but our community is still be being robbed by the Tijuana conartists that promise cures for Huntington's Disease.
"Live Cell Therapy", whether from (supposedly) a shark or some other animal seems to be the most popular and dangerous scam.
Here's a good article (Part 1, Part 2)on the Tijuana scams from the San Diego Union-Tribune. Here the link and some excerpts:
Live cell
What it is: A therapy that involves injecting into patients living tissue from animal organs, embryos or fetuses.
Whats claimed: Material from the healthy organs, tissue or fetuses of sheep, cows and other animals repair human cellular damage and heal failing organs by stimulating the bodys healing process.
Whats known: There is no evidence that cell therapy is effective in treating cancer or other diseases. Serious side effects can result.
And more...
Yet health-fraud experts and mainstream doctors say the clinics offer little more than a pseudoscientific twist on faith healing, providing ineffective and risky treatments to patients who sometimes deplete their savings and mortgage their homes to pay for them.
Even some staunch supporters of alternative medicine and patient choice are suspicious of Tijuana's offerings.
The words buyer beware should be engraved on a sign over the border, said Ralph Moss, editor of The Moss Reports, a U.S. publication that reviews promising alternative treatments throughout the world.
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February 28, 2004
What We Don't Talk About
There is one, big elephant in HD's living room that nobody discusses.
If you look through the over 6200 studies and articles related to Huntington's Disease, you'll find virtually no mention.
If you do a search on the web, you probably won't find anything.
If you go through the literature on Huntington's Disease you won't find it.
Yet it is common in our community. Care to guess what it is?
It's spousal abuse of caregivers.
A significant number of caregivers are abused, physically and otherwise, by the person they are trying to take care of.
I know of examples of physical abuse that go back at least three generations in one family. One time when I was with a group of former caregivers the topic came up and many admitted that they had been abused by their spouses.
It's real, it happens, and if you are being abused you are NOT ALONE!
It's time that the doctor's and other health care workers pay attention to this. It's time we provide resources for those in these situations so they'll know what to and/or have someplace to go.
Does abuse happen in every situation? No.
Does it happen in MOST HD caregiving situations? I don't know.
If I had to guess, I'd say it happens in at least 1/3rd of the caregiving situations. Carol Carr isn't the only one this has happened to!
It's time we address this issue in our community. HDSA and other HD support organizations...are you listening?
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January 28, 2004
Three Sides Of Huntington's Disease
I've just finished a 16-hour day and an early day tomorrow, so this will be quick.
But there is so much to write about, including a couple of interesting Huntington's studies. I'll be writing on those after I've had a chance to really go through them.
Until then, a thought...Health care professionals don't always acknowledge all three sides of Huntington's Disease. What are they?
They are the emotional symptoms, he mental (cognitive) symptoms, and the physical symptoms.
Far too often the focus is mostly on the physical symptoms. Heck, the government usually doesn't grant disability to those with HD until the physical symptoms reach a certain point, no matter what the state of the emotional and cognitive symptoms.
These three areas hit those with HD to varying degrees and at different rates. Each area comes with its own unique issues.
Heath care professionals: Don't forget to recognize and treat all three areas. Chorea is only a small, though visible, part of the disease.
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January 25, 2004
Equipping Yourself
As a caregiver, do you sometimes feel lost and wish there was a 'map' to guide you? Trust me, you're not alone!
Marsha Miller has written a wonderful article that, if followed, will save any caregiver untold time and frustration. Read, reread, and then read it again. There is a lot of hard-won wisdom throughout the article.
Go, and read it now. You'll be glad you did.
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December 08, 2003
Clothes For Easy Dressing
MedPundit points to a great website for clothes that are designed for easy dressing. The website is: http://www.nursinghomeapparel.com
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December 01, 2003
Physician's Guide
If you're a caregiver and you haven't yet gotten a copy of the Physician's Guide to the Management of Huntington's Disease, you really should get yourself a copy. While you might find it a useful resource, it's invaluable for medical professionals who don't regularly work with Huntington's Disease patients.
If your loved one is in assisted-living or long-term-care, give a copy to the administrator. Same goes for any in-home assistance you may have, physical or occupational therapists, speech pathologists, general practitioners, psychiatrists, psychologists, or social workers. You'd be surprised at how many will actually read it. It makes their life easier, as well as yours.
