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Where is everyone?
Lane Simonian
Posted: Tuesday, January 27, 2015 1:36 PM
Joined: 12/12/2011
Posts: 4527


I now know the answer for many people and in most cases it has to do with aggravation and frustration over changes in Alzconnected. I am not sure what has improved (except for chat which I don't use), but from either my own experience or from reading posts, I know the existing problems (although some have been corrected or are in the process of being corrected).

I miss the people who cannot get back. Myriam, for instance, used to post all the important studies on dementia on the clinical trial board. I try to follow the studies, too, but I would often miss them. Myriam's posts always made me look more closely at current research. Since Myriam's been gone that forum has tailed off significantly.

I think another problem is that only two forums are being shown on the home page and the posts sometime stay there for a long time. It would be better to go back to showing the most recent posts no matter which forum they came from.

I suppose more than anything, I miss old friends.

Iris L.
Posted: Wednesday, January 28, 2015 1:25 AM
Joined: 12/15/2011
Posts: 16084


When I use Chrome, I am taken directly to the dashboard, so I don't see that introductory page. There used to be a "browse" function. At least, members who were having trouble logging on could get in by browsing and discover what the solution was for their technical issue. Now, they can't even get in.

Myriam posted on the Younger Onset board. She is frustrated by the difficulties of the new board, too. She said she'll check back in a couple of weeks.

THERE IS NO OTHER BOARD LIKE THIS ONE FOR PATIENTS WITH DEMENTIA! WHERE WILL THEY GO FOR THEIR SUPPORT? THEY ARE STRANDED!

Iris L.

Lane Simonian
Posted: Wednesday, January 28, 2015 9:42 AM
Joined: 12/12/2011
Posts: 4527


I was pleased to see, Myriam's post last night. When (if), they get this all sorted out she will likely be back.

I use chrome, too, and was frustrated that I could not see the posts without signing in, but there is a two step way around it: click on one of the two forums shown (Caregiver's Forum or I Have Alzheimer's) and then click on message board. That way you don't have to sign in every time to look at the message board. Why they took away the browser function is something I don't understand.

I completely agree, Iris. This site is critical for everyone, but especially for those with dementia. Driving away people by making the site harder to use (or in some cases almost impossible to use depending on the browser) is hurting many people.



llee08032
Posted: Saturday, February 7, 2015 7:55 AM
Joined: 5/20/2014
Posts: 4406


Is it me or is the font smaller? I saw something on the young onset board and it appears the all the updates and changes that were going to be made are complete. .
Iris L.
Posted: Saturday, February 7, 2015 10:02 AM
Joined: 12/15/2011
Posts: 16084


The font seems the same size. But I cannot use the BOLD feature in IE.

Iris L.


ffwife54@yahoo.com
Posted: Saturday, February 14, 2015 6:35 PM
Joined: 4/15/2012
Posts: 247


I'm still here. I think there are only a handful of us that can still navigate and use the internet and this site. Me I cannot come here often as my anxiety level soars every time I do. don't get me wrong, I feel the support when i do post but regret the moderators jumping in when they want. This makes me feel like our conversations are being monitored and real feeling cannot be shared.



Mimi S.
Posted: Saturday, February 14, 2015 6:57 PM
Joined: 11/29/2011
Posts: 7036


F. F. Wife,

I'm sorry you feel that the Moderators are jumping in when they want. It is true, they have jumped in. There are guidelines to be observed and when these are violated, steps are taken.

For example, the other day someone was on almost, if not all the boards, simply asking for money to help him care for his loved one. Wouldn't all caregivers appreciate some money to help out. However, soliciting funds goes against the guide lines and so those posts have been removed.

In addition, those of s suffering from the disease often times are not capabler of good judgement. So the Administrators are vigilant watching for those folks who might take advantage of our poor thinking skills.

I'm so glad you're back, but I wonder why your anxiety levels increase by being on here.

