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Caitiegirl
Member
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Posted: Mon Sep 22nd, 2008 02:29 |
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Caitie has had progress in almost every area of her illness. Since she is feeling better she would like to start reviewing some school work. She became very ill right before the PSAT so we have never taken an SAT. Therefore, she will have to study enough to take the test before we can apply for admission to college. We are coming up on 1 year in October and moving very slow. She was just very ill when we started.
The problem is that she is getting very frustrated that she can't seem to make sense of math even on a good day. The verbal ablility seems to be relatively intact with just good days and bad days according to how bad the IP is but the math just feels gone to her. I keep telling her to relax and let her body heal first to which she lovingly replies, "The next person that tells me to concentrate on getting well is going to get smacked. Just how am I supposed to do that? Sit around and think about how sick I am and wish myself well?"
It's obvious she is feeling well enough to try to work on some school work but is totally frustrated because 8th grade math seems above her ability. She was in Trig when she got sick and math was always something that came relatively easy to her.
So for those of you who have been there done that can I assure her that she will get this back? Will the cognitive abilities fade back in over time or should she buy a 5th grade math book and start over? I think she just needs a few words of encouragement right now. Last year at this time we were worried more about life and death. I guess it's a good thing we can start to think about quality of life now instead.
Thanks,
Mindy
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Caitie(19) lyme,seizures, myoclonus, dystonia, digestive, chronic headache, mental fog: 10/23/07 25D 36 1,25D 58, 1/18/08 25D 9.9 Cut sun/D 9/26/07 Benicar 10/25/07, NoIRs 10/29/07
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PaulT
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| Location: | Sydney, Australia |
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Posted: Mon Sep 22nd, 2008 03:17 |
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Mindy
I understand Caitie's feeling of the Maths being gone. I have had a very similar experience to the point where i would look at for example a phone bill and put it straight down because I couldn't cope with it.
I've found that cognitive ability has gradually faded back in as I have progressed - just as health sneaks up on you. However most of my improvements have been in Phase 3.
The fact that caitie wants to do math is a good sign but there are 2 things (at least going on ) First - Bugs in the Brain. Second - IP mucking things up further. Ultimately both will reduce and the math will come. But there's not much you can do to rush the process
One of the signs that my brain was clearing was the wanting to do things and the Planning of things I'd like to do.
I wouldn't buy the grade 5 book - You may find she can't concentrate enough to do that level either at the moment <frustration emoticon> <anger emoticon> <book throwing emoticon> (PS I have an 18yo daughter)
I would suggest to work on what she can do, try math when she's in the mood and not stress over it.
Paul
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Sarcoid diag 1/05 - Cough, fatigue, Feb 07 125D=59.6, Oct 07 25D=12, May 08 25D=7.5 avoid light/D, Noirs, covering up, Zinc Oxide on exposed skin.
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Caitiegirl
Member
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Posted: Mon Sep 22nd, 2008 03:59 |
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Thanks Paul,
That's sort of what I was hoping someone would tell me.
 Mindy
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Caitie(19) lyme,seizures, myoclonus, dystonia, digestive, chronic headache, mental fog: 10/23/07 25D 36 1,25D 58, 1/18/08 25D 9.9 Cut sun/D 9/26/07 Benicar 10/25/07, NoIRs 10/29/07
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natalie17
Member
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Posted: Mon Sep 22nd, 2008 13:00 |
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Mindy,
I am sure Caitie's cognitive function will return.. mine certainly is, and I also started off very ill & I'm taking it very slow... I'm about 14 months in.
My extreme example is pre-MP, some days, I would have trouble understanding english - my first language. Some days I couldn't even put togetehr a sentence. My semi-second language (I understand and 50% speak it) Maltese, completely disappeared from my head & Italian, which I mostly understood didn't even sound familiar.
They are all back and never happen any more.
I even corrected Dad on a quick maths equation the other day. Math is still very hard for me to process but I have no reason to do it - I am about to try to start re-learning the piano though, and when I glanced over the books of music a few weeks back it just came flooding back.. a lot of 'Oh yeah I remember that'. Where as in the middle of my worst it was just jibberish and I had no idea how I ever understood any of it.
I don't think Caitie will have to start from scratch at all, it just might take time, which is frusrating.. especially when one part of you heals faster than the other (physical faster than cognitive and vice versa).
It will all come back though 
Best of luck to Caitie .. I always say it's a good sign that we're well enough to feel any sort of boredom.
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CFS/ME from June05| Ph1-July07| Ph2-Feb08 | Natalie's Story | ABCofMP
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Caitiegirl
Member
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Posted: Tue Sep 23rd, 2008 13:52 |
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Thanks Natalie,
You and Caitie look a lot a like and if she could, she would probably be a vegetarian. We are having one of those times when a little healing just makes her impatient for the rest of the healing. I have told her all along she would probably be on antibiotics for several years but I truly believe sometime in stage 3 she would be able to get back to school.
