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Dancing with dementia

Dancing with dementia. Christine Boden. A roller-coaster ride. I began studies in counseling struggling, but doing well But I battled depression despite believing that I was getting better Was I overcoming depression? or was the disease slowing down, or even stopping?.

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Dancing with dementia

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  1. Dancing with dementia Christine Boden

  2. A roller-coaster ride • I began studies in counseling • struggling, but doing well • But I battled depression • despite believing that I was getting better • Was I overcoming depression? • or was the disease slowing down, or even stopping?

  3. I’m really getting better! • Neurological reassessment • scans and psychometric tests. • Either I was getting better, remaining stable, declining, or maybe it was all just a figment of my imagination. • But he said my disease looked like a “glacially slow” dementia of the Fronto-temporal type.

  4. A new lease of life! • I met Paul in mid 1998, and we were married a year later • The miracle continues: • Not only am I better than I could have hoped for, • but I have a loving husband who shares my strong faith and supports me as I decline with dementia.

  5. Challenging the stereotype • Battling the stereotype of dementia, of someone in the later stages • If I could speak, I did not have dementia • My diagnosis is still questioned • What is it about dementia that makes people demand proof? • Why can’t we cheer the dementia survivors?

  6. Meeting my “cyber” friends • In DASNI, people with dementia around the world shared how they felt • I was not alone • Together we were • challenging the stereotype of dementia, and • seeking to change negative attitudes

  7. DASNI’s chance to shine! • We were becoming visible • The stereotype was being challenged. • By acting locally and thinking globally, DASNI was making an impact.

  8. Running the race • Two months of traveling • Elected to the Board of ADI • Settling into a new house • Taking on the relay baton for the last leg of the relay race. • But my body was exhausted and my mind stretched beyond its meager capacity

  9. I’m like a swan • Gliding above the water, paddling frantically beneath the surface • I can still swim a bit and put on a good show, but it seems as if I will soon sink • Nobody knows, except me and my poor damaged brain, how bad it is

  10. Struggle and anguish • Every moment of the day is a conscious effort • The world feels like a wobbly place • The unreliability of my memory gives such a hit and miss approach to life

  11. “Black hole of a life unremembered” • Muddled thoughts, with random bursts of energy and lucidity. • Intermittent reception of life as it passes by • Living without labels, in a world in which I know that I know you, but not why I know you

  12. Anxiety and out of control • We have reason to be anxious. • Was there something I promised to do or planned to do? • We are losing our way, not knowing where we are. • Communicating is difficult, so we feel frustration • It's an exhausting way to be!

  13. How can we be helped? • Search for a cure, and • build on our strengths, working with reminiscence • try to understand what this assault to our functioning is like • manage our environment • Find out what has given us meaning in our lives • spirituality can flourish as an important source of identity

  14. Reach out to our spiritual self • The stigma of dementia leads to a view that we are beyond reach of normal spiritual practices • But you can minister to our true spiritual self • We can find meaning in our spirituality, you can connect with us, and empower us

  15. “Who will I be when I die?” • Dementia is described as “loss of self” • When do I cease being me? • We need to create a new image of who we are, • and who we are becoming. • We can choose the attitude that we have

  16. Stripping away the masks • Dementia is a journey into the true center of self • from cognition, through emotion, into what gives meaning in life. • If society could appreciate this, then people with dementia would be respected and treasured • The spiritual or transcendent self remains intact through dementia

  17. I’m becoming who I really am • My real self exists in the “now”, continually and eternally • This is a new way of living, maybe even the essence of living, and is the experience of dementia • I have answered the question of my first book

  18. Dancing with dementia • I’m adapting to the ever-changing music of dementia, with my care-partner • I’m choosing to find out how much dancing is left in me • Much has changed since I stumbled onto this dance floor • but there is still no cure, and • the stereotype and stigma remain

  19. Time is running out • My last effort to capture fleeting ideas, to help change attitudes • I have done all I can • Now it’s time to rest, hoping for a cure

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