Friday, April 18, 2014

Kirk Hall

In March we spoke at a Parkinson’s conference in Colorado where we met several fascinating people. One of the most interesting was Kirk Hall. Kirk is a man who has refused to let Parkinson's, and now MCI, stop him from enjoying life and continuing to be productive.  He is also the author of two children’s books about Parkinson’s, both of which are listed in our website’s book store, The LBD Book Corner. He just sent us a new book release for his latest book, Window of Opportunity. In this book, Kirk offers all of us an insider’s view of how it feels to get such a life changing diagnosis as MCI and continue to live a fulfilling life. His books, first for children and now for adults, are examples of this. Another is his participation in a webinar sponsored by the LBDA in June. Kirk has asked that we post information about the book and the webinar and we are honored to oblige.

Dementia Webinar

A webinar to be hosted by the Lewy Body Dementia Association (LB DA) is planned for Wednesday, June 4, 2014 at 2 pm Eastern on Webex. The goal of the webinar is to give Lewy body dementia (LBD) patients, Parkinson's patients (PWPs) and their caregivers the opportunity to hear from Alexander Dreier, who has been diagnosed with LBD, and his wife, Olivia, about what is like for them and how they deal with this diagnosis. Kirk and Linda Hall will also participate as representatives of the "PD world" and share how they are dealing with Kirk’s mild cognitive impairment (MCI) diagnosis, as MCI is often a precursor to Lewy body dementia (LBD), the most common form of Parkinson’s dementia. There will be an opportunity to ask questions.

Registration and access information for this webinar will be available on the LBDA website  in May.


Window of Opportunity is the story of one person’s journey through the initial signs of cognitive impairment associated with Parkinson’s disease and the uncertainty of a future that includes a significant probability of dementia. Kirk Hall, only 58 at the time he began noticing small signs of mild cognitive impairment, tells his story with directness, candor, sensitivity and humor. He describes the long and challenging visits to doctors seeking answers to his disturbing symptoms and the confusion caused by conflicting opinions about the nature and progression of his disease. His journal notes allow him to describe in vivid detail his slowly coming to grips with disability and the increasing lifestyle changes required to offset progressive cognitive difficulties. He shares the internal struggle, anxiety and stress that uncertainty causes, not only for himself but for his family as well.

The book is a tribute to someone who is able to maintain a positive orientation despite the threat of something as devastatingly frightening as dementia. It is also a journey of discovery as Kirk transitions into the healing aspects of giving back to the Parkinson’s community through helping others and sharing his story. Indeed the reader will take away important insights into the importance of keeping a patient journal, patient self-advocacy, and shared decision-making. And, perhaps most powerful of all, are the insights into how dealing with the potential for a terminal diagnosis can turn into a “window of opportunity” to contribute in a meaningful way to the body of knowledge about a disease and to help others on a similar path.

To order: Find the paperback and Kindle versions of this book in The LBD Book Corner. You can also order the paperback from Pygmy Books, page 2 and the ebook (all formats) from Smashwords.

Monday, April 14, 2014

Do You Need More Help?

We meet wonderful, dedicated people at caregiver support groups. We always learn something. Maybe it is how to move a person easier, or where the best care for a particular ailment is in our area. But often it is that caregivers are ferociously determined to give their loved ones the best treatment possible. And that they want to do this at home. And that they prefer to do it alone. We hear of their struggles—the falls, and the difficulty getting a loved one into and out of a chair; the difficulty getting him to the doctor or for regular tests. We hear of combativeness and see the bruises. We hear the stories about the caregivers bad backs, and shoulders, and hearts and other illnesses.

Especially, we hear over and over that no caregiver wants to place their loved one in a long term care facility. NONE of those places are good enough. NONE of them will give him the care the caregiver has been giving him. NONE of them will take the time for his various needs. Or if there is one that will do all of this, they haven’t found it yet, or it is too expensive, or…. As for in-home help, caregivers worry about having a stranger in their home. Who can be trusted? Or the loved one doesn't respond well to hired caregivers--strangers who don't know his special needs and quirks.

