Active MSer? Introduce Yourself Here!

[agate]

I'm new here too--just found this place though I "knew" ActiveMSers on another board, one I no longer belong to.

I've had MS since 1978-1980 and am still alive and intending to have many more years ahead.

I get along pretty well as long as I'm in charge of the time and temperature. When I go out and it gets too hot or too cold, I run into problems.

I sit most of the time and that sitting is in a wheelchair but I can still walk a few blocks unassisted.

Some leg instability has set in during the past year, and now when I go for walks outside, I push my wheelchair and do much better that way.

I live alone in a HUD rental apartment in the Pacific Northwest. My son lives a few minutes away. He's in his early 40s and works as a software developer.

I look forward to spending time here. It looks like a lively place!

[LivWell]

This is a great board -- nice to "meet" you. :-) There's no better virtual support group on the planet IMHO!

[tea6erry]

newbie in albuquerque!

Hello everyone!

I'm Abby, and I recently moved with my husband and cats to Albuquerque, NM from the Washington, DC area, in no small to take advantage of the active outdoor lifestyle here in the Southwest.

I was diagnosed with RRMS in 2012 but continued to stay active with belly dance classes and yoga. I am now getting into cycling and doing more hiking than I used to as well. I am a yoga teacher, a newly-trained mediator, and a struggling writer.

Happy to be here!

[Sandra]

Active MSer? Introduce Yourself Here!

Hi everyone,

My name is Sandra. I live in Babylon, NY (that's on Long Island, near Fire Island), but I am a born and raised NYC girl. Long story about how I ended up in suburbia, but once my daughter graduates from high school in 5 years, I'm going back!

I've had MS since 1989, but wasn't diagnosed until 1999. I used to bike, run, rollerblade, and was overall very active. These days, I swim and walk for exercise. After 25 years, this disease has taken a toll! That said, I feel very fortunate that I am able to walk, work and raise my daughter after having MS for so long.

Mina, until recently, Dr. Miller was my doctor, too. he's great; I just felt that after 15 years, i was ready for a new perspective. I now see Dr. Stark, who is part of Dr. Sadiq's practice.

Anyway, so nice to meet everyone. Thank you, Dave, for starting this forum!

[Saruncbus]

Hello,

I've been following along as an observer for a very long time. I figured it is time to introduce myself. I was diagnosed with MS a little over a year ago. Life has kind of changed, but more emotionally than anything. I view MS as my own little gift that has helped strengthen me over the year.

I am so thankful that activemsers exists because it has provided me some laughs over the year, and I have certainly gained some positive insights from activemsers. I'm so glad to be able to read about some of your journeys.

Sarah

[Jim P]

Hello!

My name is Jim and I am from the enchanted state of New Mexico. I am a retired middle school teacher. My beautiful wife of 30 years is also a teacher! We have two daughters. I enjoy exploring in my Jeep. I can't hike anymore but try to get out as much as I can.

After struggling with symptoms for over a decade, I was diagnosed in Jan. 2014.

[kim-mastro]

Hi!

My name is Kim and I was diagnosed back in 1978. I just began dmd (copaxone) June 2014. Long story as to why I waited so long! I, too, am a middle school teacher (u.s.history). I'm from CT and hoping to retire in 2015-2016. We had quite a heat/humidity wave this past week (NM people-how do you do it?) and my classroom isn't air conditioned and will never be air conditioned. A anyway, thanks to Dave for giving us a place to connect with others dealing with the same issues!

[LivWell]

Welcome! It's great to hear from everyone. I browsed the board a while too before adding a comment now and then. Activemsers is one of my favorite go-to places for community and a positive spin on living with MS.

[EquestrianChemist]

Hello!

I have also been reading this site for a while but just decided to take the plunge and join. I live in Canada currently, though will return to my native Austria soon, and was diagnosed with PRMS 5 years ago.

I am a professor of biochemistry with a research interest in chondroprotective agents in horses. I also compete in show jumping and dressage. Although MS has tried to take horses and riding away from me more than once, I am determined to keep up and excel at the sport that has influenced my entire life. I currently use only afo's and sometimes crutches, after having spinal fusion surgery in 2012 to allow me to sit upright with some form of core control and eventually to walk again and leave the wheelchair behind.

