"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.

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 21^st, 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.

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."

I like this perspective

from http://www.selfgrowth.com/articles/wayne-dyers-cancer-journey-from-denial-to-love

"Dr. Dyer says that he never uses words like fight or attack or win when it comes to cancer because he believes that everything we fight weakens us and everything we support empowers us"

Dr. Wayne Dyer said that about his leukemia but I think that is a great attitude to take towards any disease including dementia!

I realize the popular view is that dementia is a terrible thing and that the right thing to do it to "fight" it but I have always disliked works like "fight" and "enemy," etc.    Dr. Dyer's words simply feel right to me.    I believe we should do all we can to support our body's optimal functioning and accept whatever happens as a venue for our spiritual growth instead of something to be upset about.

my new blog

I have been thinking about something one of my readers said to me a couple of months ago.   Since I don't make a lot of posts on this blog she was concerned about how I am doing, as she did not realize at that point that I am quite active on other parts of the web.

This is my "life with dementia blog."  Yes, I live with my dementia every day but my dementia is not my life.    There is far more to my life than that.     I love technology and scifi and fantasy and enjoy crafts and various computer games, among other things.  Indirectly they are part of my life with dementia insofar as I consciously keep myself engaged with them (even on days when it would be easier not to do so), as a means of "fighting" the dementia, of continually working to build new neural pathways in my brain to replace what I have lost by making sure I learn something new every day - and the best way I know how to do that is to focus on things that interest me.

Thus I have created a new blog which will run independently of this one, although there will be some tie ins.  For example, today's post on Stumblinn2 is about  CalenGoo which is something that helps greatly with my memory impairment by linking my Google Calendar to my Kindle Fire so that I get beeped at and also get messages on my Fire so that I don't forget important things like taking my meds, etc.

I will continue to use this blog to chronicle my life as a high functioning dementia patient and use my other blog for things that have no specific relation to dementia.   When I do a post on Stumblinn2 (such as today's post on Calengoo) which features a product that I use to deal with my memory impairment, I will note it on this blog also for those who are interested.  In general though, the two blogs will function independently of each other as they have different target audiences.

I have also just become an Amazon affiliate, since much of what I will be writing about on Stumblinn2 will be Amazon products considering that I use my Kindle Fire and Kindle Touch a minimum of 6 - 8 hours a day because they both help me to compensate in many ways in areas of my life that are now more of a challenge because of my dementia.  I am adding this note as I have never tried to monetize my dementia blog (that is not its purpose) but there will be an occasional link on here now that will link to Amazon, such as the Calengoo one above if, and only if, I mention a product that I personally find is a big help to me in coping with my own dementia symptoms.

Pinterest can be a real boon for the memory impaired

I do use Facebook, Twitter and Pinterest.   I am posting about them on my "life with dementia" themed blog because I have been slowly coming to a conclusion regarding the big three.    I tend to dread going to Facebook and Twitter because they tax my brain.   I have to wade through a lot of words out there to keep up with things such as what is going on in the dementia groups and the posts I follow for coupons, samples, useful deals on things we need, etc. to try to stress our budget.

More and more I find that when I want to relax, I turn to Pinterest as it involves so few words.   Just decide on a topic, create a board and pin as I please things I find that I want to remember or share with others.   Kind of like a very easy online digital scrapbook.

I have written in other posts how important I think it is to maintain one's sense of humor when one has a disease that is slowly destroying your brain causing "I can't believe I just did that" moments to be a normal part of daily life.    I think consciously seeking out humor is also very important to keep oneself emotionally balanced.    Sometimes I find something that tickles my funny bone and want to go back to it when I need a dose of "laughter yoga."    I have found Pinterest to be perfect for that now that videos can be pinned also.   I am very slowly adding to it a collection of my favorite clean humor videos, ones that are always guaranteed to make me laugh (such as Tim Conway's dentist routine).

I am thrilled with the results.   No more trying sort through bookmarks or notes when I want to find my favorite funny videos.    I now need to go to only one place to make my selection when I need a dose of laughter.

I have also been wanting to try a new craft but been held back as (1) I am not up to learning something completely new and complicated from scratch (even with the boost from the coconut oil) and (2) our household budget really can't fit in a lot of luxury items - i.e., things that are not food, utilities, mortgage, etc.     I found a perfect solution in "plarn" since I already know how to crochet, have various size crochet hooks and we have plenty of plastic bags.    Pinterest has also turned out to be a great place to store pictures I find of various plarn projects that interest me.

While it was not created for the memory impaired, I think Pinterest can be a great tool for us as it is so much simpler to work with pictures on boards categorized by topic rather than bookmarking things we want to remember (and then trying to remember that we bookmarked them and how we tagged them) or posting them to Facebook and hoping we will remember we did so and going back to scroll through our timeline to find them again.

Coconut Oil

At my last visit (a couple of months ago), my neurologist wanted to put me on Axona.   I ruled that one out pretty quickly because of (1) the cost and (2) it is supposed to work by encouraging the brain to use ketones rather than glucose for fuel.

I have lived my whole life with severe osteoporosis because of my osteogenesis imperfecta so I have a reasonable knowledge of what makes osteoporosis worse and one of the things is having ketones running around in one's body as the more ketones you have, the more minerals necessary for bone health you excrete in your urine.   Since Osteogenesis Imperfecta is a collagen deficiency disease (meaning that minerals don't adhere to my bones properly), the last thing in the world I want is to have something (ketones) running around my body that will encourage my body to excrete even more of the bone  health minerals I have so much trouble holding on to anyway.

Research on Axona though led my housemate and I to the reports on coconut oil being beneficial for dementia.    It is far cheaper than the Axona and has enough other benefits, that we decided it was worth discussing with my PCP.   He was in favor of it and even recommended a book (Power Up Your Brain) for me to read which supports using coconut oil.    

After I finished the book, I started taking Nature's Way Coconut Oil-extra virgin (not trying to promote a specific brand here, only putting in the name in case anyone wants the specifics) this past Friday, alternating between one to two tablespoons a day, and I don't know if I am imagining it but I seem to be mentally clearer today than I have been in quite awhile.

Perhaps, I am just having a good day - time will tell.    I'll report back in a few weeks on whether I am having more mentally clear days (days when I can easily do things like sort and file things, etc. where I have to make decisions on what to keep and what goes where) and if I notice any other benefits (such as to my memory) as I keep taking it daily.