This time of the year many of us like to travel. Most retired folks don’t travel as much as we do, but many travel even more—and go a lot further. Even mild dementia can make traveling stressful. Almost by definition, it involves change and change is the Lewy partner’s, i.e., the person with Lewy’s bug-a-boo. We tend to go the same places each summer and that’s great for anyone with dementia too. We all know that familiarity decreases stress. However, sometimes you both really want to go somewhere different. Maybe it is someplace you’ve always wanted to go and just haven’t made it yet. Maybe it is to a special event like a grandchild’s graduation. Travel is possible. Here are a few of the ways to make it easier listed in our new book, Managing the Cognitive Issues in Parkinson’s and Other Lewy Body Disorders:
Go together. Lewy partners should never travel alone, even if they feel very able to do so. LBD fluctuates greatly. Low levels can appear just when clarity is needed most—when the stress is at its worst. Someone must go along to assist during the rough spots. Assure the Lewy partner that this is being smart, not helpless.
Plan, plan, plan. The more you plan, the fewer surprises, the less stress. Plan ways to avoid extremes and add familiarity and comfort. If going by car, plan short trips to avoid tiredness (probably no more than two or at most three hundred miles a day). Pack extra clothes for warmth. Take known routes whenever possible. Consider emergencies that might come up and how to deal with them. Talk to the doctor about extra medications.
Do the nitty-gritty stuff. Even when a Lewy partner is functioning well, the truth is that you will probably have to do most of the planning and initiating. A Lewy partner’s challenge is no longer making things happen but simply to keep doing.
Plan as a team. Yes, you will take on the responsibility for making sure everything runs smoothly but don’t let Lewy partner opt out. Include him in on the decisions. Even if he forgets the details, his sense of involvement will remain. The trip will be less stressful—and more fun.
If you fly, buy travel insurance and be prepared to use it. If the Lewy partner starts out feeling paranoid or frightened when getting on the plane, it isn’t going to get better. Get off. DO NOT travel unless both of you feel well. It will almost assuredly make the disorder worse—and with the added stress, it may not bounce back. Stay home and “de-stress.” Then try again.
Exercise. Traveling can be very confining and no one may get much exercise. Make a point of stopping often to walk around when traveling by auto. If going by air, spend time in the airport walking in the less populated areas or even outside. This will help to refresh you and avoid stress.
For more about traveling and other activities with your Lewy partner, read our book. You can get it from our website, www.lbdtools.com.
Friday, June 27, 2014
Friday, June 20, 2014
Caregiving Choices
In the caregiver support groups that we attend, how to care for a loved one is always a topic. Pat Snyder, author of Treasures in the Darkness, has opted for home care, with adult day care and full time assistance when her husband, John, is home. The daycare gives him some social exposure and Pat some alone time. The additional caregivers make it safe for Pat to keep John in a home, which incidentally they renovated to be very, very accessible.
About the full-time caregivers, she says, “Yes, they sit a lot. But my health is in jeopardy if I try to lift him or if I am up all night when Lewy appears. And with Lewy's isolation issue, it is actually nice to have company more here at the house. They are good people. So my bit of wisdom is this: The money that was to be there for me later is being used now to keep me in good enough health to have a chance for a life after Lewy. Also John is calmer, less stressed with fewer symptoms with one-on-one care, and I am able to rest and not be constantly traumatized by Lewy's demands.” You can read more about Pat and John’s journey here.
Sue, wanted to take care of her father at home but eventually opted for residential. “We made the decision together. During a Good Time, a time of more alertness, I told him they could offer him things I couldn’t—and it was true. Mainly, I was afraid for his safety and what would happen if he fell—again. I’m glad we made the move when we did—when it was “we” and not just me, making the decision. I think it really made a difference in his acceptance of his new home. He actually seems to like it there! He doesn’t always know their names but there is something about certain ones that he seems to relate to. Maybe it is the feelings they generate. Feelings don’t disappear like memory does and the staff there really are very caring people.
Andrea is doing home care but she is exploring her options. My husband is very mobile, she says, but he’s not very steady and he can’t remember anything. I have to tell him how to sit and stand and eat and, well, everything. And he has to be watched every minute cause he does stuff like pouring milk in the sugar or worse. And his clock is all wrong. He is up much of the night and wants to sleep for hours during the day. I’m getting really tired. Maybe I should consider residential.” The group suggests that if she isn’t ready to go the whole residential route yet, maybe daycare is the answer. The added stimulation of being around more people and activities might even help him regulate his clock so that he’d sleep better.
