The Whitworths of Arizona, bringing science to you in everyday language.

Friday, January 25, 2019

New to LBD, Pt. 3. After the Diagnosis

Ok, we have a diagnosis and it sure sounds like what Ben has been experiencing, but what do we do now? I'm just so full of questions. The doctor says it's incurable. Is that really true? If so, can we slow this down? The doctor says the medicine she prescribed will probably stop some of Ben's odd behaviors. We've always been advocates of alternative options to heath care though. Are there any alternative options we can try? Will they interfere with his drugs? -- Emily

Emily is showing the normal confusion a person tends to feel with news like hers. All of a sudden, she is seeing her life change and seeing that what used to be a partnership is going to gradually morph into a lot more responsibility for her. Like many in her position, she is less angry or resentful than she is worried that she won't do it right. And that's a setup for guilt.

Accept that you are human. Emily's first step is to accept that she won't get everything right...but she will do the best she can and accept that she isn't perfect. Ah yes, easy to say, but not so easy to do! And that's the next step.

Find a support group! The people in a good support group can answer most of her questions. Their stories of their own experiences and dilemmas how they dealt with them can give her a feeling of belonging--they've been where she is now. And their understanding will give her a feeling of security that she may not find if she tries to do this job alone. (See New to Lewy, Pt 1 for a little more about groups.)

Use your resources. If you were referred to a nurse practitioner or social worker, be sure to take advantage of this. These professionals are there to help you find your way through all the non-medical issues that come up, from ideas on how to deal with those odd behaviors to what it means to be a person's advocate to the need for self-care and much, much more. They can also help you deal with any denial you may be feeling. Denial is a common part of the process towards accepting and then dealing with a life changing diagnosis. If you weren't referred, ask for a referral! Oh, yes, if you haven't found a support group yet, they can help you with that too!

Do your homework. As an advocate, you need to educate yourself about the disease.

When my first wife, Annie, started having LBD symptoms, I was an electrical engineer and all that medical stuff was just so much mumbo jumbo. But I was concerned and I stuck with it. I found articles that used plain, understandable words that described Annie's symptoms. I took this information to the doctor and asked for more clarification. -- Jim Whitworth

You can do what Jim did. Our books, shown below, are are a great start. They all written with the stressed, often non-medical care partner in mind, as is our website. The National Institute on Aging also offers a free 40 page book called Lewy Body Dementia: Information for Patients, Families, and Professionals. Of course, the LBDA website is also a great help. Another good resource is Timothy Hudson's Learning to Live with Lewy Body Dementia. In fact, check out Timothy's list of other resources.

Learn about alternative drug options. Emily asked about alternative therapies. This is a valid question. The doctor will likely suggest some medical treatment. However, a knowledgeable doctor will also recommend trying to manage behavioral symptoms with non-drug alternatives before using drugs. That's because the most  behavior management drugs are likely to trigger LBD's drug sensitivities. Even when you do use drugs, adding non-drug options usually means you need smaller doses to get the same results. You can find out about non-drug options on our website, or in our books, listed below.

Next week is about dealing with the denial that often follows a life changing diagnosis.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Friday, January 18, 2019

New to Lewy, Pt. 2. The Diagnosis

Last week was about the behaviors that Ben displayed that instigated his visit to a doctor and the doctor's subsequent diagnosis of LBD. However, his wife, Emily, is having difficulty accepting the diagnosis.

When Ben's doctor diagnosed him with LBD, he was relieved and willing to accept what the doctor said. "I know I've been acting different and now I know why," he told Emily. But Emily was still worried. "I can't believe that Ben has dementia," she said. "Even after the doctor explained the differences, I still can't get my mind around the idea that he has an incurable disease that is going to disrupt our lives. I had hoped for some medication that would cure Ben of his delusions. I can deal with what the doctor called Active Dreams and even the "little people" he sees, but those delusions were making my sweet, loving husband ornery! (See last week's blog for a longer description of Ben's symptoms). Dr. Kennedy didn't do any tests. She just diagnosed him mainly based on my reports. Maybe she's wrong. How would I know? -- Emily

Emily's question can be broken up into several parts:

How can you judge accuracy of your doctor's diagnosis?

