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.