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alz+
Posted: Thursday, July 5, 2018 3:09 AM
Joined: 9/12/2013
Posts: 3549


I spent awhile tonight writing about how things are going. It disappeared, error message.

If there are problems with posting the board will dry up.

I can not rewrite and this may not post either but it was about living now instead of in an imagined horror show of the future.


Michael Ellenbogen
Posted: Thursday, July 5, 2018 6:14 AM
Joined: 11/30/2011
Posts: 2680


 I totally understand what you are saying as I recently wrote about this which will be published in a few journals in the next addition. 


Canada111
Posted: Thursday, July 5, 2018 11:02 AM
Joined: 8/22/2016
Posts: 263


I just wrote on my iPhone in response to this, but then pressed cancel instead of post! So here I am writing again. Hope this posts. 

I want to have a voice here as well. Nothing that I say is about imagined horrors of this disease, Alz+. 

  I have Alzheimer’s and in less than 3 years, it’s affected my walking (difficulty walking and balance) , strength (experiencing weakness), speaking and thinking and memory and behavior. I have trouble getting dressed. I have to get dressed by putting clothes on a hanger the night before because it’s simpler. I have trouble taking a shower and washing my hair but I push myself to do it. I can’t follow steps in preparing foods, although I can still make scrambled eggs. My appetite is affected and I forget to eat. Thirst is affected and I have to remind myself to drink water.  This is not imagined. It’s progression but I do the best I can. 

I need support as much as you do. I need friends too. Not condemnation for knowing a lot about this disease. There is nothing imagined and I don’t have hallucinations. My impairments are in executive functioning and performing the instrumental activities of daily living. Yet I am aware and able to write and usually can spell correctly. 

I don’t believe in the stages as I see that aspects of late stage can occur in early or moderate stage. 

You’ve had a lot of support on this forum. I would like support too, not criticism for being able to express how this is affecting me. 

I would like to see this forum active and more inclusive. Lately there have been only a few posts. This disease is no picnic. You know that. Weeks ago your post read “bra on backwards and having fun”. That’s funny. Wish I could be funny too. People seem to want to be humored here. I do appreciate the humor. I would appreciate understanding. Thank you. 


dolor
Posted: Thursday, July 5, 2018 11:14 AM
Joined: 11/9/2017
Posts: 308


Canada,

I hope you are not living alone and have people to support you. 

I didn't see any neat progession stage by stage either. Was even more puzzled when I saw lower case letters attached to the stage numbers. And the numbers of stages seem to increase. 

And there is the issue of misdiagnosis. How many other dementias get lumped into Alz and then mis-medicated? 

One must always second and triple etc. guess ones medical "team."


alz+
Posted: Thursday, July 5, 2018 5:54 PM
Joined: 9/12/2013
Posts: 3549


Yes on sometimes able to go back and find written stuff but it was erased this time. 

Canada - I apologize if my suggestions are out of line. I understand you are having a very difficult time and can not do the things you want. That you feel unable to express yourself and be understood here troubles me.  Maybe some time you could post about things that would help and things that don't in regard to the suffering you are going through?

I went to confession Sunday and described something with a loud swear word. Then stunned, I exclaimed "I can't believe I just said _____ in church!" repeating the swear word. The priest knows my condition has progressed but it was humiliating.

 NOTE: on facebook ALZ patient pages there are trolls now, and scammers. It is a thing apparently trending to hack personal info of people who announce they have dementia.

share what works, and what does not. help each other. 


Canada111
Posted: Thursday, July 5, 2018 11:44 PM
Joined: 8/22/2016
Posts: 263


How do we help each other? By not closing the door to communication. By keeping this forum active. 

By accepting where we are in this dreadful disease. 

Some of us have lost more grey matter than others. Some have more frontal lobe loss leading to much more depression and overt apathy. Some are disoriented and can’t find their way around. Some have hallucinations and sometimes do not know who they are or who others are. 

I literally have to push myself off the couch to walk. I have to put my clothes on a hanger to be able to get dressed. I’ve been disinhibited and curse and have had outbursts. 

Alz+ you said _______ in church. In Alzheimer’s many lose their filter. Your lucky your priest is understanding.  

The validation method of Naomi Feil has been touted about here. I submit it’s not only for caregivers and late stage. Validation should be practiced by those who have dementia with others who are in the earlier stages on the younger onset forum.

 I was once told that the best part of learning is listening. There’s no cure for this disease, but we can still learn to listen. 

