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

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.