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My apologies because I don't even know what folder to post this to and it's a long post. Nathan and I received life changing news about 6 weeks ago and it has taken a long time for us to process it. I am just now in a position to feel like I can share it. Let me preface my post by telling you that the news is wonderful, unexpected and astounding! That being said...
As some of you know, Nathan was diagnosed with Alzheimer's in 2013. My undying gratitude to those who knew for the support and strength you've given me. As I have said many times, it's not a path we would have chosen but would travel it together as we do in all journeys in Life. We have spent the last seven years planning for where we thought we were going. We started living with a third "person" in our life who we even named Al Zymers in order to adapt. Al got blamed for things forgotten, misplaced or confusing. I know it sounds like morbid humor, but Al allowed Nathan to externalize what was happening and even laugh about it now and then.
As part of Nathan's treatment, he was evaluated each year to gauge his deterioration, adjust medications, and so on. Our last visit was January of 2019 for his evaluation. Though I already had my silent suspicions, I didn't dare to hope. So I was still shocked when Nathan's neurologist told us that though it had only happened once during all his years in practice, he felt Nathan may be the second patient he had ever misdiagnosed with Alzheimer's. Nathan was not deteriorating the way that would have been expected for Alzheimer's. His neurologist scheduled him for a very intense, four hour interview/test with a doctor who specializes in memory disorders only. After waiting for months to see the specialist, getting him scheduled for the test a month after that and then waiting nine weeks for the results... Nathan does not have Alzheimer's or any form of dementia. His cognitive, reasoning and logic skills from memory are in the 97th percentile, his verbal memory is in the high 80's but it's his visual memory that's just terrible. Doc felt it could have been from an old motorcycle accident when he lost consciousness and cracked the back his helmet. As Nathan got older, it became harder and harder for him to self-adapt to the injury's affect on his visual memory.
As I said earlier...it's taken us awhile to process this wonderful news and has completely changed the direction of our life. In a way, it's like starting over again. A friend asked me if I was angry about the misdiagnosis. I told him I had given enough time and energy to the disease and refused to spend one more minute on it. I refuse to let anger diminish our joy. We went home after the wonderful news and that same day, we kicked Al Zymers out of our house and out of our lives.
I know this was a lengthy post and I appreciate you for reading it to the end.
Sayadina / Kate
Thank you for sharing your wonderful news! It sound like you and Nathan went through this difficult time with a great deal of strength, love and a sense of humor. I wish you both all the best as you start this new chapter in your life.
What fantabulous news, Kate! Enjoy every minute of your new life! <little happy dance> (and bye Al, see ya never!!)
Congratulations on your terrific news & evicting Al from your lives.
Sending you & Nathan my best wishes for your new found freedom.
Mind Boggling news. Such great news too. So glad to see you lost your boarder.
Im going to move this to Message from the Heart as its not only for sad news.
Wonderful news! Unfortunately, it is too easy for someone to get misdiagnosed. I’m not criticizing the medical profession when there are no easy answers to explain the diagnosis. You were fortunate to have someone who was willing to reevaluate and look for more answers. I hope you are both able to enjoy your lives. I love the strategy you used to compensate by having a third person to blame.
So many doctors take affront when you say you want a second opinion or even question the validity of their diagnosis. However, there are some out there who's ego is not so large that they cannot realize they have made an error, actually admit to the patient, and help the patient seek the care they need.
You're very fortunate to have such a wonderful doctor. .....Doctors are human beings who can make a mistake just as any one else. And someone once pointed out to me that their oath allows them to "practice medicine" ..... it doesn't mean they will always get it right.
Thank you for your wonderful post to remind us that even when no hope is given.....there still is hope for some.
Ah Kate! This is such wonderful news. I wasn't aware of the 3rd person in your life, and don't know how you and your husband approached "him" with such humor and grace. Thank you for sharing such happy news. I know all of your friends are smiling as much as I am.
Love and hugs
I was glad to read what you posted about Nathan's doctor. He is a remarkable doctor and humble enough to admit he may have been wrong. I could tell he felt some trepidation while telling us he might have misdiagnosed Nathan. I was quick to let him off the hook by reminding him that there is no blood test for Alzheimer's or any other definitive test. It's a combination of a brain scan coupled with interviewing the patient and family to create an overall impression. Unfortunately, Nathan was going through some other things at the time of our initial diagnosis which gave him many of the behaviors of an Alzheimer's diagnosis. Once he got the diagnosis, he subtly began living the disease instead of his life which didn't help with his annual evaluations. We will be seeing his doctor again in early September to see how we are to move forward with the visual memory issue. The specialist who did the in-depth testing said the only thing she wants him to do is not drive anywhere for the first time by himself, get out more / volunteer and to practice making visual things "personal" if he needs to remember them. Example, if he needs to remember a picture, put himself in the picture.
Sayadina / Kate
You got that right! As for Al, he's been replaced with new jokes like, "Don't try and pull the Alzheimer's card on me!" and getting flash cards for visual memory training. One of the things the specialist wants him to do is get out more and volunteer so Nathan is looking at the local SPCA or the Wildlife Rescue / Rehab in our area. He just took a bunch of baby bunnies there who my German Shepherd found all over our back yard and tried to herd into a group. I think he'd be great at that.