This section of “Sunshine and Moonlight” was designed as a place for M.S. patients, caregivers, and the general public to gather and talk.
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I was reading my weekly dose of the blog when I got to around December 9thish where you talked about your eyesite and how you can’t see to the left. It made me think of this laser eye training device that certain athletes use to increase their peripheral perception and strengthen the nerve. I wonder if this technology could apply to your situation. It is rather simple, you sit in a dark room and a laser dot is projected on the wall. The goal is to keep your eye on the dot as it moves all around your visual spectrum. Let me know what you think! Love ya!!!!!!
Why hello, sir Joe!!! First of all, did you notice? I made a discussion area on the blog like you suggested. Thanks for that. This is interesting, and no, I’ve never heard of it. I head back to the eye doctor on Monday for another round of tests. She didn’t want to make my glasses, just for the vision to heal more on its own (and then have to make another pair a week later). I’ll ask her about this and if she doesn’t know about it, I’ll ask my neuro at my January appointment. By the way — we LOVE YOU TOO! (I heard “I’ll be home for Christmas” while wrapping presents and got all teary because you won’t. So, if the names are smeared on your present’s little card when it finally arrives in Vermont, that’s why). If you haven’t noticed we miss you!! And, thanks, for keeping up with my progress by reading!
Kim,
Thank you for beginning this blog! My mother steered me in your direction after reading about you and your site in her local newspaper. I am an Erie native, but haven’t lived there for over 30 years.
I was diagnosed with MS in September of 1999. I always say that we found it by mistake, and I am so thankful that the circumstances that led up to my diagnosis happened the way that they did so that I could get onto medication so quickly.
I started with a ringing in one ear about a month before and finally decided that I had to go to the doctor to see what was going on. He, in turn, sent me to an ENT who did several tests and couldn’t find anything wrong with my ear, inner ear, or hearing. So, he ordered an MRI to rule out any further problems. When I went back to him for the results, he was sort of vague about what he had seen and referred me to a Neurologist.
The Neurologist ordered a lot of very strange tests and, yes, LOTS of bloodwork. When I returned to him for test results, he was quite blunt when telling me that it was MS! I was stunned! He discussed medication options with me and decided that starting me on Avonex right away would be the best thing. Thank goodness for the training nurses that the pharmaceutical companies provide!
The Avonex has slowed the progression of my disease to a near halt. I have not had as severe symptoms as you are experiencing and I am sure it is because we found the MS very early and started the medication right away.
My main complaint is the fatigue and I can fully relate to what you have said in you blog about it. No one can understand what is is like!
I realized, after the diagnosis, that I had been having symptoms for several months prior, but, being the age that I was, I attributed them to menopause. Again, the main symptom was fatigue. I have always been a person who could start an activity, such as working in the yard, and go, non-stop, all day. But, the summer prior to my diagnosis, I’d go out to work in the yard, and after just a couple of hours, I was so tired that I couldn’t move. I would just sit down in the spot I was in and be done for the day.
And, to make matters worse, I’d go in to take a shower, and I LOVE long, hot showers, and when I was finished, I could hardly move my legs to get out of the tub. I have since learned that extreme heat is my enemy.
Also, I’ve had a few migranes; two, specifically, before my diagnosis, and a few since. I had never experienced migranes and was surprised at how debilitating they can be.
I think the scariest experience I’ve had since my diagnosis, though, is an occular migrane that I experienced while at work, one day. I saw a flash of light, similar to when someone uses a camera with a flash, and then there was a hole in my vision. I called my eye specialists who advised at least an hour’s rest and if then if the hole wasn’t gone, to come in and see him. The rest seemed to aleviate that symptom.
Since starting the Avonex, my symptoms are fairly vague. I am cautious to not wear myself out and pamper myself with naps when I feel like it. I also have the luxury of not having to work outside the home anymore, and that makes life so much easier - stress is a BAD thing for a person with MS.
I’ve learned over the years to ignore a lot of the little stuff that goes on - I don’t type as well - the brain and the fingers don’t work as well together; I do as you mentioned, coming home from the store with mystery items; I’ve put empty pans on the stove to cook; people’s names elude me. But, if we waste our time worrying about everything that happens to us, we lose our quality of life, and, like you, I try to stay positive and not dwell on the fact that I have MS.