Thanks for the encouragement. It helped a lot coming from someone around the same age who has also been very, very ill.
Mindy
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Caitie(19) lyme,seizures, myoclonus, dystonia, digestive, chronic headache, mental fog: 10/23/07 25D 36 1,25D 58, 1/18/08 25D 9.9 Cut sun/D 9/26/07 Benicar 10/25/07, NoIRs 10/29/07
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natalie17
Member
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Posted: Thu Sep 25th, 2008 02:23 |
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Hi Mndy,
Well at least there is healing and she knows it will keep coming.. that's what always kept me going. There was no hope of recovery for me before.
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CFS/ME from June05| Ph1-July07| Ph2-Feb08 | Natalie's Story | ABCofMP
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Alayne
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Posted: Thu Sep 25th, 2008 05:59 |
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Hi Mindy,
I was actually teaching math when I finally fell through the rabbit hole. My cognitive abilities had been slipping away for quite a while, but I got to the point that just adding some numbers in my head was too difficult, let alone consider how to spell theorum.
I also had great difficulty reading, writing, and speaking or writing coherently. My levels went from college+ to elementary level. Yes, it was very frustrating, as most of us who've had cognitive decline can verify.
However, now after almost three years on the MP, my cognitive skills have improved dramatically - in all areas. The first to come was the reading, and slowly increasing the difficulty levels. It didn't initially matter to me that I couldn't remember everything I'd read, but that I'd actually read a decent book. Things got better from there, with plenty of days off for brain rejuvenation, or as I put it, "out to a lot of lunches."
Mathematical skills started slipping in towards the end of year one, I think. Very basic skills. I started going on this site called "Braingle.com" and dabbled around on it for quite a while. I still do, actually. It has all sorts of fun brain oriented games, memory problems, logic problems, word for the day, etc. kind of stuff that one can actually have fun doing. I think "fun" is an important word here.
The difficulty levels vary, so some days I'd do level 1 (a lot of those in the begninng), then started moving on up. Even if they're not directly "math" problems, per se, they are using areas of the brain necessary for that kind of thinking and reasoning. This did help me become more comfortable again with basic math and I seem to be doing okay now. Not that I have designs on becoming an accountant, but I usually don't have to count on my fingers and toes anymore.
I really think that with time, Caitie will be able to catch up with her math. The bugs affect all different areas of the brain and we seem to have to really wait out the ride. My MP partner who's not really had one improvement after 2.5 years on the MP is finally starting to think clearly at times and his math and reasoning skills are seemingly returning at an alarming rate. Fingers crossed.
Wish you all the best!
Alayne
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CFS/FM Sick 30+yrs. NoIRs/Zinc oxide. 6/05:25D-34, 1,25D-69; 11/07:25D-8 1,25-37. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3. 4/09-10/09 weaned off abx. Benicar q4-6h. Heavy metal chelation as recent adjunctive therapy.
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Deb Grabetz
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Posted: Thu Sep 25th, 2008 10:27 |
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Alayne,
Thank you so much for the braingle.com suggestion. I am heading there after my post to check it out! Sometimes I do online memory (the game). That is really good and doesn't usually tire me out as much as words. I'm much better at dealing cognitively with pictures than I am words. Whatever the difference, words have tired me out for years.
I have noticed though in the last few months, reading is beginning to become a little easier for me. As a child, I read constantly. When I started losing the ability to read, (somewhere around my early 20's) I chalked it up to being too busy, working, raising a family and had no idea there was something actually wrong with me. I would still buy books, as I love them--but after a couple pages would fall completely into a deep sleep. Now, this would be great for putting me to sleep,as I read of others struggling so with insomnia, but it just has aggravated  me to no end. The Book Group thread has been wonderful, as it keeps me focused on doing a few chapters at a time...which I have been able to do now, thanks to 18 months on the MP!
Odd how simple functions...slip away from us and are stolen...like a thief in the night!
Thanks again...I'll let you know how I do! Deb
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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coolbeans
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Posted: Thu Sep 25th, 2008 11:24 |
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My suggestion deals with WHEN to take the SAT. After 5 kids and their friends of going through this process and then having to repeat testing to try to raise the scores, it became apparent that the June SAT was by far the easiest test. Why? Who knows. But every kid scored significantly higher on the June SAT. So much so, that by the time the 5 one was ready, he planned on only taking this test at the end of his Sophomore year and received a cumulative score of 27.
Not having taken the PSAT will not hurt Cattie. It may even benefit her because she will avoid the little known pitfall of multiple testing = your scores can't improve too much or your honesty will be called into question. One of my sons SAT was so much higher than his PSAT taken only a few months earlier that he was ordered to retest. He ended up in a room all by himself with a moniter closely watching the "cheater". He had to duplicate his previous score + or - 2 points to allow the first score to stand. Otherwise, the original score would have been disallowed and a letter sent to all the schools he had applied to, branding him a cheater. As he was trying for the Coast Guard Academy, this would have been a carreer ending letter. As it turned out, he passed (barely) and avoided the axe falling on him by the System whose justification for what they were doing was to protect their own reputation.