You can either order a hard copy from HDSA (click here) or you can download a copy in PDF form from the Huntington's Society of Canada (http://www.hsc-ca.org/english/pdf/Physicians_Guide.pdf).
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October 27, 2003
Tips For The Caregiver
Gerri on the Hunt-Dis email list posted a great message a couple of months ago to a caregiver that was faced with many challenges. There was so much wisdom and knowledge in that message that I asked her if I could post part of her message here and she was kind enough to say 'Yes'.
Here's her message with some comments:
While my husband has not yet had the leg cramps and contractions, he is in his 18th year of HD and still doesn't accept that he has it.
Denial, as most caregivers know, is a common symptom.
Actually, about 6 or 7 years ago I decided to just drop the subject, as there was nothing to be gained by that time.
No sense fighting a battle you won't win.
I'd finally established a routine with medications that were working and I (key word: I) just compromised and/or adjusted to everything else.
'Compromise' and 'Adjust' are two of the best tools for effectively coping with the situations caregivers face.
However, in the earlier years there would have been much to gain, not the least of which would have been his cooperation with medications and treatments. He raged and carried on and was often violent.
This is often hidden in the HD community but physical, emotional, and mental abuse is fairly common (and treatable with medications).
Everything was my fault, or our sons. There were some pretty tough and pretty scary times.
Very common when not on medication. I've heard so many people talk about virtually identical experiences. The person with HD really can believe they are 'normal' and their spouse is 'wrong'.
Without going into the grim details, let me say I can well relate to what you are going through. I'm sorry that you are in this position. I think these kinds of behaviors and the denial are about the toughest things to deal with in this disease.
Very true. This is very hard on loved ones, especially spouses.
For starters, (he) clearly needs medication intervention. At the least he needs, perhaps, an anti-psychotic.
I know we live in an age where we tend to take a pill for everything, but medication really is needed in these circumstances. The chemistry in the brain is thrown off and these medications help bring it back to more normal levels. It gives the person with HD (and their family) a degree of normalcy. Studies are even indicating that anti-depressants may help protect the brain against Huntington's Disease.
A good doctor, preferably familiar with HD, will help you through that. ... (doctors can refer you for OT, PT, Speech/Swallowing evaluations and therapies don't forget)
An doctor with active experience with HD makes all the difference in the world. This will make world a world of difference in the quality of care.
I have a few suggestions, from my experience, about other things you can do. I believe that, when faced with such extremes of behavior and symptoms, we have to seek extreme solutions.... devious methods, and whatever works.
Too often caregivers don't do what is best for the patient because of misplaced guilt. If it's in the best interest of the patient you're probably doing the right thing.
Now, without knowing a lot about (him) some of this may not be helpful for your circumstance but here are a few of the things I did with Charlie.
This is great advice...
I lied when necessary... I didn't tell him why we were going to the doctor.
This isn't even a lie. So much of the grief that comes from caregiving goes away when the caregiver learns that sometimes it is best not to provide alternatives or advance notice. Many times a 'matter of fact' statement is accepted without thought, especially if it is said in an ordinary manner.
I would make light of it saying it was a regular checkup, an annual physical, or to check on his ingrown toenail, for example -
Doesn't even have to be a lie, just don't provide the information that makes them uncomfortable. It's less stressful for them.
but I made certain to write out all my concerns for the doctor, in advance, and to instruct the doctor which things could be discussed in front of Charlie.
An experienced doctor is used to working this way. Again, this is a great way to minimize the stress on the patient while giving the doctor the information they need to know.
So, first you have to find the right doctor and maybe have a private appointment with him in advance of him seeing (your spouse).
Visiting in advance is a great suggestion but it is rarely done.
You have to have the full cooperation of the doctor so do some interviewing and don't be afraid to "fire" someone who doesn't get it. I did that a few times too.
Great, great advice. Be willing to fire any medical person who isn't doing the job. There are good one's out there. This is too important to just accept poor medical care.
When Charlie said he didn't have HD and didn't need medication, I said "fine" and gave them to him anyway.
