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ActiveMSers 07-08-2008 05:29 PM

Active MSer? Introduce Yourself Here!
Glad you found us at ActiveMSers. I invite you to introduce yourself here in this thread. Be as brief or as detailed as you want. I'll start....

My name is Dave of Albuquerque, NM. I started ActiveMSers in March of 2006, a week before I was officially diagnosed with MS at age 37. Began a DMD (disease modifying drug) shortly thereafter. Married to a fantastic wife (no kids), I like to snowboard, travel, bike, cook, hike, and hit the gym. Hi everyone!

(If you are bored, you can read my full story here:

mina 07-09-2008 02:49 PM

hi! i adore this site & am sooo grateful to Dave for providing it. Thanks Dave!

I live in NYC, got diagnosed with RRMS about 1.5 years ago. had only one relapse since. & just found out I'm pregnant! (yes, married too.)

I thought I'd post that b/c I found it so hard to find info about pregnacy & disease modifying drugs. so if anyone has any questions...

I was very active before my diagnosis & then for about a year was paralyzed with fear. Used to run, bike, do yoga, play tennis, etc. Slowly getting back into those things I love. What helped me enormously was physical therapy. Helped me differentiate what was MS-related & what was just being out of shape.

Starting activities again improved my mood & I am back to (almost) my old, happy, optimistic self again :)

Bridget 07-09-2008 03:38 PM

Hi - My name is Bridget and I'm from NYC and am single. I was diagnosed 1.5 years ago (same time and city as Mina!) and went on Avonex right away. I've had 3 relapses since I've been diagnosed but except for those times I feel basically fine and have continued by workouts as before.

I go to the gym just about every day and really like the elliptical and spinning. I'm like a spinning addict! I also like hiking; but it's hard to get out to hiking spots from the city. I also like going out with my friends and drinking wine - is that an active pursuit?

I used to run alot (~4 miles several times a week); but gave that up when I fell last summer (it was the beginning of a flare). I want to get back to running; but have a big mental block there. Help encourage me to start running again!

So glad to have found this site for like-minded, positive people!

kinnv 07-09-2008 04:46 PM

Greetings from Nevada!
Hi Everyone!

My name is Kathy - I was born and raised in Albuquerque but have resided in Las Vegas, NV for over thirty years. I was diagnosed with MS almost two years ago - a real shocker as I am 59 years young!!

I am currently on Rebif. So far - so good. I have refused to let this disease get me down. I am an avid traveler and have a passion for the outdoors. I did run - ran my first marathon 4 years ago but now my little legs just won't go that far!! I do yoga daily which really helps with my leg stiffness.

Thank you Dave for providing this great forum!

Wishing you all a good, good day,


AbqMSer 07-09-2008 04:49 PM

Hi all; I have been diagnosed with MS since 1999. Trying to network and find other people to connect with that have MS as well.

Hope to see you all at the "Quiz the Neurologist" on July 16th.

Dave: Thanks so much for putting the effort into starting this...

Angel@ 07-09-2008 05:02 PM

hi all,
I'm a 30 year old ;) woman from the Netherlands. I was diagnosed with RR MS in sept '05. started om Avonex in okt '06

I found "activems" as I was doing research om traveling with MS and avonex, as I was planning a trip to the USA in okt 2007.

must admit that I'm not as active as I should be ;) but keeping my daily life up and running can sometimes takes up too much energie and time. :o

like it that this now also has a forum.
grats on the pregnancy, Mina and hope to visit the forum often
greets, Angela

mina 07-10-2008 10:47 AM

hi Bridget - wow I am so impressed that you are spinning - can only hope to get back to that level of exertion! I'd think if you're already doing that, running would be a cinch! do you ever run in Central Park?

what hosp/MS center do you go to?
I'm at Mt Sinai, Dr. Aaron Miller. He is great, very no-nonsense.

