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note to recently diagnosed or new to boards
alz+
Posted: Sunday, July 26, 2015 9:06 AM
Joined: 9/12/2013
Posts: 3608


If you are decently diagnosed or new to board even though you may find many discussions currently about the larger view of dementia experience, care and trying to figure out how things work from our perspective, this is an important place for you to post your concerns!


If we have fewer things in our lives that we can do, we can support you as you learn how to live well with dementia. You in your own way will support others, this is our continuity.

Your story matters. Your life is important. This board is here for you, to help you, not just for the discussion of agendas and theory.

much love, have courage


Mimi S.
Posted: Sunday, July 26, 2015 9:58 AM
Joined: 11/29/2011
Posts: 7027


There is a great book, in my opinion, worth the small price: Living Your Best with Early Stage Alzheimer's by Lisa
Snyder.

Also from your library, look for On Pluto by Greg O'Brien.

I'm currently reading: Alzheimer's From the Inside Out by Richard Taylor.

The last two are written by persons currently living with dementia.

Each will most likely have things that you are also experiencing.

Both are examples of men who are sharing their experiences with the disease. There is a long list of books authored by such folks.

The one I read immediately after diagnosis was Losing My Mind by Tom Di Basio. by the time I read it he had written two books. He has since died, but I thought: if he is diagnosed with AD and has written two books, there is hope after diagnosis.

A wrist band always on my arm reads: A REASON FOR HOPE. Your local Aliz. Assoc. should have one for you.

Do come to either or both this board and the I Have Alzheimer's board for support. Also ask your local chapter about support groups in your area.

I live in a rural area and few in this area are diagnosed at an Early Stage and fewer are interested in support groups. So it was a wonderful experience when three of us so diagnosed met at an Alz. Assoc. event. We clung to each other and exchanged views until they kicked us out.

ClaudiaTBN
Posted: Sunday, July 26, 2015 10:24 AM
Joined: 3/8/2015
Posts: 4


I am trying to find people to converse with but can't seem to find out how that is done. I have tried to send messages on the boards but have had no luck. After sending messages on the boards the only thing that happens is that I get a message saying your message is sent. I have noticed that the messages on the board say, "you and so and so have something in common" but can't seem to find out what that is. Is there anyone who can help me? My name is Claudia Nunner and I do not care if my name is used here.


Blue Rose
Posted: Sunday, July 26, 2015 10:30 AM
Joined: 7/16/2015
Posts: 9


I am also having problems connecting with people. Must be doing something wrong.
llee08032
Posted: Sunday, July 26, 2015 11:33 AM
Joined: 5/20/2014
Posts: 4408


Dear Claudia and Blue Rose, welcome to the patient board for persons with young onset dementia. To connect with others go to the message board of your choice and then click on add topic and post whatever you like, how your feeling or questions you may have. You can simply say 'hello' if you like. Others will respond to your posts!
alz+
Posted: Sunday, July 26, 2015 12:38 PM
Joined: 9/12/2013
Posts: 3608


Hi Claudia and Blue Rose -

if you mean sending a private message, to one person in particular - ha! I will try to do it now so I can tell you in a minute.

every darn thing is different every day!

Michael and Llee know how but I'll give it a go now.

Mimi - yes! to meet a live person face to face, I have talked to strangers in stores when I saw the eyes, even that has been so enlivening! Thanks for sharing that.


alz+
Posted: Sunday, July 26, 2015 1:00 PM
Joined: 9/12/2013
Posts: 3608


First you have to invite someone to connect with you, they reply. I get email notifications.

Your CONNECTIONS can be found by clicking "connections" in purple line of message board. You can only send private messages to people who have accepted your invitation, or who you accepted this invitation.