Iris L.
Posted: Saturday, February 14, 2015 9:28 PM
Joined: 12/15/2011
Posts: 16084


Welcome back, FFwife. I doubt that the moderators read each post. Possibly someone reported your post as being a cry for help. I don't know.

In any case, IMO, this is the best place for us patients to get and to give support to people like ourselves.

How are YOU doing? Did you use the Exelon patch?

Iris L

ffwife54@yahoo.com
Posted: Wednesday, February 18, 2015 5:35 PM
Joined: 4/15/2012
Posts: 247


IRIS,

The Excelon patch didnt work...........only 1/2 a patch and lots of diarrhea and gut pain, which stinks because noticed a difference a sense of clarity of you will.

Next was the aricept this was even worse so I'm back to square one,


Thanks for asking

Iris L.
Posted: Wednesday, February 18, 2015 7:18 PM
Joined: 12/15/2011
Posts: 16084


FFwife, I am SO sorry that the Exelon patch and the Aricept did not work for you. The patch has done me a world of good.

There still is available a trial of Namenda. I noticed even more improvement when I began Namenda almost 6 years ago.

Iris L.

Mimi S.
Posted: Thursday, February 19, 2015 11:58 AM
Joined: 11/29/2011
Posts: 7036


FFWife. I also had GI issues with Aricept and another med I'm taking for another neurological condition. Have you tried a lactose free diet? It's not that hard. For me, a cereal eater, switching to Almond Milk or any of the other non-dairy milks did the trick. For cheese, I get goat or other non-cow cheeses.

Since most of my cooking is done for scratch, it is fairly easy. Reading labels becomes routine. For example, almost all tomato pasta sauces have cheese.

I know it works. Last year I visited a daughter. She gets the right milk for me. The first morning, I got breakfast and about an hour later had the runs, bad. I thought I must have eaten something on the trip out, but realized I had brought all my food with me. Then next morning, I went to use "my" milk, the container had not been opened. I realized why I got the runs. In a sense, I was glad it happened. I'd been wondering if I could go back to regular milk.

Well, I got the answer to that.

The meds are important if your doctor feels that you are progressing and moving into early stage from MCI.

If you try the lactose free for a month and side-effects continue, they are others that can be given

ClaudiaTBN
Posted: Sunday, March 22, 2015 5:16 PM
Joined: 3/8/2015
Posts: 4


I am new to this message board and have been quite confused about how it works. I have been exploring but it seems difficult to navigate. I would like to meet others but seem to get lost. I would appreciate any help.
Paul Hornback
Posted: Sunday, March 22, 2015 6:26 PM
Joined: 8/9/2013
Posts: 584


Claudia, I'm no expert on the board. I just try to comment on people's posts and that is how I communicate with them.

I think you can also message folks using the inbox section if you just want to have private conversations.

I prefer just using the message boards and either create a new post or just comment on other people's posts.

Maybe someone else could jump in here and give you better advice.

God Bless, Paul


Mimi S.
Posted: Sunday, March 22, 2015 7:10 PM
Joined: 11/29/2011
Posts: 7036


Hi Claudia,
Welcome to our world.

Do tell us something about yourself?

Do tell us about your dementia journey.

ClaudiaTBN
Posted: Sunday, March 22, 2015 9:48 PM
Joined: 3/8/2015
Posts: 4


Thanks Paul!


Hi. Mimi S.

I was diagnosed in August of last year with early onset. I am 57. I live in Ohio and have 3 children, a husband and 2 cats. I was last employed last year but had to quit due to my condition.

I am interested in connecting with others and learning all i can......... especially learning how to navigate this site!!!

Thanks for listening!!

Iris L.
Posted: Monday, March 23, 2015 12:53 AM
Joined: 12/15/2011
Posts: 16084


Welcome to our online support group, Claudia. I am sorry that you have to be here, but I'm glad you found us.

