coping
Re: coping
I was dx nine years ago with RR at 39 too. Sucks, but my niece was just dx a few months ago at age 25 with 2 young kids - as hard as it has been for me at this age, I can't imagine what she is going through. But she's quite positive about it. Amazing. Fourth person in our family to get it, and my wife's family has it too - I'm worried for my kids and hope the "cure" comes in time to help them.bromley wrote:I would like to hear from others about how they cope with the losses and uncertainty related to this disease. I was dx two years ago with RR at 39. Completely out of the blue. ... She is suggesting that I try an anti-depressant for six months and try some counselling. ... I feel the same way about cognitive impairment - I could not, and would, not live with this.
I resisted counseling for several years, but I finally decided to try after multiple doctors recommended the same therapist. It is amazing the difference it makes - I felt better after a few weeks and stopped taking the antidepressant.
For the brain fog and cognitive impairment, my neuro started me on Aricept and Namenda. Seems to have done the trick. Brain fog is gone and even my swiss-cheese memory is starting to be more reliable. Cognitive impairment is by far the scariest aspect of the disease for me.
I never really exercised my entire life, but finally started 18 months ago. It has made a tremendous difference and I highly recommend it. Couldn't do much at first, and progress has not always been consistent, but things continue to improve. I feel better after I work out too.
I just finished reading a book called "Tuesdays with Morrie" about a guy named Morrie Schwartz with ALS (Lou Gehrig's disease), and watched the videos that the library had on him. Really helped me get a handle on accepting having a critical illness and getting on with life. He says he cried every morning over his losses for a short while, and then got back to living. I had never thought of grieving like that.
I too think maybe I would feel better if I stopped visiting these MS web sites, but I do get something out of them and would hate to miss that.
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I take an herbal product made by New Chapter called Neurozyme. It has helped my cognitive difficulties and I feel like my old self as far as my cognitive abilities go. There is some research backing up many of the ingredients in the product. You can check it out here: http://www.new-chapter.com/product/prod ... yValue=103bromley wrote:
I would like to hear from others about how they cope with the losses and uncertainty related to this disease. I was dx two years ago with RR at 39. Completely out of the blue. ... She is suggesting that I try an anti-depressant for six months and try some counselling. ... I feel the same way about cognitive impairment - I could not, and would, not live with this.
I was dx nine years ago with RR at 39 too. Sucks, but my niece was just dx a few months ago at age 25 with 2 young kids - as hard as it has been for me at this age, I can't imagine what she is going through. But she's quite positive about it. Amazing. Fourth person in our family to get it, and my wife's family has it too - I'm worried for my kids and hope the "cure" comes in time to help them.
I resisted counseling for several years, but I finally decided to try after multiple doctors recommended the same therapist. It is amazing the difference it makes - I felt better after a few weeks and stopped taking the antidepressant.
For the brain fog and cognitive impairment, my neuro started me on Aricept and Namenda. Seems to have done the trick. Brain fog is gone and even my swiss-cheese memory is starting to be more reliable. Cognitive impairment is by far the scariest aspect of the disease for me.
VS
cognitive products
my naturopath raves about a product called 'ortho-mind' - i have not yet finished up my ginkgo so have no personal experience yet.
and speaking of cognitive, one of these days i will paste an article i just read in a new zealand paper this morning. it's a poster case for how NOT to report on a published study. or i should say, it's a poster case for how to convince the general public that it is futile to try to look after themselves and support their future cognitive function. it was so ridiculous i could not help pointing out the idiocy to my poor neighbour.
ttfn!
and speaking of cognitive, one of these days i will paste an article i just read in a new zealand paper this morning. it's a poster case for how NOT to report on a published study. or i should say, it's a poster case for how to convince the general public that it is futile to try to look after themselves and support their future cognitive function. it was so ridiculous i could not help pointing out the idiocy to my poor neighbour.
ttfn!
Ian
it's been some weeks since you first posted your message on coping. I only read it v recently and I recognised so many things that you touch on: the uncertainty, the obsession, the fear and the anger, of course. Much of what I would have said has been said by others, more articulately than I can say it. All us MS sufferers are human and anger is a very human response to something that threatens us and our way of life. I read somewhere than anger is part of grieving so perhaps I'm still mourning the me pre ms.
I want to scream out the acknowledgements that I can't do certain things any more. The Easter skiing holiday where I managed to do half a run, my weak leg meaning I could only turn efficiently in one direction and visions of just going round and round in circles; the beautiful strappy shoes gathering dust in boxes in my wardrobe whilst I yank on another strudy pair of boots which accomodate my orthosis; missing yet another bus because I can't run for it and so on.
My coping mechanisms? Being kind to myself, allowing myself to weaken sometimes, becoming an anorak on MS in the hope that I will find IT (don't ask me what IT is), looking at my children and not wanting them to remember me as a miserable moaning hag, looking the black dog of ms straight in the eye and giving it a good kick AND last but not least chocolate.
all the best,
muu
ps: your postings are brill.
it's been some weeks since you first posted your message on coping. I only read it v recently and I recognised so many things that you touch on: the uncertainty, the obsession, the fear and the anger, of course. Much of what I would have said has been said by others, more articulately than I can say it. All us MS sufferers are human and anger is a very human response to something that threatens us and our way of life. I read somewhere than anger is part of grieving so perhaps I'm still mourning the me pre ms.
I want to scream out the acknowledgements that I can't do certain things any more. The Easter skiing holiday where I managed to do half a run, my weak leg meaning I could only turn efficiently in one direction and visions of just going round and round in circles; the beautiful strappy shoes gathering dust in boxes in my wardrobe whilst I yank on another strudy pair of boots which accomodate my orthosis; missing yet another bus because I can't run for it and so on.
My coping mechanisms? Being kind to myself, allowing myself to weaken sometimes, becoming an anorak on MS in the hope that I will find IT (don't ask me what IT is), looking at my children and not wanting them to remember me as a miserable moaning hag, looking the black dog of ms straight in the eye and giving it a good kick AND last but not least chocolate.
all the best,
muu
ps: your postings are brill.