When there is a rock in our path, we can stumble over it or use it as a stepping stone.

Sunday, October 27, 2013

status update

I have been very quiet lately as I passed out at 3:30 PM on Tuesday, October 8th and hit the back of my head hard when I fell and then passed out again at 5 AM on Wednesday, October 9th and hit the front of my head and face hard when I fell. End result: Three days in the hospital and a diagnosis of two hemorrages (one subdural and one subarrachnoid) in the left side of my brain and an area of electrical activity on the right side of my brain that puts me at high risk for a seizure, thus I have to rest a lot and cannot be on the computer anywhere near as much as usual.


Above is the status I posted on Facebook last week.   Since then I managed to pick up a cold (from being in the hospital, doctor's office, home health care visits?) which is not helping as doing a lot of sneezing is not good when you have two bleeding areas in your brain, so I am spending a lot of time resting, trying to get over the cold and let my brain heal.

I see my neurologist on Thursday.    He will need to order up follow up tests to check the status of the bleeding in my brain and the area of electrical activity that they said puts me at high risk for seizures.

Thursday, October 3, 2013

between computers

I have been silent the last few days as I have been waiting to be on my new desktop before doing another post but I just noticed I have not posted since Sunday so wanted too leave a quick note.

My old "upgraded over time out of various bits and pieces"  desktop was having more and more issues.    I talked to my favorite computer repair person and he told me it would cost more to replace the parts that were dying on me with upgraded parts that can handle what I need* than to replace it with a very nice Dell that I found on sale (an Inspiron 660).

*such as I needed a lot more than the 228 GB on my old hard drive to handle everything for the book I am compiling about Diana's Dad as I am going to need to store a lot of graphics and audio and video files for that and a number of other digital scrapbooks that I will be working on.  (The book will be done in the form of a heritage scrapbook with a lot more text than a normal scrapbook, as it will be covering about 150 years of the history of Diana's family.)

I ordered the Dell, it arrived this past Monday (September 30th) but the cord from my monitor had no place to plug into on the new desktop.     I called Dell and they said they would send me an adaptor.  The adaptor arrived yesterday but both sides of it were wrong so I ended up ordering a cord from Amazon.   It should arrive tomorrow.

Once I have it, I should be able to set my new desktop up and make sure all is well and then start to catch up on a week's worth of things that I have been waiting to have access to a desktop of my own to do.     I expect to be fairly busy this weekend playing catch-up but will work on getting another blog post in as now that I have gotten back to blogging, I don't want to let it slip away from me again.

It is much too easy, especially with dementia, to just stop doing something and not pick it back up again.    I am choosing to do fewer things so that I can focus my remaining resources on the things that I am doing and this blog is one of the things that I want to continue to do for as long as I can do so.


Sunday, September 29, 2013

Writing a Book

My original hope/dream/goal when I took a year off to work after getting my B.A. was to return to UCONN to get first a Masters and then eventually a Ph.D. in Archival Studies.   However, as Robert Burns said

"The best-laid schemes o' mice an' men
Gang aft afley,"

Instead of going back to school myself, I ended up getting married and remained working to support my husband while he finished his PhD and then his Post Doc.   I was supposed to get my turn to go back to school after he finished but by then I knew it was not a marriage I could stay in (even though my ex-husband was and is a wonderful man, who I admire greatly).      Long story short, I never ended up going back for my graduate work.

I never lost my love for that whole field though and now I have started a project that is both a labor of love for my adopted family (my best friend's family) and a way to keep my brain active working in an area that I have loved for many decades.

My best friend's Dad is 83 (will be 84 in December).   He has many wonderful memories and is very good at telling anecdotes from his past.    I have decided to combine my life-long interest in American History (including a very strong interest in capturing oral histories) with my love of digital scrapbooking and take advantage of the wonderful opportunity that I have been given in living with a repository of American History, someone who lived through a large chunk of the 20th century.

I took some books out of the library on capturing oral histories to use as a guide as we work and most days, we take about 10 minutes for him to record some of his memories onto an Evernote audio file for me.      I am transcribing his memories and will use my digital scrapbooking software to turn them into an autobiography for him.      This will take hundreds of hours of work on my part but at my stage of life (and dementia) I can't think of a better use of that time than to take the memories of a living treasure and record them for his daughters and others in his family.  

They say that staying active keeps your brain going longer.  I very much believe that is true.    This will definitely keep me quite active mentally and is a project that is very much still doable for me as it uses skills that I still have.     Yes, my memories are slipping but I am recording everything in Evernote (before transferring it to my digital scrapbooking software) so I don't need to remember the data, I only have to record, transcribe and format it.


Friday, September 27, 2013

preserving memories

Back in 2002, I went into a nursing home for a few years as after my initial diagnosis, my neurologist basically said I should just give up all hope as there was nothing that could be done for me and I was just going to get worse and worse and become a danger living on my own.    The Medical Director of the nursing home (Dr. Keenan) disagreed.   He thought I could be helped.   He put me on Exelon and encouraged me to stay active and involved in the daily life of the nursing home.   Eleven years later, I have been out of the nursing home for eight years now and proven Dr. Keenan right, that there was still a lot more life left in me.

