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saying hello too my friends and new people
alz+
Posted: Friday, September 4, 2020 12:37 PM
Joined: 9/12/2013
Posts: 3579


weird to find a post from 2014 from me on melatonin for sleep. I don't recall why I quit but was just thinking about trying it again. To get sleep I find physical exhaustion is biggest help so have been swimming in pool where I live every day and doing yoga and a 1+ mile walk. 

My big accomplishment was getting my medical records changed after last year wildfire emergency room visit which said I was "pretending to have ALZ but really had a mental illness". Forgot what it was called.  Those records affected my healthcare when hospitalized this past spring. It took a year of stress and ambition (no one else thought it mattered) to get the papers needed to amend those records, fill them out and send them back. When I got notice they received my paperwork and approved and changed records I was ecstatic.  

The best thing I did for myself this far is early on after diagnosis I searched for stories of people who lived a good life with ALZ and created my own world where it is easy to exist.  I am kind to my "symptoms".

CBD oil still helps me do things, order thoughts. I have been baking (new for me) and I can still make food for myself. My partner in this (Habib my kids' father) brings me groceries and gives me time with my dog who now lives with him. A neighborhood cat visits me every day. I order basic groceries online, the store site saves lists of whatever I ordered before and I can just check those items now. I learn to do things in new ways.

I do yoga also via youTube and practice lifting my feet when walking every day (like stepping over garden hose). Posture is a key part in learning to pass for normal. Basically going deaf. I social distance pandemic or not. 

Neighbors gave me unwanted plants, pots, dirt and a chair for outside. Gardening is too much but I  water the plants. 

Setting my mind to defying the horrible expectations most people have after diagnosis, creating my own easy world, rejecting stages, learning to laugh at mistakes plus the cbd makes this entirely livable.  The worst part at this time is hearing or reading people describing horrors of life with a "demented relative", online and in personal conversations. I gave up efforts to tell them it does not have to be that way.

wishing you all a better journey - love and courage

 


Iris L.
Posted: Friday, September 4, 2020 4:58 PM
Joined: 12/15/2011
Posts: 16705


Salut Alz+!  That's French for hello!  I'm relearning French during this stay-at-home time.  You have found ways to accommodate your illness that suit YOU, not what has been imposed upon you.  I find myself doing the same as you, except for ordering online.  I still get out to the market weekly for my groceries.  I also had a few vet visits, because one of my cats was injured in a cat fight, became septic and almost died.  Thank God, he has recovered.  


Down here we are anticipating another heat wave, which they say will be worse than the last one, with possibly new record highs. I was very low functioning during the heat wave.  I'm not looking forward to this again.  My functioning had reached a low level before Covid and before the heat.  My sole goal is to remain FUNCTIONAL, because I am the only one around to take care of me and my cats!  I have role models that I use to guide me as to what I should be doing or not doing.  You are one of my role models.

 

I'm so glad you stopped by, Alz+!  Stay well, and come back when you can!  


Iris


KawKaw
Posted: Friday, September 4, 2020 8:56 PM
Joined: 11/22/2019
Posts: 340


I enjoyed reading about your activity and routine, alz+.

Maintaining function and living as well as possible are my goals as well.

I am grateful that my physical health is adequate to allow for vigorous exercise and activity I enjoy.

Be well, all.


ladyzetta
Posted: Friday, September 4, 2020 9:18 PM
Joined: 2/16/2017
Posts: 1086


Dear Alz+  

It is real nice hearing from you, I think of you often.  I wish I had some of your energy and could do just a little of what you do. And the only reason I don't is because I am, lazy. I need to work on that.  You sound like you got everything in your life under control.

Its nice that Habib stops by and helps you and brings your dog so you can visit with them both. 

I live in Oregon so we have been battling fires. None are close but we are getting a lot of smoke. I have been staying in as much as possible due to the heat and the smoke.

Please continue to take good care of yourself and stop in often.   Hugs to You, Zetta 


Michael Ellenbogen
Posted: Saturday, September 5, 2020 6:15 AM
Joined: 11/30/2011
Posts: 3552


I am so glad to hear from you. I have been think a lot about you the last few weeks. I even thought of you yesterday morning as I wanted to send you a email but as usual something else popped up and I forgot about it until I read your post late yesterday. I am so glad you got your medical records fixed as I knew how important that was to you. I am also starting to simplify my life in so many ways. I also look forward to moving in my new home sometime around March. Please continue to post here as we all love you. 


Lane Simonian
Posted: Saturday, September 5, 2020 10:02 AM
Joined: 12/12/2011
Posts: 4854


I am always glad to hear from you and to read your messages.  I imagine it is a very happy day for both you and your dog when you are together.  That was very good that you were able to get your medical records changed; not an easy task.

The exercise and CBD oil are both working as they should.  

This may not be the right word, but you have seemed to have found a good equillibrium.  That is comforting to know.


zauberflote
Posted: Sunday, September 6, 2020 8:14 PM
Joined: 10/24/2018
Posts: 1374


Alz+ it is good to hear your voice again! It does sound as though you have found a balance that works for you! And CONGRATULATIONS on getting that medical paperwork error fixed-- I am not sure I would have even known were to start, and I do not have dementia. That took a whole lot of determination and sticking with it. 

Iris, I didn't know about your cat almost dying. How much you must have worried!

Hugs and prayers for all who are in the line of bad weather, fires, and other such. 


zauberflote
Posted: Sunday, September 6, 2020 8:16 PM
Joined: 10/24/2018
Posts: 1374


 Alz+ it is good to hear your voice again! It does sound as though you have found a balance that works for you! And CONGRATULATIONS on getting that medical paperwork error fixed-- I am not sure I would have even known were to start, and I do not have dementia. That took a whole lot of determination and sticking with it. 

Iris, I didn't know about your cat almost dying. How much you must have worried!

Hugs and prayers for all who are in the line of bad weather, fires, and other such. 


Unforgiven
Posted: Monday, September 7, 2020 10:12 AM
Joined: 1/28/2013
Posts: 2661


It is good to hesr from you, Alz.  I keep checking here from time to time to see how you are doing.  I'm glad to hear that a neighborhood cat has taken you undr its wing, so to speak.  Cats are attracted to a quiet soul.

I'm sorry to hesr about your cat's wound, Iris.  We finally got our little formerl feral male to the vet for, 'ahem', his surgical imptovement.  Very stressful for me, as I wasn't sure I could even get him into the carrier, and I knew he'd be terrified.  He was a sweet little fellow and never left so much as a scratch on me or the staff.

I don't know anyone who functions well during a heat wave, including me.

Alz, I know you are further north in the state.  Has your weather begun to cool yet?


alz+
Posted: Monday, September 14, 2020 6:25 PM
Joined: 9/12/2013
Posts: 3579


LadyZetta -

about "doing things" -

I am in bedlock without cbd. Still some days I forget to take it and find I can not cross the street to get mail or anything. I tell myself, "well, you've had a good run at living, you knew it would eventually get worse etc etc etc"

then I see the bottle sitting there and take the drops. usually 10 minutes later I have gotten the mail and am doing dishes or sweeping carport...

....

Iris - YOU taught me stuff for years, what an honor to help you with ideas now. Thank you.

Michael - Thank you for your support in getting my records changed. The doctor at hospital said in his notes I had Parkinson's. I do have repetitive movements now but my self treatment would be the same anyway! 

thanks for the kind words and welcome everyone...