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

Tuesday, November 22, 2011

Studies show Meditation benefits re dementia

Yes, it is always interesting when they come out with a new medicine to reduce the chances of dementia, delay progression once it has started or that shows progress reversing it.     I am not a fan of medication though so I smiled when I read  Is meditation the push-up for the brain?  

It talks about studies that show
  • specific regions in the brains of long-term meditators were larger and had more gray matter than the brains of individuals in a control group
  • people who meditate also have stronger connections between brain regions and show less age-related brain atrophy.

"They found that the differences between meditators and controls are not confined to a particular core region of the brain but involve large-scale networks that include the frontal, temporal, parietal and occipital lobes and the anterior corpus callosum, as well as limbic structures and the brain stem."

A nice safe non-drug (and thus, no harmful side effects), free to use way to reduce the chances of dementia, delay progression once it has started and possibly even reverse it to at least some degree once it has started.

No, I am not suggesting that those in later stages of dementia could be taught to meditate but those in early and perhaps even some in mid stage dementia could be.    Even better, more folks could start to do so while their brains are still healthy, and thus hopefully reduce how many new cases of dementia occur in the future.

Friday, November 11, 2011


Just a quick status update:

  1. Orthopedic surgeon diagnosed wrist issues as post fracture complications and is sending me for physical therapy.   Will recheck wrist late December.   Still have only 50% movement range and is still swollen.   Such is life with osteogenesis imperfecta.
  2. Math seems to be down to about a third grade level.  Need to use calculator for almost anything involving two digits (or more).    Noticing it is taking me longer sometimes to react to what is happening around me such as a phone ringing.   Thankfully my verbal skills are still strong.   Still reading books many hours a day to try to keep them for as long as I can.   Thank God for cognitive reserve.
  3. Woke up from an intense dream in which I was working as an underwater researcher.  The research project involved trying to set fire to a Gore-Tex jacket and seeing how long it would take to burn through.   Made me wonder if as the dementia advances my waking mind would become like the dream one where it made perfect sense in the dream to be doing a research project on something my waking mind says is illogical - using fire underwater.

Friday, September 23, 2011

Limited mental energy

From  "How much is too much: focusing on relevant components while spreading dementia awareness" :

"For me, everything’s in queue for my time and energy– things I want to learn and do, things I need to learn and do–and often it is just a toss-up: should I read that article? See that movie? Catch up with friend ABC? Or take a walk or eat ice cream instead?  I guess it’s the same for others, given how most people seem squeezed for time, just about managing to carry on."

The funny thing is as a primarily homebound dementia patient, I should seemingly have loads of time to do things, yet I feel the same way as the author in the previous paragraph about the limitations.  Although my limitations are not because of the amount of time I have available to do things but because of the amount of time my brain can handle doing them before it gets tired and I start to lose focus.

Even more so now while any response I make to what I read has to be done one handed until my right wrist heals.   Am finding that is draining me even more, causing me to put off things like keeping current on most of the blogs I usually read, etc.

Monday, September 19, 2011

Pat Robertson says divorcing spouse with dementia is fine

Rev. Katie at "Moving in with Dementia" has written an excellent response to Pat Robertson says divorcing spouse with dementia is fine because it is a kind of death (thus not really breaking the "to death do us part" marriage vow.

As I said in my comment on her post:

Thank you for this post. I saw his article too and was as appalled by it as you are. I had wanted to blog about it too but am not up to doing much blogging yet while my fractured wrist is still healing.

Since you did such a terrific post on it, I am just going to do a fast mini post to point folks to this blog post instead.

Monday, September 12, 2011

Dementia and spirituality

I'm not posting much right now while I wait for yet another wrist fracture to heal (is just one of my usual spontaneous micro fractures that I get because of my osteogenesis imperfecta) but I did want to do one fast post to point out Bruce's current post, God is Within,  at Living with Dementia for anyone who might not have seen it.

As I said in my comment on his post, I think that is a very important post for anyone who is working with someone with dementia to see.    Bruce stated things so well in his post that the only thing I will add is that as I deal with a variety of physical issues including, but not limited to, my dementia, I continually remind myself that it is not me who has these things but my body and I am not my body.   I am an eternal soul simply using this body as a dwelling place for this lifetime on earth.    As long as I am able to keep my eye on the larger picture then I can use the things my body is going through as a vehicle for continued spiritual growth.  The lessons I can learn from what this body is experiencing will remain with me long after I have left this body behind.

Friday, September 2, 2011

Memory and Identity

On Monday, August 29th, Cellar Guy wrote a post titled "Forgotten Bread."   I was rather foggy when I read it but I got enough out of it to know there was the seed of a post for my blog in it, so I made a note to go back and reread it on a day when my head was a bit clearer.

Cellar Guy's post talks about how what happens to us makes us who we are and how what we end up remembering of past events shows us what is most important.    I wondered how that pertains to those of us with dementia though who get to the point like me where we cannot remember our own address and phone number or like  Rev. Katie's mother in Moving in With Dementia where we lose our ability to sign our name or eventually (as happens to everyone in later stages of dementia) we no longer recognize our loved ones.

