|
|
Joined: 11/29/2011
Posts: 7027
|
This blog:
http://www.davidhilfiker.blogspot.com/
has been brought to our attention about a month ago. At the time I got in touch with the writer and asked if he would join us on these boards. His reply was thanks, but no thanks. He has too much on his plate right now.
However, he brings up so many topics that I have pondered. I do hope that this board and the one for the regular onset folks would be places to discuss such topics.
Which ones would you like to discuss?
|
|
Joined: 11/29/2011
Posts: 514
|
Mimi,
I want to check it out now. In the meantime, let's see if I can "do an Iris" and show a link that works. 
Nope! I can't do it.
HELP, IRIS!!!
I will cut and paste in the browser for now.
|
|
Joined: 12/15/2011
Posts: 18506
|
David Hilfiker's blog:
http://www.davidhilfiker.blogspot.com/
His topics are very apropos for people like us. We could get some good discussions going on these topics.
Iris L.
|
|
Joined: 11/29/2011
Posts: 514
|
That is terrific reading material. I can't wait to delve further into his blog. That will take some time.
In some ways, I identify withf his acceptance of his DX. My first reaction to my DX was to embrace the rest of my life. It explains why my motto signature has been:
"Finding the Sunshine in your day!"
I'm willing to discuss any topic.
Thanks Iris ! I need to find out how you do that..
|
|
Joined: 12/15/2011
Posts: 18506
|
Although David posted a blog today, I was interested in his blog from Monday, June 24, about Kalju, the Fellow Traveler. I was happy that this man had a companion to travel with him and who enjoyed his stories. David make the point that this old guy is engaging and a good storyteller, but obviously needs a bit of help. However, he's not a burden upon other people,
I love to travel and have traveled overseas. I would love to resume travel if I had a suitable companion. I wouldn't be a drag on the companion. I don't need a caregiver, I need a travel companion.
How many of you would travel if you had a suitable companion to travel with?
What help would you anticipate needing?
Where would you go?
What are you interested in doing?
Iris L.
|
|
Joined: 12/6/2011
Posts: 3326
|
I've been doing a lot of travel. Right now I'm in Big Bear Lake in CA with my daughter and then traveling to the East Coast for 2 weeks with two of my grandkids. In the fall, I'll be doing a 2 week safari in Kenya with my sister. Fortunately, I can still manage an airport by myself, but it's more difficult now, though I'm not shy about asking for directions or help. However, I'm finding that staff at the airports are now so overworked, it's difficult for them to give me their full attention. The processor in my brain is moving a lot slower these days!
|
|
Joined: 12/5/2011
Posts: 795
|
Dear Myriam,
You are very lucky you can still travel alone. I am incapable of managing airports and other details of traveling.
Perhaps Iris is more like me and requires a travel companion. As you said airports are sooooo busy these days, it's very difficult get anyone's full attention.
Good Luck to All,
Peace and Hope,
Lisa
|
|
Joined: 6/24/2012
Posts: 605
|
Yes, I have read this blog. It brings up some good discussion points.
|
|
Joined: 9/4/2012
Posts: 469
|
Great blog, thank you for sharing it.
|
|
Joined: 11/29/2011
Posts: 514
|
Yes, I would also enjoy traveling more. I can still manage the airports for direct flights. However, I'v not attempted change of planes. I'm currently out in Las Vegas during this terrible heatwave. At 9 pm it was 114.
I think I'm concerned about spending the money for travel because I may need it for my care later. Do any of you also have that concern?
My hubs is able to work and has a new job. That reduces the chance of travel as I'm sure it would with other EOAD's that have a partner.
I'm also finding that concentration to complete tasks gets more difficult with lots of activity around me. I still don't think I would be a drag though.
|
|
Joined: 12/15/2011
Posts: 18506
|
In David Hilfiker's post from Thursday "Decline" he states he has noted his decline by internet IQ tests and personally, but he still wants to delay medications. He seems to believe there is a window of opportunity for the medications to be useful to him, but he doesn't know when that will be or if he can catch it.
I believe the earlier the medications are begun the better the chance that they can help a patient. When I joined this message board four years ago, I was told that the use of medications and following Best Practices help to prolong the early stages.
I still believe this. I've been on Exelon patch and Namenda for four years and I am doing very well, considering the condition I was in before I began these meds. My dx is not AD, but cognitive impairment nos.