Bridget 07-10-2008 03:36 PM

hi - I'm with Dr. Apatoff - he's at Cornell Weill Med Center - but leaving there in a few weeks for some other location in midtown. Am waiting to hear about which hospital he lands at to see whether my insurance has them in-network. Awful that insurance is the driving factor for a choice of doctor; but that's our reality! I've heard of Dr. Miller - glad you like him. May be asking you questions about Mt Sinai depending on my dr.'s new hospital. I really like Apatoff though!

I used to run the West Side Highway - I'm an out-and-back runner (instead of a loop runner). I've runthe park in those NYRR races. I like the park - but can't get used to the loop - it keeps making me think about how far I have to go to the end of the loop! I do love the Central Park celebrity sightings though - Howard Stern, Kelly Rippa...makes it interesting. I just have to get myself back out there!

BethAcorn 07-11-2008 12:29 PM

Hi All
My name is Beth and I'm in Ohio. I just found the activeMSers site and am looking to get active, for the first time in my life. :eek:

I was dx'ed in 1997 and have tried and given up on 3 of the dmd's. Currently I'm on Imuran.

I sprained my ankle on Feb 1st of this year and am still in PT for it. I also started PT yesterday for back pain related to wearing a walking cast (being lopsided) for over 2 months.

I looking forward to this experience.


AmyK 07-15-2008 03:49 PM

I just stumbled upon this site happily. Was just diagnosed in May. Have been on Avonex for 6 weeks. Not convinced this is what I should be taking. Has anyone heard of Low Dose Naltrexone? If so, what have you heard?

cochrajk 07-17-2008 11:02 PM

What a great board...
Hi. I am to the diagnosis of MS; however, funny weird stuff happening for years and "possible MS" stated over and over and over.

Used to be an avid runner...not great, just persistent. I was running 4 1/2 to 6 miles a day, and now I get so over heated if I walk 1/2 a mile, run 1/2 a mile, and walk another 1/2 a mile that my right leg begins to not cooperate with me. I would like to get back there, so I am about to begin a 5-k training plan. Determined to find a way past the leg issues.

I live in the beautiful Pacific Northwest, so there is so much hiking, kayaking, biking, and beach walking to do...I just want to get the energy back to do it all.

Thanks for a wonderful message board. This is great that it is so positive and the site has so much information. Thanks for replying to my post about trekking poles on another site...otherwise I would have never found this place!

Aprilfools 07-18-2008 12:21 PM

Hi my name is Lisa and I am also from the Pacific NW. I am new to MS but not new to all that comes with it.

agserra1 07-31-2008 05:04 PM

Hi my name is Adrian .. I am the pessimist in this life of MS .. I don't get excited over all the new revalations that come out , I don't often get out even though I am able , and I tend to lean on the side of caution ...

Been living with MS for 7 years now .. and can remember when 'no pain" was related to MS .. so I am sure there are plenty out there that have had some same torturous events as I ...

While I do have a sen:Dse of humor, it takes a lot to get it to come out ..

Sonya 07-31-2008 09:08 PM

Hello to everyone,

I am Sonya, live in Alabama, got dx with RRMS in Feb 08. I am married, have 2 kids, and work full time. I did go to the gym (spin, weights) last summer and now I just don't have the time or the energy. I do swim when I can. I travel a lot for work and my job and family doesn't let me get still for long. Until I over do and collapse for a few days. Or like last week, have a little trouble driving (focusing). That episode scared us a little. I was also having slurred speech. It was 6 am so I was not under the influence of anything other than coffee!!! My neuro said it was likely from old lesions acting up, as I had not probably givenmy body enough time to recover from the previous day's drive. Just wanted to say hello and I am not as active as I wanna be, but right now as active as I can be. Would love to hear if anyone else is from Alabama or close by.

Lab Lover 08-01-2008 12:42 AM

Lab Lover
Hi Everyone!

My first leison appeared in 2002. I only had one and it was in my neck so they didn't call it. I was suppose to take a yearly MRI. Since last March I have been really sick. I do have fibromyalgia as well. So I kind of thought that's what was going on. After a few months I decided to get a MRI. Sure enough I had 4 new leison on my brain, however, they were not active. I am not taking any MS Medication because I'm on so many other drugs. I have been having a very hard time with heat fatigue. It makes working out very difficult. I'm not really into the pool thing. It is discouraging as I am gradually gaining weight.