My initial reaction today when rereading Cellar Guy's post was how does losing everything from our phone number and address to ability to sign our name to knowing  who our loved ones are show us what is most important now and then I remembered reading something Ram Dass wrote when talking about people living with dementia - that we really need very little of our past to do what matters most "Be Here Now."    I can see the truth and the beauty in that.

Thank you, Cellar Guy, for helping jog a memory that put things in perspective for me.

Sunday, August 28, 2011

on the lighter side

Since some of the posts in this blog will be less than cheerful, I am just taking a moment to post the url of my Live Journal for anyone who wants to see my lighter side.    http://angel-has-fun.livejournal.com/ is my happiness/gratitude journal.  It is where I post the the things that make me smile, laugh or chuckle or inspire me.

My Side of The Fence

Years ago, when I was first diagnosed, I had a blog called "My Side of the Fence," about life in the early stages of early onset dementia.    I just read a heartbreaking blog post from Mary at "Down The Rabbit Hole," called "Another piece of my husband is now gone forever."

It made me think of the title of my old blog because as the extensive comment I left on that post shows, this is one more example of the differences between those with dementia and those without.    As I wrote in part of my comment on that post:

"I can understand completely how your husband felt with the types of games you described as I would struggle with that type too. I would not rule out all board games for him (he might be ok with ones that only requiring rolling the dice and moving the marker a certain number of squares) but I would not remotely suggest subjecting any dementia patient to the type of games you were describing as they would be sheer torture. I know that was not remotely your intent, that you were trying to get him to share the "fun," but even just reading what you were writing made me recoil thinking of how much I would struggle with something like that myself and I am still considered "high functioning" for a dementia patient."

I know those without dementia can consider something like that fun and enjoyable just as I remember the days when I used to enjoy things such as going to live theatre or an occasional movie or live concert or an amusement park or a fair but now just the thought of such things makes me recoil as I know how badly messed up I would be by that much stimulation.   Yet these are things that millions of folks without dementia do regularly for enjoyment.

For those caretakers who read me, please remember when planning things for your loved one, the view from our side of the fence is very different.   Even if we used to love it, if it is more than our brain can handle now, what you planned for us as fun will be a very different (and very non enjoyable experience for us).    Let the patient take the lead in showing you what they can handle (and enjoy) whenever possible please.   Both of you will find much more pleasure in life that way.

Tuesday, August 23, 2011

Better late than never

I had an "ah ha" moment this morning.   A few days ago in "ok, so I'm messy now," I wrote about my roommate watching me spill my morning coffee as I was making it and indicated that that is something that I have come to take for granted.

This morning, I suddenly realized why I have been making a mess every morning when I make my coffee.   I knew enough to not put in enough soy milk to have the liquid go over the rim of the cup.   I knew that there was a decent sized chip out of the side of the cup. (Yes, I could use a different cup but this has been my favorite for years.   It is comforting for me to start my mornings with.)

The part that had not connected for me was that what I need to now do (the chip is only a few months old) is only fill the cup up to below the bottom of where the chip is as what was happening each morning is that I was trying to keep the level of liquid below the rim of the cup and it was spilling out the side through the opening where the chip is.     This morning, it finally hit me what was going on.    

Ok, so I'm no longer the brightest bulb in the pack (yes, there was a time that my IQ literally tested in the genius range) but thought I would post this to give caretakers who read it a peek into how dementia impacts a brain - things that would be obvious to a "normal" brain just don't necessarily click with a brain that is full of holes (literally) because of dementia destroying pieces of it.     

Always a silver lining - I did get a good chuckle out of it when I finally figured out what is happening.   As I have said before, as long as I can continue to laugh at the things I do because of the dementia, I will be fine.

Monday, August 22, 2011

Finding Laughter in unexpected Places

I have always loved the way Norman Cousins used laughter as a natural form of pain relief.    As my pain from various things is increasing, I am turning more to funny videos, etc. for regular doses of laughter.

As my balance problems have been increasing, I have been getting much more leery about going out for walks alone so have been getting most of my exercise instead from doing a lot of "swalking" (swim walking) in the pool instead.

Today I got a good belly laugh while out in the pool.    A bird started very clearly saying "uh uh."   That made me chuckle and I couldn't resist saying it back to the bird.   The bird replied to my "uh uh" with "ahhhh."   After a few times back and forth with exchanging alternating "uh uh"'s and "ahhhh"'s and "oh"'s with the bird, I sang "ting tang walla walla bing bang" in a "so there" tone of voice to the bird.     I cracked up when the bird when silent after that as if to tell me that he (or she) couldn't top that one.

No idea what type of bird it was but I loved the fact that I got to combine getting exercise, fresh air and a good healthy dose of laughter.

Saturday, August 20, 2011

ok, so I'm messy now

On August 9th, I wrote "ok, so I need a bib now."     I guess this is part two of that post.

A few mornings ago, my roommate watched me make my morning coffee.   She commented on the mess I made on the counter from the coffee spilling.   I remember thinking "yeah, so?" To me, wearing my food (on my clothes or my face) or spilling it when preparing it just doesn't phase me at all anymore.   I take it as much for granted as I take suddenly losing my balance when standing or walking (in fact, I rather suspect there is a connect between the fact that both are happening more often).