*************************************

You invited me as a friend, I accepted, so your name now appears in my SEARCH CONTACTS.

here is how to send a private message:

1. start at INBOX - click "INBOX"

on right side you see a BLUE box "COMPOSE"

2. click COMPOSE

a message form appears with a "TO: blank space "-

BELOW that written in BLUE you find "BROWSE CONNECTIONS"

3. CLICK on "BROWSE CONNECTION"

4. if you can remember the name (AVATAR) of person you want to message type that in the search space

That person's AVATAR / NAME should appear

5. CHECK the tiny box in front of their name/avatar

6. Type your message into large white box.

7. Click green "SEND"

BINGO, you sent a private message.

when you see a message indicated by a number next to INBOX icon click there to read your private messages.




alz+
Posted: Sunday, July 26, 2015 1:05 PM
Joined: 9/12/2013
Posts: 3608


Blue Rose wrote:
I am also having problems connecting with people. Must be doing something wrong.


I sent you an "invitation" which should appear in your email box or maybe at top of page you will see a note next to the word "inbox" next to "message boards"

instructions are in post above. If you accept my invitation to connect I will send you a message and you will see a mark by the word inbox to right of message board.

Reading messages sent to you is easier, to reply just click reply, write your message, and then click send

you do not have to accept an invitation.

Now because you both asked how to do this we have my complicated instructions so other people can be confused by my complicated instructions! Seriously you just helped 200 other people by posting the question.

lots of love and have courage!


GwenD
Posted: Sunday, July 26, 2015 5:02 PM
Joined: 11/27/2014
Posts: 88


Alz+,

Thanks for very good directions.

Claudia,

I just sent a message to you.



alz+
Posted: Tuesday, July 28, 2015 11:38 AM
Joined: 9/12/2013
Posts: 3608


Gwen I don't think I got your message - maybe I did and deleted after reading it? If I did not respond try me again.

I do not think my directions are very simple and if anyone can improve on them please do!

I was surprised how difficult it was to even understand how one does post comments, make connections, the invitation aspect, how to type in some one's name, remember their name/avatar, what was it? 7 steps or more?

Not being technically adept ever, now it is confounding! a list might help ... keep it by computer?


The_Sun_Still_Rises
Posted: Wednesday, July 29, 2015 8:54 AM
Joined: 7/24/2015
Posts: 3020


I am new to the boards and just wanted to say, "hi" to everyone here. I was recently diagnosed with dementia, however, have been struggling with it for many years. While waiting for my registration to go thru, I read many of your posts and wanted to share what an inspiration you have been. Because of this board, I have learned that socializing is very important to keeping our minds going...I am sort of isolated (mostly just have those that work with me), so this is my first attempt at reaching out.

Thanks


llee08032
Posted: Wednesday, July 29, 2015 8:57 PM
Joined: 5/20/2014
Posts: 4408


Welcome Sun! I can relate to the years before the diagnosis and the struggle. I am glad that you enjoyed reading some of our posts. We tend to get quite philosophical at times. Please feel free to start your own thread about whatever you like. Perhaps you may have questions or need a shoulder to lean on. That's what we are here for and you don't have to deal with what you may be going through on your own. A newly diagnosed person is the most important person on the board. So please make yourself cozy and prepare to be welcomed by some very nice folks!
GwenD
Posted: Thursday, July 30, 2015 12:28 AM
Joined: 11/27/2014
Posts: 88


Hello Sun looking forward to your story, when you are ready!
alz+
Posted: Thursday, July 30, 2015 11:56 AM
Joined: 9/12/2013
Posts: 3608


SUN!

good for us you decided to join board activities!

Look forward to your thoughts on life with dementia. Makes me feel better when new people join our conversations.



Paul Hornback
Posted: Thursday, July 30, 2015 2:16 PM
Joined: 8/9/2013
Posts: 584


Sun, welcome to the message boards! Its great that you've joined us here. I hope you find encouragement and support for your journey. We have some great folks that have lots of good advice. I hope you will share more with us about your story.

God bless, Paul


Mimi S.
Posted: Thursday, July 30, 2015 3:34 PM
Joined: 11/29/2011
Posts: 7027


Hi and Welcome Sun Still Rises.

