Four years have passed since Marcia’s Alzheimer’s diagnosis and I haven’t blogged often, or with detail, on how Alzheimer’s is progressing. Anyone can go do simple research to understand the seven stages of the disease that describe how Alzheimer’s slowly takes the life of the afflicted, and within Alzheimer’s circles, at least in the Early Onset Facebook support group I’m a member of, there seems to be an obsession with the stage we are dealing with. I don’t put a lot of stock in the stages as sequential steps in the disease. I’m not aware of anyone who fits neatly into each stage and who moves predictably from one stage to the next. In Marcia’s case, she would have been described as stage 5/6/7 very early on with regard to communication, but memory and most other areas were in stage 2. Bottom line is that it doesn’t matter to me what stage Marcia is in. Today is the only thing that matters, and no one really knows what tomorrow or the day after will bring. And the most frustrating part of Alzheimer’s, there’s nothing we can do to prevent what’s going to happen anyway.
For those that know Marcia, but are not near us, or for those who wonder or ask “how’s Marcia”, I hope you find this helpful. Progression of the disease varies by person. The average life expectancy is 8 years from diagnosis, but some live 20 years or more with Alzheimer’s. There’s a theory that those with Early Onset progress faster than those diagnosed later in life. Our neurologist believes progression tends to be steady. Could be fast steady, or a slow steady, but there doesn’t appear to be stabilizing periods. I would say that Marcia’s progression has been steady, but there have been a few times, in conjunction with two seizure episodes, where progression seemed to escalate. While I don’t have a frame of reference to compare Marcia too, I would say her progression on on the faster side. Marcia and I recently had an appointment with her neurologist in New York City. As Dr. Honig looked at the last four years, spanning our first appointment with him to now, he says progression would certainly appear faster than we would like to see.
So what does progression look like? Progression for Marcia is deterioration of abilities in the area of speech, mobility, memory and self-care and all have changed, or progressed in 2014. While I’m committed to protecting her dignity with regard to how much I share here publicly, it’s fair to make the following assessment of where she is today:
· Speech (aphasia) has always been front and center in Marcia’s Alzheimer’s presentation. Aphasia is still very much the dominant characteristic. While she seems to know what she wants to say, she really cannot communicate with us at all. Not only does she have extreme difficulty verbalizing anything, it’s become very difficult to get her to give even yes or no responses. Her speech has deteriorated to little more than a few words a day and if she’s in pain (and she is), she can’t say or even point to where her discomfort is. If she wants something, I do my best to guess. I wish I could remember the last conversation we’ve had, but it’s been years.
· 18 months ago, Marcia ran two 5k races. In May, she ran part of the Branchburg Race Against Alzheimer’s (unplanned, but she was determined to try). Today, she has difficulty walking up the stairs to our bedroom. I don’t think this is entirely Alz related. Hip arthritis and spinal stenosis are likely causes too, but there is some dementia contributions. Maybe not Alzheimer’s. It could be Lewy Body Dementia that is factored in here. In addition to pain or discomfort, she also tires easily, which prevents even walking through the supermarket on a basic shopping trip.
· Her vision has become significantly impaired. By this I don’t mean she needs a new pair of glasses. Her vision changes appear to be in how she processes images. Since she can’t tell us what she sees, we can only guess that she’s not seeing things the same way we do. She seems to see things that aren’t there (shadows seem to appear three dimensional, or look like holes) and her peripheral vision seems to have narrowed rather significantly. She seems to do okay during the day, when she’s not tired, or in well-lit areas. At night, when shadows are present or when she’s tired she becomes paralyzed with fear and either takes baby steps, or freezes in place. We now have a wheel chair/transport chair to help get her around in these situations.
· Posture: Marcia cannot stand up straight. Often, her chin is firmly against her chest. She’s been going to physical therapy to help straighten her spine and loosen the muscles in her neck. It would appear this is dementia related as sometimes she can keep her head upright, other times she has the posture of a much older woman.
· Self-care: As hard as Marcia might try, she just cannot do things for herself. I feed her breakfast and dinner every day. While she can no longer utilize silverware without assistance, she can eat with her hands (sandwiches and fruit). Her prescription drugs need to be crushed and put into oatmeal, applesauce or yogurt, which she takes in the morning and at night. She can’t get dressed or undressed and she can’t shower or brush her teeth without assistance.
Marcia’s cocktail of illnesses include: Early Onset Alzheimer’s, Lewy Body dementia, Primary Progressive Aphasia (PPA), Myoclonus, Epilepsy, anxiety, depression, breast cancer, arthritis and spinal stenosis. We’ve stopped giving Marcia her breast cancer medication after consultation with her oncologist. She had about 18 months more to go before she would officially be considered in remission, but the side effects of the drug include cognitive decline and her oncologist saw a pretty dramatic change in six months and felt the risk of discontinuing the drug was low. Seizures and anxiety are effectively managed by Keppra, Klonopin and Zoloft. But Alzheimer’s, PPA and Lewy Body Dementia are not treatable. And that is painfully obvious.