The way I see it, as long as I clean up my own messes (and I do) then there is nothing to get stressed about.   It just is what it is.  I know this is one of the things that causes caretakers to despair, but from a patient point of view it is actually rather nice to not feel the need to get constantly bent out of shape over every little thing.

I figure as long as I care about the important things (like making sure I pay close attention when I have something on the stove) where actual harm to someone could result then I am still doing fine.

Monday, August 15, 2011

Bucket List for a dementia patient

I have to confess at the start of this post that I am not now and have never been much of a movie watcher.   Thus I only just learned now (from Wikepedia) what a Bucket List is.    That got me to thinking as technically anyone with dementia has a terminal diagnosis but we are also in a position where our ability to do most of the types of things folks seem to put on bucket lists will be severely limited long before we reach the ends of our lives.

So question for others with dementia:   do you have a bucket list and if so, what types of things are on it?

For myself, the answer is very simple:    Go through all of my possessions and get rid of everything I no longer need and organize the rest so that I can easily find the things I do need and when I can  no longer do my own self care, my roommate / caretaker will know exactly what I have and where it is.

That may not sound very exciting to those whose list includes sky diving and mountain climbing and bungee jumping, etc. but at this point in my life, I am finding the most important thing to me is to simplify my life as much as possible.   I used to thrive on being busy, but now I feel more and more of a need to have my life as simple and calm as possible

Friday, August 12, 2011

Caretaker Patient Symbiosis

In "Serendipity and Synchronicity," I wrote about two of my favorite words.   Today, I have a third "S" word to add to the list:  .

Most of the blogs I read are dementia related but on my travels, I have stumbled across a few blogs where the personality of the author of the blog keeps me reading, even though the topic would not normally be on my reading list.     Exorphin Junkie falls into that category.    Yesterday's EJ post on "Mouse Bread"  made me realize that Symbiotic has to be added to my list of favorite words.

Even though the common view would be that the caretaker gives and the patient receives, I think the relationship is symbiotic as there have been a number of studies now that show that helping others benefits the helper in a variety of physical (including stimulating the immune system) and psychological ways.     I would add that I believe the caretaker also receives many opportunities for spiritual growth when caring for someone with a progressive, degenerative, incurable, terminal prognosis.

Thursday, August 11, 2011

Exelon vs. rivestagamine?

I switched from Exelon to rivestagamine around the end of last year because by getting 90 days of the latter via Humana's mail order instead of the former monthly from the pharmacy, I have no monthly cost for it (until I hit the donut hole).   However, I have noticed more of a decline in various areas over the last six months or so and I am wondering if it was time for me to take another downturn anyway or might it have to do with the switch to the generic.

Anyone have any experience going from Exelon to rivestagamine?


Wednesday, August 10, 2011

I choose stepping stone

In a comment on my post  "Blogs That Inspire"    where I asked readers for suggestions for blogs that inspire them, Karen suggested that I read CoffeeandChemo  .   I started to read it today.    The blog goes back to 2007.   For now at least I am starting with January 2009 to get a feel for the last two years of the author's life prior to her death from cancer.    I am glad Karen recommended the blog (and would still love to get more recommendations for blogs that inspire).

The January 26, 2009 entry states:

"Though I am religious, and I believe in God (most of the time), I am not one of these super religious types who believes that everything that happens is for the best. I don't believe that God did me any favors by giving me cancer."

That reminded me of something that I have been wanting to write about on here.    You will never see me call myself a victim (of dementia or anything else) or a dementia sufferer.      I absolutely believe that all of life's challenges including loss of loved ones, loss of home, job, terminal diseases, etc. are gifts to us as it during life's hardest times that we achieve our greatest periods of spiritual growth.  

I see these types of things as a pat on the back, a "you are stronger than you think you are, you have handled a lot already and I know you can handle this too.   You will be even stronger for having done so, and better able to empathize with others in the same position and thus help them too" message.     Sure we might feel like the pat on the back is so hard that it knocks us to our knees but that is the best position for prayer anyway.

If we keep our spiritual perspective, then good has to come out of anything that happens to us.     If we focus only on what we have lost or are losing and become guest of honor at our own "oh woe, is me, this is so unfair" pity party, we will lose precious opportunities for our own spiritual growth including the opportunity to be able to reach out to offer inspiration and strength to others.   

We cannot always control what happens to us but we can choose how we will respond to what happens!     We can choose our words and our thoughts.  Since our emotions are controlled by our words and thoughts, we can choose to continually return to a place of  internal happiness no matter what our external circumstances are.     At the top of this blog is one of my favorite sayings:

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

I choose stepping stone!

Tuesday, August 9, 2011

ok, so I need a bib ...

About a week or so ago, I was in my room eating and my roommate/caretaker called out to me to tell me something.   Without a second thought, I got up and opened the door to see what she wanted.    She looked up at me and seemed to be rather shocked that there was a lot of food on my face around my mouth and chin.    My reaction to that was basically "yes, so?" as that has now become the norm for me.   Yes, I know my eating is much messier now and have even gone looking for the bibs I once had before my Exelon as I do need them again but it was still a surprise to me when she mentioned it as I take it so much for granted now.

