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fading away from electronics, appreciate you all
alz+
Posted: Tuesday, June 19, 2018 5:32 AM
Joined: 9/12/2013
Posts: 3549


Time has come, for now at least, to ease off the use of computer.  My years of writing in comment sections and especially being here on these boards is winding down.

Lately every day is filled with "While I Still Can" sense. So while I still can I want to tell Iris, again , thank you for saving my life back when I was diagnosed and suicidal. You helped me have a life so much better and gave me courage to make this stage of life suit my own needs.

To my friends going thru this illness who have offered love and laughs and encouraged me to make a trip west to see my kids, grand kids and old friends, who were kind when I was down and lost.

I started having cognitive problems, vision changes, a sense of constant anxiety way back in 1990. There were physical aspects which doctors diagnosed as "Possible MS". My father had  ALZ and I helped care for him which was an honor and joy aside from the weight of the responsibility and my own problems.

My husband and I fought, we reacted poorly to each other's needs and the boards helped me move past that. He is now in charge of everything and I have learned to let go and we concentrate on having fun in all possible ways as that is what I longed for, to have fun again.

So while I still can, I wanted to say I am not on boards much because electronics, phones, tv noise etc is affecting me. To write something that is close to what I am wanting to share takes me a long time. The charging of computer and phone irritate me - ??? - figuring out stuff in general.

Through these friendships I found my way. I solved chronic shingles and UTIs and discovered cannabis medicine. I never got the basement cleaned out, all my friends are dead (friends from high school are now virtual friends again though!) and I cut ties with family who were abusive and cold.

The boards offer a place to come and ask, or teach, or share as each of us figures out how to live with the condition. There are people who posted once or twice who wrote something I never responded to online but took to heart as inspiration, they gave me direction.

What we say here matters. Be open to life getting better, to finding your own way thru this. We do not become soul-less creatures, not every one is cut out for caring for another person. Carry a light load.

***

I am not "leaving boards" - everyday I think of my friends here and as it gets harder to make myself use the computer to share and learn here it has become a source of anxiety, that is why I am cutting back.

A new bird was seen, life goes on. 

Love one another, while you still can.



Mimi S.
Posted: Tuesday, June 19, 2018 8:13 AM
Joined: 11/29/2011
Posts: 7035


Dear Alz+,

I am glad you are not leaving. You write so well.  Perhaps you can write brief responses to others posts.
We, somehow, need to get more posters and then encourage them to be a part ofour coversation here.

jfkoc
Posted: Tuesday, June 19, 2018 9:44 AM
Joined: 12/4/2011
Posts: 17529


Agree...please continue to touch base....
alz+
Posted: Tuesday, June 19, 2018 10:50 AM
Joined: 9/12/2013
Posts: 3549


my sense is the board activity slowed when people started using it like social media, taking things personally, forming sides.

Not hard to include statement to newcomers to find what helps, remember we can also learn from what we don't want as much as from what we think we do.

People need to share their stories, this is what will lead research into what really is going on inside of us.


Iris L.
Posted: Tuesday, June 19, 2018 11:25 AM
Joined: 12/15/2011
Posts: 16187


More wisdom from alz+!  Alz+, you have encouraged and supported me in so many ways!  It is an honor and a pleasure to have met you on these pages.  You have induced me to change my focus about what it means to live with dementia.  You are one of my personal life role models, alz+!  I know you won't be gone from the board completely.  I am slowing down also in my posting.  I hope you pop in now and then.  Hug Keeper and hug your dog.  Watch more clouds and collect more rocks.  I will.


