Active MSer? Introduce Yourself Here!

[ireneg]

MS is an inconvenience

In the eight years since I retired, my husband and I found that our brains were under attack. Mine had lesions and fingers--Why did Dawson leave his fingers in my brain? Balance and mobility issues have become problems to solve. When staying in bed didn't fix fatigue, I returned to water aerobics and fitness classes. And along the way I discovered Tai Chi for exercise of the body and mind. My husband began showing signs of Parkinson's four years after my diagnosis. After being assured that PD was relatively easy to live with, the diagnosis changed to Lewy Body Dementia--not easy to live with. So I battle two diseases, mentally, emotionally and physically. I haunt the internet looking for answers where there are none. I stay active for me but also so I can take care of my husband of 52 years. I am fortunate in having the love and support of my family. My son's family has moved in with us to help out. My weekly schedule includes two sessions of PT and teaching four seated Tai Chi classes. I also work out on a NuStep. My husband often asks why our brains are under siege. I have no answers. I only know I need to sidestep the inconvenience and keep moving.

Details: I am a 72 year old retired educator. I completed my doctorate 10 years ago. My son and daughter are 45 and 42 and they have given me the joy of three grandchildren. Born in Wisconsin, I have lived in Georgia for 35 years. I remain a Packer fan.

[The MS Wire]

New kid in town

I'm the new kid here but I'm neither a kid (67 years old) nor new to MS (DXed in 1980). Over the past 36 years my MS has slowly progressed from being hardly noticeable to requiring a cane and a Bioness cuff for short distances, and a scooter if I want to travel a block or longer.

Just the same, I worked full-time in the news media in Washington, DC until retiring at the end of 2012. While at work I traveled all over the world and my wife and I still travel for fun, taking along my scooter.

I've been through a lot of serious drugs over the years - Solu-Medrol, Avonex (a participant in the first clinical trial), Tysabri and now Aubagio.

I'm now combining my writing experience with my MS knowledge to create an MS blog: www.themswire.com. It's purpose is to provide current info about traveling, working, treating and living with Multiple Sclerosis. It's just getting off the ground, and can't hold a candle to Dave's excellent web site, but I hope it'll be useful to some folks.

[Who_Am_I?]

Hello - this is my basic info

I am a 48 year old male living in Los Angeles. I'm divorced, I have 3 adult kids who have been keeping me busy for the last 25 years but now they have all abandoned ship and I am bored. I'm new to online forum communities, but I lack social interaction with other MSers so I thought I would give this a try.
I was diagnosed in 2002 at age 35. I ignored my diagnosis for about 12 years and for the most part it was not hard to ignore, but then it caught up to me. August 2015, I tried to make an appointment with my original Neurologist, but he had retired so I saw his replacement. She was skeptical that I even had MS because I had not participated in any DMD program since my diagnosis. She ordered an MRI and then she believed me and ordered a course of solumedrol due to the amount of active lesions presenting on the MRI. December 2015 I started Tysabri and everything has been okay so far.
Why am I here? I'm here to learn and hear from other MSers about their journeys. I'm also here to try to find ways to increase my physical activity because I feel that is the key to maintaining good health, but I struggle with starting any new physical routine. Who am I? That's what I'm trying to figure out.

[CanadaK8]

Hi, I'm Kate. I live in Eastern Canada. I'm 53 years old and I'm "semi-quasi-almost-could be-diagnosed" with MS. Apparently, some of my symptoms are "atypical" which is slowing down the official diagnosis but for anyone's money right now, including the neurologists, I've got MS. I'm in the midst of an active flare up and just had to start using forearm crutches.

I think I have a half-assed decent attitude about all this. I was a police dispatcher for nearly 25 years and I know tragedy. This ain't it.

I'm world's most failed athlete but I'm trying to keep active because... use it or lose it. I'm a certified yoga teacher and have been maintaining my yoga practice well. I just started using forearm crutches and am starting to appreciate how much my fear of falling had limited me. I make a point of getting out for a walk everyday. Baby steps, baby steps.

I'm married, one adult child, 2 fur-bearing freeloaders of the feline variety. I went back to school and finished my long abandoned undergraduate degree last year and I'm starting an accounting program in the fall, depending on my health status.