I am overwhelmed with all I need to learn to take better care of myself. As I find out new info, I often realize I have been creating some of my own problems.

I have a question for everyone. When you have shared your diagnoses with friends and family members, did any of them act like you never told them anything? Just not wanting to talk about it. Almost a kind of denial.


BBBBB 08-10-2008 05:01 AM

Another newbie

It's good to see a group that is proactive in addressing MS. I was diagnosed in 1991, I take no medicine for MS and usually only an aspirin a day when I remember. I am now 58 and still have no visible symptoms. I haven't had a relapse in years and years.

My weight is within the normal range, my BP is 95/65, my total cholesterol is 145. I don't run because I have bad knees from my running days of my youth but I can still outrun the average women my age on a cardiovascular stress test. I do walk regularly, five times a week, lift weights, etc.

I have followed a low-fat diet for years (with some cheating) and I think this makes all of the difference in the world. I am definitely a fan of the Swank MS Diet that was developed by a professor of neurology and head of the neurology department at a medical school in Oregon. The diet does alleviate most fatigue problems and other symptoms as well. I also am a big fan of adequate Vit. B1 and D3, and fish oil and calcium supplements.

A while back I decided I wanted to be of service to others with MS so I decided to start sharing information on the importance of a healthy life cycle. This went over like a lead balloon in some circles. It seems a number of those with MS wanted to sit around, eat cheesecake and burgers, gain more and more weight, and don't mind wheel chairs. Geez, I was surprised. I felt upset too because I hate to see others get sicker unnecessarily.

Now I'm thinking that because MS is related to a lack of sunshine exposure in youth, lower levels of Vitamin D and excessive consumption of saturated fat, I should perhaps focus on trying to prevent MS in the upcoming children. Perhaps some older individuals cannot be educated because they do not want to make needed life style changes. Sad.

How do others feel about these issues?

BBBBB 08-10-2008 05:07 AM


May I suggest you check out the Swank diet at\

MDER123 08-10-2008 08:51 AM

Thanks Dave
Hello all,
My name is Mike I live in NYC Bridget I run the park also, love it. I also run up under the GW bridge along the west side.
I was Dx'd on my 35 birthday. The Dr thought I had spinal cancer I guess this was the better of the two. I really got into the running about 2 years ago, dropped over 50lbs eating right and cardio. Some days it gets very tough but its what ya gotta do!
Thanks again Dave.

RunMS 08-11-2008 02:33 PM

Hi All,

I was diagnosed in January 2006 with RRMS. I have been on Copaxone since April 2006.

I enjoy running, stationary biking, and walking my dog. I truly believe exercise is very important in helping to keep my healthy. :o

I am so glad I found this website.

murmaggie 08-14-2008 09:36 AM

also happy to find site
I saw the MS is BS post in another MS website and, of course, was intrigued...

I love the optimism of this site; although physically disabled from birth, I was very active before MS struck. In the 3 years it took before diagnosis, I became a couch potato (at first, I was told not to exercise [not due to poss. MS diagnosis], then I just hurt a lot and was very depressed re lack of diagnosis).

Now, I'm ready to resume active life. I do yoga 3-4 times a week and have started sailing lessons... But, I am older and it is hard to keep up the motivation some days...

I think this site will help:)

txhollyann 08-15-2008 03:26 PM

I forgot to introduce myself...
Hey all! I realized I'd made some postings and hadn't said who I was! I'm Holly from Pearland, Texas (Houston suburb!)... found this website going internet crazy MS searching after Dx'd in Oct 06 - 1 week to the day after 30th bday!