 


Canada111
Posted: Friday, July 6, 2018 12:12 AM
Joined: 8/22/2016
Posts: 263


dolor, thanks for responding to my post. No I do not live alone, however my husband works and he’s my carepartner. So it’s not easy for me. I was a fairly brilliant person, a working professor and filmmaker up until a year and a half ago. I had to resign. I was diagnosed with Alzheimer’s at a top NYC teaching hospital and a famous neurologist with an FDG PET CT. He told me over the phone that I had the pattern of Alzheimer’s - hypometabolism of my temporal and parietal lobes. It’s likely my frontal lobes are affected now. Many symptoms indicate this. I find it interesting that I can still use a computer and iPhone and I write well, but have trouble dressing myself, issues with walking, balance, swallowing, memory and orientation.
Gig Harbor
Posted: Friday, July 6, 2018 11:15 PM
Joined: 3/10/2016
Posts: 591


You write very well. I love your blog and also your artwork. My husband is the one with AD. He is your opposite. He can dress easily and walk without difficulty but has zero memory and could never write the way you do. You have given me insights for what it is like to have this horrible disease and for that I thank you. I hope you are able to write for a long time. I live in a small town on the west coast and I especially love your descriptions of New York City. Prayers and hugs.

 


llee08032
Posted: Sunday, July 8, 2018 8:10 AM
Joined: 5/20/2014
Posts: 4406


Canada wrote: The validation method of Naomi Feil has been touted about here. I submit it’s not only for caregivers and late stage. Validation should be practiced by those who have dementia with others who are in the earlier stages on the younger onset forum.

I'm sorry but I think that's a high expectation to put on others here on the board. Persons who may appear to be doing better are here for support also. This is not a mental health club or a professional support forum and were not here to practice therapy on anyone.

Nevertheless, PWD DO get validated on this board all the time.

Now's the time for all those who have complained about this board to pick up the ball and keep it going. Change it to what you want it to be. Make it better. I'm tired. Tired of trying here only to get kicked in the back. Nothing is ever good enough. 


Canada111
Posted: Sunday, July 8, 2018 9:16 PM
Joined: 8/22/2016
Posts: 263


Gig Harbor, Just checked in here and see that you've responded to me. Thanks for reading my blog and for following my stories in NYC. You say your husband can dress easily, but has zero memory. Does he remember where he keeps his clothes? How does his zero memory manifest itself?
Canada111
Posted: Sunday, July 8, 2018 9:23 PM
Joined: 8/22/2016
Posts: 263


Ilee, I want to clarify that my post was not directed at you. You have been active here and have always offered the best of yourself. You are one of the main people who have kept things going here. 



Gig Harbor
Posted: Monday, July 9, 2018 7:11 PM
Joined: 3/10/2016
Posts: 591


Canada 111 my husband's memory loss is most noticeable for events. He can't remember our plans for more that a few minutes. He is forgetting all our past trips. He is having trouble remembering garbage cans vs yard waste can vs recycle can. He totally remembers how to dress and where his clothes are. He could never describe where he had gone for a day nor what he saw let alone do it as eloquently as you do. AD is such a strange and tragic disease. The path is different for each person as is the rate of progression. Some diseases like ALS almost follow a blueprint. I don't know what is worse. That being said I hope you are able to keep writing for a long time and also keep adding the illustrations.
Amor Fati
Posted: Tuesday, July 10, 2018 7:04 PM
Joined: 1/9/2016
Posts: 66


Canada111 wrote:

I just wrote on my iPhone in response to this, but then pressed cancel instead of post! So here I am writing again. Hope this posts. 

I want to have a voice here as well. Nothing that I say is about imagined horrors of this disease, Alz+. 

  I have Alzheimer’s and in less than 3 years, it’s affected my walking (difficulty walking and balance) , strength (experiencing weakness), speaking and thinking and memory and behavior. I have trouble getting dressed. I have to get dressed by putting clothes on a hanger the night before because it’s simpler. I have trouble taking a shower and washing my hair but I push myself to do it. I can’t follow steps in preparing foods, although I can still make scrambled eggs. My appetite is affected and I forget to eat. Thirst is affected and I have to remind myself to drink water.  This is not imagined. It’s progression but I do the best I can. 

I need support as much as you do. I need friends too. Not condemnation for knowing a lot about this disease. There is nothing imagined and I don’t have hallucinations. My impairments are in executive functioning and performing the instrumental activities of daily living. Yet I am aware and able to write and usually can spell correctly. 

I don’t believe in the stages as I see that aspects of late stage can occur in early or moderate stage. 

You’ve had a lot of support on this forum. I would like support too, not criticism for being able to express how this is affecting me. 

I would like to see this forum active and more inclusive. Lately there have been only a few posts. This disease is no picnic. You know that. Weeks ago your post read “bra on backwards and having fun”. That’s funny. Wish I could be funny too. People seem to want to be humored here. I do appreciate the humor. I would appreciate understanding. Thank you. 