When Cattie's cognative skills return, hopefully it will be in sync with taking the June test.
Jan
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RA FM allergy asthma GERD MCS FBD IBS lichensclerosus 125D59 Ph1Jun06 ModPh2Aug06 Ph2Jan07 Ph3Jun07 tramadol diazepam NoIRs lite exp r/t work cover up 25D4
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Deb Grabetz
Moderator
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Posted: Thu Sep 25th, 2008 11:43 |
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For all-- Here's the site that Alayne uses! There are memory tips, games, brain teasers, trivia, mentalrobics etc!
http://www.braingle.com/index.php
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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Caitiegirl
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Posted: Thu Sep 25th, 2008 16:07 |
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Thanks Alayne & Deb. All the experiences of those ahead of us gives her a lot comfort. Alayne if it can happen to a math teacher then she doesn't have to feel so bad about losing her skills.
Jan,
What a neat thing to have figured out. We will shoot for June. Wonder if the LSAT & GRE are easier in June too? Unbelievable what your son went through. Talk about being punished for doing well! Glad he rose to the occasion! The stress of that situation would have totally shut me down.
Thanks for the comments everyone.
Mindy
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Caitie(19) lyme,seizures, myoclonus, dystonia, digestive, chronic headache, mental fog: 10/23/07 25D 36 1,25D 58, 1/18/08 25D 9.9 Cut sun/D 9/26/07 Benicar 10/25/07, NoIRs 10/29/07
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Alayne
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Posted: Thu Sep 25th, 2008 22:51 |
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Mindy and Deb - glad to have offered something potentially useful.
It's important to remember that what one can do one day, might not be possible the next - and vice versa. So one shouldn't get discouraged if a rediscovered talent or ability disappears again. It'll return. It really depends on IP, stress levels (from outside and IP), light exposure, and probably even on what color socks or underpants you're wearing. 
Whenever I have to do something important - like work or a big class - I make sure I don't increase my meds (sometimes reduce them, depending on where I am in my schedule), get as much sleep/rest as possible (Ha!), lower the stress levels as much as possible (sometimes out of my control!), etc.
If I still have a hard time, at least I know I've done my best for the time being.
Mindy, practicing doing timed-tests with Caitie (when she's able), might also help her prepare for the SATs. Just to get "used" to the stress level of having a clock ticking. Start small, then go for longer periods of time.
Remember too that you can make specific requests for a longer test-taking times, or perhaps other changes - all based on Caitie's "disability." Special accomodations would be definitely something to consider (I'm sure you've already thought of this!). A decent site to review is http://www.collegeboard.com/ssd/student/index.html.
I used special accomodations for other test-taking ventures during my second stint in college. I didn't know that I had to avoid light at the time, but at least I could more easily reschedule my tests if I wasn't up to walking or thinking. My professors were actually very accomodating, on the whole. At that time my "disability" was labeled psychiatric, as no one could offer me another explanation.
Sometimes I didn't need the extra time, but it sure took an edge off the stress levels, knowing that I had the option, just in case.
Cheers!
Alayne
____________________
CFS/FM Sick 30+yrs. NoIRs/Zinc oxide. 6/05:25D-34, 1,25D-69; 11/07:25D-8 1,25-37. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3. 4/09-10/09 weaned off abx. Benicar q4-6h. Heavy metal chelation as recent adjunctive therapy.
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coolbeans
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Posted: Fri Sep 26th, 2008 07:36 |
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What a great idea, Alayne, on how to make the system work for Caitie. Bravo! I remember reading about that option now that you mentioned it. As I recall, it's as simple as asking to the accommodation.
My son handled the stress of the restest just barely and he's as healthy as anyone I know. It was not fun trying to comfort a bawling 17 yr old whose intregrity was called into question. Thank God he passed. I don't know what I'd have done to reassemble his psyche if he hadn't.
Jan
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RA FM allergy asthma GERD MCS FBD IBS lichensclerosus 125D59 Ph1Jun06 ModPh2Aug06 Ph2Jan07 Ph3Jun07 tramadol diazepam NoIRs lite exp r/t work cover up 25D4
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Deb Grabetz
Moderator
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Posted: Mon Oct 20th, 2008 11:47 |
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The inability to find "words", seems to be such a common thread for many of us who are dealing with Th1 disease. I have for quite some time used the Mirriam-Webster online thesaurus, I have it saved to my favorites. It has been a godsend when I am trying to write and express myself, "with the intelligence that lies within, that insists on playing hide and seek with me!
http://www.merriam-webster.com/
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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