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,


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.


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.