Tuesday, June 26, 2012

Pick's Disease

How many of you have heard of this disease?  A member of my family is suffering from this, which closely resembles Altzheimer's. Pick's Disease, however, is usually first recognized by behavioral changes as opposed to the memory lapses associated with Altzheimer's Disease. Because the two seem so closely related, especially to anyone who may not have had direct encounters with either, Pick's is studied far less than Altzheimer's.

The quick and nasty run-down of the disease:
  • Neither the cause, nor a cure, is known.
  • Pick's affects primarily the frontal lobes of the brain.
  • It affects people between the ages of 40 and 60, and is quite rare after the age of 60.
  • It starts with behavioral changes which can best be described as uninhibited - side-stepping social decorum, not caring, or not noticing, if people's feelings are hurt, possibly hypersexuality.
  • Mutism and aphasia are frequently associated, and grow worse as the disease progresses.
  • Basic research I've conducted show the disease can run its course in as quickly as 5 years, leading eventually to complete apathy and living in a vegetative state before death. However, documented cases have shown the patient living up to 15 years in this state.
  • I've seen conflicting information, which I believe explains all that there is to know, regarding whether this is genetic or not. Some sources say yes while others state there is no genetic proof. Basically, they don't know.
Unfortunately, what we're encountering is, because this is such a rare disease (counting for 1% - 5% of dementia cases [http://www.bhoffcomp.com/coping/picks.html]), very little support is "out there" for Pick's Disease family members and caregivers, specifically. There is, obviously, Altzheimer's Association support groups, which are wonderful.

Also, because the age group is so young for sufferers of this disease, support through health care and insurance is spotty, at best.

Looking at this information is daunting. But add "life" to it, and I have tremendous respect for anyone who works in a nursing home or is a private caregiver. Essentially, word of this disease needs to spread so that those who need help may receive it.

No comments:

Post a Comment