Joy says that’s what she is doing. She is still trying to care for her husband, Bill, at home alone but she now takes him to day care a few times a week. “It does help. I feel more rested now. She has also arranged for him to get his showers there. “It was getting awfully hard for me to do and so just the shower has been a wonderful help for me—and he doesn’t fight them the way he does me,” she adds. Joy is leaning towards residential care too—maybe in the next few months. She sees the visits to day care as paving the way for this move. Bill will already know the place and some of the people.
Every caregiver has to deal with these decisions. And every situation is different. What was yours like?
Read more caregiver stories in our books, the Award Winning A Caregiver’s Guide to Lewy Body Dementia and our just released Managing Cognitive Issues in Parkinson’s and Other Lewy Body Disorders. These books and Pat Snyder’s Treasures in the Darkness are all available on www.lbdtools.com.
About the full-time caregivers, she says, “Yes, they sit a lot. But my health is in jeopardy if I try to lift him or if I am up all night when Lewy appears. And with Lewy's isolation issue, it is actually nice to have company more here at the house. They are good people. So my bit of wisdom is this: The money that was to be there for me later is being used now to keep me in good enough health to have a chance for a life after Lewy. Also John is calmer, less stressed with fewer symptoms with one-on-one care, and I am able to rest and not be constantly traumatized by Lewy's demands.” You can read more about Pat and John’s journey here.
Sue, wanted to take care of her father at home but eventually opted for residential. “We made the decision together. During a Good Time, a time of more alertness, I told him they could offer him things I couldn’t—and it was true. Mainly, I was afraid for his safety and what would happen if he fell—again. I’m glad we made the move when we did—when it was “we” and not just me, making the decision. I think it really made a difference in his acceptance of his new home. He actually seems to like it there! He doesn’t always know their names but there is something about certain ones that he seems to relate to. Maybe it is the feelings they generate. Feelings don’t disappear like memory does and the staff there really are very caring people.
Andrea is doing home care but she is exploring her options. My husband is very mobile, she says, but he’s not very steady and he can’t remember anything. I have to tell him how to sit and stand and eat and, well, everything. And he has to be watched every minute cause he does stuff like pouring milk in the sugar or worse. And his clock is all wrong. He is up much of the night and wants to sleep for hours during the day. I’m getting really tired. Maybe I should consider residential.” The group suggests that if she isn’t ready to go the whole residential route yet, maybe daycare is the answer. The added stimulation of being around more people and activities might even help him regulate his clock so that he’d sleep better.
Joy says that’s what she is doing. She is still trying to care for her husband, Bill, at home alone but she now takes him to day care a few times a week. “It does help. I feel more rested now. She has also arranged for him to get his showers there. “It was getting awfully hard for me to do and so just the shower has been a wonderful help for me—and he doesn’t fight them the way he does me,” she adds. Joy is leaning towards residential care too—maybe in the next few months. She sees the visits to day care as paving the way for this move. Bill will already know the place and some of the people.
Every caregiver has to deal with these decisions. And every situation is different. What was yours like?
Read more caregiver stories in our books, the Award Winning A Caregiver’s Guide to Lewy Body Dementia and our just released Managing Cognitive Issues in Parkinson’s and Other Lewy Body Disorders. These books and Pat Snyder’s Treasures in the Darkness are all available on www.lbdtools.com.
Friday, June 13, 2014
Risk Factors and Choices
When people ask us what Managing Cognitive Issues in Parkinson’s and Other Lewy Body Disorders is about. For one thing, it is about risks factors and being able to make informed choices. In our travels, we have met so many people dealing with Lewy body disorders and their stories really touch us. The over-riding theme tends to be, “so few people understand.” Another is “there were symptoms that we didn’t recognize as symptoms until much later. If we’d known sooner, maybe we would have done things differently.” Jim story is one that we tell in the book. Chronic constipation is a common symptom and one of those that even now may not be connected with an early Lewy body disorder:
Annie, my first wife, had chronic constipation for years. She’d learned to deal with it but when a physician told her that the problem could be fixed with surgery, she was thrilled. A few months after her surgery, she was diagnosed with mild dementia. — Jim Whitworth
Annie did not have PD, but she did have a history of Active Dreams. That, combined with her long term chronic constipation, put her at serious risk for eventual LBD, along with its sensitivities to drugs, including those used in surgery.
Later in the book, during a discussion about alternatives to surgery, Jim talks some more about what happened next.