To begin your own thread, click on the green tab, "Add Topic" on the upper right of the main "I Have Alzheimer's" site or the "Younger Onset Alzheimer's" site. You will have an area to write a Subject, and then a larger area to write what you want to say.

You can tell us more about yourself, ask questions, or vent (complain). These two boards are for us, so make use of them. Read and post often.

The Younger Onset board is more active, but we use both interchangeably.

You may also post on any of the other boards. All of the members are helpful.

Are your children still in the home?

Are you eligible for Social Security Disability Insurance? The Alzheimer's Association has worked with SSA to enable patients to receive Compassionate Allowance for a diagnosis of Early Onset Alzheimer's Disease. You can find more information here:

http://alz.org/living_with_alzheimers_social_security_disability.asp

Are you on any of the memory medications? I have been on Exelon patch and Namenda for almost 6 years and they are helping me. My diagnosis is cognitive impairment not otherwise specified.

That's all for now.

Iris L.

wwkayaker
Posted: Thursday, April 9, 2015 10:49 PM
Joined: 3/4/2014
Posts: 32


Hello all, like many I was unable to log onto the message boards after the "upgrade". I found this particularly upsetting as it was just another thing that I could not do anymore and I hate that the list is getting longer. But today magic I was able to post. I hope others will try again and hopefully be successful so that more can log on.
Iris L.
Posted: Thursday, April 9, 2015 11:58 PM
Joined: 12/15/2011
Posts: 16084


Welcome back, kayaker! I'm so glad to see you again!

Yes, we lost a few members after the "upgrade." There were instructions posted about clearing the cache because old cookies would inhibit the new software.

In the future, if you have trouble logging on, enter via the Browse feature, and search for instructions on how to log back in.

Or use the "Contact Us" tab.

Or if you forget that, call the Helpline 1-800-272-3900 and tell them you are a patient and you need technical HELP!

How have things been going for you?

Iris L.



wwkayaker
Posted: Friday, April 10, 2015 4:08 PM
Joined: 3/4/2014
Posts: 32


Thanks for asking Iris. I have been trying to stay active and now that the weather is warming looking forward to long walks with my golden retriever who is always by my side. Smart dog too - alerted me to food left on the stove burning before the smoke detector went off. Attending support group at my local Alzheimer's Association office and greatly appreciate the work the folks there are doing. I spoke at a workshop entitled "I'm too young to have Alzheimer's" and recently joined in a panel discussion after viewing Still Alice arranged again by my local chapter. My youngest is planning her sweet sixteen. I have yet to dust off my kayak in 2015 but hope to soon.
sophia20
Posted: Monday, April 20, 2015 10:52 AM
Joined: 4/17/2015
Posts: 4


I know many people who have difficulty with this web site. It is not easy to navigate. I have had to have someone help me many times. I am on a telephone chat in south FL and all 5 of us told the local chapter of this. Nothing has been done, as far as I can see.
Iris L.
Posted: Monday, April 20, 2015 11:53 PM
Joined: 12/15/2011
Posts: 16084


Is there something about navigating this new board that I could help with?

I have been on for 6 years and I have been through several board changes. I can't answer anything technical, like clearing the cookie cache, but I might be able to answer a different question.

Everyone should remember their password. If the site sees that someone is struggling with the wrong password, it will automatically shut down and deny entry. Obviously, patients with dementia will more likely be the ones to have difficulty with entering a password, so this feature of the site works against us. But new members need to be aware of this, so that, if they get locked out, they will understand why.

Write your email address and password down somewhere that you can easily locate it, so you will always have it with you.

Iris L.

Iris L.
Posted: Tuesday, April 21, 2015 12:00 AM
Joined: 12/15/2011
Posts: 16084


Claudia and wwkayaker, I overlooked your names when I posted a thread for people who had not posted in a while. I got the names of the other members because they had posted new threads.

I don't want patients to miss out on the support they can receive. We patients must support each other.

Please keep posting. Stay encouraged!

Iris L.

 
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