After I got my initial diagnosis and we were slowly closing up my life in preparation for me to go into the nursing home, my best friend, Diana, wanted to help me preserve my memories and got me started in paper scrapbooking.    (After getting out of the nursing home, I moved on to digital scrapbooking.)

A couple of days ago I stopped at her house where I have a room and picked up some notebooks that I had not looked at in a long time as I wanted to go through them as part of my downsizing project.   It turns out some of them are actually the scrapbooks that I created back in 2002 to help preserve my memories.     They brought back a lot of smiles.     I am so glad that I have them.

I do plan to scan them into Evernote also so that I have an electronic record of them if anything were to ever happen to the originals but it is nice to have something that I can actually hold in my hands with records of so many memories of what has been important in my life.    

The notebooks include not only pictures of key people in my life but also the lyrics to a lot of my favorite songs and words to some of my favorite poems.       It was a lot of fun looking through them as I had not thought of some of those songs and poems in years.

I am going to use those as a starting point now that I have resumed doing digital scrapbooking again.   Once I have them scanned into my Evernote account, I am going to put together a digital scrapbook based on some of my favorite songs and poems.    This will have a two-fold purpose because in addition to bringing updated scrapbooking techniques to poems and songs that I have loved for years, working with them will help to reinforce them in my memory as I noticed while reading them that some of them had been starting to slip away on me.


Thursday, September 26, 2013

From awareness grows hope. Each voice could save a life.

On Tuesday, March 12, 2013, I posted a guest post from a caregiver (Cameron), titled "Being a Caregiver Transformed my Life."   The post was about his wife, Heather's, journey with mesothelioma.  Today is Mesothelioma Awareness Day

Mesothelioma is a cancer caused by exposure to asbestos.    People diagnosed with it are given less than a year to live.  If you use Twitter, Facebook or Pinterest, the Mesothelioma link above will take you to a web site that makes it easy for you to help others learn about this deadly disease.     Simply click on the icon for the social media you use, add a comment if you wish, and it will post to your Facebook timeline or tweet or pin for you.

As soon as I finish this post, I will be heading back over to the site myself to use the social media links on it to help spread the water to others.   If more people know about how many ways we can be exposed to asbestos, hopefully in the future, fewer people will be exposed to it and Mesothelioma diagnoses will become more and more uncommon.

Even if you do not wish to spread the word, I do hope you will take a few minutes to click on the Mesothelioma Awareness Day link above and check out the very easy to read site as it contains information about asbestos exposure (how easy it is to have it occur and the consequences of it) that everyone should know.


Thank you,


~Stumblinn


Wednesday, September 25, 2013

Tips For Improving The Quality of Life of Those With Dementia (Guest Post)

Today's guest post is by Tammy Mahan who is a Nurse who contributes articles to Healthline.com.    Healthline.come can also be found on Facebook at https://www.facebook.com/healthlinenetworks.   The article was submitted to me by Tracy from Healthline.com.


Tips for Improving the Quality of Life for Those with Dementia

Meaningful and enjoyable lives can be led by those with dementia. You can easily learn how to improve the quality of life with someone diagnosed with dementia by taking a few simple steps and paying attention to a few specific things.

Environment Affects Dementia

There are some issues that you can take into consideration when determining if the environment is the cause of problem behaviors.

Search for behavior patterns associated with a specific activity. If the doorbell upsets them, post a sign for visitors to knock on the door instead.

Cover or remove dolls, mirrors and television sets if they are being mistaken for actual people. People with dementia can become agitated if there are busy patterns on carpeting or walls. Whenever possible a plain pattern should be chosen.

It is important for you to remain calm and not cause additional stimulus that can have a negative effect.

Routine

The idea of environment includes routine and confusion can be prevented by having a schedule. Daily routines typically include basic activities of daily living such as bathing, grooming and eating but there should be other activities such games and exercise that stimulate the mind.

Time of Day

There are those who will experience worsened symptoms of dementia such as anger, paranoia, disorientation, restlessness and rapid mood changes. Symptoms of dementia can become worse later in the day causing them to have trouble sleeping. Violence, wandering, crying, pacing and hiding things can be triggered by these emotions.

There could even be hallucinations experienced as a result of the changes in the light. There are things that can be done to fight the effects of sundown dementia. The internal clock can be set by allowing exposure to light early in the morning. Excess energy can be expended by encouraging exercise throughout the day. Caffeine intake should be limited especially in the evening. There should be a quiet place to relax that is also private and having a toilet by the bed can help to prevent bathroom trips during the night.

Pain can be a problem that those with dementia do not have the ability to adequately express. Visiting the doctor regularly and making the house as secure as possible can help to keep the patients’ health in check and ensure they cannot wander during the night.

