Brain Training

My brain...multiple sclerosis MRIAs you may have gathered I have Multiple Sclerosis. One of the symptoms of MS that is not talked about openly, is the loss of cognitive function. It is much easier to focus on the not being able to walk bit, or the blind bit. Personally the cognitive bit is the most frightening to me.

For me the damage manifests in various ways. The most annoying is dysphasia/asphasia which results in me having periods where I cannot form the words for things even though I can see/hear them in my head. Tip of the tongue syndrome is how I describe it. Mostly around nouns.

My struggle to find the word is often amusing to my friends, and I know EXACTLY how a small child feels when you are trying to make yourself understood, and it is just not happening. I haven’t hit the tantrum chucking stage, but black anger sometimes does ooze up from the bottom of my frustration. Mostly I make fun of myself and accuse them of “picking on the gimp”.

Frustrating also is the effect that has had on my writing skills. I have written all my life, and sometimes even been paid for it. In recent years I have been aware of gaps that have appeared in my vocabulary. Much of my writing now is filled with XXXX, my placeholder symbol for a word that I cannot remember. Grammar too, has taken a beating and I must proofread my work several times to ensure I am not expressing myself in the language of the 5 year old. Tense is a bitch!

This is all very depressing. I choose not to be depressed about it, but to do something.

I chose to check around the internet about new neuroscience research. Fascinating stuff and truly inspirational to those of us that grew up with the old “the brain cannot regenerate after damage” which sets up that mindset that what is done to your mind, is permanent. It ain’t.

I believe that just like the six million dollar man, you can rebuild what you have lost. Unlike the six million dollar man it can’t be done over night, and no bionics are available yet. The solution is all through working what you have, to gain back what you had. It takes a while.

What i am doing is reading, writing and speaking as often as possible. Sounds pretty obvious, but yes practice will help rebuild the destroyed neural pathways.

As I am an internet hermit (spending just about all of my spare time shoving information into my head) reading gets a super work out. Though in the past I have been lazy and just went to StumbleOn videos, a habit that now is a treat rather than a daily occurence.

Writing is dead easy too, the blog, content for sites and forum posting. All great work-outs for the burnt out bits.

I also enjoy exercising the left side of my brain through playing logic games such as online Mahjong.When I first started playing I was useless. I would spend ages staring at the tiles trying to make sense of the links. My brain at times would be overwhelmed by the stacks of tiles (hahah mahjong joke there) and freeze up. I would have to away and do something else till I could have another go. Now I have improved out of sight, and only feel sometimes that my focus is on the right side of the board.

Give me a couple of years and I hope to have negated the damage and if I am ultra lucky, no more will have developed.

Comments

  1. Arina says:

    Wow. I’m studying memory disorders right now in my Memory Class, and I’m frightened just by reading about it. Your attitude is remarkable and positive spirit truly is inspirational!

  2. Jane says:

    I’m so glad I found this page. I have a friend who was just diagnosed with MS and is VERY concerned about cognitive problems. I will share this address with her. Thank you!

  3. carmen riley says:

    thank you for sharing,i,m so confused because they haven,t said i have ms but my brain looks a lot like yours for the past 3 years and i can,t recall my own kids names at times or recall simple items we use every day and my husband gets confussed and upset at me,like he gets irratated because he does,nt understand why i can,t have a regular conversation.what was the final test that helped them realize you had ms.i,m scared i,m loosing ground every day and if i don,t stop it or get treatment soon.i,m not going to be able to have a normal conversation with anybody.

  4. Allison says:

    sorry for the delay in answering Carmen. I had a series of tests which determined why I was not able to walk. MRI + Lumbar puncture + Visual evoked response test determined the diagnosis.

    Hang in there!

  5. Jedene says:

    Allison, I could have written your post! I was dx w/ MS in 4/06 and began seeing cognitive impairement in 12/07. I know exactly how you feel about seeing the word or object in your mind, but not being able to voice it! I too must read and re-read any emails I send as sometimes my fingers just like to type letters or words that I don’t mean to type! It is frustrating!
    My recent MRI (4th annual) shows more lesions in my white matter and I am scared at what the future holds for me!

