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[tweener8292]

Does anyone here have to cope with MS and the job?  My form is primary-progressive.  News about new treatments, etc. are for relapsing forms, not for ours.  Any medications that are prescribed are only to cope with the slow, steady advance.  So far fatigue is the #1 job related effect, and by the time I get home from work I'm too "cooked" to grade papers, etc.  #2 would be how stress exacerbates the feelings of numbness, "blah", fatigue, etc.  I find myself hiding from those who would use my condition against me when I do not feel well.  This happens often in the afternoon, as well as when I have to deal with them (especially a department Chair and Dean who I KNOW who like to use any excuse to negatively impact on my career).

Some days it just stinks.  On the others it's a major factor that impacts on how I feel about myself, my job, how it hurts the marriage (my wife teaches at the same institution in another department and her work conditions are much better and more supportive - stressful in its own right even if illness wasn't a factor.  My MS, its effects, and the prognosis makes it all even worse).  I know that the prescribed career advice is documentation, etc., but it sure doesn't make the career better and/or enjoyable.  It's become one of "grinding and coping", and that at its BEST.  

[bioteacher]

My mom has. Hers is not primary-progressive, but of course we didn't know that for a long time. Her diagnosis only came after some pretty scary symptoms.

What she would tell you is this: it's not a death sentence. It's a huge PITA, yes. (One of her biggest issues is heat. Any overheating causes a flareup. And she gets hot very easily. Summers are miserable for her.) Yes, you have to adjust your mental windmills to adapt to this change in the future you imagined. But even though MS is in your life and will at times be a huge factor in your life, it doesn't ruin your life by default. Scary? Yup. Terrifying, even. But the alternative to coping daily is lie down and die.

I can't give specific advice beyond that. But know that you are not alone, not all work environments are toxic, and that a new breakthrough in research could happen at any time. So savor the good days, grit your teeth through the lousy ones, and keep on muddling.

[tweener8292]

Oh, yes.  Heat.  Kicked my TAIL this summer.  I live in the South and it was regularly in the '90's from June-September.  After walking 10 minutes I regularly found myself running for relief from air conditioning.  I had never been like that before, so I've had to learn that this appears to be the way it's going to be from now on.

Thanks for commenting, and best wishes to you, your mother, and your entire family.

[bioteacher]

Get an ice vest. They make vests that you put blue ice into. It's a must-have accessory for summer. For short jaunts, Mom can use just the neck pack, but the rest is in the cooler in her car if she needs it. Expensive, but well worth it.

Google search turned up several vendors. For example:

http://www.silvereagleoutfitters.com/shop/MS_Cooling.htm

http://arcticheatusa.com/

Good luck!

[tweener8292]

Thanks - I'll look them up.