Again, thank you for this forum. I have bookmarked your blog and will check in often to see how you are doing and watch for new information regarding MS.
Peggy, the “thanks” go to you here, for sharing your story with my readers. I’m right here beside you, my new friend!
Kim I appreciate this personal accounting and perspective.
I own Presque Isle Rehab technologies, a Custom Wheelchair and Orthotic and Prosthetic shop here in Erie. I see so many people and families who live with MS or other progressive diseases who are facing it on their own. Some have big shoulders and some struggle. People usually are not connected, living on ever shrinking islands . When I work with them I am looking to understand their goals and maximize their independance with what abilities they have remaining. I encourage them to reach out to others and stay as active as possible. All of the people I service have profound needs. My heart breaks mostly for the person and /or family who is walking this path in solitude.
Congratulations on being you and making a space where people can find a knowing perspective.
Jim Noland
Jim, thanks so much for posting here! Please feel free to share my blog address with the folks you service. Also, I made a posting awhile back — addressing the fear of whether or not I will end up in a wheelchair. Click here to access the posting. Maybe you could post a reply about life in a chair — how it doesn’t have to be scary — how mobility devices (chairs or other devices) can be helpful. I try to focus on the positive here, but I also want to be real. If we — together– can educate folks about the benefits of mobility devices, maybe they (a) won’t feel so alone or (b) feel so scared if or when the time arises that they need your services.
Best,
Kim
Kim,
My curiosity is greatly arroused regarding the MS Recovery Diet after reading other’s comments. Where do I find information about the diet without buying the book?
Thanks!
Hi Peggy, one of the authors (Judi) posted a comment under “Hanker for a Hunka.” You could engage with her under that blog posting. You can also visit their web site — there is a spattering of info available there including exerpts from the book. Both authors also have their own blogs, too. It looks like there are places for Q & A, a diet forum etc.
http://msrecoverydiet.com/
There are also used copies of the complete book available on Amazon:
http://www.amazon.com/s/ref=nb_ss_gw/105-5769637-0189239?url=search-alias%3Daps&field-keywords=ms+recovery+diet
I ordered mine today!!
Thanks, Kim. I’ll check those out!
Kim,
I’m missing your daily commentary. I hope that all is well with you.
Hi Peggy,
Thanks for checking in on me, it’s been a crazy couple of days. As you’ll read in today’s posting, I’ve been very symptomatic, so I switched my postings to the evening earlier this week. I took the day off yesterday because I just didn’t have enough spoons left at the end of the day to check in with my readers. I’m back and on track today!
I truly appreciate your concern! Enjoy today’s posting and I’d love it if you could answer any of my questions (LOL). Please? Even a pretend answer would be better than “I Don’t Know” right now (big smile).
Kim
Hi Kim,
I just tossed a couple of spoons your way. I hope that you grab them and have a better evening. I want to share the following with other MS’rs like myself who may have at one point struggled or may be having difficulty in their relationships (spouse, partner, friends or family members etc.) because of the stress put on a relationship as a result of life being interrupted by MS or any chronic illness for that matter.
“Life Interrupted, It’s Not All about Me” by multiple sclerosis sufferer Chris Tatevosian.
A book review has been posted at MS world.org visit the link below by cutting and pasting the link into your browser:
http://www.msworld.org/html/lifeinterrupted_Tatevosian.htm
and when you click on the book cover or the Amazon link at the end, it links to Amazon to order your book and Amazon.com will donate 5 to 15 percent to MSworld.org.
Check it out and God bless,
Chris
MS World - Patients Helping Patients!
http://www.msworld.org/html/li...
MSWorld provides information and support to people with multiple sclerosis and their families.
Share from couple of a book out of
Hey Chris! Thanks for posting here! And, thanks for the spoons. Any chance you have a full set to spare? LOL.
Folks –if you don’t know what the heck we’re talking about, read this article: http://sunshineandmoonlight.wordpress.com/2007/12/29/the-spoon-theory/
Readers, you’ll be able to learn more about Chris and his ability to find his own Sunshine, one week from Sunday, when he’s the feature of O Sole Mio Sundays! Make sure to stay tuned!
Kim, I am absolutely amazed at the amount of information and discussion, personal experience and research, already on this blog; you were only diagnosed last November?! Amazing. ell done. I will be back for a good read.