Since she so rarely ever sees me actually eating (I make my food in the kitchen and then take it into my room (where I spend about 90 - 95% of my time alone most days) to eat) she did not realize how much food seems to end up on me rather than in me now.   (I also do my own laundry.)    Her surprise was yet another wake up call for me that I am slipping further.

That is one of the benefits of not living alone, having even intermittent contact with another human being as I go about my daily life does provide a mirror for me to better gauge the progression of my dementia as someone else notices things I have started to take for granted.

Sunday, August 7, 2011

Fear of the dementia label

Yesterday I wrote about the fact that most of my social life occurs on Second Life.   This is because since I am primarily homebound, 98% of the time my only in person contact with other humans is with my roommate/caretaker and since she is having a rough time with a variety of diagnosis herself including fibromyalgia and migraines, there are days when I have little to no contact at all with her as she is very sensitive to light and to sounds including the human voice and the sound of my typing.   Thus she often escapes to her quiet, darkened room for large periods of time to seek relief from the pain that sound and light exacerbate for her.

Thankfully, I have always easily made friends and have developed a wide social network on Second Life since 2005.   Now comes the hard part.     Only a fraction of those who know me on Second Life are aware of my dementia diagnosis as online it is much easier to disguise.    It is not that I want to deceive people but that I am all too aware of how people react to the word "dementia."   I want them to get to know me first before I have that label attached to me.

The hard part?   I am reaching the point where it is becoming harder to "appear normal" even online.     When I write a blog post, I have time to proofread it and catch at least most of my errors.   When you are in an ongoing conversation on Second Life things are moving much faster (especially when in a chat with multiple others) and there is far less time for proofreading and editing what you type.   Some errrors can be written off as normal typos that everyone makes but things like using the wrong word for something are more noticeable indicators that something is not as it should be.

Additionally, as my math abilities continue to deteriorate, I have had more often to reach out to others for assistance with basic things (such as yesterday having to ask someone to help me convert the time difference between Hawaii and Florida so that I could understand when an event in Hawaii would occur in my local time).     "Normal" people don't need to ask for that type of assistance.    "Normal" people also can do things like understand how to solve the puzzles in some of the Second Life games such as Tiny Empires.    When others realize that I cannot do so and try to explain to me how the puzzle works, they hit up against my inability to comprehend what they are saying and realize that no matter how functional I may seem to be otherwise, I am not "normal."

So I have reached the point of deciding it is time for me to come fully "out of the closet" with my dementia diagnosis.   Instead of continuing to try to appear "normal," which is becoming more and more of a struggle for me now, I am blogging freely about my diagnosis and sharing my blog with many who have known me online for years without knowing I am a dementia patient.    I am hoping that who I am, who they have known for years, will count for more than the dementia label and friendships will continue as they were for as long as I am able to remain online.

Saturday, August 6, 2011

What do you miss?

As I have written previously, having my days structured is very important to me.   That includes even such things as spending little to no time on Second Life (my primary social outlet) until later in the day usually as SL takes a lot out of me so I like to get everything else for the day done first.   This morning I logged into SL for what I had thought would be five minutes to check some things in inventory and ended up being on for several hours.    Thus I am feeling very drained right now and not up to writing much.

On my last post, NewKidOntheBlogg (I love that name) invited me to visit her blog at Plant City Lady and Friends (her blog about her husband who has been diagnosed with mixed dementia).   I have spent some time there and will definitely spend more time there.   One of the topics I have been discussing with her there is that her husband can still drive now but she is not sure when he will have to stop driving.    I had to stop driving over a decade ago but don't miss that as much as I miss no longer being able to clown.  (Yes, I was a real life full grease paint clown.)

For those with dementia, what do you miss the most?     Or for caretakers whose loved ones are no longer online, what activity has the dementia taken from them that they said they miss the most?   I don't mean to be rude but I am really interested in hearing the reply from the dementia patient side, not what it is the caretaker misses the most that their loved one used to do but what does the patient his or herself miss the most as I strongly suspect that they are not one in the same in many instances.

Friday, August 5, 2011

Blogs that inspire

Yesterday, I wrote about the using the web as a form of virtual hobbies that require no physical possessions.     Another thing I use it for is inspiration.   I love to read blogs by others whose life is not ideal but whose approach to life (consciously or subconsciously) is

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

I am a DNR  because having already spent 2 1/2 years in a nursing home, I do not want to go through that again and certainly do not want to end my life in one.   Thus if something comes along that will end my life, I don't want anyone bringing me back so that I have to go through the end stages of dementia.      However, while I am am alive, I want my focus to be on my quality of life.

As Silverfox so perfectly put it, "  I remember what I remember. "   I am not going to beat myself up over what the disease has taken from me but will instead be grateful for what it has not (yet) taken.    As the Cancer Curmudgeon indicated in " Can your blog save your life? ," blogging can be a very healthy outlet for one with a terminal diagnosis.

I love to read inspiring blogs by others who instead of seeing themselves as a victim of their diseases acknowledge that while they cannot always control what happens to them, they can control how they respond  and strive to live the best life they can.    

Do you know of blogs like that?   Ones that personally inspire you?   Would you share them with me?    Thank you.