The surgical “fix” the doctor suggested sounded like a no-brainer to us and so of course, she had the surgery. But then, not long afterward, I started receiving “burnt offerings” for dinner. I was shocked. Annie had always been a good cook but now she seemed to burn everything. That was my first warning that things weren’t right. A couple of months later, she was diagnosed with dementia. — Jim Whitworth
Annie’s poor cooking was evidence of a loss of executive functioning, or the ability to do once familiar tasks, an early sign of LBD. Today, Lewy-savvy doctors would check for risk factors like Active Dreams, and with Annie’s history, recommend against the surgery. The drugs used during surgery probably didn’t cause her dementia, but it may have lowered her reserves, allowing the symptoms to emerge sooner they otherwise would have.
If Annie had known what I know now about her risk for LBD, she would not have opted for her elective surgery. She had lived with this problem most of her life and she could have continued to do so. — Jim Whitworth
The Active Dreams that Annie had are another symptom that is often ignored. In the Caregiver’s Guide, he explained:
Annie’s active dreams began years before she had any signs of dementia and we never connected the two. Why would we? She was still thinking clearly and wasn’t forgetting anything when they started – Jim
In Managing Cognitive Issues another caregivers tells of her experiences:
Luke had very mild Parkinson’s. He tripped and fell, breaking his leg. The doctor told us Luke would need surgery if he ever hoped to walk again but that with his PD, there was a possibility of dementia. So far Luke hadn’t been particularly sensitive to any drugs and so we agreed to the surgery, mostly because he was in such pain. He started hallucinating in the recovery room …Then the delusions started and he became very frightened. … I hoped that once he was home, and away from the hospital atmosphere, he’d improve. He did, some. But he still has times when he is very confused and he still has hallucinations now and then. We knew there was a chance of this, but we had to do it. We’d make the same decision again. — Cindy
Chronic constipation, active dreams and PD just three of the many symptoms that can warn of eventual LBD. We all need to be better able to recognize them when they appear. While there is as yet no cure, our latest book lists many ways that you can slow down its progress—and the earlier you start the better. The only way mentioned in this blog is the need to avoid Lewy-dangerous drugs, including the ones used in surgery. However, Managing Cognitive Issues mentions many more, including a multitude of techniques for managing stress. Decreasing stress will do more to limit LBD symptoms than drugs and it doesn’t have those serious side effects.
Recognizing early warning signs can also help you to make informed choices. Jim and Annie would have made a different choice if they had known more. Others, like Cindy and Luke, might still make the same choice, but with a better understanding of the risks. The true goal of Managing Cognitive Issues is to help people live a happier, fuller, more rewarding life—in spite of the disorder they may be facing.
Future blogs will discuss more about choices and how being able to make them keeps a person feeling more in control.
Both of our books are available on www.lbdtools.com
Annie, my first wife, had chronic constipation for years. She’d learned to deal with it but when a physician told her that the problem could be fixed with surgery, she was thrilled. A few months after her surgery, she was diagnosed with mild dementia. — Jim Whitworth
Annie did not have PD, but she did have a history of Active Dreams. That, combined with her long term chronic constipation, put her at serious risk for eventual LBD, along with its sensitivities to drugs, including those used in surgery.
Later in the book, during a discussion about alternatives to surgery, Jim talks some more about what happened next.
The surgical “fix” the doctor suggested sounded like a no-brainer to us and so of course, she had the surgery. But then, not long afterward, I started receiving “burnt offerings” for dinner. I was shocked. Annie had always been a good cook but now she seemed to burn everything. That was my first warning that things weren’t right. A couple of months later, she was diagnosed with dementia. — Jim Whitworth
Annie’s poor cooking was evidence of a loss of executive functioning, or the ability to do once familiar tasks, an early sign of LBD. Today, Lewy-savvy doctors would check for risk factors like Active Dreams, and with Annie’s history, recommend against the surgery. The drugs used during surgery probably didn’t cause her dementia, but it may have lowered her reserves, allowing the symptoms to emerge sooner they otherwise would have.