This is where 'guilt' works against the caregiver and the patient. The medications are a critical element care of the patient. And they may also allow you to keep your sanity!
I didn't tell him the truth about what kind of pill I was giving him (for all he knew it was a vitamin)
Again, why distress the person if it isn't necessary. This isn't being 'dishonest' this is being 'caring' and doing what is best for them.
Sometimes I even dissolved or crushed them and put them in his food - the mayonnaise on his sandwich, or in a bite of oatmeal, soup, or applesauce. To make sure he got the bite with the meds in it, I'd put it on a spoon and say, "Here taste this. Is it _______ enough?"
Note: she didn't say "Would you like to try this?" which would probably get a "no". She just went ahead and did it. This technique works in so many circumstances.
There were times with his temper and raging that it worked for me to just put my foot down! When he was in that state there was no reasoning.
The temper and anger have nothing to do with reason and everything to do with biological factors. Trying to reason in these circumstances is futile. It'll just escalate the situation.
He would get out of control, like a little child, and so I would respond like I would to a child. "Screaming is NOT ok!!! You may not scream! Now, sit here and watch TV and calm down!" He would look so surprised at my sternness
that down in his recliner he would plop, and then I would help him find a tv program to watch. It didn't work all the time but when it did, it was such a relief.
Every situation is unique, find what works for you. Note how she didn't provide options, she just stated the way it was going to be. As I've said before, this technique can be effectively used in many circumstances.
But, honestly, the right medications made ALL the difference!!!!
So many caregivers are afraid of medicating their spouses/loved ones. Get over it! It's in the best interest of the person trying to deal with Huntington's Disease.
The thing I want to reiterate is that there almost always is something that can be done, though it isn't easy always to figure out what. What is the alternative, after all?
There are ways and there are people who have been there before you. Support groups (online and in-person) are a great resource for the caregiver.
I'd like to add one thing here:
You, the caregiver, MUST be taken care of first. If you do not take care of yourself then you will be unable to take care of your loved one. Keep a hobby, find ways to continue to do things you enjoy, get help, listen to music, drive, do whatever it takes to keep your sanity. Like on an airplane: Put on your air mask before putting on the air mask....(you know the rest).
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July 02, 2003
Taking Care of the Caregiver
Remember the last time you flew on a plane? Before takeoff they give you the emergency instructions. One instruction surprises many people: Should the cabin lose pressure air masks will drop down from the ceiling. If you are traveling with a small child put your mask on first Waaaa? That cant be right! Were supposed to take care of our children!
Actually that is right thing to do. You cant take care of your child if youre passed out in your seat. Its the same thing when you are taking care of a person with Huntingtons Disease. Lets face it, your job as an HD caretaker is a difficult one. Its physically tiring, emotionally tiring and mentally tiringand then you have a bad day. There is one thing you need to remember: You need to take care of yourself, first! If you get burned out and depressed youre not going to be much help to person youre taking care of.
In a quiet moment sit down and take inventory of your life. What hobbies do you have? What do you do for the pure enjoyment? What kind of life do you have outside of HD? If youre like many, your answers are going to be very short. Maintaining balance in life is difficult, even without the challenges of HD. You need to make a plan for returning balance to your life and you need to do it now. If you put it off until tomorrow it isnt going to get done is it?
Re-establish your hobbies, do lunch with your friends, take a walk, visit a park, take a drive and turn up the radio! Do whatever it is that recharges your batteries. If you need somebody to watch things at home ask a friend or relative to help, check with your church, utilize adult daycare or ask for ideas from your support group.
Are you a member of an HD support group? If not, joining a support group is one of the best things you can do to take care of yourself. Youll find out that you are not alone. Others are going through the same thing youre going through. Because theyve been there they have tips and tricks that can make your life much easier. The support groups are tied into the resources that are available out there. If there isnt a local HD support group you can find valuable support in Alzheimers & Parkinsons support groups. They have to deal with many of the same issues. Another alternative is to use the Internet. There are HD Chats, email lists and discussion forums where people discuss HD issues. Visit HD websites, theres a wealth of information and support out there.
When you are stressed-out and you feel like youve reached the end of your rope, give yourself permission to take a break and refresh yourself. Put your air mask on FIRST
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