Thursday, August 4, 2011

Internet Benefits for a Dementia Patient

After giving me a Pick's Disease diagnosis, my first neurologist basically wrote me off.   He held up no hope that I would do anything other than deteriorate from that point on and did not mention that there were medications like Exelon that could help me regain some of what I had lost.      Long story short, I spent 2 1/2 years in a nursing home until a doctor there said "lets try some things and see if we can improve your quality of life."     Thanks to Exelon, I was able to leave the nursing home.

I got rid of  98% of my belongings prior to admission in the nursing home.  Since leaving the nursing home in 2006, my home has been a rented bedroom in a few different places - i.e, not a lot of storage space.
Thus for someone like me, who has had to reduce possessions, has very little room to own a lot of extra things, very little money for them anyway (my roommate/caretaker has fibromyalgia and has not been able to work for several years so household finances are tight), but who still has interest in both old hobbies and learning about new ones, the internet is a lifesaver.

For example, I gave away my collection of old postcards and cake decorating supplies plus almost all of my clowning materials including my magic, face painting, puppetry supplies,  etc. but I still can vicariously enjoy my interests on web sites such as  The Best Hearts are Crunchy  (old postcards) and Larry Crews (magic) and vicariously travel along with others  via blogs like Zellerbok even though I am primarily homebound now in real life.

I very strongly credit the internet for helping me keep my cognitive reserve strong as it allows me to continue to participate to some degree in things that can no longer be a part of my "real life."

I would love to learn if you are living with dementia yourself or have a loved one who is, how does the internet improve your quality of life (for the patient) or that of your loved one?

Wednesday, August 3, 2011

Planner works only if

My daily planners helps me so much but it works only if I remember to write things down on it.   I don't need to write down my usual daily activities as I do a pretty good job at my normal daily routine but if I don't write down anything that is not a daily activity, there is a very good chance that all thoughts of it will drift away from me and float off through a hole in the ozone.

So where can I buy a daily planner that will remind me of what I need to write in it so that I don't forget?   (Given that my roommate/caretaker has memory problems that are as signficant as mine because of her fibromyalgia, this is a serious issue as it means medical things like tests, etc. can slip through the cracks.)

I have written in other posts on here about some of my word issues (such as often typing homonymns) but lately something new is occurring.   For example, yesterday I said that I was having "a fit of snerzes," instead of a sneezing fit.    Both odd wording and non word in one sentence.    It is not the first time lately that I have realized that I used a non word.    No idea why my brain has decided it is time to start creating its own language but I guess I'll go along for the ride. 

It does keep life interesting when you never know what will come out of your mouth (or your pen or your keyboard).

Tuesday, August 2, 2011

Serendipity and Synchronicity

Serendipity and Synchronicity - these are two of my favorite words and something I put on the plus side of life with dementia.  Yes, you read me right, I definitely believe there are pluses to life with dementia.   That does not mean that I would not have preferred to have these pluses some other way.   You will never hear me say that dementia is something one should want to have.     However, if one does have it, then I think it is important to not get caught up in a "oh woe is me" mindset.

I used to be super-achiever woman.   Back in my pre-dementia days it was not uncommon for me to hear things like "you do more in one day, then I do in three days."      Now I accomplish less in three days than many folks do in one day.    And that's ok.     Now my focus is on quality and not quantity in all parts of my life.

That is where serendipity and synchronicity come into play.   Now that my life is much more laid back, I often stumble upon things that I would have missed before in my rush to fit as much as possible into every minute of every day.

Yes, things like losing my math skills, having to depend on someone else anytime I need to be taken somewhere, etc. are frustrating and yet, I have to say that in some ways I am enjoying life now more than I ever did both because I no longer feel so driven (if I get through the 3 or 4 things on my "to do" list each day (versus the 40 to 50 things I used to have on it), I am content now) and because knowing that as time progresses I will continue to lose more of my independence - thus making everything I can do now (feed myself, dress myself, walk, talk, even take an eyelash out of my eye) far more precious to me than it was before my diagnosis when I took such things so much for granted. 

Monday, August 1, 2011

Balancing how much I can do in one day

Not going to write much today as I had to balance checking account and do some work figuring out where we are on household finances for the month.

My roommate/caretaker and I divide household responsibilities.   She is not in very good shape herself, but she can drive and I cannot so she takes responsibility for going out to get the groceries and driving me someplace when it is important that I be present myself (mainly just the doctor's office and medical tests).     She also takes care of me while I am recovering after a fall.  (My blood pressure drops, causing me to pass out and fall several times a year on average.)

My responsibilities are to manage our finances and pay the bills (yes, I have trouble with math but I can still balance my checking account by using a calculator to do the math and then making sure it balances back to the bank figure) and do things like the dishes and take out the garbage.

Things like paying the checkbook and bills seem to use the same part of my brain that doing things like writing blog entries does so I'm not up for writing much else today.

Sunday, July 31, 2011

What Happens to Blogs By Dementia Patients?

I know that on good days, I can easily function at a fairly high level for up to a couple of hours.    After that though, if I don't take a rest break the type of focused concentration necessary for reading comprehension and writing a cohesive blog post feels like slogging through molasses.   On bad days, I know I need to lower my standards for what I expect of myself.     The best I can do on those days is to be honest with others that it is not a good day for me and let them know I am giving them the best I can.