[PilatesSarah]

Hello,

I've been following the site ever since my diagnosis of RRMS at the beginning of 2013. I have found it so encouraging to read of so many stories of hope. I'm from England, but my home for the last 9 years has been in the South West of France near Toulouse. Being a naturally active person I am now beginning to get on with my life again. I teach Pilates and have recently started training for my biggest challenge yet, that of cycling up Mont Ventoux on World MS day next year. I'm hoping others may want to join me.
Anyway, thanks again for a wonderful site and access to so many other people in the same boat.

[Wendylea]

Hello

Hi, just found this site. I was diagnosed with R.R. 5 years ago. I am not on any drugs. We recently moved to another province (in Canada) and I have been sick so unable to exercise. I need to get active as I know how important it is. Glad to have found this site.

[teena marie]

Welcome to you both.

What part of Canada? I'm from Montreal.

Teena Marie

[JOHNVAL59]

Sclerosifide

Hello my name is John. I've been Sclerosifide since 4/2005. My treatments started with ReBiff. The disease started progressing rapidly in the last half of 2006. January 2007 woke up one morning and I was almost an inviolate. My neurologist started me on Novantron (chemo-therapy) took 4 treatments on every three months. This treatment got me back on my feet and I could walk well with a cane. I started Tysabri treatments Dec. 2007 and I was just told by my doctor that having taken this drug so long I now had a 1 in 10 chance of developing the PML brain virus. It's pretty much a death sentence. So Oct 2014 was my last treatment.
Ok so that is the MS story. I have never surrendered to this disease. Jesus Christ is my Lord and Savior. I have a close relationship with him and try to help as many other people to come to know him as well as I do. By his grace and mercy I wake up everyday a happy person. My wife and children have been wonderful caregivers. My walking is limited, so I use my wheelchair the majority to the time. It is very good exercise. I am an IT Tech and my company has allowed me to work from home since 2007.

[loshakova]

Hello

Hello, my name is Heidi. I don't have MS, but I joined with Dave's blessing. Thank you, Dave!

I was diagnosed with Late Stage (CNS) Lyme Disease in January 2010 after 8 years of serious illness. Before that, I was very active -- ran 3 miles a day, walked to work and back, and walked or hiked 20-30 miles on the weekends to relax. I'm trying to stay as active as possible; I actually found this site while searching for lightweight elbow crutches. Thanks to whoever mentioned the Walk-Easy brand -- Fettermans and Sidestix are outside my budget right now, but the Walk-Easy 495s I got are eons better than my previous elbow crutches! I bought them from Fetterman after having a long conversation with Brian, one of their sales reps, about the ins and outs of elbow crutches. After reading your equipment reviews, and at Brian's suggestion, I also got a pair of Tornado tips. I just got the adjustment checked out by my PT this week, and took them for their first spin this afternoon -- ended up walking twice as far as I'd planned because they were so easy and comfortable to use. It's so great to be able to see directly in front of me as I walk again, instead of having to peer around my rollator seat!

For other exercise, which I do every other day, I do situps, wall push-ups, leg lifts, an isometric exercise to help strengthen my back muscles, and sometimes seated T'ai Chi. I'd be very interested to know any exercises regular elbow crutch users have done to strengthen their shoulders and upper back.

As a sculptor and biologist who has taught in both areas, my special interests include art, biology, and teaching. Also food. I love to cook. And knitting. And canaries (I have two). I'm looking forward to meeting you!

[GerlindeP]

Hello from California

My name is Gerlinde. I'm German, but live since 1990 in California, close to San Diego. I don't have MS - my son does. He was diagnosed at the age of 24. He went from a very active outdoorsy person to a not being able to function couch potato over the course of 12 years. He had a very rough ride with the disease from the beginning. He became disabled very quickly. But this did not stop him from trying what ever he could to keep his independence. He was on Rebif, then Avonex since he could not deal with the side effects. After that came six years of Tysabri. But nothing stopped his decline. By the end of 2013 his Neuro took him off Tysabri since he tested JVC positive. He put him on Tecfidera, which resulted in a major exacerbation with disastrous consequences. My son lost his independence and had to move back home. It was heartbreaking to see him in that condition, he lost his will to live. To make a long story short, I found help for him. He had HSCT, performed by Dr. Richard Burt in Chicago. He is now 3.5 month past his transplant date and is doing great. I wrote a blog about his journey if you would like to know more about his treatment: http://gpecht.blogspot.com/