Yes, Socialization is very important. It's one of 5 Best Practices that seem to be enabling several of us on these boards to very much slow down the progression of the disease.
"There are other things you can do to help slow down the course of this disease, including:


(1) Sticking as closely as you can to a Mediterranean diet (with wine and nuts), which has been shown to help prevent/delay the onset of AD, and also slow its progression. See:


http://alzheimers.infopop.cc/e...=124104521#124104521


http://alzheimers.boomja.com/A...ean-Diet-231673.html


Basically, it involves:

- High intake of vegetables, legumes, fruits, and cereals

- High intake of unsaturated fatty acids (mostly in the form of olive oil)

- Low intake of saturated fatty acids

- Moderately high intake of fish

- Low-to-moderate intake of dairy products (mostly cheese or yogurt)

- Low intake of meat and poultry

- A regular but moderate amount of ethanol, primarily in the form of wine and generally during meal


To that, I would add eating a quarter cup of nuts every day -- quite a few studies have found they're very good for you.


Also, olive oil is very good for salad dressings etc, but not so much so for cooking especially at higher temps. Use canola oil for that, or a mix of the two. (I've seen plenty of products that contain olive and canola oils.)


Avoid hydrogenated fats and trans fats like the plague.


No smoking. I also take Omega 3 and antioxidants.


(2) Lots of physical exercise ... there is quite a bit of evidence it can help prevent/delay onset.


(3) Lots of exercise for the brain -- activities that involve learning something new. I've seen some reports that learning new things coupled with using a computer can be particularly helpful. And in the just concluded Research Meeting a push for strenuous physical activity. You've got to get that heart beating faster than normal for awhile. It also is shown to foster growth of new cells.


(4) Socialization, doing things with friends and family.


(5) Plenty of rest.


Take meds as directed.



Mimi S.
Posted: Thursday, July 30, 2015 3:49 PM
Joined: 11/29/2011
Posts: 7027


An additional thought. Reading, or if that is beyond what you can do, listening to Books on Tape.

I'm currently reading a book by someone with Alzheimer's:
Alzheimers From the Inside Out by Richard Taylor.

I am finding it very difficult to read.

However, today as I was reading it, I found a passage where he tells us that the book is not to be read as a whole. It is written as a series of essays. Perhaps just one or two a day is the way to do it. As I was reading it, I was shaking my head thinking: that's not what he said a few pages back.

Perhaps he has caught me. Consistency is not the name of my game. I write books, not on Dementia, but do research and write about the Rural Schools of Yesteryear in my county. Those checking my books are always commenting on my lack of consistency. It's because I can't remember today how I worded something (or felt about something) yesterday.

Alz+ wrote and others agreed that they can suffer from lethargy. He also has commented on this in himself. Guess it's something we have to fight against when we recognize it.

The book should not be considered a "how to" book. It is a collection of essays on what he's doing and thinking at a particular point in time. As such, it can help those of the disease realize that others are feeling just like we are. For caregivers, it might help understand our actions a bit better.

Has any one else read the book? What are your reactions?

alz+
Posted: Thursday, July 30, 2015 9:02 PM
Joined: 9/12/2013
Posts: 3608


I only heard of him recently - Al Power wrote about him after he died.

Loved what he was saying, very straightforward - will put in in my next order or get from library.

Holding long thoughts is harder all the time for me too. I want to work on my writing but it is so much easier to post here! Instant feedback helps.

Welcome again to all the new people! I am NOT trying to be the hostess, but I get lonely and find the boards feel like real friends.

We need more people with different experiences and ideas.

Truly all are welcome.


ffwife54
Posted: Friday, July 31, 2015 1:29 PM
Joined: 4/15/2012
Posts: 247


Hi everyone, I'm still here. I've been traveling quite a bit spending time with my kids and grandaughter, I have a series of tests, MRI and LP coming up early Sept as part of my participation in the Alz Research Project in my state. 3 years ago i was border line MCI. Which they said was due to depression. Iris and i used to discuss this topic all the time ( I miss IRIS and hope she is ok?) Anyway, i have declined in the past three years and people around me are taking notice so my life is changing.......

alz+
Posted: Friday, July 31, 2015 10:45 PM
Joined: 9/12/2013
Posts: 3608


Glad you are back with us and lucky you get to visit daughter and grandchild!