You have to take care of yourself as a caregiver to ensure that you are taking the best care of the patient. When you are irritable or sick then you are not going to be performing at your best for the one that you are taking care of. Implementing a new activity every few days can make life easier for you and for the person suffering from dementia. You will both be more relaxed.

The activity should be familiar and something that they like; you can also do animal therapy. Animals will give you a way to introduce new and interesting things to the environment. Interaction between humans and animals has been shown to have healing, calming effects. These are just a few ways you can make the quality of life easier for those with dementia.


Tammy Mahan has been a nurse for over 20 years. In her free time, she contributes articles to Healthline.Com.

Tuesday, September 24, 2013

um, who are you?

I just read Howard's post for today (FTD Memory and Choking) and he again brought up something, actually two issues, that I am dealing with.

Remembering people's faces has never been my strong point and it is definitely getting weaker.    Since I also have a lot of problem remembering proper nouns, it means I can see someone, and (if I am lucky) think they look vaguely familiar but not be able to figure out their name or where I know them from.

While I am not into sports, Howard's strategy for watching sports (making sure there is a quiet room that he can escape to in order to regroup) is a very important one for me also as I don't do well when I get overwhelmed and too much stimulation will definitely have me walking into walls and struggling to speak.

As to choking, I don't have a problem with eating too fast but I have not been able to swallow large pills for a couple of years now.     They just simply will not go down.   I can put water in my mouth and be as patient as I want and the swallowing reflex will not kick in for me for large pills.       Sometimes I struggle to get it to kick in for smaller pills and capsules but most days, they will go down fine.

I do find that interesting that something in my brain knows when a pill is larger than my body can handle now and just simply refuses to swallow it.    I am not sure if this will make sense to readers who have never experienced it for themselves.     I don't know how else to explain it as you put the pill in your mouth, drink the water and do whatever it is we humans normally do when we have a pill in our mouths to initiate the swallowing action.    Except when when I do that with something like a large vitamin pill in my mouth (the kind they call "horse pills," the swallowing action just will not kick in no matter how hard I try.

For a while I ended up resorting to chewable vitamins but they were not an ideal choice either as they both had too much sugar in them and some choices are not vegan.   Thankfully, I found a very small vegan multivitamin, so that solved that issue.




Monday, September 23, 2013

just to maintain discipline

If I am going to keep this blog up, I need to maintain the discipline of posting something almost every day.

I didn't yesterday as I had had less than two hours of sleep (broken up in bits and pieces).     This morning, I had about three hours of sleep so am not in much better shape than I was yesterday.

I will admit that ongoing struggles with sleep is definitely one of my least favorite parts of having dementia.     (They did do a sleep study on me and told me that I was repeatedly waking up before reaching the deep sleep stages.)   The best I can do is to do things that require focus when I have been able to sleep and keep things low key for days like today.

And that is it for today as I also just typed out about 3/4 of a page of notes for my PCP visit tomorrow and that seems to be about all my brain has to give today as I am sitting here staring rather blankly at this post now (an unusual experience for me), having no earthly idea of what else I should include in this post today ...


Saturday, September 21, 2013

playing cards to help math skills

One of the benefits for me of living with my best friend's Dad* now is that I get to play cards with him several times a week.   He has me keep score which, while definitely not my favorite activity, I know is good for me as my math skills have become abysmal.

While I was always stronger verbally than mathematically, I did manage to get as far as Calculus in high school with grades high enough to give me High Honors and make the National Honor Society.   So to have reached the point where even some two digit math (especially subtraction) is now a struggle for me and working with fractions and doing division (other than very basic things like 9/3 = 3, for example) is beyond me, is definitely a steep drop for me!!!

I have no desire whatsoever to get back to where I used to be in math but I do still need to do things like balance my checkbook.    I use a calculator to do it but even there I need to have some number sense in order to figure out the error when things don't balance.**

Keeping score while playing cards is a way to give the math part of my brain some exercise while still having some fun.

*I found a useful trick.   Each time I balance my checking account (something I normally do weekly), I draw a line with a yellow highlighter through the last line that balanced back to my checking account.   This way any time I run into a discrepancy, I can tell at a glance last time it was balanced and thus know the error has to be in the entries since then.        I rarely have more than 4 - 6 entries per week in my checkbook so that makes it much easier to find errors when they occur.

**I have known him for over a quarter of a century.   He is very much like a father to me too, so I also call him Dad.


Friday, September 20, 2013

Additional signs of my dementia progressing


I used to start to prepare several months before a doctor's appointment by starting a word document that I could use to jot down notes as things occurred to me to discuss with the doctor.    I have an appointment with my PCP on Tuesday and am still at the "hmmm, I really need to do my notes for that appointment" stage ...     I will do them but just find myself less driven to be as thorough as I used to be on things like that.

I am most definitely not there yet, but I can see a day eventually arising when I will startle my doctor by walking in without any prepared notes.