Do your homework. If you recognized symptoms that led you to believe your loved one might have LBD before you saw a doctor, read the following articles. They will give you a head start on the questions to ask. (Or read them when you get home from a doctor's visit where an unexpected LBD diagnosis was suggested. They will still give you a lot of insight about what to do next.):

Finding a Doctor to Diagnose and Treat LBD. The LBDA is always a great source of caregiver information.
Get an Accurate Lewy Body Dementia Diagnosis.  Tim Hudson always has good, well thought-out information.
What Doctors Should Ask Patients to Recognize Lewy Body Dementia  This will help you know how LBD-savvy the doctor is.

Ask questions. Besides knowing what the doctor should ask, there are questions that you should ask too. Don't be afraid to ask about the doctor's expertise with LBD. Has he/she had any training about it specifically--not just dementia, but LBD? How many people with LBD have they diagnosed in the past? How many are they treating now? Next, notice the questions the doctor asks. Are they similar to the ones in the above article?

Expect a referral for support. A doctor well versed in the issues around LBD knows that their patients and family need much more than medical treatment. Expect a referral to a nurse practitioner or social worker who specializes in this support. If it isn't offered ask and if it isn't available, consider it as one sign that perhaps this doctor isn't the one you want to see for this issue.

Don't do this alone. There are a multitude of reasons for finding and utilizing a support group. One of the first is to help you find and recognize a LBD-savvy doctor, and then to know how to deal with this life-changing diagnosis. Find a list of local groups on the LBDA Support Group page. The LBDA also has a list of online groups and so check them out too. Start with these but there are many more. Jim's favorite is Caring Spouses,  It is limited to spouses but there are many others. Actually support groups are so important that they deserve a whole series of blogs and eventually there will be. In the meantime, the LBDA lists and this article in Lisa Cook's Lewy Warriors blog can get you started.

Consider a second opinion. Even if you are fairly comfortable with your doctor's diagnosis, a second opinion is often a good idea. In Ben and Emily's case, she needs it to help her deal with the denial she is feeling...the resistance to the idea that their lives will be changing due to Ben's diagnosis. Also, if your first diagnosis was by a family physician, getting a second opinion from a specialist is a good idea. A good family physician can identify a multitude of warning signs and knows when to refer.

To find the right person for your referral, you will need to know what your insurance allows.  (My doctor's office staff does this research for me. Your's may too!) And then of those choices, who does your family doctor recommend and why. If you have a choice, check with others in your support group. Who do the they recommend? Once you choose someone, ask them the same questions you ask the original doctor and follow the recommendations in the above articles as well.

 If you are still uncomfortable with a diagnosis...if for instance, it doesn't seem to fit the symptoms that your loved one has, don't be shy about asking for a third opinion! The statistics show that people usually see at least three doctors before they are diagnosed with LBD. This makes Emily and Ben's experience unusual. He was diagnosed with LBD right away. This may not be the case for you. Conversely, your loved one may be diagnosed with LBD but not really have it. As it becomes more well known, its many and varied symptoms can make it a kind of catch-all diagnosis. As your loved one's advocate, part of your job is to evaluate each diagnosis against what you already know about your loved one and seeing if it fits. If you don't think it does, ask for yet another diagnosis!

One last warning. When asking for another diagnosis, where are you emotionally? Is it possible that the problem is with you and not the diagnosis? Are you are in denial, as Emily was, and having difficulty accepting a diagnosis that does actually fit? Take a deep breath and check this out before going further!

Next week's blog is about what happens after the diagnosis.

For more information about Lewy body disorders, read our books: A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's & Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding a Roller Coaster with Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Friday, January 11, 2019

New to Lewy, Pt 1. Early Symptoms

Jim monitors several online LBD caregiver support groups. The following is the sort of post he often sees from newcomers:

I just learned that Ben has Lewy body dementia. He'd been doing some odd things for a while...thrashing around in bed, seeing little people that I couldn't see. We could live with that, but when he started arguing with our neighbors over imagined slights, I decided it was time to see a doctor. Ben has always been a guy with an even temper and a smile for everyone. This just wasn't like him. I finally got him to go see Dr. Kennedy. I'm sure glad I went with him! He was so normal, the doctor couldn't see much wrong with him. But when I started telling her what had been happening, Dr. Kennedy started nodding her head. She says that what's going on with Ben sounds a lot like this thing called Lewy body dementia, or LBD, as she calls it. That's what is making him act so odd.

