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Sunday, October 10, 2010

Lewy Body Dementia Awareness Week

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This is an emotional post for me to write. How do I talk about this? How do I detach myself long enough to educate people about this devastating disease that is now insinuating it itself into my life and even more so, my parents' lives?

For most people who have known my dad for a long time, they will identify with him as being gregarious, active, vital and genuine and I hope this is how they will always think of him.

About four and a half years ago, my mom started noticing that my dad was having some memory issues. She wasn't the only one. People at his job had noticed too so it needed to be checked out. Not too long after that, he began to develop some movement difficulties. My Dad was referred to a neurologist and was diagnosed with Parkinson's Disease.

For the next while his condition was treated as Parkinson's with medicine for movement disorders and he also took a medicine to slow the memory problems. It was suggested that he retire from his job as he worked around high voltages as an electrician for the local electric company.

In early Spring , my mother started noticing some major changes in Dad. This was during a major trip they'd taken to Australia earlier in the year. He was more often confused, his movement had slowed even more and he was at times "seeing things" that were either not there or his brain was mis-identifying objects. The symptoms worsened once they were home.

Mom was dissatisfied with the doctor that was tending to Dad's "Parkinson's". His bedside manner was undesirable and he was ONLY treating the movement disorder. She came into contact with the Senior Mental Health chapter near her and they arranged for an in home evaluation and a following meeting with the psychiatrist.

It was determined that Dad has Dementia with Lewy Bodies. He is 69 years old.

Most people hear the word "dementia" and automatically think of Alzheimer's, but this particular dementia differs from Alzheimer's in that it includes hallucinations and due to the movement disorder, falls. It differs because the patient can phase in and out of certain symptoms. That is to say, one day the patient may forget how to do something and the next day they may not. It also brings with it a bouquet of other issues, such as REM sleep disorder, excessive daytime sleepiness and restless leg syndrome. All of these things can have occurred before the actual diagnosis.

Lewy Body Dementia usually has a rapid progression and there is no cure for it. Commonly misdiagnosed as Parkinson's Disease, it used to be considered rare. It no longer is as it may potentially be the second most common subtype of dementia after Alzheimer's.

Because DLB has no cure, it gradually renders people incapable of tending to their own needs. Caregiving is thus very important and must be carefully managed over the course of the disease. Caring for people with DLB involves adapting the home environment, schedule, activities, and communications to accommodate declining cognitive skills and parkinsonian symptoms.

My goal at this time is to support my parents as much as I possibly can, both physically and emotionally and to educate people about this disease. Hug someone you love today because you never know what tomorrow may bring.

The Lewy Body Dementia Association has a full, comprehensive website devoted to this disease and have launched their awareness week today, running until October 16th.


Tamara said...

You did a beautiful job on this post. I am so sorry that your father and your family are having to deal with this.

My mother had Lewy for about the last ten years of her life so I know how hard it was to write the post.

Peace and strength to you,

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