I am guessing that the damage in my parietal lobe is increasing as I am finding myself walking into walls more often (and have the bruises to prove it).   It is not just because of losing my balance, although that is the reason sometimes.   A lot of times it is just simply a matter of misjudging the distance between myself and the wall and realizing (often painfully) that I was closer to it than I thought.


Thursday, September 19, 2013

Other dementia blogs

Today is a shout out to two dementia blogs that I have been reading for awhile.   Both are from other high functioning people with dementia.

Howard's post at http://earlydementiasupport.blogspot.com/2013/09/bad-docs.html raised an issue I am very familiar with even though I don't have an FTD diagnosis.   (My neurologist has given me an ideopathic dementia diagnosis.)

Howard's words

"I have FTD and don't really follow things in real time.  Couldn't really follow the events intellectually that were happening with Doc F.   ...  Things that happen hits us "after the fact" and we figure it out later."

really hit home for me as I often feel like that at a doctor's office and sometimes other places.    I try to deal with it by writing up my notes for the doctor in advance but I still often leave with my head reeling.     With my shorter term memory going too now, I am thinking more and more that I need to start doing an audio note (yes, on Evernote *grins*) of the doctor visits to help me remember afterwards what was actually said.

The other blog I want to mention today is a post from Bruce:   http://brucebane.wordpress.com/2013/09/18/dementia-on-overload/

I love the way that Bruce turned a battle with his dementia into a poetic experience.       Don't expect to see anything poetic on my blog as I don't have Bruce's talent but as I have been mentioning in some previous posts, in it's own way, dementia is also bringing out my more creative side.

As I often say, there is good in everything and to me (bringing out my creative side) is a benefit of the slowing down that dementia is bringing into my life.

Wednesday, September 18, 2013

Missing Memories

A friend that I have known for over 16 years, recently told me she is glad that I still remember her and her husband. While I will admit that I have forgotten some people in my life (either someone mentions a name or I find some data on someone) and have zero memory of who they are, I still have a reasonable amount of long term memories left. Where most of my day to day issues come in (which is why I thank God for Evernote and my ability to still use technology) is my short term memory.  

I have to say that my "going paperless" (to the extent possible) project is showing me where I have more longer term memory gaps though.    Below are just two examples:

I have been scanning into Evernote all the data I find relating to any type of medical or dental visits. Evernote's search and related notes features lets me put bits and pieces of data that I might not otherwise have connected together.

Based on the evidence,  I visited an oral surgeon in Tampa, FL at least twice in early 2007 as while sorting paperwork I found a letter dated January 4, 2007 from this surgeon's office thanking me for visiting them today.   I also found a prescription for 12 tabs of Vicodin (never filled) that he prescribed for me on February 5, 2007.       

I have absolutely zero memory of what this is all about - other than obviously some type of oral surgery.  

Another blank spot in my memory that this project has turned up is a visit to a wildlife place in Tampa with two friends.     Now what is interesting about this is the way I found out about the visit is that I found the pictures from it - pictures that I am not in because I was the photographer.    And yet, nothing in any of the pictures rings a bell for me.   I had to ask one of the friends in the pictures where they were taken as I have no memory of that trip at all.     (I do remember the other friend coming to visit us, although I had to figure out it was her in the pictures as I did not recognize her but I have zero memory of that day trip we took.)

I have to admit that even after a decade of running into these blank spots in my memory where even when presented with physical evidence of something that I obviously took part in, it doesn't ring a bell, it is still a strange (and uncomfortable) feeling.   It is not like I have a faint memory of it and have forgotten the details.   It is like it happened to someone else altogether.    I have no memories whatsoever of the events.

I don't know that my digital scrapbooking will help me to actually remember the things I am scrapbooking as times goes on but maybe, just maybe, the extra time and attention I am giving to events that I scrapbook will help lay the memories down a bit stronger in my brain, preserve them longer for me.

(btw, I just reread http://stumblinn.blogspot.com/2013/09/i-dont-recall-if-i-previously-mentioned.html and realized what the word was that I could not think of when writing that post.   It was not practice or procedure, it was technique.   I am not going to update that post to add the word though because the blank wall I hit when writing it is a very normal part of my life now and that is what this blog is about - life as a high functioning person with dementia.   So I think I serve my readers best by leaving it as it occurred.) 

Tuesday, September 17, 2013

and back to Evernote again (and yet another way it helps with my dementia)

Did I mention that I use Evernote extensively for almost every single part of my life?   *grins*

Another thing that I have found very helpful to do with it is to scan in things like magazine articles, etc. as I have had so many of them sitting around after clipping them at some point in the past (sometimes years ago) because they contained data that I might want to reference again.     Needless to say, most of them ended up in a box, getting carted from place to place and rarely, if every looked at.

Now they are getting scanned into Evernote where I can quickly access them via search.  I absolutely love this.     Once they are scanned in, the original pages can be recycled, thus further reducing how much physical paper I have around.