Dementia? I thought dementia was forgetting things. Ben doesn't forget, he obsesses! But Dr. Kennedy told us that there's a lot more kinds of dementia than just the kind where people start out by forgetting. We left her office so confused! Ben seems relieved to have a name for his odd behavior but I'm still not sure. Dr. Kennedy just diagnosed it from what I reported about his odd behaviors. She didn't order any tests. When I asked about that she said there were some tests but they were awfully expensive and they wouldn't tell us much more than she could, just from his symptoms. She said that what Ben had wasn't curable, that it would get slowly worse. That's awful! Maybe he has something curable? How do we find out? - Emily

Emily's post generates a multitude of questions:

What are the symptoms that Ben's doctor used to diagnose his LBD? How did she decide it was LBD and not another type of dementia, or something that wasn't dementia at all?

Thrashing around in bed: When a person dreams, the brain normally switches off the ability to move. LBD interferes with this and the result is Active Dreams where a person physically acts out their dreams.

Seeing little people that Emily couldn't see: Seeing hallucinations early on is a definitive sign of LBD, vs. Alzheimer's where these show up much later in the progress of the disease.

Imagined slights: LBD affects the ability to think before it affects one's memory--another way it is different from Alzheimer's. This leads to delusions, based on emotions rather than fact. Since negative emotions are initially stronger than positive ones, delusions are often negative: imagined slights, rather than imagined complements--and a change from Ben's normal positivity.

Arguing with neighbors: Most dementias cause a loss of impulse control. Normally, a person might choose to laugh at or ignore a slight, especially if arguing might make further interaction difficult. However, without impulse control, Ben acts on what he feels without considering the consequences.

Fluctuating cognition: When Ben saw the doctor, he seems coherent and normal. She didn't see much in her office that signaled dementia. However, Emily's reports of his actions told a different story. This is another definitive sign of LBD, vs. Alzheimer's. While both tend to cause a person's cognitive abilities to wane over time, with LBD, there can be occasional upturns. When this happens in the presence of someone other than the care partner, and especially someone important to them, such as a doctor or a visiting family member, it is called "Showtime."

We aren't suggesting that you use this information to make your own diagnosis! A lot more goes into that besides recognizing a few symptoms, including knowing how to treat the illness. Instead, use it to recognize the need to see a doctor. If your loved one has been diagnosed with Alzheimer's and is displaying these symptoms, consider asking if they might also have LBD.

Drug sensitivity is a common LBD symptom that Emily didn't mention. This is also more common with LBD than with other dementias and so an accurate LBD diagnosis is important simply because of this. Some drugs that are used fairly often with other dementias can often trigger this sensitivity, causing more problems than they solve.

While you do need to get that diagnosis and listen carefully to what the doctor says, you should never follow a doctor's advice blindly. Ask questions while in the doctor's office and do some reading about it when you get home. You are your loved one's advocate. That means that you need   to understand why the treatment is recommended and what it is supposed to do...and of course, the possible side effects that you should look for.

You also have to be able to trust the doctor, which means you need to do your homework there too. Not all doctors are well versed in working with LBD. This could easily include your family practitioner. However, they likely know someone in your community to whom they can refer you, for a second, more educated, opinion.

Next week's blog will be about learning how to judge the accuracy of your doctor's diagnosis and getting a second opinion.

For more information about Lewy body disorders, read our books: A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Friday, January 4, 2019

More Relaxing Essential Oils

Well, the holidays are over for another year. But the stresses often remain, especially for a person with limited ability to deal with all of the excitement--and for the care partner who must deal with the behaviors that are often their loved one's main way of expressing their discomfort. Our new book, Responsive Dementia Care talks about a variety of ways of relieving this stress. One of them is by using essential oils.