Not doing a lot of mountain biking or trail running anymore but trying to stay consistent on my recumbent home bike. Houston weather not good for outdoor running with MS! Love to fish and get to enjoy the close saltwater but that doesn't build up much but my biceps!! :D

Merganser 08-18-2008 06:14 PM

Hi all,

My name is Susan. I was diagnosed in 1983 and after the first couple of years of weird problems had almost no symptoms until 2000. Things have kind of gone downhill since then, but I'm still walking at least a mile every morning and going to the gym a couple of days a week. I get frustrated when I can't walk as far as I used to.

I'm married, no kids, work at a job I love, have a sailboat and love to sail, do photography and ceramics (both sculpture and wheel) and love to garden. I live in the San Francisco Bay Area.

It's really great having a site like this. Thanks, Dave.

gina_stjean 08-21-2008 01:50 PM

Hi, diagnosed in 2006 at (ahem) 51 and recently moved to Albuquerque. I've been very active in the past, doing a lot of hiking and walking. My main issues are cognitive - I seemed to have developed dyslexia and a few other interesting lapses in neuron functions.

Since I've moved here I've have gained 20#
and haven't been too active since the heat really gets me. Am really looking forward to meeting some hiking and other activity buddies and getting back into shape.
Anyone available on weekdays?


Michela11 08-26-2008 07:40 AM

Hello, I'm Michelle from Sydney Australia. I stumbled on this site by accident looking for exercise ideas and tips for working out well with MS.

Diagnosed as CIS Presumed MS Nov 2007, only last week changed to clinically definite. Have problems with my legs - balance, weakness and parasthesia. Oh, and the dreaded fatigue.

I'm taking Amantadine for fatigue, no DMD's but am considering Copaxone. Long story (aren't they all?)

I really want to connect with others who want to stay active and positive, help each other and continue to move through any changes MS may bring.

And have laugh too .....

PS - big on resistance training, yoga for 25 years, trying tai chi, love lots of walking, but need to set up a regular routine now that won't exhaust me. Especially to strengthen my legs, which have become quite wobbly of late.

Michela11 08-26-2008 07:54 AM


Originally Posted by BBBBB (Post 145)

May I suggest you check out the Swank diet at\

Hi, I started on the Swank diet a couple of weeks after my initial sort-of! diagnosis last November. I have relapsed on two occasions in making roast lamb tsk tsk. But apart from that, I've been very diligent and until recently, felt it was all working well.

Swan's theories are very valuable to consider, and it's great to hear from someone like you who's been on it for so long and has reaped so many benefits.

Can I ask you what your main symptoms and signs were, and any other tips you want to give (not pressuring) about how you've come this far, so well?

andersimp 09-06-2008 02:20 PM

Hola! Caitlin from ABQ here...
This is Caitlin Anderson, married to David Simpson, thus the Andersimps. Daughter Bridget was born in 2001. My dx with Primary Progressive was in Sept 06. I stay active in local NMSS Division, aquaerobics, yoga, life coaching, consulting, and of course, parenting!
And, hey, procrastinating on Dave's website!

agserra1 10-04-2008 12:07 PM

Ms Support Group
Hello - My name is Adrian, and I am 51 years old ...

Having Ms , I too procrastinate , as I also have other issues , as most do, that came iwth my MS ...

I live in Santa Fe, NM .. and my therapist has suggested to get involved in a group setting .. to make friends who can relate to my situation ..

Problem I have is getting to them .. often they are too far for me to get to .. joining a CODA group for the anxiety is scary , as I wouldn't know how to explain ...

The MS Resource Center , here n SF, is a P.O. Box ... not comforting .. while they tried to get an excersize group going , that was suspended due to lack of people ...

It is scary for me, having that feeling of no where to turn to even make an attempt ...

Well, I belong to forums on healthcentral and while I get support from many on each individual issue , anxiety, depression, pain and all ... it's the human contact I am missing most ...

hanging in by a thread , trying to sell my condo and getting back to where I cam , Florida, has been an up & down experience also ...

So, that is some about me .. and I just wish they had an MS group here that I could go to .. where I could connect with people "live" ... adrian :(

QuasiMondo 12-04-2008 05:49 PM

My name is Armando, and I've been diagnosed with RRMS for about a year. I found this board after reading about it in an article of a Nissan enthusiast magazine. I live in New York, am an avid autocrosser and I'm a dedicated, unrepentant gearhead who love all things powered by gasoline.