Another Evernote feature is related notes.    For example, if I wanted to do a search to find out what I have relating to walnuts (I am vegan and keep a lot of nutrition related data in my Evernote), Evernote would first bring up a list of all notes that have Walnuts in the name, in the text or are tagged Walnuts.*   Then once I clicked on any note, underneath that note, Evernote would show me three related notes.   This can help me find useful related data that I might have completely forgotten I had.

*I don't actually have a tag specifically for Walnuts, that was just for example purposes.      Walnuts would be under my nutrition tag.

Yes, this still relates to the dementia - as being able to easily access lots of data with a simple search instead of having the mental baggage of having boxes of paperwork hanging over me, weighing me down, is a major plus for someone who is living with** dementia who needs to simplify her life but is not ready to just throw everything overboard either.

**yes, I have dementia, but I am very much still alive and enjoying my life.   The purpose of this blog is to show that dementia is not the end of the world.      Yes, it takes adjustments and I know as dementia progresses, life gets much harder for the caretaker.  I am not remotely trying to minimize the hard work and sacrifices of the caretakers but I firmly believe that nothing is all bad.    Someday, I will write more about this in a separate blog post.

Monday, September 16, 2013

Digital Scrapbooking to Preserve Memories and Feed Creative Side


I don't recall if I previously mentioned on this blog, but as the ultra analytical, project oriented, "got to get things done" side of me begins to slow down, my creative side is becoming more prominent.

Don't get me wrong, as anyone reading my last few posts (on using technology to aid memory loss) can tell, I am not ready to get out my crochet hooks and move into a rocking chair for the rest of my life.   However, in comparison to in the past, my drive to be productive has slowed down.  

As with everything in life, this, of course, has a good side to it.    My best friend, Diana, had introduced me to paper scrapbooking before I went into the nursing home for a few years back in 2002.      After I got out of the nursing home, I took up digital scrapbooking.   I have not done much with it in the last couple of years.

I have gone back to it again and I am greatly enjoying it now.   At this point, it is just right for me.   It is just enough to keep my mind engaged, allows me to create a finished product I can see and share with others, but does not take up a lot of space around me while I am in the midst of paring down my physical belongings while I still can do so myself.

Of course, I use Evernote to help with my digital scrapbooking too.   For example, I often find things on the web (either "how to" pages or examples of layouts using a ___________ that I want to try.)   Sorry can't think of the right word for it atm ... practice?  procedure?    Neither of them is quite right, it will come to me at some point.   I am going to leave this as it is though as this is my "life with dementia" blog and it is a perfect example of that.    Where I will be going along fine and hit a blank wall on something that I know darned well that I know.

When that happens, I put it aside and do something else as I know darned well that trying to force myself to remember it, will only cause me stress and that never helps my functioning.













Sunday, September 15, 2013

final (I think) part of productivity series

The third tool that I used to keep myself on track as my memory goes south is IFTTT.

Just as I learned about GTD while researching ways to use Evernote better, I kept running into mentions of IFTT the same way.   I was rather skeptical of it at first, but am very glad I took the plunge as it has proven very useful.

While I have notices from my gmail calendar sent to my email, I still need to be reminded to look at them.    IFTTT is one of the ways to make that happen as it can do things like turn selected gmails into text messages for me.

It also creates a daily journal entry (complete with weather report) in my Evernote to encourage me to keep notes (separate from my to do list) of what I have done each day.

This is important because I delete the items on my to do list each day as I do them so they don't serve as a future reminder for me of what I did when.    I keep my daily journals and am able to look back at them to figure out when I did XYZ.   Since Evernote has a great search feature, it is very easy to find when I did something even if I don't remember when I did it.

I also use IFTT for things like sending me a daily notice of the free Amazon app of the day (as I was starting to forget to check for it each day) and the New York Times Best Sellers.   It sends the latter directly into my book recommendations Notebook on my Evernote.  I can scroll through to see if any of them interest me and if so, check my local library for them.  I still love to read, but keeping up on checking best seller lists was also getting a bit beyond me.   Having IFTTT handle it automatically for me, makes life much easier.

So that is my triad:   Evernote, GTD and IFTTT.   Between the three of them, I am still doing fairly well on day to day functioning most days even with my increasing memory deficits.

Saturday, September 14, 2013

knowing my limits

Today's post was going to be on IFTTT (if this, then that) but part of living with dementia is knowing your limits.    I had less than two hour sleep and am in no shape to do a post on IFTTT today.

Hopefully I will get some sleep tonight and be able to do it tomorrow.     For today, I am going to stay low key as this is the kind of day that I tend to make a lot of mistakes with anything that takes much brain power, walk into walls, struggle with speech aphasia, etc.