  6. Allison says:

    Hang in there Jedene and keep working what you have. Keep exercising the rain and it can build those connections

  7. Liana says:

    Hi Allison,

    I have been going through a barage of tests, but the neurologist still can’t figure out why I have the tremors in my legs. After having the evoke potential test on my eyes, he is talking more about MS. The lesions in my brain are small. I know I shouldn’t self diagnose, but after reading the symptoms of MS on the MS website, it would explain a lot. I too have trouble with spitting out the word, when I know it but it won’t just come out. I also have trouble with remembering things and I am exhausted all the time even after 8 to 9 hours of sleep. It’s not that I want to have MS, but it would be nice to know what is causing the problems. Thanks for your blog, The last post was a year ago, I hope you still check it.

  8. Allison says:

    This post might have been a year ago but I still regularly update :)

    I do hope all goes well with you. I know what it is like looking for the answers even though you suspect they won’t be good. MS treatments are moving ahead in leaps and bounds and I don’t think now is as bad a time to be diagnosed as it was 10 years ago. Fingers crossed on a good outcome for you!

  9. matin says:

    i have ms with parestesia for2-3wee without any sign or symptom in 2years ago .need b.inf?

    ?

  10. Jill says:

    Hello Allison, I am hoping you are still reading these posts. Your post caught my attention with your symptoms.
    I have 2 MRIs 1st 9-2006 w 1(clear)+? lesions. 2nd 1-2009 w apears to be “several” lesions(BIG difference & is obviouse when I look at it in my computer) report states “Lesions are insignificant”. Also, protocol for MRI not followed to find lesions, OLD machine, no gladnium for contrast etc. Spinal Tap was high in protien. I am VB12 deficient. My neurologist told me “Every test came back normal”. He strait up LIED to me! I only found the truth in my medical records & I have my MRIs! I need help!!! I finally found family medical history of MS & Parkinsons D in my moms ‘Weaver’ family thru genealogy. I didn’t have the family info at first but now my Neuro doesnt care. I am & have had symptoms of MS all my life off/on yet I knew NOTHING of this disease till 6-2006 when my PC said “I think you have MS”! I denied it as I was ignorant of it & never having met ANY relatives on either my M or Fs families & I didnt even know the symptoms or nature of the disease. Having learned the symptoms I am sure now it is what my mom suffered undiagnosed for years before she passed, I have a 1/2 bro in TX in & out of wheelchair & nursing home to walk. He is diag w Lyme D, Epstains Barr D yet, my sis had liver transplant w out a reason for its failure. No drugs or alcohol involved, unresolved reason, virus? MS I wonder. She never told Drs of MS in fam as she didnt know. So much more to tell! I need help now tho..a good neuro..radiologist..to read my MRIs correctly & honestly! Any ideas? I hope you are better & that I dont offend you with my post but I am reaching for help to anyone who may kno someone who can/will help? Your symptoms of writing & vocabulary probs are so like mine I figured you’d understand. I aced english/writing in college, yet at a loss at times to say/write communicate. Today is a better day, I am able. At times I cannot lift my arms or stand up. I am hoping you will respond wether or not you can help. Sincerely, Jill

  11. Allison says:

    Hi Jiill

    I am glad you are still looking for answers. The first thing to do is seek out your local MS Society and they have contacts to good neurologists and services that will be able to help. They also have counselling and people to talk to . Getting a diagnosis is often tricky, even with today’s medical machinery, and is usually the most frustrating thing for us that have the disease because the symptoms can be so crazy and intermittent. Go to them and they will be able to guide you on what to do next .

    Interestingly I was reading a study yesterday that had Epstein Barr as one of the environment causes that may help trigger MS. http://www.facebook.com/l.php?u=http%3A%2F%2Fmedicalxpress.com%2Fnews%2F2011-05-virus-similar-herpes-factor-multiple.html&h=9baf5

  12. Jill says:

    Hi Allison your response of helpful suggestions/ideas is much appreciated. I will look into the nearest MS Society that I can find. The info re; Epstein Barr is very interesting…hmm. I truly believe my bro has MS too & that he is misdiagnosed. I just noticed the link above-I didn’t know that is what Epstein Barr is.
    This is so frustrating & you are so right about the symptoms. One day I am able again & the next I am not! Yet with the passing time I’m so progressively worse that even when I am able I have lost even more of the abilities I used to have. Sincerely, Jill

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