WHAT is MS to ME!
Multiple Sclerosis Radio’s Judi Lecoq’s Patient Panel Karen Krueger, Lori Thorne, Jeff Segal & Ruth Furtado shares what being diagnosed with Multiple Sclerosis means to them.
…their worst memories, exacerbations & experiences & their best.
…any residual disabilities they now live with after a major MS exacerbation.
And how Multiple Sclerosis has changed their lives since?
For better or worse?
“I was diagnosed with Relapsing Remitting Multiple Sclerosis (RRMS), but radiologist’s report is suggesting Secondary Progressive Multiple Sclerosis (SPMS), when I was 39 years old, 9 years ago.
My worst memories of exacerbations… 3 bouts of ON, Oscillopsia, and my bladder/bowel issues are the worst…Something about wearing an eye patch destroyed my confidence. Being a raving lunatic on steroids…I was outside, trying to do some work in the garden. I was grumbling about MS, and my shortcomings, and I just threw the shovel. Well, I hadn’t looked around BEFORE I threw the shovel…When I threw it, I looked up and there was my husband, staring, open-mouthed. I try to joke about it and say that I’ll never make the Olympic shovel chucking team, but I still got good distance!
My best memories are of a couple of FB lady friends that I met that have MS as well…We’ve become fast friends, and one even travelled from Illinois to Michigan to attend my father’s memorial service.
I have lingering eye issues that are becoming worse, slowly. Dim vision, sensitivity to sunlight, lazy eye on the right, sometimes.
My life has changed drastically for the worst. I very rarely drive anymore. Before, it wouldn’t bother me in the slightest to drive cross country. Now I can barely make myself drive into town. I’ve become a very timid driver.
Uhtoff’s keeps me inside during warm summer months, because my legs just die on me. In the cold months, if I get cold enough to shiver, my right leg just drags. Going down in to the basement of our house is a challenge, because my husband won’t let me go down there when he’s not home.
When I try to garden, the Uhtoff’s will kick in and I end up crawling to either get back in to the house or to somewhere I can pull myself up.
We eat out quite often because my husband doesn’t want to pressure me with having to cook for him (my passion!). When we go out, sometimes my hands don’t work right and I end up making a mess…I haven’t slopped myself up yet, but I’ve come close.
Bike riding? Dancing? Done. Done. Jogging? Done. My favorite activities are all gone. I used to be a Certified Red Cross life guard. I grew up living on lakes for a large part of my early years…I water skied, jet skied…Everything. it’s all gone now…
BUT! I have made WONDERFUL friends all over this little blue planet that we live on! when my father passed, I was receiving cards all the way from Australia.
MS, that unwelcome intruder, made it possible, due to being on disability, for me to empty out my 3 bedroom home, and move to this little hick town to care for my Mother and Father in their later years. She had cancer, and I was able to be with her 24/7 at the nursing home, helping care for her. I was able to be with her until the very end…She’d told me that I didn’t have to do that. I told HER that she was there for my very first breath, and I would be there for her very last one…My father lasted a year after she passed…Caring for him was more of a challenge, because he was so stubborn…But, in the end, I made the decisions that I needed to make, and had him removed off of life support…I was raised to be a fighter, and I get a little radical where children, the elderly, and the disabled are concerned. Someday I’d like to be a Hospice Volunteer, so I can tell people that everything will be all right…Maybe not today,and maybe not tomorrow, but it will be all right…
I’ve got a small, intimate FB MS Support Group where there is no arguing. It’s usually fairly quiet in there, but it’s upbeat, fun, and supportive, with lots of info passed along. I like to tell my fellow MSers that if they can’t find a way over or under MS, then they need to find a way around it…when they just want to lay down, I tell them to do WHAT they can, WHILE they can, and make the very best of a shit situation.” -Lori Thorne
“I was Diagnosed with RRMS in April 2001 aged 38 (after more than 2 years of symptoms) and with SPMS in February of 2012 aged 49.
The 1st of 2 exacerbations in 2010 which left me barely able to walk for over a year and lead to my having to give up my job search and go on SSDI. Also the episodes of optic neuritis (from 12/02 thru 5/03) because I never knew if my vision and ability to distinguish color would be permanently effected (somewhat inconvenient for a graphic designer/photographer)
The friendships that have come from MS and experiencing the kindness of people, many who I didn’t even know, who went out of their way to help me when they saw me struggling.
I have constant numbness in both hands and feet, much worse on the right and on the entire right side of my body. Also, decreased fine motor skill in my right hand, weakness overall but more on the right side (getting better!) balance problems and fatigue, and some incontinence issues.
Well, changes for the worse are pretty obvious. I can’t do many of the activities I used to enjoy. Changes for the better… I’ve learned to advocate for myself, I’ve learned to be adaptive to change and even embrace it, I’ve learned to focus on things I can still do and explored new activities, I’ve learned self-reliance and patience (well, still working on patience) I’ve discovered the importance of knowing who in my life is sincere when they say, “I’m always here if you need anything” and who is saying it but, while they mean it when they say it, always seem to be unavailable when I call. In other words, who will MAKE time to help if I ask (and asking for help is ALWAYS a last resort for me!) and who may try to find the time if it’s not too inconvenient for them. I’ve discovered that, for some people, compassion for someone with a chronic illness of any kind seems to have a limited shelf life.” -Ruth Furtado
Judi Lecoq, Director of Multiple Sclerosis Radio was Diagnosed with Secondary Progressive Multiple Sclerosis in 1997. She has so many crappy memories she can’t even begin to say. Judi refuses to bow to MS. She continues to live her life, no matter what, with determination and a smile”