Friday, September 13, 2013

Using Technology as a memory Aid, Part 3, B

This is my third day of "translating" the note I left to myself:

work on part 2 b of blog post - scanning data into Evernote has additional benefits such as less for Diana to deal with and also makes life much easier when I go to doctor's office, to get groceries, etc. What's the next action and the two minute rule also help. “The secret of getting ahead is getting started.The secret of getting started is breaking your complex overwhelming tasks into small manageable tasks, and then starting with the first one.” –Mark Twain

into a blog post:



"As I was researching Evernote, I repeatedly came across references to David Allen's GTD system and also the IFTTT web site.    I researched both and the combination of all three had been a Godsend."

I think I will tackle IFTTT tomorrow.  For today, I am just going to talk about the 3 parts of the GTD system that as a dementia patient I personally find useful.

GTD is meant for busy executives, so there are many parts of it that don't apply to my life.   The parts that do are helping me a lot though:
  1. "Your mind is for having ideas, not holding them" - David Allen      Basically this means don't try to remember things.  For someone like me who can often forget a thought 60 seconds after I have had it, that idea is a major stress reliever.    In a nutshell, with GTD, when you have an idea "you capture it."   You can capture it anyway you chose - hand write it, capture it electronically, with an audio notetaker - whatever works for you.    Just get it out of your head and onto your capture system instead of trying to remember all of your "to do's" and "to considers" and "what if's," etc.  (I use Evernote to capture and organize my thoughts.)
  2. "If you determine an action can be done in two minutes, you actually should do it right then because it’ll take longer to organize it and review it than it would be to actually finish it the first time you notice it." - David Allen     It's amazing how many things can be done in two minutes.   Making this a part of my life has helped me stay on top of a lot of things that would have otherwise piled up.  The less that is piled up awaiting my attention, the less stressed I am and the better I function.
  3. David Allen says that you cannot do a project, you can only do a physical action.   Thus for each project, the question to ask is always "what's the next action" that needs to be done to move this project forward.   Once you get used to this way of looking at larger tasks, they become much more manageable.   I use my Evernote system to track my projects and my daily to do lists (also kept and managed in Evernote) to remind myself each day of THE NEXT STEP on whatever projects I am working on.   By focusing on ONLY the next step, I stay on track and don't get overwhelmed (very important when one has dementia.)
“The secret of getting ahead is getting started.The secret of getting started is breaking your complex overwhelming tasks into small manageable tasks, and then starting with the first one.” –Mark Twain


In fact, while it was the inquiry from the NY Times reporter about using technology to assist with dementia that got me started writing on my blog again, it is using Evernote and GTD that is allowing me to do it as I had reached the point where I was feeling overwhelmed and putting a lot of things off.   Once I realized I wanted to do some more blogging, I was able to use Evernote to capture my ideas, determine next steps and then with a much clearer head, get back to actually blogging.

Tomorrow, I will try to write about the third part of the triad that has been helping me a lot:  IFTTT (if this, then that).

Thursday, September 12, 2013

Using Technology as a memory Aid, Part 3, A

work on part 2 of blog post - scanning data into Evernote has additional benefits such as less for Diana to deal with and also makes life much easier when I go to doctor's office, to get groceries, etc. What's the next action and the two minute rule also help. “The secret of getting ahead is getting started.The secret of getting started is breaking your complex overwhelming tasks into small manageable tasks, and then starting with the first one.” –Mark Twain

as a blog post translates to

Recording as much of my data in Evernote as I can (everything from to do lists to results of medical tests, contact data and directions to doctors' offices to grocery lists to ideas for scrapbooking to information on my favorite shows and books, etc.) has a lot of benefits for me as my memory deteriorates.

These include, but are not limited to,



  • The more data I scan in, the more hard copies of material I can get rid of which both makes life much easier for me when looking for things (only have to do a search in my Evernote) and will make life easier for the Executor of my Estate (such as it is *grins*) when the time comes as there will be much less for her to sort through and decide what to do with.
  • When I go to a doctor's office or for a medical test and I am asked, where and when did you last have such and such a test, I no longer have to look at them blankly but can just pull up my Evernote, look in my Medical Tests result notebook and know that a scanned in copy of all of my data on my medical tests will be right in there.   (Or I can search by specific type of test such as X-rays, ultrasound, etc.)
  • Since I cannot drive, it is very helpful when needing to ask someone else to drive me to Doctors' appointments and medical tests to be able to quickly access data on where I need to go.
  • When I go places (library, best friend's house, grocery store, etc.) there is no way that I can remember what I meant to do there.    Using Copy Note Link in Evernote to add links to my daily to do list, allows me to quickly use my cell phone to pull up one note with links for lists of what I need to do in each place I will be going - such as a list of what groceries I need at the store.
  • I often find good ideas for scrapbooking layouts, etc. when wandering around the web.  Using appropriately labelled folders and tags in Evernote allows me to quickly find things again when I need them.  For example, I might be working on a digital scrapbooking layout and playing with shadows.  In the back of my mind will be a memory that I saw a good page somewhere on using shadows but I haven't the foggiest idea where or when.   Typing shadows into my Evernote search will bring up a list of pages with the word including the web page I am looking for.   (I use either web clipper or clearly, depending on the page, to clip loads of things I want to be able to access later from the web.)
  • I am finding already that often when I run across a mention of a book or a show I used to love, that it is a memory that is graying on me ... i.e., it is still ringing a bell (as opposed to things I am told that used to be a part of my life that I no longer have any memory at all of) but the memory is getting further away from me, fuzzier, less clearly delineated.   So I am keeping a notebook called Entertainment and another for Books where I can grab web pages relating to shows and books I have loved to help me keep from losing the memories of things that have given me a lot of pleasure.
  • The books notebook stack  is also where I store recommendations (separate notebook within it) for books that I want to read.
This is not a complete list but I think (hope) gives a good idea of some of the many ways that Evernote reduces the stress in my life.   Knowing that I have so much of what it is important for me to remember, access easily in Evernote (and that I can access the data on web connected computer, my tablet or my smart phone) lets me stay much calmer instead of stressing out over what I might be forgetting that is important or what should I be doing now or next.