As our dementias progresses, we will find ourselves with more days when focusing our attention takes more than we feel we have to give. When that happens, we become less willing to force ourselves to do the type of work involved in maintaining a blog.    Some blog writers will find that the inexorable disease progression fills them with negativity as they realize no matter how hard they fight, the dementia will always win in the end.    They begin to rebel against anything that makes them think about their dementias, which, of course, includes writing a blog about their journey.

Eventually every blog written  by a dementia patient will come to an end, such is the nature of our disease.   Before they reach the point of drifting fully away from their blogs, many may do what Bruce did, announce that they need to step back from their blog for a bit but leave the option open to return when and as they feel able.   I was very glad to see that Bruce has put up a new post and look forward to seeing more from him in the future.

As I begin my own renewed dementia blog (after a break of about 8 years), I am trying to find the best way to write a blog that will be useful for others to read (given how much it takes out of me to do it, there is no point in writing it if it won't  help others) while figuring out how to find the energy to do it while still maintaining the energy for the other things I enjoy that all seem to tap into the same "pool" of resources in my brain.

I found an interesting post on blogging energy units.   I am curious what others (those with dementia and those without) think of this concept.   Do you also find that you can only do a certain amount of blog writing/reading/Facebook, etc. before your brain says "ok, enough of that, time to move on to something else"?

Saturday, July 30, 2011

Living with Two Rare Diseases

Daily life with progressing "idiopathic dementia" is interesting in and of itself.   When you throw another rare disease (Osteogenesis Imperfecta) into the mix, it guarantees that your life will never be boring.   

Courtesy of the dementia, I do things such as walk into walls, lose my balance and even pass out at the drop of a hat when my blood pressure suddenly plummets (my body has problems autoregulating in several areas).     Thanks to the Osteogenesis Imperfecta (OI), I was in essence born with osteoporosis which years ago progressed to severe osteoporosis. It is not uncommon for me to fracture with little stress, just normal use of a limb.   The added falls from the dementia simply increase my risk of fractures and other injuries.

As part of the OI, I have had scoliosis since I was a young child.   About a year ago, one of my falls from passing out when my blood pressure dropped suddenly caused me to further injure my back.   I am now so crooked that my right shoulder is several inches higher than my left and in constant pain anytime I am doing anything other than sitting and resting my back against some type of support.     X-rays show that the arthritis in my back is also increasing.    Height measurement at the doctor's office last week shows I am down to 4' 7 1/2", which means I have lost two inches in the past year - a combination of the additional back injury and further compression of my spine.

Due to the repeated injuries from the OI throughout my life (I have had over 70 fractures), I have arthritis in a variety of places in my body and bone scans show that I have lost a lot of bone in the ball and socket joints in both hips and will need both replaced if I live long enough.

How does this impact my dementia?   It reduces further my ability to be active, and remaining as active as possible for as long as possible has been shown to slow down the progression of dementias by keeping our brains stimulated and continuing to build new pathways to replace what is being lost.    On days like today when my carpal tunnel* is acting up, it reduces my online time and 98% of my social life is online since I am primarily homebound and often go a month or more with no in person contact with anyone other than my roommate/caretaker.

*OI is in essence a collagen deficiency disease.  It means that any system in my body that is dependent on collagen is going to be weakened thus I am much more susceptible to things like carpal tunnel also.

My comment on Twitter yesterday sums up what life with dementia and OI is like for me:   "Two things get me through each day, my gratitude practice and humor - being thankful for what goes right and able to laugh at what does not."

Friday, July 29, 2011

Cognitive Reserve Can Make It Harder to Get a Diagnosis in Early Onset Dementia

I found this blog entry about early onset Alzheimer's very interesting.   Unlike me, Brian was apparently a numbers whiz when he began to deal with the effects of dementia.   Just as my being an avid reader since I was a very young child (see my Cognitive Reserve post) seems to have given me some protection against how much verbal (written and spoken) ability I likely would have otherwise lost by now, Brian's facility with numbers seems to have given him a mathematical cognitive reserve as ten years after his symptoms began to appear his math skills remain sharp and he works "intricate number puzzles" for pleasure.

Given how hard I had to fight to get the neurologists to take me seriously that something was going wrong in my brain because I could still speak and write so well, I am hoping that this news about the role that cognitive reserve plays about slowing down the loss of the areas in which we have always been strongest (in my case words, in Brian's case math) will make its way into the neurological community and make it less frustrating for those of us who know something is going very wrong in our brain.

It is hard enough to cope with the symptoms of early onset dementia when trying to hold down a job and live a normal life even as you are having to compensate more and more each day to be able to continue to do routine things, without having to fight the doctors to prove that "no, I am not depressed.  No, I don't have a psychiatric illness.  Something is going very wrong in how my brain functions."

I have also learned that for myself and others like me who once had a genius level IQ, it is hard to be taken seriously by the neurologists as while we can tell that we are losing ground, we might have only deteriorated to the point of now testing at a "normal" level and it is hard for the neurologists to believe that there is something wrong with someone who tests normal.     I wish neurologists would look at deterioration within an individual instead of only comparing someone to the general population to decide whether or not they should brush you off as having psychological problems.

