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PET Scan results are terrible help
Tklbmom
Posted: Thursday, April 26, 2018 4:15 PM
Joined: 2/20/2017
Posts: 30


We finally got the results of my DH PET scan and it confirmed EO Alzheimer's. Even though he was we were given the diagnosis over a year ago when he was 52 he held out hope it was something else.  We have a great life now. We can travel and have friends.  No one can tell he is ill.  But we read the 60 minutes interview and our future looks horrible.  Any suggestions how to live with this black cloud looming over us?
Canada111
Posted: Thursday, April 26, 2018 10:17 PM
Joined: 8/22/2016
Posts: 263


Do everything on your bucket list now. I have this disease and it's younger onset although I'm older than your husband. I have lost many abilities, executive skills and can't travel now. My life is very limited but I retain the ability to write and communicate. Do everything now and be kind to your husband. I am so sorry he received this diagnosis.
alz+
Posted: Friday, April 27, 2018 6:41 AM
Joined: 9/12/2013
Posts: 3560


I just happened to watch the 60 minutes thing an hour ago so I thought I would throw in my 2 cents.

We can focus on doomsday scenarios and find tons of photos etc describing an awful future, stay tense, focus on the losses, spread our anxiety, and dread every day. 

We can pretend it will be easy and stay easy, until it gets hard or impossible.

****

Hey I lost my train of thought! ha! Well dying of many illness and conditions is not easy, everyone will die of something. Anxiety about dying is normal, dread of becoming helpless is normal. So what you decided to have as your North Star guide is what shapes your future.

I give myself whatever I need to be calm and recognize lowering my expectations gives me a good life now. Some days I can clean and walk, I made a journey to have a family reconciliation reunion. My daughter came to accompany me, I stayed with the father of my kids who is still a great friend. We laughed, we cried, we played whiffle ball. It was healing for everyone. 

****

None of us know if a treatment is going to come this year or next so I choose to live as if it is possible. I plan for eventual helplessness but I found CBD oil lets me stay functional and happy.  I started using a vape pen to escape panic in less than 5 minutes. 

The illness challenged me to grow up, to let go of people who were not honest or kind, bought myself a great mattress, got my sense of humor back, learned to stop taking offense, learned to forgive quickly, etc.

End of life stuff really is  opportunity to do what matters. 

Wishing you both the best. 


Mimi S.
Posted: Friday, April 27, 2018 8:21 AM
Joined: 11/29/2011
Posts: 7029


Welcome to our world. I'm so glad you fond us.

I assume the PET scan confirmed plaques.

Do make an appointment with a Certified Elder Law Attorney to get your medical and legal papers in order.

Then have fun. Start working on your bucket list.  Both of you learn what comes next so you know what to expect.  My opinion: do share your diagnosis with family and friends. 

Can hubby joins PWDs on the Younger Onset Board?


jfkoc
Posted: Friday, April 27, 2018 10:17 AM
Joined: 12/4/2011
Posts: 18845


Get your ducks in a row and do what you want/can.