[gutti]

Introduction and a question

I'm glad I found you, guys, because I live in Hungary and there isn't any platform for those who choose to be active in MS.

I'm a 34 year old girl. Usually I exercise 5-6 days per week. I do pilates, squash, hiking, inline skating, running. Fortunately my MS looks benign for now, I had only 3 exacerbations in 10 years and all of them were primarily sensory ones.

I've been an old fan of your website but I registered today because I have a question I cannot ask from my doctor because medical protocols overprotect the patients. I guess it is safer for doctors for legal reasons.

I'm having an exacerbation right now for 3 weeks. The right half of my body has paraesthesia and my right arm is a bit involved motorically as it feels a bit weak and I have tiny coordination issues. My question is, when do you suggest to start being active again? Is it allowed to do sports during exacerbations? And the most important: I planned to hike the Olympos, the top of Greece 5 weeks from now... do I have to cancel this journey?

I will be very grateful if you can give me some advice.

-------------------------

MEMBERS: Reposted in the General forum. Please help gutti there instead of in this thread. Thanks! Link below.

http://activemsers.wssnoc.net/showthread.php?t=2074

[FlightDXer]

So, I've recently been diagnosed with RRMS. I've had a few symptoms come and go over the years and mostly dismissed them. Except both of my hands went numb this summer while hiking Grand Canyon and I couldn't hardly keep my grip on my trekking poles.

I went to the doc thinking maybe I did something to my neck. My first words to him were "Whatever you do, just don't tell me this is MS." A few MRIs, blood tests and a LP later....it's MS.

I just started Copaxone 40mg this past week, changed my diet to more paleo-ish, upped my omega 3s and vitamin D3, and read almost everything in this board. I also contacted the PVA since I think my first documented symptom was 5 months off of active duty. Cheers!

[tazcliff]

introduction

Its been a while since I have been here. I just recently found this forum again. My name is Cliff and I have had MS since 2007. I am currently trying to be a lot more active and fit while also trying to loose weight. I have lost 40lbs so far and would like to loose at least another 20 to 40lbs. My biggest issue at the moment is foot drop as I get tired while jogging, around the 1.5mile mark. My current goal is to try and work up to a 5k race and to accomplish a Yosemite Half Dome hike. Thanks

[fredmo63]

Hello!

I am Fred. Its nice to be here. I'm in my early fifties and I live and work in KY. I have been married for a long time to a wonderful and hugely supportive women; I have two fantastic teenage (grown-up?) daughters.

I am passionate about all kinds of things: my work (I am a geologist and professor), family, travel, the environment, yoga, music, cooking.... Increasingly its been health and wellness!

I was diagnosed with RRMS in 2002 and then re-diagnosed with PPMS in 2011. I am still pretty functional, but my vision is getting screwy and I have all the lovely balance and coordination issues that we deal with. I am quite convinced that activity, proper diet (I am pretty much paleo), rest, and stress reduction is key to managing this disease.

I love the slogan of this site - MS is BS! I believe it to be true. Its nice to be here, cheers!

[Irene]

Hello from India

I was dxd in 2010 (RRMS), and after moping and moaning about it for a while, I discovered activemsers and realised it wasn't the end of the world.

I wrote this post (http://activemsers.org/irene.html) a few years ago and have been following the site for a while, I just never introduced myself here!

I'm on Avonex, works pretty good, I guess, but it has made me photosensitive (that means I get an itchy rash even in the mildest sun). That plus heat sensitivity is not great in a tropical country, even though I live in a rather cool city.

I think I'm doing well for someone with about 20 lesions in my brain alone (more in my spine).

Should I sign off saying I love activemsers and all the cool people on it? Duh

Irene

[Newtoms]

New to ms

Hi,
My name is Debbie, I was diagnosed with ms last week. Not too suprising since I have been googling my symptoms for years and had a feeling it would eventually be diagnosed as ms.

Im very heat sensitive, live in St George Utah and our summer is already here-last few days 106 degrees and no relief in sight.

Im going to order a cooling vest, I am 5'1" and 100 lbs. I've looked at many vests online thanks to Dave's testing and suggestions-thanks Dave.

Wondering if anyone has any experiences with StaCool. This seems to be the vest that wont drown me in size.

Any suggestions would be very helpful.