I can only remain thankful for tests like CT scans, MRIs, Pet scans, etc. as once I persisted enough to finally get the doctors to order the tests for me, they had the proof I need that I was telling them the truth - my problem was not depression (yes, I was stressed and frustrated at having to fight to be believed, but not depressed) but actual physical deterioration of my brain as shown very clearly by things like how many black spots there are on my scans where parts of my brain have simply atrophied.

Thursday, July 28, 2011

I don't do well with schedule changes

Many people would be bored by my daily life as I am 98% homebound but this daily sameness of routine actually works well for me.  I am usually only taken out once every two to three months for a doctor appointment or on rare occasions a trip to the library. (I can ask to be taken to the library at any time, but mostly just order the books online for my housemate/caretaker to pick up when she runs errands).   Every now and then another appointment comes up that I have to go to also.

This has been one of those rare times when I went out twice in less than one week (doctor appointment on July 22nd and social service agency appointment on July 25th).    The end result of that and a few things that happened here at home in the last week including the cat coming in and stridently demanding to be fed while I was asleep (takes me a long time to get to sleep and is hard to fall back asleep when I am woken up) was that two days in the past week I forgot to take one of my two daily doses of Exelon.   

Missing two doses within three days combined with my schedule being off for a variety of reasons this past week is making itself felt today.   It was exacerbated by the lawn mower people coming early this morning as even on a good day, I do not do well in the presence of loud, harsh noises.   I am making more mistakes than usual just trying to get through the day, so no thought out post today.   I will try to post each day for as long as I am able to do so, but some days will be like today - not the best day for me to right a thoughtful cohesive post and on those days, I will just report what the day is like for me.

Hopefully even that will be helpful for any who read me as I am assuming only those interested in what life with early onset dementia is like will read me.

Wednesday, July 27, 2011

Mini Mental Status Exams

I think mini-mental status exams are written for those with Alzheimers which manifests differently in the early to mid stages than other dementias such as Picks or Lewy Body.   Thus one could be living with one of the rarer dementias and pass a mini-mental with flying colors as I have done many times. The one thing I have been told from the very beginning is that I definitely don't have Alzheimers.  I have some symptoms that are common with Picks' Disease and some with Lewy Body Disease which is why I now have an ideopathic dementia diagnosis.  

In the excellent article "A Picture of Pick's Disease From the Inside Out"   the author  (a former doctor, diagnosed with Picks Disease) talks about how even though he has continued to deteriorate, he has actually gotten better at  taking psychometric  tests because since they are the same each time, he has been able to learn what they entail and prepare himself for them.     

I have found myself frustrated with the written and verbal tests meant to determine my capabilities also, especially the mini-mental status exam.   

* Yes, I do know who the president is and what state I am in and how to draw a clock that shows 3 PM - but I can never remember my own phone number and often have to look at a piece of mail I received to figure out my address.    

* Yes, I can subtract 7  from 100 but I can no longer figure out how to do math word problems or long division or do math with fractions.     

* Yes, I know how to form a silly picture in my mind of the three words you just gave me since I know you are going to ask me again in a few minutes what the words are and that by remembering the silly picture I will remember the words.     

But if you ask me five minutes after I put down the book I have been reading for the  past hour who the three most important characters in it are, I will be lucky if I can give you the name of one of them unless it is a book in a series that I have read a lot of over the years.

I know Alzheimers is the most common dementia but I wish they wouldn't try to evaluate all dementias with tests that seem to be meant for Alzheimers patients.     Thank goodness for CT scans and MRIs and Pet scans, etc. that show beyond a shadow of a doubt how extensive my brain damage is as without them, I would be in real trouble, still fighting to prove that something is very wrong in my brain if the only tests I was ever administered were the written (or verbal) tests that don't even begin to measure the types of deficits that I have.   

Tuesday, July 26, 2011

Word Substitution Errors

One of the first things that brought home to me that something very untoward was happening in my brain was when I frequently began to find myself typing homonyms of the word I meant such as "write" instead of "right."  

I have had a love affair with words since I was a young child.   (I was reading the New York Times when I was four years old.)    As I wrote about in my post on Cognitive Reserve, when I was formally tested by a psychologist when I was a Sophomore in High School, my reading comprehension and vocabulary levels were at the level expected of a College Professor.   Thus for me to find myself regularly using words incorrectly was not something that I could just brush off.

I try to always find the silver lining.   In this case it the fascinating glimpse into the workings of my brain that I get when I see the words that my brain chooses.   For example,

*  in my last post, I typed "paper" when I meant "patient."    In this case, the initial sounds of the word are the same.   I think my brain was also giving me a tongue in cheek error as in my Early Onset Dementia post, I had said "In neurologist speak, Ideopathic Dementia basically means 'ok, you clearly have dementia but you don't fit the pattern for any known dementia, so I'm just going to watch and see what happens with you and maybe someday I'll write a paper about this new dementia I discovered.'"

*  Another type of error that I often find myself making is doing things such as saying or typing  something like "Memorial Day" instead of something like "Labor Day" or replacing the word "stove" with the word "sink," etc.   i.e., my brain realizes the correct category but chooses the wrong data within that category.