        {{{{{{{{ Alz+ }}}}}}}}

 


Iris L.


elainechem
Posted: Tuesday, June 19, 2018 3:21 PM
Joined: 7/30/2013
Posts: 5895


I love you too alz+! You are a bright light on these boards. Check back in when you can. 
Andrew60
Posted: Tuesday, June 19, 2018 8:26 PM
Joined: 7/17/2017
Posts: 342


I will miss your frequent and informative posts, but I fully understand. I will be looking forward to future posts whenever you feel ready and able.
llee08032
Posted: Wednesday, June 20, 2018 6:41 AM
Joined: 5/20/2014
Posts: 4406


I always look forward to reading your posts and have read them all. Your insight and the life you have created around this disease inspires me. I carry you, your words and thoughts in my heart.  Love you (((((((((Alz+)))))))).
Lane Simonian
Posted: Thursday, June 21, 2018 10:07 AM
Joined: 12/12/2011
Posts: 4599


While it may be less often, I look forward to your posts in the future alz+.  I always appreciate it when you share your experiences with medicinal marijuana with others.  You are one of few people uniquely positioned to do so.  I also appreciate how you calmly and respectfully respond to each person's concerns on all sorts of topics.
kbriann
Posted: Thursday, June 21, 2018 11:14 AM
Joined: 6/20/2018
Posts: 1


Thank you for your words of wisdom.  I am 56 and just recently diagnosed with early onset. I am scared.
Michael Ellenbogen
Posted: Thursday, June 21, 2018 1:55 PM
Joined: 11/30/2011
Posts: 2654


II  so understand  what  you mean.  I once in charge of all IT and not could nearly use the computer  or phone. Tho other day I was in dc and tried to order a uber  and  one hour later I had ordered two rides and missed  them bbq oth and of course I was charged. How aggravating.. I finally  just took  a taxi. It cost me so much extra for all of these mistakes.  I so hate traveling alone any more.
Iris L.
Posted: Thursday, June 21, 2018 5:26 PM
Joined: 12/15/2011
Posts: 16187


Welcome, kbriann.  Receiving a diagnosis of early onset Alzheimer's Disease is indeed scary.  But you can learn what to do so hopefully it won't be so scary.  Read several of the threads from patients on this board, and post questions of your own.  We are here to help you.


Michael, there is a service called "Gogograndparent" which you can use from a telephone.  There is a live operator to help connect with Uber or Lyft cars.  No smartphone is needed.  One of the members of my Memory Club uses it, and he is very satisfied with this service.  You might check to see if it is in your area.


Iris L.


Mimi S.
Posted: Thursday, June 21, 2018 7:11 PM
Joined: 11/29/2011
Posts: 7035


Welcome to our world kbriann,

Yes, of course you are scared. 

I'm glad you found us and so sorry for your need to be here.

Do tell us more about yourself.

Do check out on this site, the board for PWD. You might want to skip the boards for caregivers and just stick to the two boards for PWDs.  The ones for Caregivers might be too depressing.  Check your local chapter for support groups and Memory Cafe.Get involved with the chapter.

Several of us on these boards feel that  our adaption of the Best Practices life style has prolonged our stay in the early stage. Do you know about it?

Do read everything you can, but not to the point of frustration. After my diagnosis, I checked out the library. The first book I read was by Tom DiBassio, Losing My Mind. It gave me so much hope. The first lesson in:  DIAGNOSIS OF ALZHEIMER'S IS NOT THE END OF THE WORLD.

 

Just finishing up in DC is the annual Alzheimer's Forum. I attended for several years. For me, the best part was meeting and chatting with so many people with dementia. In those days, there was a tiny identifying mark on our badge. Without that, one could not tell who was and was not diagnosed. it's held yearly and worth trying to attend. We PWD DON'T PAY ANY FEE BUT WE DO HAVE TO PAY OUR LODGING. Sometimes local chapters can help with that.
alz+
Posted: Saturday, June 23, 2018 7:20 AM
Joined: 9/12/2013
Posts: 3549


just read the wonderful comments. what great friends I have here.

made me cry in good way as I am having changes that mean making changes.

Michael - when was last time you enjoyed your boat? go for it!

My slogan now is While I Still Can.

Husband has helped me clean out garage, was going to use waterproofing paint stuff around inside cement block walls today and make it water tight and mouse proof so we could store some stuff out there and use it as a covered porch substitute this summer.

was going to, wished I had, blah blah blah. Husband and I went from almost worst at handling ALZ to some of the best in only 5 years. Ha!

if I had only known then what I know now. oh well. can't wait for the part where I forget we have a basement. sort of true!