When a loved one falls very ill, we would like to think that the medical community has all the answers. Sadly, this just isn't true. When my husband, Dean, developed a little-known disease called Lewy Body Dementia (LBD), I searched continuously for information until one of our many doctors suggested I check out the Lewy Body Dementia Association website. I did and finally confirmed the hideous disease that was ravaging my husband's body.
In 2005 and 2006 when we were first seeking answers, doctors at a national clinic, as well as doctors at our local neurology clinic, gave us the diagnosis of Parkinson's disease. I am an experienced physical therapist and have worked with many PD patients. Dean's symptoms didn't look like typical Parkinson's disease. My brother and sister-in-law are also very talented neuromuscular physical therapists, and they agreed that it had to be something else. In our search to find a disease that had some PD symptoms, LBD never surfaced.
More information on LBD is forthcoming now. Some people whom I counsel actually have been given a diagnosis of LBD by their attending doctor. Unfortunately, there are still many medical professionals who are unfamiliar with the disease or tell patients that what they have is Parkinson's disease with dementia or Dementia with Lewy Bodies. The first is determined if a person develops physical dysfunctions such as a shuffling walking pattern before they experience mental complications similar to Alzheimer's disease. The second is used if the mental problems surface before the physical problems. Both fall under the general umbrella of Lewy Body Dementia.
What difference does it make, you might ask?
For me, it was huge. Parkinson's disease progresses slowly. Severity in symptoms might not surface for 20 years. The same goes for Alzheimer's. LBD moves insidiously quickly. In the span of three short years, my husband went from a healthy middle-ager who played tennis three times a week to a man with limited balance, poor cognitive abilities, and severe anxiety attacks. Until I realized the true nature of the disease, I thought I was providing counter-productive care -- doing something really wrong that actually might be making him get worse before my eyes.
My husband didn't do anything to contract this disease. It is not contagious. As his abilities rapidly deteriorated, I fought savagely to provide him with the quality of care that would give him some enjoyment in life. I couldn't do that until I knew what to expect of the disease: When might I need more help, more walking equipment, alternative medications? What would help him and what might potentially hurt him? The broad diagnosis of PD didn't provide any of that information.
I almost learned this the hard way. One day when Dean was still walking, we spent the afternoon having lunch and doing errands in the community. He was able to walk down our step from the porch to the sidewalk and easily get into the car. At this stage in the disease, he had a tendency to tire easily, so I always had a wheelchair in the back of the car just in case he needed it. On that particular day, he was exhausted when we got home. I transferred him to the wheelchair, pushed him through the grass to our front porch and attempted to hoist him up the one step to the porch. It didn't happen. There we were in the middle of the afternoon, completely alone. I teasingly said, "If we can't get you to walk up this one step and into the house, I may have to leave you here until the neighbors come home." I brought a chair from the house to let him sit once he got up the step, then I pulled the empty wheelchair up to him. I then transferred him back into the wheelchair, rolled him to the bedroom, transferred him into bed, and then collapsed into a chair myself. I had a new ramp built to our porch the next week.
As I have been counseling other wives who are just starting through the maze of caregiving, I encourage them to be brave. Find out what diseases have effects similar to the symptoms of their loved one. Take questions to the doctor. If they are not comfortable with the medical discussion, seek another consultation. It is important for patients with these lookalike Parkinson's diseases to be correctly diagnosed, because the drugs used for PD may not work for other diseases that initially look like PD.
A spouse deserves to know exactly what they are dealing with, the good and the bad symptoms. Yes, LBD does move swiftly and virulently, but it also can have some interesting positive symptoms that are not usually seen in patients with PD or Alzheimer's. One is a waxing and waning of symptoms. My husband could wake in the morning so weak that he could not stand or walk to the bathroom. That would require that I give him a sponge bath in bed. On those days we would be so confused that I could not leave him for a minute or he would attempt to stand and consequently, fall to the floor. Interestingly, he could be back to his jovial self within hours, able to get out of bed independently, walk without a cane, and enjoy a wonderful evening in a restaurant. If I hadn't read about the fluctuation in skill levels, even in the same day, I might have thought he was obstinate on his bad days or getting well on the good days.
Understanding the course allowed us to support his weaknesses and encourage his strengths. So again, I encourage all spouses to seek answers. When we know what we are dealing with, we have the opportunity to create an adventure, rather than succumb to a disaster. Be brave. The life of your loved one depends on it.
Judy Towne Jennings, PT, MA is a physical therapist living in Fairfield, Ohio. She has worked for many years with adults and geriatric patients and was also a baby development specialist until caring for her husband forced her to become an expert in caregiving for Lewy Body Dementia.
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