I don't have a regular exercise routine, I work on cell phone towers, climbing up and down apartment rooftops with tools and parts should make up for that...I hope.

agserra1 12-04-2008 06:02 PM

Welcome - hope you find this site helpful , others to learn from and talk to .. and hope you get a chance to get to know organizations in your area ..

Welcome .... agserra :)

KristaH 02-12-2009 10:57 PM

Hi all, I'm Krista I'm 26 years old and was diagnosed 3 years ago after 8 months of getting the run around. I woke up one morning blind in my right eye and freaked out, went to the ER and they called in the nicest opthamalogist! He was just visiting UNMH but he was great. Explained to me about optic neuritis and what it might signify. I went back a week late and got an MRI which didn't show any lesions but did show a growth on my pituitary gland so months of seeing an endocrinologist and it disapated but my sight kept going and coming. I saw a neurologist but he was kind of an idiot, told me I had a 70% chance that it wouldn't turn out to be MS and 30% that it would. I liked those odds but it turns out he had the numbers backwards! So after a spinal tap and an excrutiating week after the results were in! Along with the lesions they found on another MRI they determined MS. I imediatly was put into the Combi study and have been ever since! Although I had to get off the drugs for a year since I got pregnant, i had my daughter on January 30th and 6 months later got back on the drugs. And have been having one relapse after another! 4 since June 08! So that is my story! Hope all of you are doing well

cimmonz 03-10-2009 01:18 PM

hi friends!
i was introduced to ms exactly 3 years ago this month! I've been on rebif for 2 years.

it's my belief that we have MS for a reason ~ to do something about it! :p

i'm an active member of Our Heart Greeting, a network of friends who give their art and energy to make a positive difference in the world of MS.

i'm really glad i found this site!

thanks, dave!

MaryMac 05-18-2009 06:22 AM

My name is Mary. I was diagnosed in June 2008 and have been on Avonex since then. I live in Ohio with my husband, 4 dogs, 2 cats and some fish.
I recently ran my first 4 miler since my diagnosis (and since turning 40-ugh).
This site has been great for getting info so that I can stay active.

dashlea 06-05-2009 04:48 PM

I'm turning 30 this year, was diagnosed almost 8 years ago, had a few relapses but nothing biggest battle is fighting fatigue, stress and the Arizona heat (I'm in Phoenix).

Been on Avonex for six years, and the only time I've had a relapse was when I went off of it for six months. (I had someone giving me the shots for years, lost that person in my life, and was too afraid to give them to myself for a while. BIG mistake.)

AmyK, I'd encourage you to stay on the Avonex for a while...don't skip any doses...and see how it does. And for anyone battling mental blocks about self-injecting, I'd encourage you to do whatever you can to become self-reliant in this area...I hate doing it every single week, but it's a great sense of accomplishment each time I do it, like I'm taking control of my health.

Thanks for introducing me to the site Dave!

lizzwithms09 08-14-2009 08:33 PM

3-4-09 was the worst day i have ever had...see my family doctor has been my doctor my whole life so when my left side went numb and he sent me for an mri getting a call from him at 830 at night didnt alarm me. I was certain that the extreme exercise i had been doing in the preceding days caused my numbness so this call did not make me worry. BUT yes theres always a BUT...when he said "you have lesions that fit the diagnosis of multiple sclerosis" i totally fell apart. I mean i melted to the floor, sobbing, hyper ventilating, just freakin out!! i didnt know anyone with ms, the only things i knew were what i seen on tv...after my initial shock wore off and i was educated by my family doc and of course my new neuro i was fine. I know now that ms is not a death sentence and not everyone with ms will end up in a wheel chair. I now know that living with ms is hard but so far my problems are little. Im only 20 yrs i had/have many fears about whats to come in life for mebut i think my ms will just be another hurdle i have to jump over!!:) I am sooo glad to have found this site!! ive been looking for people to talk to about this for, well since 3-4-09 so this is great!! :D

misspenny 08-14-2009 10:12 PM

Hi, I'm Jen. I have posted a couple of times here but haven't introduced myself yet. I live in Rhode Island. I was diagnosed w/ MS in October of 2008, but I can remember symptoms going back about 4 years. I'm married, with two sons (6 and 3). When my balance permits, I do cardio kickboxing, step aerobics and weight training.

