When we first realized my loved one had lewy body dementia, I scoured the internet with one question: Is it Reversible? I searched the internet far and wide and the only things I read literally made me scream into the air, “No! No! No!” I read of no hope anywhere. It felt worse than cancer. At least with cancer you have maybe a 20% chance of hope or even a 5%. With Lewy Body Dementia I found none. Then I stumbled on this video:
The video gave me a flicker of hope. Was it possible that LBD reversible? I put the video up on my newly joined Facebook group as a means of encouragement that even if there was small hope, there was hope. It was my very first post. The response was a surprise. It was blasted with double-barrels! “I don’t believe this!” ‘Not true!’ ‘There’s no evidence!’ Welcome to the world of caregiver Facebook groups. See my post here: Caregiver Facebook Groups: Are they Worth it? I was shocked at the response. But for me if we don’t have hope, then what do we have left? Prayer began fervently as things went to bad to beyond bad. If your loved one has LBD you know exactly what I mean. It is THE nastiest form of the dementias. We were only getting about 1 hour of sleep a night, the meds were confusing to navigate and the main information I found was on the internet. It was so bad. But we kept hoping, believing and praying.
One day I found a study online for a cancer med that had been shown to reverse LBD. I was so excited! But then I came to the painful reality. It was a government study, not yet FDA approved and the study had ended. Discouragement continued to dig its endless pit.
Then another day it came to me that there was a medical professional who lectures at a medical university and has a different view on disease. She actually believes what the founder of modern medicine discovered, “Let food be thy medicine and medicine be thy food.” She adds supplements and some prescription meds for patients to heal the damage the body has taken from poor food and lifestyle over the years. We called her up. A 6 week waiting list. Ugh. But we persisted. When we told this woman that my mom had LBD, she scoffed. She was unafraid of LBD. I knew we had found the right person to go to for help. She suggested some things, we tried them and within weeks my mom started coming out of the tornado of LBD. No one could believe their eyes (medical professionals included). It was beyond what I could have hoped or imagined. All credit to God as He is the one who helped her and gave understanding to humans. So is Lewy Body Dementia Reversible? I can’t say yes. A) Because I’m not a medical professional in brain science and B) Credibility only comes with time. Lots of time. It’s only been 6 months now and my loved one and I have had more fun times, done more together than we have in years. But I know there is still a story waiting to be written. And I can’t write it for years to come. In the meantime every single night we continue to pray for her total healing. I long to see victory over this disease. So why do I share this?
- Never give up hope. Hope is what motivates us to seek a change in our circumstances. Without it we settle for the status quo. If you read any survival story, they will always mention that “hope” was one of the key factors of survival. .
- Seek God always. He is a God who heals and can help you. Understand though that he is not a God of “insert prayer out come miracle.” He doesn’t work that way. But he loves you and he your loved one. He hasn’t abandon you in this situation. Never give up seeking Him and praying. He is a God of miracles. .
- Seek out medical professionals who understand LBD and believe there is hope somewhere. In looking for a good doctor find someone who isn’t afraid of the fight. There are good medical folks out there.
If your loved one has LBD, my heart goes out to you. Never stop fighting this disease and never lose hope. Even to the very last breath. Without hope, nothing will ever change.
Update 12/21/17: Mom continues to do well and is 95% her old self. If you are interested in going to the same naturopath, it is Lisa O’Brien in Shawnee Mission, KS (of O’Brien Pharmacy). You would have to have seen almost to believe how radical the turnaround has been. So grateful to God.