Question: What has been your experience with the Alzheimer's medications for the early stage AD patients? Do you think they are prolonging the early stage? Are they helping you?
http://www.davidhilfiker.blogspot.com/
Iris L.
|
|
Joined: 6/5/2013
Posts: 22
|
<a href="http://www.davidhilfiker.blogspot.com/">http://www.davidhilfiker.blogspot.com/</a> Iris, Can you show us how to add link that is highlighted? Or direct me to the user's manual to this message board software. This is just crazy that a board for AD patients doesn't have a clear link or easily accessible formatting options available.
That's very condescending of Alz.org to conceal this info. Plus where is the darn word wrap in messages?
|
|
Joined: 12/15/2011
Posts: 18506
|
BBob, what I do to get a link is to type the web address, then use the spacebar. The web address automatically becomes a link. In some cases I must backspace to get right up to the last letter of the web address, then use the space bar. This always works.
There was no lesson on this, I figured this out myself.
Re: word wrap--I don't know why that is not happening automatically. The old board had a technical section for just this sort of problem. Now, you will have to contact the Moderator for help:
ALZConnected user issues
e-mail: help@alzconnected.org
Or click on Contact Us above.
Iris L.
|
|
Joined: 12/15/2011
Posts: 18506
|
I just scrolled up and noticed that Myriam's post from 6/28 did not word wrap, although other posts did. I tried to edit my post, but there was no edit or delete tab! The site is having technical difficulties. I'm going to contact the moderator myself.
Iris L.
|
|
Joined: 12/15/2011
Posts: 18506
|
Now my second post did not word wrap. I emailed the moderator.
Iris L.
|
|
Joined: 12/15/2011
Posts: 18506
|
I see the Edit and Delete tabs now. They are all the way over to the far right.
I had to scroll to see them.
Iris L.
|
|
Joined: 6/5/2013
Posts: 22
|
let's see http://alz.org
OK, I used the spacebar before and after the web address, nothing
Maybe you could add some details about "using the spacebar."
|
|
Joined: 12/15/2011
Posts: 18506
|
http://alz.org
I just typed and then hit the space bar once.
Perhaps it's a feature of a specific browser. I'm using Internet Explorer.
It's a good question for the moderator.
Iris L.
|
|
Joined: 4/15/2012
Posts: 247
|
I'm not sure I buy into the sooner the better option when starting meds. I tried Namenda last year and i made me so antsy and anxious it proved to make me worse rather than help with with my cognition.
The past month or so my memory has been slipping, I find it harder to engage in a in depth conversation and forgetting where I put things and search high and low to find them-which i finally do and they are not weird places but not in my memory none the less.
Word finding is getting harder and my speech is starting to stutter. I can still remember what things are, work as a clerk at a retail store, drive and travel......it may be the time to start meds but which one I'm not sure which one or if now is the right time to start
|
|
Joined: 12/15/2011
Posts: 18506
|
Ffwife, your ability to do well in IADLs such as work in a store and handle money and merchandise, drive and travel argue against your having dementia of the Alzheimer's type. Thus the Alzheimer's medications would not be helpful to you at this point in time.
Most MCI patients don't go on to develop AD.
Iris L.
|
|
Joined: 11/29/2011
Posts: 7027
|
Iris, Do you know if it works if one cuts and pastes?
I'll try it next opportunity I get.
If you read about David, it doesn't take long to figure out he's complete 'hippie' and believes in alternative remedies. Thus, no medication.
That's what he believes and he's doing great. In this particular thing, I don't agree. And once he decides he needs meds, there's no going back to where he began. For me there is sufficient research that those patricular meds, so designed, for the most part, work to slow down the rate of decline.
FFwife. Most doctors do not give meds for MCI. That said, I don't know how one defines the optimum time to begin. Maybe one day, the researchers will be able to differentiate between those folks who move on to dementia and those who don't. The 'movers on' would profit from drugs, in my opinion. Also, one's reaction to meds differ. Thus docs are lucky to have a few to choose from.
Re travelling. I still can go by myself. However, for all but the smallest airports, I request a wheel chair. And that person gets me from place to place.
Having a travelling companion would be great. It probably would work if you are both not lacking in the same skill. I've pretty much given up on sight seeing. But I do like visiting the kids. When i was in Denver, we did something short every day, few hours at the most. I need my mid-day rest.And my stamina is great for my age, but is limited.