There is more in the note above for a blog post but this post is long enough already, so I will try to log in tomorrow to do part b of this blog.


Wednesday, September 11, 2013

Using Technology, Part 2

This is an actual example of how I use Evernote.      I keep To Do lists on it for each day of the week.   When I think of anything that I want to do, I make sure it gets on one of my To Do lists.  In addition to having one for each day of the week, I have a few lists for longer term items.  Things that I don't want to forget but that don't need to be done on a specific day.

I also give myself a lot of leeway.   Somethings have to be done on an exact day.  Others, such as this note:

"work on part 2 of blog post - scanning data into Evernote has additional benefits such as less for Diana to deal with and also makes life much easier when I go to doctor's office, to get groceries, etc.  What's the next action and the two minute rule also help.  “The secret of getting ahead is getting started. The secret of getting started is breaking your complex overwhelming tasks into small manageable tasks, and then starting with the first one.” – Mark Twain"

can easily be moved forward to another day if I am having a bad brain day and not up to getting things like writing a new post done on the day I had planned.

I don't want to make this post too long and I have a bunch of other things on my to do list that I want to get done today.   I know better than to try to do too many things in one day even on days when my brain is functioning fairly well, as it is today.   Experience has taught me that I have an approximately 3 hour max limit to how long I can function at a high level (doing things like writing, organizing, finances, etc.) before my brain starts to noticeably tire and I start to make a lot of mistakes.

So I am going to wrap this post up here and try tomorrow to do another part of the post, i.e., the post I was actually going to write today based on the note to myself above - until I realized that the existence of that note itself was actually the basis for a blog post.

Saturday, September 7, 2013

Using Technology To Help With My Memory Loss

I received a note from a NY Times writer who found my rarely updated blog and it made me realize that I really needed to do a status update.

The good news is that because I am having more and more memory problems, especially short term memory, I am actually doing better now than I have been in awhile.   No, I have not gone totally nuts, let me explain why I said that.

I began to take my first computer courses in 1978 (back when programs were entered by with punch cards) and began to work with early versions of desktop computers in by 1981.  I suspect most readers of this blog are familiar with the savior of dementia patients - cognitive reserve.   Since I have been using computers for so long, that is one of the areas that I have the strongest remaining cognitive reserve.

Thus when I began to find myself noticeably stressed because of more and more things in my daily life slipping through the cracks because of my increasing memory issues, I naturally turned to technological solutions.

The lifesaver for me has been using Evernote on my desktop computer, tablet and smart phone.   That works amazingly well since it syncs across all devices and I always have at least one of them at hand.   As I was researching Evernote, I repeatedly came across references to David Allen's GTD system and also the IFTTT web site.    I researched both and the combination of all three had been a Godsend.

The GTD system's main premise is not to keep things in your head.   To use whatever system works for you to "capture" all of your ideas and "to do's" so that your brain is free to be creative instead of constantly fixating on "oh, I have to remember to do XYZ."   It is designed for executives but it works beautifully for memory impairment too.

Combining GTD ideas with Evernote and IFTTT technology allows me to do things such as put a repeating reminder on my Google calendar to take my Exelon twice a day.   I then use Google Calendar to send reminders to my gmail, tablet and smart phone.  I also use IFTTT to send the reminders to my Evernote (which I check literally dozens of times a day).

With reminders for everything on my calendar popping up in my email, on my tablet, on my cell phone and in my Evernote, I very rarely miss anything important now.     I use this method for all kinds of things that I need to remember each day.

I also take it a step further and use IFTTT to send certain important emails (ones from others rather than related to things on my calendar) into my Evernote to increase the chances of my seeing them in a timely manner.

These are just a couple of samples of how Evernote, IFTTT and GTD are making my increasing memory loss a good thing - as without the memory loss, I probably would not have been driven to do the research to find a solution and never found out what an incredibly elegant solution an Evernote, IFTTT, GTD combination makes for so many things.

Tuesday, May 21, 2013

"With Hope, The Odds Don't Matter."