Meanwhile, this is just to add to your discussion by asking, “Readers of Sunshine & Moonshine, has Kim increased your awareness and understanding of MS (assuming you do not have the condition) OR has Kim created a web space that supports and comforts you (assuming you do have MS, like me)?
Shirl, I am a good friend of Kim’s and have been following her progress with MS from the beginning. She HAS increased my awareness and is trying (as she is herself) to increase my understanding of MS. After talking with her yesterday…we agree that there is SO much about this condition, it is impossible to completely understand it. However, Kim is working overtime to be able to understand what is going on with her…and is then passing on her new knowledge to the rest of us. I love Kim and what she is doing with this blog. It not only helps her, but I’m sure has helped so many others like myself.
Kim,
I just started reading “Water for Elephants” by Sara Gruen and I smiled when I read the first page. The character starts out saying, “I am ninety. Or ninety-three…”and goes on about age. But, then the rest of what he says on that page sounds just like all our bothersome symptoms! The page could have started, “I have MS and…”
Thanks, Peggy. I’ll check it out!
In reference to your posting today, and paying attention to our symptoms by “talking” more about MS - have you experienced “fantom” or “mystery” itching? The other night I felt like one of my fingers was itching, but, when I went to scratch it, I couldn’t locate the exact point of the itch. It was like the itch was in the space between my fingers, but not actually on my own hand, and it was SO frustrating! Thankfully, it went away after just a few minutes.
Peggy, YES! We’re connected in yet another way. It happens mostly in my arms — an itch under the skin that can’t be scratched. It’ll be around for may a half hour and then disappears again. I look like I have fleas!
LOL!!!!!!!
Kim,
It popped into my head that you mentioned recently somthing about experiencing a “dandelion sparkle” (or something like that) in your vision. This is something that I’ve experienced on several occasions since my diagnosis. It was sort of frightening the first time it happened (not nearly as frightening as the time I experienced the hole in my vision, though), but it dissipates after just a few minutes with my eyes closed. My Opthamologist told me that these are opthalmac (I think that’s the word) migraines. Regular migraine headaches are also something I’ve experienced (only 3 or 4 times, thankfully) since and right at the time of my diagnosis - NOT FUN! The fun just never ends, does it??
Hi Kim-
I just read your post–sorry to hear you may be having a relapse! Are you thinking you may be switching the copaxone? I think I’ve had a couple of relapses within the 9 months I’ve been on Copaxone. Both times I was treated with IV steroids which seem to help– My relapses seem to manifest themselves with a decrease in strength/weakness. Doesn’t work well for a PT, whose attempting to work??!
Hang in there and good luck on Monday with nuero!!
Gretchen
Hey Gretchen, the neuro actually made me stop Copaxone a couple weeks ago after my IPIR/and alergic reaction. On Monday we hope we’ll find out what we’ll do next. Thanks for the luck!
Kim
I have had a diagnosis of MS on Feb.of 2003. I’m on Rebif now for about 8 months. Was on Avonex before that for 5 years. Have been going to the Gym 3 times a week for the past year. Can’t tell if the Gym is helping but it must be.
I know it is helping to get out and be with my new friends at the Gym. I need to use my mind as much as I can at this time as I’m not the Sharpest knife in the drawer any more.
Chris
Kim-
I have been away at college for the past four year and have been away from my mother. My mother has MS, has had it since she was in her early 20’s, and is now 58. She has been lucky and still has full mobility and is not in a wheel chair. However, this is still difficult for her because she has the symptoms inside, but shows no signs on the outside. Something that I have stuggled with is that she never talks about her illness, and when I ask her about it, she says she’s fine. Recently her doctors have found some “spots” (I’ll use your less scary term for them) sparkling on her brain. I was wondering, because you are so open to discussing your illness online, how you think I should approach my mother in discussing how she feels so that she knows I care about her, and want to discuss with her fears with her. Any insight about this would be great. I really have no one to talk to about this.
Thanks for being so vocal. I will be visiting your site often, for it provides me with information and inspiration.
-Olivia
Olivia, Thanks for reading!! It’s amazing that you care for your mom so much to research her disease. You should be commended as a caregiver. Not everyone is willing (nor wants) to talk about their disease or health problems (my hubby is one of those, smile). Also, if your mom says “I’m fine”, perhaps she is fine indeed. It sounds like she has learned to live with this disease effectively for many years.