Iris left the boards and as far as I know she just needed a break when her symptoms began changing. She is missed by everyone!

I was part of a study in Madison and was dropped when I was diagnosed. From what I understand the disease process can go very slowly and people may live with it for 20 years. Others have a rapid decline. Probably the more is learned about the changes there will be different types discovered which account for rapid or slow progression.

Reduce stress, (! Iris taught me it was possible to do this and to recover quickly from overwhelming situations as being stressed out can reduce cognitive abilities by 50%). That helps me cope. I estimate my first signs were 10 years ago but I managed around them really well considering I ended up being treated for depression /anxiety and PTSD through the mental health system until I was diagnosed.

I have found days when I am not functioning well are just "days of not functioning well", not there permanently. I avoid panic, no longer drive, handed over financial stuff to my son, and trust in my husband to keep me fairly safe and fed. The lower the pressure of responsibility the better my life.

Do not underestimate the power of adapting to changes. When we know better, we do better. I find taking a longer wider view of things helps me keep living pretty happily. I give myself permission to do whatever it takes to have a good day every day, and if I have a confused day, or am upset I allow that to happen and start each day fresh. So far this has made the "decline" not so bad.

Hope you post more soon, need everyone's input who is willing to share.

love and courage


llee08032
Posted: Saturday, August 1, 2015 8:21 AM
Joined: 5/20/2014
Posts: 4408


It's good to see you back ffwife. I hope you had the best of times with those grandchildren! I am sorry to hear about your decline. Good luck in the research project.
The_Sun_Still_Rises
Posted: Sunday, August 2, 2015 12:17 AM
Joined: 7/24/2015
Posts: 3020


Thanks everyone for the warm welcome. (I finally found the thread, yea!)

My story is pretty simple. My kids are grown and I care for my elderly mother so she can stay at home (it was the only thing she ever asked for). Recently, my youngest daughter, and 8 months brand new granddaughter, came to stay with me so I can stay at home too (I'm my mom's youngest as well). No one in my family has dementia as far as I know...I'm the first.

Six and a half years ago I became sick (with what exactly, no one knows (yet)) and my brain function started getting worse as well. It is hard for me to separate things because my physical health was the more prominent aspect as well as what the doctors focused on, and even though I was telling them about the brain stuff it was pretty much ignored.

What gets me now (reflections of a newly diagnosed person), is that now that I am diagnosed and start looking into it do I realize that I have been showing classic signs of significant cognitive impairment for years (I knew I was bad, but not that bad), signs that the medical people I have seen and who have worked with me over the years have noticed and commented on (like PT, OT, ILS), and yet no one suggested I get help, or be tested, until just recently. There were just so many opportunities. Instead, the general reaction had been to minimize it or negate it...I love when my doctor calls it brain fog, all I can say is I only wish it was just brain fog. Even when I told her I could no longer remember where my clothes are...but then again, how would they have told me?

It has been progressive, so I think it is fair to suspect that it will remain so and start putting more adaptations in place.

My life is pretty limited, however, I think I have found ways to function independently, or at least appear to be functioning much longer than I should have been for where I am. Aside from my daughter (who is also busy with her own child and who is taking some time to get up to speed) I do not have any support besides the professionals who work with me...so I am on my own. Plus, I am the one everyone else looks to to tell them what to do.

I struggle with every task now, I get lost in my home...trying to get things done and not being able to figure it out, or just not being sure...it says "2" and there is 2, but is it really 2?...it is all quite stressful. Reading the books about people taking these duties off their loved one's hands, I think what a relief it will be to no longer have to stress trying to do these things that I really cannot do anyways. I want to do them though.

On the flip side, sometimes the sky is just so blue...and the wind so perfect...and my granddaughter so snuggly. I am not sure what I lost to gain the greater level of enjoyment of just life, but it sure is beautiful.

Sorry if I rambled...nice to meet you all.