This is a follow up to the guest post from a caregiver.

"With Hope, The Odds Don't Matter" is a short (less than four minutes) very well done video about Heather's journey with mesothelioma and how it impacted her family.

I urge you to watch this video with its message of hope as it is a message that applies to any disease or disability.

Tuesday, March 12, 2013

Guest post from Caregiver

Being a Caregiver Transformed My Life

My life was happy and brimming with excitement in November of 2005.  We had been in the process of adjusting to life with our newborn, Lily, when we received some devastating news.  My wife Heather was diagnosed with pleural malignant mesothelioma on November 21st, and our lives were changed forever.  Heather began fighting cancer, and I became her caregiver, a role I was never prepared for, but I knew I had to learn fast.

Heather and I were both extremely worried at what her diagnosis would bring, and if she would survive the illness or not.  Our doctor informed us about mesothelioma and he gave us choices for Heather’s treatment options.  We could choose between a regional hospital that had an excellent reputation but did not have any experience in dealing with this type of cancer, or we could go to a local university hospital.  The third option was to go to Dr. David Sugarbaker in Boston.  We chose to go to Dr. Sugarbaker for Heather’s treatments because he was a renowned expert in the field of mesothelioma treatment.

When we heard our treatment options for Heather, she nearly came apart.  I could sense her panic and worry and I immediately told our physician we had to get to Boston as quickly as possible to begin making every effort to get Heather better.  I really had to come face-to-face with my own insecurities of whether or not I had it in me to maintain a job, be a dad to Lily and to take care of Heather to the best of my ability.

Luckily, I didn’t have to walk this path alone.  I will forever be grateful to the many friends and family members who went above and beyond to help us out in numerous ways.  We were offered everything from kind words of encouragement to much needed financial support. Without a doubt, we could not have survived without their help.  My strongest advice to anyone in our situation would be to accept every offer of help that comes your way, and don’t be too proud to ask for it.  This will without a doubt be the toughest challenge you’ll ever face, there is no need for you to face it alone.

We are now past all the treatments and Heather was able to defy the odds against her.  She beat mesothelioma, a rare feat accomplished by far too few people.  Its been seven years since her mesothelioma diagnosis, and she remains cancer free to this day.

Two years later, I went back to school to study Information Technology, and I know that my experience being a caregiver gave me the confidence to take on this new chapter in my life. I graduated at the top of my class and had the honor of giving the graduation speech.  I never thought my life would take such drastic turns, but we learned a lot about hope and facing challenges in these past few years.  During my speech, I told my classmates what my wife had taught me – that within each of us is the strength to accomplish the impossible, as long as we never give up hope and always believe in ourselves.

Monday, March 11, 2013

more relaxed and creative

I was contacted by a caregiver who asked if he could publish a guest post on my blog.   I readily agreed and will be posting his update in the future (having a bit of technical difficulty with his post atm).

I wanted to first give an update on  how I am doing.

I am still working on healing the damage caused by the osteoporosis medication but will hopefully not need another endoscopy.    I need to talk to my doctor about alternative osteoporosis treatments though since my body can't handle standard ones and I am now down to 4' 7" (from a little over 4' 10") because of my severe osteoporosis.


In January  I began to notice difficulties labeling colors.  I can easily tell if something is red or yellow or blue, for example.   However, I am finding myself struggling to distinguish between colors such as teal and aquamarine, bronze and gold, light brown and tan, maroon and magenta, etc.   Since my vision is also getting foggier, I really don't know if this is eye or brain, or perhaps a combination of both.  I have ordered new glasses, if all goes well, I will be getting them tomorrow and will see if they help.   Based on what eye doctor said, I should see a significant improvement with the new glasses as my old prescription was way out of date.

As to meds, I am continuing to take both my Exelon and 3 tablespoons a day of coconut oil.    I'm not sure if the coconut oil is doing a lot for the dementia but it definitely is making me healthier as it does a good job of suppressing all cravings for sweets.   I am now fully back to a very healthy vegan diet and have a lot more energy than I have had in a long time.


I am also enjoying life even more now because as my memory and math usage continue to slip, I am finding that the ultra planner, logical side of me is very slowly moving a bit more to the back and my creative side (something I have back burnered most of my life) is becoming more prominent.   

Not only am I exercising and meditating daily again, but I am also spend more time doing creative things now and finding myself much more relaxed.    I feel very content overall.  I have very little desire to push myself to do lots of puzzles and games, etc. to try to keep my brain forming new connections anymore.    Somehow, I seem to be right where I should be right now.

My feeling is that as long as I am still capable of doing the things I need to do daily,  then I am doing as well as I need to be doing and don't need to (nor do I have any desire to) push myself to regain what I am losing.   Perhaps that is the dementia taking away my desire to fight it, I don't know.   All I know is that I feel like this less driven, more creative phase in my life feels like right where I am supposed to be right now.   Not something to resist or try to "fix."