Hi Canada, I can so relate to your post. We are five years post diagnosis, but symptoms have been apparent for 10 years prior. My husband now has difficulty walking also, using a cane and becoming more hunched over. He has become more withdrawn. His digestion has slowed down, he can no longer digest meats or most vegetables. We are basically doing a soft diet now. Yes, the changes are real, and our world is shrinking fast. We are lucky that we are both retired, so we can face each day together. 

I am trying to remember the stages of grieving, as outlined by Kübler-Ross in her books. I think the first one is anger. We were both very angry after the diagnosis, felt cheated and afraid. Then there was denial. We decided to just ignore the whole thing and pretend it was not happening. Then came depression. My beloved was very suicidal, he was determined not to live this thing to the end. Then came acceptance. We faced the facts, decided to make the best of every day. So what I am trying to say is that maybe we are all in different stages of grief in this illness and doing the best to cope. And we all vascillate between the stages at any time. 
We all deserve support, compassion and empathy. This is a tough, bumpy road and we need the support of a village. The best to you and your husband. My hat is off to you, I admire how you live with these challenges. May you find the support you seek.  Namaste.

 

 

 

 

Mimi S.
Posted: Tuesday, July 10, 2018 7:46 PM
Joined: 11/29/2011
Posts: 7035


HI AMOUR,

HAVE YO TRIED PHYSICAL THERAPY?
Amor Fati
Posted: Wednesday, July 11, 2018 8:57 AM
Joined: 1/9/2016
Posts: 66


Mimi, my husband refused physical therapy. He has a lifelong history of back problems, three back surgeries and now is in constant pain, which is managed with pain medications. 

Canada, I just read your blog. What wonderful insights! Thank you for sharing your life with your readers. It is a wonderful gift you are giving us all. 


Larrytherunner
Posted: Thursday, July 12, 2018 9:49 AM
Joined: 2/26/2016
Posts: 187


Alz+, sorry to hear that you sometimes lose your posts, which can be quite frustrating, especially if you have a long one. This happened to me a number of times when I first started posting about two years ago, using my android phone. Here is how you can solve this problem:

 

1. Write your post on your notepad and save. If your number of characters limit is too low to contain the entire post, you can always download a better notepad.

 

2. Share the post to your clipboard.

 

3. Go to Alzconnected and press on the spot that you want the message to begin. The paste symbol should show up. My keyboard has a clipboard key that I use to paste the post. If you don't have this feature on your keyboard, then I hope you can see how you can paste the post, or someone can show you. It should be something simple.

 

If you lose the post, just go back to the notepad and share the post to the clipboard again and paste. Reposting only takes a few minutes. An added bonus is that you have all your posts recorded in your notepad for future reference. 


alz+
Posted: Thursday, July 12, 2018 9:56 AM
Joined: 9/12/2013
Posts: 3549


amor fati - deep breath, big tears. thank you for providing the love balm to this board.

I am having incredibly strange days and was feeling like this place of refuge for me for 4 years ? since diagnosis, was becoming lost again.

Read your posts and my heart broke open a little. It had closed into a cement ball from ... stuff... and I did not want to write anything etc etc etc and there were your words.

thank you all who are rising to the perpetual re-creation of this support group boards. each comes, learns, shares, and inevitably departs in such a short amount of time! I miss so many who have had to leave, and now I find internet "friends" too complicated, the anxiety too great to endure.

having a Good Cry. love and courage to everyone


Amor Fati
Posted: Thursday, July 12, 2018 11:41 PM
Joined: 1/9/2016
Posts: 66


alz+ wrote:

amor fati - deep breath, big tears. thank you for providing the love balm to this board.

I am having incredibly strange days and was feeling like this place of refuge for me for 4 years ? since diagnosis, was becoming lost again.

Read your posts and my heart broke open a little. It had closed into a cement ball from ... stuff... and I did not want to write anything etc etc etc and there were your words.

thank you all who are rising to the perpetual re-creation of this support group boards. each comes, learns, shares, and inevitably departs in such a short amount of time! I miss so many who have had to leave, and now I find internet "friends" too complicated, the anxiety too great to endure.

having a Good Cry. love and courage to everyone

Second try, lost my last post.
Dear Alz+, I am so glad you found your way back here. You made a wonderful statement a while ago, “No matter how often you quit these boards, you can always come back.” Thank you for loving so unconditionally. Sorry you had such a rough time lately. This journey sure has its ups and downs. All we can do is hold each other up, offer a shoulder to cry on and carry on. Much love to you. Take good care of yourself.