Lisa428
Posted: Sunday, August 2, 2015 12:57 AM
Joined: 12/5/2011
Posts: 795


Dear The Sun Still rises,

Welcome to the AD/Related Dementia's Message Boards. I am so glad you've found us.

Please, find a doctor who will listen to you and one who specializes in AD/related dementia's

I saw four doctors before I believed my diagnosis of EOAD/Young Onset AD.

We have a toll free 24/7 Helpline @800-272-3900. There is always someone there to speak with of get some advice.

Please, take care of yourself. Post as often as you'd like.

We're here to listen and help.

Good Luck.

Peace and Hope,

Lisa


Lisa428
Posted: Sunday, August 2, 2015 1:09 AM
Joined: 12/5/2011
Posts: 795


Dear ClaudiaTBN,

Hello and Welcome to the AD/Related dementia's board. I am sorry for what brings you here but I am glad you've found us.

The Message Boards have recently been re-worked so we still have to work out the kinks (I call them gremlins). LOL

I am sorry you are having difficulty. You have been given some good advice. I hope it helps you.

We have a toll free 24/7 Helpline @800-272-3900 if you need additional help.

Take care. Please, keep in touch!

Peace and Hope,

Lisa




llee08032
Posted: Sunday, August 2, 2015 9:31 AM
Joined: 5/20/2014
Posts: 4408


Sun.

It seems you have many responsibilities and need some help and support for yourself.
There are several times during the week when I can't find my under garments. Your family members need to learn about your cognitive limitations and how to support you now and in the future. They also can call the 1-800-272-3900 Helpline to get information and support.

There were just so many opportunities. Instead, the general reaction had been to minimize it or negate it...I love when my doctor calls it brain fog, all I can say is I only wish it was just brain fog. Even when I told her I could no longer remember where my clothes are...but then again, how would they have told me?

I hope by now you are seeing a Dr who specializes in dementia care and cognitive impairment. What happened to you with your symptoms being minimized and negated unfortunately, has happened to others also. Not all Dr's are trained or able to recognize signs and symptoms of cognitive impairment.


On the flip side, sometimes the sky is just so blue...and the wind so perfect...and my granddaughter so snuggly. I am not sure what I lost to gain the greater level of enjoyment of just life, but it sure is beautiful.

That is true that life is beautiful and can still be beautiful with dementia and cognitive impairment. You are a step ahead in being able to recognize the beauty around us!

I'm glad you found your way back to this thread. Please let us know what problems you are experiencing in navigating the board so we can help?


alz+
Posted: Sunday, August 2, 2015 12:06 PM
Joined: 9/12/2013
Posts: 3608


Sun -

thank you for sharing your personal experience in getting diagnosed, and life before and after dx.

I relate to you having physical problems and having the cognitive problems minimized. Had very similar scenario. I ended up treating my own physical issues without doctors.

Hope you find people to help you out - when we do not have to negotiate issues at home, big cleaning, cooking, what ever is hard to do and sucks our brain's fuel for the day, you may find your cognition distress improves.

In current situation in our country families are often split up, support system kind of torn apart, people needing to move for a job, stay for a job, so your situation will resonate with many others who read your story.

All I can add is to open your heart to unexpected goodness and help - once we take pressure of family or who we thought "ought to" come, others step forward.

Please know there is immense support on these boards. I would never have believed I could find so much comfort, information, support and love online.

love and courage


The_Sun_Still_Rises
Posted: Monday, August 3, 2015 4:09 PM
Joined: 7/24/2015
Posts: 3020


Thanks everyone,

I actually printed your words, Alz+ and hung them on my wall about when you are having a bad day, just letting it be a bad day...where you are, is where I am trying to get to.

My youngest is young still, and a new mom. She wants to help, but still needs my help. I figure it will still be awhile before she can manage finances and everything...we are working towards that. I look forward to when that time comes, because it is unbelievably (well, you all probably live it so you know) stressful.

My new doctor is not probably all that savvy on dementia.

It is nice to know that there is life after diagnosis.