The bottom line is that placing this person that they feel totally responsible for into someone else’s hands is terrifying. The what ifs make it an awfully difficult task—often an impossible task. What if they give him a medication he shouldn’t have? What if he needs help and they don’t respond quickly? What if they can’t understand what he wants? What if ……? The list goes on and on in their head. “No, I can’t do it,” the caregiver thinks. “I can carry on alone for a while longer.”

But can she? Over and over, the statistics show that all caregivers are highly susceptible to debilitating illnesses, illnesses that will eventually take away their ability to care for their loved one. Even worse, an elderly caregiver is 60% more likely to die than a non-caregiver of the same age. SIXTY PERCENT! Over half. Then, the loved one is likely to go into a long term care facility because there are no other choices. And it will be without the all important caregiver’s support.

We’ve come to believe that the issue is much more than that of finding adequate, caring help, or a Lewy-friendly long term care facility, or even finances. We don’t discount those problems. However, many caregivers can attest that good, trustworthy help and facilities are out there if you look for them. Finances can be a major roadblock, but assistance is there also. There has to be something more, like the emotional attachment to the job, and of course to the loved one.

There is a lot of emotion invested in caregiving. There’s that terror of handing over a loved one to someone else is one I mentioned earlier, as well as many other strong feelings that surround the wish for a loved one’s well-being.

But we believe there’s more—and it often has more to do with the caregiver than the loved one. To ask for help may seem like failing, or like letting a loved one down, or even like letting oneself down. The loved one becomes a caregiver’s most valuable, most protected possession, and the job becomes her identity. How can she give this up, or even share it?

Years ago, I lived and worked in another state and visited my elderly parents a few times a year. My mother was already in a nursing home when my stepfather became ill and had to join her. My widowed sister, who was their primary caregiver, kept this a secret from me. Later, she said she was afraid I'd try to take over her job. I couldn't understand that then. Why would I, who could only visit occasionally, want to take over a job my sister was doing so well? The caregivers in the support groups we've visited have helped me to understand. My sister had been a caregiver for years, first of her husband, then of our mother and finally, of our stepfather. What I saw then as irrational behavior was fueled by fears she probably didn't even recognize--including the fear of losing her identity as a caregiver.

For a spouse, is sharing the intimacies of caregiving like sharing a marriage? Does it feel wrong, somehow to expose her loved one’s vulnerabilities to someone else? True, she believes that no one else can do as good a job as she can. She’s probably right—as long as she can do it. But what would happen if she were wrong? What if someone else could do a better job? Then, what is she? Chopped liver?

These are just ideas thrown out to explore. Do you relate with any of them? Or do you find yourself adamantly resisting any of these suggestions? If you do, think again—that may be the one that fits when you take the time to be really honest with yourself. Future blogs will be about how to know when it is time to get help—and what kinds are available.

Find more about LBD caregiving in The Caregiver's Guide to Lewy Body Dementia available on in the LBD Book Corner.

Friday, April 4, 2014

The Brain Support Network Makes Brain Donations Easier

One way you can help the cause for LBD is to donate your loved one's brain to research. Post-mortem brain tissue analysis provides the only sure diagnosis of most neurological diseases, including LBD, at this time. Knowing exactly what a loved one had may help families know more about their own genetic expectations. Since comparing past symptoms to autopsy results helps to develop better diagnostic protocols, donating families can feel they are helping others—that their loved one has not died in vain. It is also the way we will finally get a cure. For brain research to go forward, researchers need an ongoing supply of brains to study.

Yet, families often find the donation process difficult and confusing. It happens at a time when families are already stressed. They are grieving. The death of a loved one often brings drastic changes for the caregiver. There is usually a deadline after which the brain would not be useful.

The Brain Support Network (BSN) doesn’t remove those stresses but it makes the donation process it self easier. It provides complete, detailed brain donation arrangements tailored to the specific person and diagnosis, and support the entire way. The BSN is unique. No other organization provides this extent of services. That is, BSN staff have the knowledge and expertise to find and set up the right arrangements for each family—and then walk the family through the whole process. Each family and each situation is different.