Other times, I can find absolutely no rhyme or reason to the words my brain chooses to substitute but am simply glad that sometimes the choices end up being very funny, giving myself and others around me a good laugh.

I  encourage any who might find this page to leave a comment sharing with me how your dementia has impacted your verbal abilities (written and spoken) including, if you wish,  any that made you laugh,  as I love laughter.    

Monday, July 25, 2011

losing math skills

Having lived with an early onset dementia diagnosis for over a decade now, I have learned to accept most of the changes the disease has brought to my life.   If you had asked me two decades ago, what would have been the hardest for me to accept, I would have thought it would have been the loss of independence from no longer being able to drive.    The truth though is it is the ongoing loss of my math ability that is hardest for me to come to grips with.

Yesterday I wrote about learning about cognitive reserve and suspecting that perhaps my life long love of reading has given me some protection against the dementia.   I have lost some of my verbal ability but I do know from neurologists' reactions, that given the amount of brain damage my scans show, I am still doing amazingly well verbally.  

Math, however, has never been my strong point so I apparently don't have much reserve in that area and because of it I have had to face the shock of learning this past year that I am no longer capable of doing any type of complex long division.    I can still handle simple problems such as 99 / 3, but I became very frustrated with myself once day when I sat down with pen and paper to try to do long division that involved carrying numbers over.   I just could not make sense of the steps in the process.

I have been happy with the fact that at least I could still do simple addition and subtraction in my head and remembered my multiplication tables.   Yesterday I was brought up short again when I faced the problem of trying to figure out if I can do something 9 times in one day, how many days will it take me to do it 45 times.     I ended up having to pull up my online calculator to figure that one out.   This is a sign of further erosion of my math skills, and I don't like it one bit.

Many who know me only online in such ways as on Second Life, have no idea that I am a dementia paper as other than having problems with word substitution (which folks usually write off as my just making a typo), my verbal abilities are still so high.   Thus they become confused when the topics of things like word puzzles that involve math come up as they don't understand why I can't understand (no matter how much they try to explain it to me) something they consider so simple.   I dread situations like that as when they happen, the person figures out there is something "wrong" with me and it impacts our future interactions.

I do proofread my posts but I left the typo in the last paragraph on purpose as it is a perfect example of the type of word substitution error that I commonly make - in this case, typing "paper" when I meant "patient."    In my next post, I will write more about the types of word errors that have become very common for me over the past decade.

Sunday, July 24, 2011

Cognitive Reserve

I initially confuse every new doctor when they first meet me because my verbal skills, while significantly decreased from where they were a dozen or so years ago, are still so high. Until they look at my test results, every doctor questions my dementia diagnosis. I think I may have found out why I am such a paradox that on the one hand I have had to resort to a mortar and pestle to grind the daily tablets I take so that I can take them in apple sauce or yogurt because swallowing them whole has become a nightmare and yet can still read and write quite well (although remembering complicated plots and lots of characters is beyond me now).

http://www.dailygood.org/more.php?n=4686 says

Reading alone can’t cure diseases, of course, but the researchers concluded that reading contributes to “cognitive reserve” (CR), the brain’s ability to protect itself and adapt to physical damage. CR has been “extensively studied in other neurological disorders—Alzheimer’s, stroke, other dementias, sleep apnea, traumatic brain injury,” says Margit Bleecker of the Center for Occupational and Environmental Neurology in Baltimore, Maryland, who co-authored the study. In all cases, “individuals with more CR are able to withstand injury to the brain.”

Given that I have been an avid reader since I was a young child* and still read 8 - 10 hours a day (even when I was working full time, I read at least 4 - 6 hours a day), I think that might be why despite having so much deterioration in some parts of my brain (such as the parts that control things like visual-spatial perception) my word handling ability is much higher than one would expect for someone 10 years into a dementia diagnosis.

*When my first grade classmates were reading "See Spot run," I was reading Nancy Drew and Cherry Ames books and when I was formally tested by a psychologist when I was a Sophomore in High School, my reading comprehension and vocabulary levels were at the level expected of a College Professor.

I am thinking this lifelong history of avid reading for hours every day has given me a strong "cognitive reserve," that is now offering me a great deal of protection in slowing down the rate of some of my deterioration.

Early Onset Dementia

I am a 53 year old American woman, diagnosed with Pick's Disease in the Fall of 2001. My CT scans, MRI, etc. showed so much brain damage that I was awarded disability at the end of December, two weeks after applying for it.

Five years ago, it was thought more likely that my diagnosis should be Lewy Body Disease. Currently, my diagnosis is Ideopathic Dementia. In neurologist speak, Ideopathic Dementia basically means "ok, you clearly have dementia but you don't fit the pattern for any known dementia, so I'm just going to watch and see what happens with you and maybe someday I'll write a paper about this new dementia I discovered."

Hey, that's fine with me. I had planned to donate my body to science anyway since I also have the rare disease Osteogenesis Imperfecta (OI). For now, though I am living with the combined effects of OI and some type of dementia and would like to connect with other "high functioning" dementia patients. There are very few online support groups for dementia patients so I am going to turn this blog into a daily journal of my journey and hope others will join me here as time goes on.