This blog is the third in a series about using these oils. My favorite way is via a diffuser but adding a few drops to your massage mixture can be very helpful and enjoyable for both the person receiving the massage and the person giving it. This week's blog is a quick rundown of some of the most relaxing or otherwise helpful oils:

Citrus oils, like lemon and orange, tend to be uplifting. Bergamot is another citrus oil with an especially sweet, floral scent that can also be very soothing. Lemon is also a great disinfectant. Use it for cleaning surfaces and the air. I start my morning with a half a cup of water and three drops of lemon oil and use sweet orange in my diffuser just to add a nice scent to the air where I work.

Peppermint is known for its invigorating qualities. It mixes well with other oils, especially lemon. Peppermint's menthol content makes it a good oil to use during cold and flu season to sooth sore throats and open plugged airways.

Cinnamon leave essential oil is spicy, hot and sharp. Use it to make your home feel warm and cozy. It relaxes and encourages positive feelings--mix it with Ylang Ylang, which as similar qualities.

Pine, can bring scent reminders of the holidays, like Christmas trees, and is even more uplifting and energizing than cinnamon.

Geranium and rose oils have similar qualities. Besides being pleasant floral scents, they both relieve stress and tension. Try spraying one of these, or a mixture of both on your pillow at night. It's like sleeping on rose petals!

Thanks to The Organic Goat Lady for the above suggestions.

If you are into mixing oils, you might try one of these blends suggested by the Chopra Center. Store the blends in in tightly sealed, colored glass bottles to protect against ultraviolet light. Use 5 to 8 drops in a candle warmer, 10 to 15 drops in an ultrasonic diffuser, or the full batch in a nebulizer.

Spicy Citrus Blend. Try this to encourage calmness:
  • 20 drops sweet orange
  • 4 drops cinnamon bark
  • 4 drops nutmeg
  • 4 drops clove

Evergreen Blend. Use this to purify the air and improve breathing, or to freshen the air in the stuffy, overheated rooms that we so often have in winter.
  • 20 drops cedarwood
  • 10 drops juniper berry
  • 10 drops cypress
  • 10 drops Siberian or balsam fir

Bath Blend, Salt Scrub for Shower. Use this in the bathtub for a rejuvenating soak after a rough day and feel your stress fade. Your loved one likely doesn't take baths but you can make up the salt scrub version and use it for your loved one's shower. Frankincense is very good for the skin and is used for boosting the immune system. Our old favorite, lavender adds its own relaxation magic.
  • 8 drops lavender
  • 5 drops frankincense
  • 3 drops vetiver
  • ½ to 1 cup sea salt or epsom salts
  • 1 tablespoon almond, jojoba, coconut any carrier oil you prefer
Mix the essential oils into the carrier oil first, stir all into the salt, then add to the bath water, and relax. Add more almond oil to make the salt scrub. Warning: Use a no-slip bath mat and use extra care getting in and out of the tub. The oils will make the tub or shower floor slippery.

Sinus-Clearing Steam Blend.  These oils can be very helpful during cold and flu season. Many of the cold and allergy drugs are anticholinergics...discouraged for people living with dementia--or anyone at risk for dementia, which means almost anyone! Try pouring 1-3 drops of this blend into a mug of boiling water instead:
  • 12 drops eucalyptus globules
  • 5 drops cedarwood
  • 5 drops tea tree
  • 3 drops oregano or thyme
  • 3 drops frankincense
For the best results, tent yourself under a towel, hold the mug under your nose and take long deep breaths of the blend for as long as you feel comfortable doing so. If your loved one can't do this, diffuse it as close to them as you can. The steam is a big part of the treatment, but the oils work even without the steam.

Choosing a brand. If you wonder where to get your oils, check out Adrienne's blog, The Whole New Mom. In a seven-part series, she reports the research we'd all like to do but few have the needed time, energy or even the know-how to do it well. If you already have a favorite supplier, you may not agree with her results but she will definitely give you some ideas about what you want to look for in the oils you buy. Essential Oil Haven offers a shorter review, with some good comparisons. By the way, their final recommendations were similar to Adrienne's.

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding a Roller Coaster with Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.