Since 2007, the BSN has helped over 170 families donate the brains of loved ones. The founder, Robin Riddle, did all they work until recently when the group became a non-profit and hired two part-time staff. Robin says that each brain donation takes about 15-25 hours of staff time and costs the BSN about $500. The group does not charge for their services but they do let families know that a donation will let them help the next family.

Donating a brain isn’t something you do at the last minute. The BSN requests that you contact them before death is imminent, although they will do their best to help even then. Contact them when a family member has received multiple, conflicting diagnoses, has been placed on hospice, or has been recently hospitalized with pneumonia or a major fall. Families who like the idea of helping others with brain donations that support research can contact the BSN at any time as well.

To find out more about this wonderful organization or to make a donation--or both, check out their website or download their brochure.

Friday, March 28, 2014

The Many Faces of LBD, Revisited

Since we published this blog two years ago, all that has changed is some research that verifies what we said in the first place! However, many new readers likely haven't seen it and so here it is with updates.

Some say that if you put Alzheimer’s disease (AD), Parkinson’s disease (PD) and schizophrenia in a bag and shake them up, you’ll get Lewy body dementia (LBD). But that’s not all; add sleeping disorders and autonomic nervous system dysfunctions and you’ll be closer to describing this multifaceted disorder. However, today we’ll only talk about the first three and save the others for later.

LBD is similar to Alzheimer's, in that it is a loss of cognitive abilities. However, AD folks tend to lose memory skills first. They forget words and things. LBD folks lose executive skills first. They become unable to think, do sequential tasks, plan, or make decisions, judgments or choices. Even more important, LBD folks may have severe drug sensitivities to drugs that Alzheimers folks can usually take with comparative safety.

Concern: These two dementias often occur together. Since AD is most common, someone with both disorders will most likely be diagnosed first with Alzheimers. Thus LBD’s severe drug sensitivities may not be discovered until the damage is done.

Update: This is still true. Many family practitioners especially, view all dementias as very similar and see little need to burden their patients with the time, effort and money involved with a referral to a specialist. Insist on seeing a neurologist who specializes in dementia or a geriatric psychiatrist.

LBD is related to Parkinson's. There are two types of LBD. Like PD, both are caused by Lewy bodies in the brain. When dementia starts first, this is called Dementia with Lewy bodies (DLB). They may never have major mobility problems and are the ones most likely to be diagnosed with Alzheimer’s disease. People who develop PD first and then go on to develop dementia symptoms are said to have Parkinson’s disease with dementia (PDD).

Concern: Drugs that improve mobility decrease cognition. When a person has PD, they usually see a movement specialist who may view the dementia as an unavoidable symptom of advanced Parkinsons rather than a possible side effect of the PD drugs. When given a choice, caregivers will almost always chose cognition over mobility for their loved ones, even when it means more work for them. They may not get this choice with a movement specialist.

Update: PD specialists are much more aware of the dementia and drug sensitive issues than they were two years ago. For one thing new research is showing that mild cognitive impairment is actually present at PD diagnosis 25% of the time. Identifying this makes the need family oriented preventative care all the more important. Avoiding Lewy-dangerous drugs, managing stress and living a generally healthy lifestyle can greatly extend the time before dementia.

LBD is sometimes compared to schizophrenia because perceptual dysfunctions like hallucinations and delusions are so common and because they tend to very start early in the disease process. In fact they may be the first dementia symptoms, although they are seldom recognized as such until other more cognitive symptoms such as the loss of executive skills appear. One big difference is that people with schizophrenia often hear voices telling them what to do, while LBD hallucinations almost never include voices at all.

Concern: When acting-out behaviors start before more recognizable dementia symptoms, people may see a psychiatrist first. The behavior management drugs most used by psychiatrists are those most dangerous to LBD folks. Even one dose may cause serious, permanent motor or cognitive problems.

Update: Clinicians have now formally identified a type of LBD that starts with behavioral problems like hallucinations and delusions. Families with someone who begins to show such symptoms in their 50s or later should consider LBD even if no other symptoms are present.