And I'm limited in what I can do. Example, on my bucket list is the Tenement Museum in NYC. I could manage one flight of stairs, but no elevators in the old tenements. And by the time I took the subway there, I'd already have met quite a few stairs. So I have to be realistic.
But on the good side: I'm now old enough that I no longer haver to take off my shoes at the airport.
|
|
Joined: 12/15/2011
Posts: 18506
|
Mimi, I noticed that sign about shoes and travelers over 70 at the airport. What a benefit!
I never heard of the Tenement Museum, and I'm from NYC. It must be new.
Iris L.
|
|
Joined: 6/5/2013
Posts: 22
|
I haven't heard from the moderator after trying to find out how to include a clickable highlight. I use IE, too, Iris, and what you tell me doesn't work. Also, don't you use the spacebar after every word? And that doesn't make a clickable link.
IRIS, why are all your replies in bold font? Are you yelling at us?
|
|
Joined: 12/15/2011
Posts: 18506
|
I'm not yelling, BBob, I'm trying to make my print darker so it will be easier to read. On the old board the print was in a sharp, dark font. On this new board, the print is faint and purple.
Using the bold feature was suggested to us to make it easier for those of us with older eyes to read. It's a legibility issue, not a shouting issue.
Iris L.
|
|
Joined: 6/5/2013
Posts: 22
|
Iris,
Current research shows that 80% of MCI patients go on to develop AD.
Google it.
Here's one reference.
Memory
impairment, in mild cognitive impairment without significant
cerebrovascular disease, predicts progression to Alzheimer's disease.
CONCLUSION:
Subjects with
mdMCI+a had a statistically significant association with progression to
AD. Especially, in cases of degenerative etiologies, impairment of the
memory domain is more important than impairment of multiple domains in
predicting the progression to dementia.
Copyright © 2012 S. Karger AG, Basel.
|
|
Joined: 12/15/2011
Posts: 18506
|
Most studies have noted a conversion rate from MCI to AD at 5-15% per year. Most persons with MCI do not go on to develop AD and some revert to normal, according to studies.
http://www.ncbi.nlm.nih.gov/pubmed/17317458
Conversion of mild cognitive impairment to dementia in elderly subjects: a preliminary study in a memory and cognitive disorder unit.
Abstract
Prevalence and incidence of predementia syndromes vary as a result of different diagnostic criteria, as well as different sampling and assessment procedures. Mild cognitive impairment (MCI) is thought to be a prodromal phase of dementia and therefore highly predictive of subsequent conversion. The aim of our study was to investigate the risk of conversion to dementia for different MCI subtypes diagnosed according to standardized and recently revised criteria (amnestic; impairment of memory plus other cognitive domains; nonamnestic). Participants were recruited among the 2,866 patients referring to the Memory and Cognitive Disorders Unit of the Local Health Unit of Bologna, Maggiore Hospital, between October 2000 and February 2006. In this preliminary study we analyzed data from 52 elderly outpatients with a diagnosis of MCI and a mean follow-up of 1.21+/-0.61 years (range 0.23-3.10 years). Mean age was 72.8+/-6.6 years, males were 61.5%. Mean baseline mini mental state examination (MMSE) score was 27.1+/-1.5. There were 15 incident cases of dementia (28.8%), with Alzheimer's disease (AD) accounting for 53.3% of all cases, AD with cerebrovascular disease for 33.4% and fronto-temporal dementia for 13.3%. Overall rate of conversion was 23.8 per 100 person-years. During the same follow-up period, 53.8% of participants remained stable and 17.3% reverted to normal. Rates of conversion for the specific MCI subtypes were 38 per 100 person-years for amnestic MCI, 20 per 100 person- years for non-amnestic MCI, and 16 per 100 person-years for memory plus other cognitive domains MCI. With respect to non-converters, converters were generally older (76.1+/-4.2 vs. 71.5+/-7.0 years, p=0.021), had a lower MMSE score (26.4+/-1.66 vs. 27.4+/-1.4, p=0.035) and a higher prevalence of atrophy at neuroimaging (73.7% vs. 42.4%, p=0.047). Moreover, with respect to non-converters, converters tended to have higher serum high density lipoprotein (HDL) levels, and lower serum folate levels. No difference was observed for the other study variables, included MCI subtype. Our findings suggest that the current definitions for MCI subtypes, particularly those referring to individuals with multiple or non-amnestic cognitive impairment, include a substantial number of individuals who may not progress to dementia. The possible role of cortical atrophy and low folate in the conversion from MCI to dementia could have important implications, because both conditions are easily identifiable. Moreover, low folate status is potentially amenable to therapeutic options. Although discouraging with respect to the clinical usefulness of currently available MCI criteria, our results raise the possibility that defining a protocol of multiple clinical risk factors may be useful in identifying MCI individuals at increased risk of conversion.
