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