If Annie had known what I know now about her risk for LBD, she would not have opted for her elective surgery. She had lived with this problem most of her life and she could have continued to do so. — Jim Whitworth
The Active Dreams that Annie had are another symptom that is often ignored. In the Caregiver’s Guide, he explained:
Annie’s active dreams began years before she had any signs of dementia and we never connected the two. Why would we? She was still thinking clearly and wasn’t forgetting anything when they started – Jim
In Managing Cognitive Issues another caregivers tells of her experiences:
Luke had very mild Parkinson’s. He tripped and fell, breaking his leg. The doctor told us Luke would need surgery if he ever hoped to walk again but that with his PD, there was a possibility of dementia. So far Luke hadn’t been particularly sensitive to any drugs and so we agreed to the surgery, mostly because he was in such pain. He started hallucinating in the recovery room …Then the delusions started and he became very frightened. … I hoped that once he was home, and away from the hospital atmosphere, he’d improve. He did, some. But he still has times when he is very confused and he still has hallucinations now and then. We knew there was a chance of this, but we had to do it. We’d make the same decision again. — Cindy
Chronic constipation, active dreams and PD just three of the many symptoms that can warn of eventual LBD. We all need to be better able to recognize them when they appear. While there is as yet no cure, our latest book lists many ways that you can slow down its progress—and the earlier you start the better. The only way mentioned in this blog is the need to avoid Lewy-dangerous drugs, including the ones used in surgery. However, Managing Cognitive Issues mentions many more, including a multitude of techniques for managing stress. Decreasing stress will do more to limit LBD symptoms than drugs and it doesn’t have those serious side effects.
Recognizing early warning signs can also help you to make informed choices. Jim and Annie would have made a different choice if they had known more. Others, like Cindy and Luke, might still make the same choice, but with a better understanding of the risks. The true goal of Managing Cognitive Issues is to help people live a happier, fuller, more rewarding life—in spite of the disorder they may be facing.
Future blogs will discuss more about choices and how being able to make them keeps a person feeling more in control.
Both of our books are available on www.lbdtools.com
Saturday, June 7, 2014
Managing Cognitive Issues in Parkinson's and Other Lewy Body Disorders
We are excited to announce the publication of our new book, Managing Cognitive Issues in Parkinson’s and Other Lewy Body Disorders. Third in a series about Lewy body disorders, and is written in our usual easy to read style, packed with facts, personal experiences and 13 pages of resources, it is directed especially towards people dealing with Parkinson’s and other early Lewy body disorders.
Many PD families are understandably frightened of the idea that PD and LBD share a history and that Parkinson’s dementia is a form of LBD. Managing Cognitive Issues answers that fear with the power of knowledge and the strength of hope. It describes the symptoms that warn of impending LBD tells how to use therapeutic alternatives to drugs to extend awareness and maintain a better quality of life. With degenerative disorders, like PD and LBD, it is easy to feel as though the disease has taken over and life is spiraling out of control. Managing Cognitive Issues offers tools for regaining control, such as living a healthy lifestyle, having a positive outlook, using better communication and practicing stress management.
Even though Parkinson’s is one of the major predictors of eventual dementia, its cognitive issues have been overlooked by the medical community until recently. This is changing as neurologists and researchers recognize that these issues as every bit as important as mobility and often more distressing.
In the book’s forward, Dr. James Leverenz, a well-known movement disorders and dementia specialist, states, “As a physician that works in this field, I am often frustrated by comments that ‘there is nothing that you can do.’ That couldn’t be further from the truth, and the Whitworth’s give you the tools to help manage the disease and its effects on the person suffering with it and those around that person.”
Order Managing Cognitive Issues in Parkinson's and Other Lewy Body Disorders from the Whitworth’s online bookstore at www.LBDtools.com.store.html
Many PD families are understandably frightened of the idea that PD and LBD share a history and that Parkinson’s dementia is a form of LBD. Managing Cognitive Issues answers that fear with the power of knowledge and the strength of hope. It describes the symptoms that warn of impending LBD tells how to use therapeutic alternatives to drugs to extend awareness and maintain a better quality of life. With degenerative disorders, like PD and LBD, it is easy to feel as though the disease has taken over and life is spiraling out of control. Managing Cognitive Issues offers tools for regaining control, such as living a healthy lifestyle, having a positive outlook, using better communication and practicing stress management.
Even though Parkinson’s is one of the major predictors of eventual dementia, its cognitive issues have been overlooked by the medical community until recently. This is changing as neurologists and researchers recognize that these issues as every bit as important as mobility and often more distressing.
In the book’s forward, Dr. James Leverenz, a well-known movement disorders and dementia specialist, states, “As a physician that works in this field, I am often frustrated by comments that ‘there is nothing that you can do.’ That couldn’t be further from the truth, and the Whitworth’s give you the tools to help manage the disease and its effects on the person suffering with it and those around that person.”
Order Managing Cognitive Issues in Parkinson's and Other Lewy Body Disorders from the Whitworth’s online bookstore at www.LBDtools.com.store.html
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