She may indeed already have someone to talk with about her MS, but perhaps you’re not aware of that person. I’m just guessing on all accounts here. Perhaps, as a mom, she is just trying to spare you all of the details and worries about her and her health.
Here’s my suggestion (allow me some latitude here to use my $45,000 masters in counseling education for some good for a change) — show her you understand her disease a little. “Hey mom, I was reading a great article.” Or, “Mom, did you know there is a foundation researching the remyelenation of the brain? It’s exciting news!” Don’t judge her or force her into a conversation. By showing her that you have researched the disease may provide her with an outlet for discussion. I certainly get frustrated trying to talk about the disease with an individual who doesn’t even know what the M and the S stand for, smile again. Showing that you educated yourself, now as an adult (vs. when you were “just” a child) may help your mom open up to you. You should also respect her privacy though, should she not want to talk about it. Take baby steps.
You could also direct her here to the Sunshine and to other sites to show her what you’ve been reading/researching. PatientsLikeMe.com is another site that allows me for conversation with like-minded folks when I need it. Caregivers participate as well as patients. You may find a great community there for yourself as well as your mom. Maybe the next time you’re home visiting you could hop online and join the site (it’s free) together.
I’m sure your mom would be highly impressed and honored that you have taken time away from your years of college to learn more about her. Perhaps that’s the way to begin the conversation in the first place. Or simply, send her an email with a link to your posting and that in and of itself will start that all important conversation.
I hope you continue to visit and drop me a note to let me know how it goes with your mom. Also, visit the blogroll to email me privately. I’ll be here to talk with you if you ever need someone!
Be well, Olivia (great name, btw),
Kim
Good for you and the exercise regimine! I’m having trouble getting back into one, especially with the heat and humidity. How are you managing such long walks at lunch time what with the weather? Or are you able to do it indoors? Also, at the risk of sounding ignorant, what kind of leg lifts are you doing for such an extended period of time - mine sure could use some work. I’ve been pushing my husband to get our bikes ready to ride - we have wonderful bike paths close to home and it’s really my exercise of choice. Thanks!
Peggy, I’m fortunate to work in a location that sits back in a wooded area. We have a paved drive that allows for easy accecss to lunchtime strolls. And, I have a colleague that doesn’t seem to take “no” for an answers these days when it’s time to walk, even if it’s 90 degrees outside.
For leg lifts, I’m doing bicycles while laying on the floor, and then single and double leg lifts and extensions and I do them while watching television! Always the multi-tasker!
Hello-
I need (want ) to join in on the exercise conversation. Summer is here so my bad excuse of how tired I am after working is gone for the next 8 weeks. The question I have for anyone is about foot drop/leg weakness. What I find is that as I increase walking or my activity level I have major issues with foot drop. But it also will sometimes manifest itself with weakness. I find myself hyperextending my knee and other creative ways to stay quasi stable to get where I need to go…
I have finally come to the conclusion –reluctantly — that I may need to get an orthotic at least for exercise. I use a cane when needed already. Does anyone else have the issue where they do ok in the am and by pm really have a hard time with mobility?
I find myself really frustrated when it creeps up when I’m least expecting it. Such as quick trip to the grocery store ( carts are the best!) and I am crossing street/ walking back to my car and walking becomes near impossible–takes 4 times as long to get across the street , cars waiting etc. Help– I know I need to keep walking– I already use a scooter to go long distances at work so I can be on my feet and useful for short distances.
Does anyone have some thoughts about all of this? What other things should I try?
I appreciate any input!
Hey there, GG, it’s so funny b/c just this week I’ve been experiencing terrible foot drop and depth perception issues. Tripped four times, twisted an ankle once, and (no kidding) fell down a flight of stairs. I hadn’t even correlated with exercise, you would think my darn legs should be getting stronger, no?
So Kim, when you experience all of these issues with foot-drop are they accompanied by weakness in your leg as well? What do you do to stay on your feet and walk around? There are times when my walking is such that I stop, but I assume that with strength it will get better as well. In the Fall I was trying to walk on the treadmill or bicycle. I could do about 20 minutes and then walking out of the club my foot/leg would act up. Then I started working a tad more which is definitely physical and…. It was a great excuse to stop and I did. Just finally getting my emotions/psychy together to try again! But I so want to believe that strength will help with some of these issues……I’m just not sure??!