The bottom line is that when any of the above symptoms are present, everyone involved should be aware that LBD could also be present, no matter what a person’s diagnosis. If you are wrong, no harm is done. If you are right, you may avoid the damage that can come with LBD’s drug sensitivities. You may also be able to identify “inappropriate behavior” that is alienating co-workers, family and friends as possible early LBD related acting-out behavior. Naturally, you should share your observations and concerns with your loved one’s physician and if appropriate, ask for a referral to a dementia specialist.

Update: The bottom line hasn’t changed.

Find more about LBD in The Caregiver's Guide to Lewy Body Dementia available on in the LBD Book Corner.

Friday, March 21, 2014

Chairs, Getting Out and Staying In

Getting Out. A person with a Lewy body disorder (PwLB), either Parkinsons or some form of LBD, may lose their ability to lift themselves out of a chair. This loss of mobility or of knowing how to perform the task, is part of the disorder. At first all that is needed is a little assist. Then it gradually gets more difficult and eventually the caregiver must do most of the work. A major problem is that in trying to help, your loved one does just the opposite, leaning  back and stiffening up instead of leaning forward. Here are some suggestions. You can buy the gait belt, shelf paper and chair wedge from Amazon via the LBD Book Corner.

Use a pillowcase. The job of helping a PwLB stand is easier if he scoots forward in the chair first. However, many people have difficulty doing this. Some just don’t have the strength. Others misinterpret the directions do the leaning back and stiffening up thing. Try putting a pillowcase under in the chair before your loved one sits down. Then, standing at the side of his chair, reach across your loved one’s lap, grab the pillowcase and pull forward. This will slide him forward on that side. Then go to the other side and repeat the process. You may have to do this a couple of times to get him far enough forward.

Use a soft gait belt with handles. You should never try to lift anyone from a chair by grabbing under their arms and pulling up. This puts too much strain on your back and damage the liftee’s shoulder and underarm. Instead, use a gait, or transfer, belt. This belt, fastened around your loved one’s middle provides support for them while giving you a place to pull up safely. However, these belts can be uncomfortable and the PwLB may resist wearing one. Soft gait belts are more comfortable. They also have handles that are easier to use than just the belt.

Use automatic gestures. If you ask your loved one to lean forward and he does the opposite, its his mind sending out the wrong directions to his muscles. Change tactics. Instead of telling him, “OK, lean forward and I’ll help you out of the chair,” stand up straight, reach out one hand as though you are going to shake hands with him, and say, “Come on, let’s go.” He’ll automatically lean forward and reach for your hand. Grab it, and use the movement he’s started to help him stand. The reason this works is because it is automatic. He doesn’t have to think about it. We have been trained since we were small to reach out and take a person’s hand when they offer it. When thinking gets muddy, automatic actions often work much better.

Use the right furniture. Make sure chairs are high enough to get out of easily and have firm armrests. Situate the chair in a place where you can stand at either side and don’t have to lift from the front.

Take care of your back. Second only to caregiver stress, back injuries are a major risk of caregiving. When lifting, always stand with your knees bent and your feet shoulder-width apart. Use the muscles in your legs to lift, not the ones in your back. Stand to one side and use your body as a fulcrum so that and let your loved one do as much of the lifting as he can. Work with a physical therapist to learn the best way to lift your loved one. There are basics techniques but each person is different.

Go slow. This is always important but it is especially important if the people trying to lift your loved one aren’t well known to him. Going at normal speed, let alone fast, may feel like an attack. In such a case, it is natural to stiffen up and try to cling to the chair. Ask the staff to take their time and tell your loved one what they plan to do. Visiting and joking with him a bit helps as well. Family caregivers may have to educate the staff about the best way to do this for their loved one. You may feel that you are paying for them to know this—and you are. However, it is better to teach them and then know that your loved one is getting the care he needs in the gentlest possible way than to refuse to help and see him frightened and resistant.

