LIVE LIFE TO THE FULLEST
LIKE NEVER BEFORE
Living Beyond Diagnosis with Faith and Purpose
All of a sudden a diagnosis of dementia is given.
Our minds are flooded with many questions.
One such question will likely be…..
What path will my disease take?
My faith has been my anchor as I have dealt with
Lewy body disease (LBD) for the past 3 years.
At the time of diagnosis sleeping 16 to 20 hours a day was the norm. I was simply existing.
Recently I watched the Glen Campbell movie. This is such a beautiful movie. My thanks go out to the family for making this possible.
This movie vividly demonstrated that a person with dementia can still do so much.
Yes, the person with dementia will reach a point in their journey that they will not longer be able to do the things they once could do.
The length of time lapsed before reaching this point varies from one person to another.
Mine is simply one person and their journey. I have been determined since diagnosis to make the best of it.
My mom and dad both had dementia. My living with Lewy body disease (LBD) has given me a new perspective.
My mom and dad did not discuss the impact that dementia had on their lives.
Since being diagnosed, there have been many times that I have wished that they had told me what it was like living with dementia.
Within hours of being diagnosed, I told my family that we would hold our head high and be transparent with the hopes that others might be helped.
Having made that decision, I have experienced ups and downs.
My diagnosis has not changed since June 27, 2012….
mild cognitive impairment with underlying Lewy body disease.
Recently, a physician told me that I was using my cognitive reserves and working hard to maintain them.
A few weeks ago I had written a blog and shared it in a LBD support group.
It did not take long for someone to comment that there was no way possible for this man to have LBD…..no one they knew or themselves had ever seen anyone that could do this.
My immediate response was to ignore the comment.
My diagnosis was given by both Emory Cognitive and Memory Clinic in Atlanta, Georgia and by a national expert in Lewy body disease at Mayo Clinic in Rochester, Minnesota.
The question that came to my mine was
“what medical school did they attend”?
Following that comment, someone posted that maybe he did it before declining.
My passion in 42 years of practicing pharmacy was to love my patients and help them achieve the best outcomes possible by answering their questions, maintaining medication compliance, and navigating the healthcare system.
One year after diagnosis and spending much time in prayer, it was revealed to me that the same purpose that God gave me during those 42 years was still relevant today. The only thing different was, my venue had changed.
Because God has given this window of opportunity to remain in the MCI stage, I wanted others to know that persons with dementia can still do a lot. especially in the mild to moderate stages.
My family understands my desire to “let me fail” because there is so much that I can do.
Because of this, I responded to the comments.
I can only hope and pray that others will watch the Glenn Campbell movie and learn there is so much that someone with dementia can do.
Glenn Campbell’s life was his music. It was his lifeblood.
Even the physician at Mayo Clinic could not explain whey he was still able to do the “tour” other than the fact that music was deeply imprinted in his brain.
For me, the passion of loving my patients and helping them was deeply rooted in my brain, and I ‘m still able to do it.
In my blog today, I have attempted to address two important things.
Don’t judge what someone with dementia can or cannot do.
Secondly, if you choose to say someone with dementia cannot do something…..please make sure you do your homework and get your facts straight.
Everyone with dementia represents one person with dementia.
Their journeys will be different.
Living with dementia is hard enough without having others tell you that you cannot do something and you know you can.
I will continue with my passion of dementia awareness and education.
I will continue to help others. These are my passions in life.
I will continue to rely on God to give me and my family
the strength to follow our journey.
© 2015 Robert Bowles
((Originally posted 2015 July 4 at lbdlivingbeyonddiagnosis))
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