During last year I attended a newly diagnosed session at the MS Society of WA. While I was not newly diagnosed (thank God and for an explanation perhaps look back at this post, http://lumpycustard101.blogspot.com/2011/02/newly-diagnosed-seminar.html) I was new to medication. Being the most conscientious note taking nerd that I know - I took notes and made sure to highlight the fact that the MSWA Occupational Therapy Department did cognitive testing. At the time and still to this day, my brain does not function the way it used to pre-MS. These cognitive issues are also post-babies, as I don't really remember having the cognitive slip-ups I do now back then pre-babies, which was about three year post MS diagnosis. Conundrum? Nope, not in my sometimes sketchy mind. MS equals cognitive dysfunction, especially since I've been getting regular uninterrupted sleep for a year and a half now and those pesky cognitive problems have not disappeared!
Hearing this piece of information about the Occupational Therapy Department piqued my interested. I was very keen to have some testing done just to prove to myself that I wasn't a complete imbecile (or suffering early onset Alzeheimers) since I was forgetting the simplest of and frequently used words, like, "Can you get the knives and thingos and set the table." Or the next day forgetting half of the movie I had just seen the night before, or perhaps not so easily following a convoluted movie plot. Or worse still, forgetting details of growing up that I previously prided myself on remembering and recalling. I told myself to remember this info because I couldn't use the service immediately as I was about to commence my most feared, fourth year statistics unit at university. I didn't dare undermine my confidence in my brain's ability anymore than was absolutley necessary.
Lets just clear up what cognition actually is shall we. “Cognition” refers to the mind’s ability to recognize, organize, store, and recall information. MS can impede the parts of the brain whose job it is to perform these tasks. Everyone naturally has different abilities or strengths and weaknesses in cognition, but changes in cognition, however mild, occur in 45 to 60 percent of people with MS. I have read estimates as high as 70 percent and occuring in up to 50 percent of recently diagnosed cases. However only 10 percent of people with MS can expect severe cognitive impairment. Most MS cognitive impairment is not progressive, so while it may feel like we MSers are losing our minds (like stacks of other people minus the MS) we are not and the impairment is usually limited to certain types of cognitive problems like a reduction in mental sharpness, multitasking, processing speed, problems solving and word finding etc. Currently there is no medication to assist specifically with cognitive impairment in MS, although there are some in the early research stages.
Do those statistics make me feel any better - knowing that so many of us with MS will suffer the same types of cognitive issues? Does it help knowing when I am out with a group of friends and I am doing the talking, but can't remember a word or punch line instantaneously that up to 70 percent of my fellow MSers may be in the same situation? Nope, no siree I still feel like a twat! And I still feel like this around my friends who know I have MS.
Anyhow when I finished that fourth year stats unit (and did stupidly well at), I called the MSWA Occupational Therapy Department to make an appointment to have some cognitive testing done. It was all really simple and straight forward... certainly nothing to loose any sleep over. The screening tool that was used was the Screening Evaluation for Cognition Impairment (SEFCI), which was designed specifically for peeps with MS. Within it's scope, memory, thinking speed, problem solving and word knowledge were tested. The SEFCI is a standardised test and has a high degree of accuracy in predicting the likelihood of cognitive change.
My results were all rather positive and did not suggest any significant change in my cognitive functioning as a result of MS. As I was writing the above paragraph, I remembered what was said in a lecture about psychologocal testing (a unit I completed about a year ago) which was that I would no longer be able to be psychologically tested because I would know what to expect. I did know what to expect and I knew the best ways to do some of the tests. Did this affect my results? Surely. But I will take the tact of the manager of Occupational Therapy, which is that, yes I am noticing changes in how I process and recall information, but that these changes are subtle and do not impact on my routine.
The manager highlighted that being hyper aware of every little thing I forget is not helpful and that everyone forgets things. During a conversation that is flowing rapidly along I wouldn't notice someone forgetting a word or two - in fact I can't recall a conversation where someone else forgot a word. Surprise surprise, I can remember me doing it though! She also notes that being tense and stressed can have a negative impact on cognitive functioning, ie being worried about my ability to perform in a conversation.
As I have aspirations of being a psychologist I asked the manager what my prospects would be considering I will need to keep up with a clients conversation. It just so happened that a neuropsychologist was visiting MSWA and my results were discussed. The neuropsychologist emphasised recent research that suggests you can help yourself by adopting good "brain health" strategies early and these may help delay MS taking hold of cognitive functioning. There are five strategies and they are pretty generic, common sensey and are probably useful in delaying the normal aging process. Here they are:
1. Exercise: of the huffing and puffing variety that no one loves, to get extra oxygen into your brain.
2. Mental stimulation: do things that make you think - it could be work related or fun.
3. Immunotherapies (ok so perhaps not this one for delaying the aging process) continue using treatments as recommended by your neurologist.
4. Good nutrition: 5 serves of veggies and 2 serves of fruit.
5. Social supports: spend time building and nuturing relationships. Social participation is essential!
I would add another one to this - get on top of anxiety, stress and depression as these are also issues that can potentially impact on how you perform cognitively.
So wanna know what my New Year Resolution is? Stop being super aware of myself forgetting words, because probably no one else really cares except for me. I will try the laugh it off method if I am with friends who know I have MS and also the MS blame game. But if I am not with friends who know I have MS, I will employ good stress managing techniques, like breathing through anxiety or to just bluff my way through a conversation.... I guess it has worked until now. I will try to just let these episodes go, not replay them over in my mind a trillion times and most importantly I am not going to let these minor mishaps stop me from talking. I love talking!
My second (and last) New Years resolution is a whole lot less complicated... chewing my food!!
Thanks for reading!