Staying In. Sometimes the problem is that your loved one slips out of the chair. Tying them in isn’t necessarily safe, for the restraints can actually strangle a person if they slip too far. Here are a couple of suggestions from other caregivers. The down side to both of these suggestions is that you won’t be able to use either of these methods for staying in place AND the pillowslip for lifting. It’s one or the other!

Us e shelf liner: Find some rubberize shelf liner, cut a square and place it in the seat of the chair. This liner is used to keep things from sliding in motorhomes and it will keep your loved one from sliding too.

Use a foam wedge: Buy a firm foam wedge about 2-3” on the high side. Place in the chair with the high side at the front. This extra height may keep your loved one from slipping down.

Find more about LBD in The Caregiver's Guide to Lewy Body Dementia available on in the LBD Book Corner.

Tuesday, March 18, 2014

A Caregiver's Guide to Lewy Body Dementia on Sale


If you hurry, you can buy A Caregiver’s Guide to Lewy Body Dementia for $14.96 from Demos Publishing, with free shipping. That's at least $5 less than Amazon's present price of $16.95 plus shipping.

Demos St. Patrick’s Day sale only lasts through March 23. Use the promo code “GREEN14” when you order. You can order by phone or email:
     Phone: 1-800-532-8663

Happy belated St. Patrick's Day!

Friday, March 14, 2014

Speaking about Taking Charge, Moving On and Enjoying Life

We had the honor of being invited to speak at Global Community Conference on Parkinson’s Disease: Beyond the Limits conference in Keystone, CO earlier this month. They had the usual keynote addresses and breakout sessions. The sessions fell under several headings. For example, Beyond Today was about research. Since the conference was being held in conjunction with a Keystone Dual Conference for Parkinson’s and Alzheimer’s, we had the benefit presentations from some of the world’s most renown researchers. In later blogs, we will discuss some of the research we learned about for it applies to LBD as well as PD.

Beyond the Pill was about non-medical treatment and Beyond the Worry was all about caregiving. In past blogs, we have already discussed non-medical treatment and I’m sure we’ll do more of that for it is the direction we see ourselves going in the next year. Sadly, the sessions about non-medical treatment we’d most like to have seen were at the same time as ours and so we didn’t learn a lot about that, at least not there.

We were in the series called Beyond the Tremors, i.e., non-motor symptoms. Besides ours, there were several other session on cognition, some taught by the above scientists. Addressing cognition so directly is a change for PD groups. They have traditionally avoided this subject or else, treated dementia as a symptom that PwPD occasionally developed towards the end of their lives.

However, we found that the old resistance of the PD community to see itself as a part of the Lewy body continuum was still there…a little less strong but still alive and well. Many had never heard of Lewy bodies, and if they had, were not aware that they caused PD as well as LBD. Of those who did know about Lewy bodies, fear was often present. One man who came to hear us put it this way, “I was afraid to attend your session. I was afraid you’d paint a dramatic picture of doom and gloom.” Another woman said, “When the doctor told me I had LBD, I felt I’d been given a life sentence.” We didn’t talk about doom and gloom or life sentences. We talked about hope and about taking charge, about a person’s power to slow down the disorder’s progress and increase one’s quality of life. The man who'd been afraid to come told us later, "I'm glad I came. It wasn't what I feared. Instead it was positive and helpful."

Yes, PD is a progressive disease that can and often does limit one’s thinking ability as well as one’s mobility. It is so easy to feel that the disorder has taken over and that neither the PwPD nor the caregiver is any longer in charge—to feel as though they are locked in a driverless train to death or worse, insanity. It’s scary, to say the least. We were there at that conference to tell families that they don’t have to feel so hopeless and helpless; that there are many things, from living a healthy, low-stress lifestyle to avoiding Lewy dangerous drugs, they can do. We talked about knowledge being power. The power, for instance to know which drugs are Lewy-safe and which may not be. You can’t stop that train, but you can slow it down so that you can enjoy the scenery and even the journey.

Our goal is to teach PD and LBD families not to let the disorder to take over but to “live until you die.” To take charge, move on and enjoy the life you have.

Find more about LBD in The Caregiver's Guide to Lewy Body Dementia available on in the LBD Book Corner.
Parkinson’s disease