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

Saturday, May 26, 2012

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.

Friday, May 25, 2012

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.

Monday, May 21, 2012

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.

Tuesday, May 8, 2012

Dementia and spirituality

There was a discussion on a dementia group today that made me do some thinking.  My conclusion is that while it is important for everyone to make actually living their spiritual values the focus of their life, it is even more important for those with a dementia diagnosis.

The reason I believe this is that it is likely that no matter how many things we do to try to take advantage of the new findings in neuroplasticity* to rebuild our brains, chances are we will lose more functioning over time, albeit more slowly than if we didn't try to regain lost capacity.    I truly believe if that we train our brains to focus on thoughts in line with our spiritual beliefs while we still are functional enough to be aware that we chose our thoughts and that our behaviors and emotions are based on the thoughts that we chose, then choosing positive loving thoughts will be so engrained in us that even as we deteriorate, we will be more likely to continue to interact with our caretakers and others around us in in a loving, rather than bitter, resentful way.

I am glad that I have never seen myself as a victim of or suffering from dementia.   Having dementia is not a choice for me, but not suffering from it is.   We suffer when we resist what is, see what happens to us in life as unfair.   When we remain aware at all times that everything that happens is an opportunity for learning and spiritual growth, then there is no suffering.    (That does not mean there are no challenges to face as without them, there would be no growth.)

I have known from the beginning that my dementia is a learning opportunity for me, a vehicle for continued spiritual growth.   I pray that the daily work I do on myself (including my daily gratitude practice) will allow me to always view my dementia and osteogenesis imperfecta, etc. this way.  No matter what happens to my human body as time goes on, if I can remember that "we are not human beings having a spiritual experience, we are spiritual beings having a human experience," I will be fine.

*I have another thick book on  neuroplasticity at home but I am not at home atm to get the title but I do have with me on my vacation a book that my doctor recommended "Power Up Your Brain  The Neuroscience of Enlightenment" which also talks a lot about the research being done in neuroplasticity to show that even older and/or damaged brains can regain a lot of function.

Friday, May 4, 2012

Thank Goodness for Evernote

I am leaving on a trip for a week today.   I have been working for quite awhile on my list of what I need to take.   I no longer trust myself to remember even the most crucial things on days when there is a lot going on as there is today.

I have found Evernote to be a lifesaver.   I can access it via the web, have a copy on my desktop and on my Kindle Fire.    It has a very easy to use checklist feature.  So over the past few weeks, I have used it to put together a very detailed checklist of everything that I need to take so that this morning instead of stressing out about "what am I forgetting?" I can just go down the list and check off each thing to make sure it is not being left behind.

My desktop will be in the shop while I am away but I will have both my portable and my Kindle Fire with me and they will both have access to the same list so when packing to come home, I can use the same list to make sure I assemble everything that needs to come back with me.

Thank you Evernote for creating a very easy to learn how to use application that is a lifesaver for memory (and learning) impaired folks.    (Preparing for this trip is just one of the many ways I have found Evernote to be a major help with things that I would have otherwise forgotten as I go about my daily life.)