Thanks so much!

[MSRunner26]

Hello from the Hudson Valley NY!

Hi Everyone, I was diagnosed in October 2006. For a while they couldn't pinpoint how bad the MS was going to be. I was having flare ups every six weeks. Fast forward three years after Avonex, they tried Copaxone. I took myself off of every drug, went organic and re-set myself. I am now on Rebif for two years, have maybe 2-4 flare ups per year for the last two years and feel that I finally have this somewhat under my control. Dr's categorized me as RRMS.
I am a pretty active person that does running, yoga and PiYo. I have been married to my love, my soul mate for 21 years. We have two children, boy age 20, girl age 14. I work fulltime and hubby and I have our own business for the last two years.
I'm glad I found this site! Regards, Marisol (MB)

[CEngel]

Introduction

Hi All

My name is Cynthia & I live in Seattle, WA. I'm an MS newbie & was diagnosed on April 17, 2015. A few years ago, BMS (Before MS), I was on a mission to lose weight, be as active as possible, become healthier, travel & to live a great life. In the last 2 years, I've lost 27 lbs, dramatically changed my diet (from fast food to real food), and was a picture of health. Now, living with MS, my refocused mission is to continue to go on more adventures, be around good energy, connect with interesting people, learn new things, and live the best life ever. So, most things haven't changed.

I will be taking Rebif soon (waiting for insurance to process), am now eating an anti-inflammatory diet, and continue to exercise daily. At this point in my MS journey, I have very little symptoms & only two lesions (one on spine & one of neck). So, despite the tingling & occasional fatigue I continue to experience, I am otherwise pretty good.

Biggest change for me is that I've changed my method of stress release from kickboxing to yoga/pilates. Mostly I changed as I'm worried that too much kickboxing will push me to the fatigue edge. Although slowing down was initially a huge mental challenge, it has been very good for me as I am learning to being okay with a slower pace.

Thank you Dave for this forum & for you all being part of this community.

Best wishes,

[Jodi]

Newbie

Hi, I'm new to this website. I was first diagnosed with MS in 2000, however I was not put on medication. My Dr. then said the side effects were worse than my symptoms. I didn't have a major relapse until 2011 when I had two and was misdiagnosed for those relapses and not treated. I still have numbness in my hand and arm from them. Then last year I had another attack and saw a specialist who started me on Rebif. It took almost a year to get my system back under control, but I am getting better.

I know I need to get active again. We moved to Colorado two years ago and I really want to hike and kayak and do all of the fun things the Rocky Mountains have to offer. The last year has been tough, I'm trying to adjust to my new "normal".

I look forward to exploring this website more.

[allanmiller735]

Allan Miller SPMS Victoria BC Canada

Hi everybody

This is a great blog. Very positive and I find that very helpful.

68 year old male retired elementary school teacher from Ottawa. Statistical outlier. Diagnosed 3 years ago with SPMS.

My wife and I are moving to Victoria where the weather and walking is better.

I try to keep my weight down. My GP and the physiotherapist from the MS Society of Canada both gave me a gentle smack down and said to only use a scooter or power chair when I really need to. Use it or lose it!

On May 3rd my team, the Miller Milers raised over $9,000 for the MS Walk. I walked 3 km with my outdoor rollator, a Swedish one. If you're interested send me a private message or email to allanmiller@pobox.com and I'll give you details. I also use shock absorbing cane tips that I imported from England. They protect my hands, elbows, and shoulders from stress. I type on an iPad and I use a predictive keyboard app which makes that easier. And I also dictate typing for emails, etc.

Thanks, David, for the motivation to stay active and positive!

I'm on facebook if you want to follow or friend me. Always positive!

A
~

www.facebook.com/allan.miller

[SunnyTew]

Thank You!

I stumbled onto this site when researching forearm crutches and I AM SO HAPPY!

I was diagnosed 2 years ago after 5 years of fighting doctors that something was wrong. MS hit me over the head with a 2x4, and the docs finally paid attention when they thought I was having a stroke. Now, I just want to be active again. Your site has given me such hope that I can find a way to do the things I love to do...just walking for longer than 2 minutes is a great place to start.

I don't want to hide anymore. I live in a beautiful state (CO), and I want to get out and enjoy the scenery.

Thanks again!