Tuesday, August 3, 2010

Its not like a flea. It will not jump on you.....

It is not contagious. However, Early Onset Alzheimer's Dementia is generally familial. We do not think that WB's parents or grandparents had Early Onset symptoms (65 or younger) and miraculously, WB has tested negative genetically for the markers. Good for WB's kids to know, so how did he come about it?

I posted on this before and continue to believe there were several contributing factors. In his line of work, there were probably a few bumps on the head. He fell out of the car when he was 3 and landed on his head. In his early 30's he was in a boating accident and could have taken a blow to the head. We are certain that this accident contributed to Post Traumatic Stress Disorder and left untreated, could contribute to severe depression and stress, also a contributing factor for Early Onset. That he has severe hypertension most definitely adds insult to injury as it creates vascular issues and years of decreased blood circulation to the brain. 

I asked a cancer doctor once, "why do you think some people get cancer and some people do not?" His explanation surprised me but made perfect sense. He said  it is believed that people take hits; environmental, occupational, genetic, illness, etc. The more hits you take (or get) the more likely you may be to get a cancer diagnosis. 

Again, I think there were many contributing factors, the stars all lined up and WHAM!

This writing is for those friends of his who are his age, who have known him for many many years. Those who hunted, fished and worked with him. Those who knew of his abilities in all areas and are apprehensive because they cannot remember where they left their keys and that they may get AD. Unfortunately, it can remind us of our mortality. 

It is agreed that being around WB in this condition may be scary or make you uncomfortable. Especially if you knew him pre-AD. But if you have been around him in the past several months, you will notice most days a kinder and gentler man. 

I will not tell a lie. There are episodes with outbursts and as Kate previously described, "oh no Mama, Billy Ray is back."

Growing up, WB was Billy Ray. When we married, I promptly changed that to Bill. Wiilie Bill is the name his oldest friends use, thus my pen name for him became WB. Kate refers to Billy Ray as the man she's heard about all her life, the man who raised her older brothers and sisters, the man who was larger than life and would stare down a grizzly bear. Nobody tougher, nobody stronger, nobody ever willing to come at Billy Ray ~ legendary stuff. 

Kate has also devised a plan for a gun that shoots darts. Similar to sedating a wild animal, she suggests that we load the darts with a sedative. Then, when he is having an episode, the shooter just aims and fires away, somewhere in the buttocks. She mentioned this to Dr. Counce, who thought this was an excellent idea. May not be legal, but she enjoyed it nonetheless. 

We do find humor whenever possible. As my friend Amy Dunavant would say, "you just can't make this $hit up!" Even though we think that what goes on in this home us unique, it has been surprising to learn from others who subscribe and comment that his symptoms commonly mimic what they see as caregivers. 

It inspires me to think of the opportunities after knowing that so many people are caring for AD patients ~ patients who are on the cusp of that next stage.

Early Onset is difficult to diagnose and the medical community is leery of labeling a patient at such a young age. WB should have been diagnosed at least 2 years earlier, perhaps even sooner than that. We were ignorant and had no idea. I am not unlike others who think AD would never happen. However, since his diagnosis I have studied this illness to a fault. 

Update: Today, we had made plans to visit a friend(s) home to work in their gardens, house, etc. in anticipation of their return. He lasted about 30 minutes and had to return home as he can no longer tolerate the heat. Very discouraging for him as he worked outside, fished in the summer, worked the fields of the hunting club and played sports 100+ heat all his life.

We finally have a referral for Home Health Care, albeit the wrong kind. I do not need help with bathing him, I need a psyche nurse to visit and I am determined to find one. For him, for me, for us. I need to understand how to care for him now and want back-up. I need someone to tell me when its time to do something else, something different or nothing at all.

Appointment with Dr. Counce is this Friday and I am looking forward to hearing what she has to say.  We are going to continue the UAB clinical trial until he can no longer handle it. 

I want to personally thank those of you who continue to follow this blog.  108 unique hits with just 3 posts is astounding. It makes me realize there is genuine interest in the disease, interest in WB and what a wonderful display of care and compassion. I had lost my voice and feel that I may have found it again. WB's internist suggested several years ago that I write to ease the burden and share with others. Unfortunately, I did not take it seriously. Perhaps I had too much going on, perhaps it just hadn't gotten bad enough, perhaps I was in denial. 

I have borrowed the information below from a reliable source:


A person suffering from early-onset dementia shows symptoms of the dementia before the age of 65. Dementia is the term used to describe the symptoms of a large group of illnesses, which cause a progressive decline in a person's mental functioning. The most common form of dementia is Alzheimer's disease. Still, early-onset dementia may be caused by other conditions including neurodegenerative and autoimmune disorders.


Early-onset dementia disease often runs in families. A person whose parent or grandparent was diagnosed with the condition has an increased risk of developing dementia. Many people with early-onset Alzheimer's inherited one of three genes linked the disease. Other medical conditions such as lupus and multiple sclerosis may also be linked to early-onset dementia.


Symptoms include memory loss, confusion and changes in a behavior. A person may feel anxious or restless. Common tasks, such as grocery shopping or microwaving a meal, become difficult to someone suffering from early onset dementia. Myoclonus, or severe muscle twitching and spasms, is common in early-onset Alzheimer's patients.


A person diagnosed with early-onset dementia is often still working full time and possibly raising a family. Most patients have no physical ailments. Many people react differently to being diagnosed with the progressive memory condition at a young age. According to the Cleveland Clinic, a person may become depressed, feel powerless or become easily frustrated.

1 comment:

  1. Hmmm. When you said this writing if for those old friends he used to work, fish and hunt with - I thought you were going to say something to them about not calling or visiting WB. I so wish they'd just get him out of the house a little bit! I think they need fussin'at!


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