PMID:
17317458
[PubMed - indexed for MEDLINE]
Iris L.
|
|
Joined: 12/6/2011
Posts: 3326
|
Iris L. wrote:Mimi, I noticed that sign about shoes and travelers over 70 at the airport. What a benefit!
TSA says that those who are 12 years old or younger or 75 and older do not have to take their shoes off. I try to pass for 75 with little luck  !
|
|
Joined: 11/29/2011
Posts: 7027
|
No, Myriam, you woud. They never question me.
|
|
Joined: 12/15/2011
Posts: 18506
|
Myriam, I'm surprised you get a senior discount!
Iris L.
|
|
Joined: 11/29/2011
Posts: 514
|
Myriam, you stinker. I dont know how you can pass for 75 and not me questioned!!!! You dont look old enough...Unless you have aged tremendously since last year at the Advocancy Forum?. ??
BBob, we bold print and try to keep our paragraphs short. They are easier to follow for us ADers. Some of us used to double space everything a couple of
years ago when we had Loren known as Hopeful 30. She had vision problems
and it was easier for her to see when doubled spaced.
I miss her Terribly!!! She was funny and had a great sense of humor. I bet Iris and Mimi and maybe Myriam might remember her.
Sometimes we develop a real bond with people here. For me she was one.
All of that is FYI so no one misunderstands our bold for screaming.
|
|
Joined: 12/15/2011
Posts: 18506
|
Yes, I remember Hopeful 30. One of the sadnesses of this message board is that some of our friends become unable to participate after a while. We miss them all!
Iris L.
|
|
Joined: 11/29/2011
Posts: 514
|
About the discussion of flying:
I am in the air now and connected to WiFi for the first time. I wanted to talk to you all because I have been away for a few days.
I am leaving one of the hottest places in USA right now - Las Vegas! Only the fact that my daughter and grandbabies live there is enough for me to fight that record heat wave.
I had all of my act together today when I was taking steps to board the plane. Its a miracle because I have one of my migraines. ugh. Cant wait now to land and go to bed.
I always arrange to pre board with cognitive disabilities recorded when I purchase my ticket. I never have a problem. Dont think I can try to pass for 75...mainly because I am chicken. Myriam isnt.
Mimi looks so great that she can barrely pass for 75. By looking at her you would never believe her real age.
Happy 4th everyone.. .
|
|
Joined: 9/4/2012
Posts: 469
|
Hi folks. So interesting and confusing to read all the varied results/opinions about MCI prognosis.
I was a caregiver for my stepfather who passed in 2007 from dysphasia. He had mixed dementia, AD & VaD. Back then, AD was divided into 3 stages. There was no doubt in our minds when he entered stage 2. His world & ours totally disintegrated. Much harder to differentiate the stages now that they are divided into 7 We we taken totally by surprise when he developed those extreme behaviors. We thought his previous problems were stroke related. His doctor never informed us of the AD diagnosis. I discovered it by reading his medical records when he was discharged from the nursing home.
Now my mom has developed excessive dependence on me & I am very shut in. I had to join in this conversation because I do so long to travel!! No chance while mom is in her current state of neediness. I enjoy this board & learn much from the conversations. I started out on the Caregiver board but my mom is high functioning so i find more comfort here.
|
|
Joined: 12/15/2011
Posts: 18506
|
Vita, you know your situation best, but if your mom is high functioning, try to get away on outings while you can. One of the caregivers who visits the chat room took his mom to NYC and to Paris while she was in the mid stages, because she liked to be on the go. It's doable if your mom can tolerate travel with making a few accomodations
Iris L.
|
|
Joined: 12/6/2011
Posts: 3326
|
Ohhhh, I didn't mean that I am 75, or try to pass for it...except for one time when I spaced out and walked through with my shoes on. The agent just smiled and let me through with my shoes on! I'm 66 and looking forward to turning 75!
I miss Hopeful30, too!
|
|
|
|