I'm really happy to have found this site. Thanks, Dave!

mmapmom 10-16-2009 06:49 AM

My name is Melissa , I'm 42,and I was dx in June with the start of optic neuritis in my left eye in May, then started Copaxone in July.
I've probably have had MS longer, just thought I was getting older, needed more strength training, worked too much etc.

I've enjoyed running and staying active in the past, but this summer has been very difficult for me. The heat and humidity really did a job on me.
I get numbness everywhere, weakness in legs, but lately it's been getting much better(having it a lot less or it's not as intense).

I just started stretching and doing some yoga every morning, and I really would like to get back to some running. With 4 kids and a full time job the fatigue doesn't help! Any ideas?

This website is great! It's good to know that I don't have to stop doing the things that I enjoy doing, but might have to do them differently.
Thanks for being here.

nicole marsh 10-20-2009 04:51 PM

keep up the activity
my name is nicole and i was diagnosed in may 07. i've been on copaxone and avonex that is going okay but...i have been keeping active by doing amazing spinal based movement that has given me my life back...and i am now an apprenticed instructor and need students...of course i want to reach out to others with ms because of the nature of the exercise...i live in albuquerque, nm and am so thrilled about this and i want to see if any active or not people would like a shot at this movement...let me know...i'll be waiting

Nova_Steve 11-23-2009 09:00 PM

Hello all,

My name is Steve I am 26 and my lovely wife was diagnosed in Oct. Although I am not the one going through this we are very close and going through this together. I am a car guy and I like tangible problems, this is a complete curve to me. Not being able to fix something is a strange concept to me so I have taken it the internet. It is encouraging to both of us to see a pro active group like this that encourages others inflicted with this to get out and be active.

Thank you to all of the other people who participate in this forum and have to live with this, my hat is off to all of you. It is really great to see that all of you are not letting this beat you. We has a cruise planned well before the diagnosis and after that were talking about canceling our first real vacation since we were married. Facing the concept of traveling with sharps and it's needed accoutrement seemed like an insurmountable task for anyone and depression seems like a likely pit to settle into. Just the concept of having a biohazard disposal container should be enough to push the majority of stable minded people toward the brink.

My dear wife has a long standing fear of injections so getting MS was one of those things that was a worst possible scenerio. Low and behold here we are. I feel so bad to see someone like this have to take a daily injection in various locations throughout her midsection.

Again thank you all, stay positive.


ms mcgee 12-14-2009 05:23 PM

hi - new to ms and forum-posting
Hi, Im one of those young-uns that 'should' have several blogs and online networking memberships, but I don't. I do have RRMS - officially diagnosed as of Sept. 09 - so that's why Im here. One of my primary concerns upon diagnosis was that I'd not be able to travel again, and that worry led me to find this site. Thank goodness.

And...I just started Rebif TODAY. So as an avid traveler and outdoors person, keeping meds cool enough but not too cold will be one of my challenges. Hopefully it is the worst of my challenges for a long time. :b

DreyaSF 12-20-2009 08:12 PM

Not fully diagnosed with MS but love connecting with groups like this
:)So I haven't been officially diagnosed with MS by my doctors, but I can certainly relate to many of your stories.

In July 2008, at the age of 26, I was hospitalized with symptoms very similar to that of MS. From July 2008 - Oct 2008, I was hospitalized twice, went to rehab twice to learn how to walk again and gain my fine motor skills back, and had a 2 week stay in ICU on a breathing machine in the middle of all that. At the end of October I was finally able to move back into my apartment and by Thanksgiving time, I was walking with a cane.

Doctors still aren't 100% sure of my diagnosis, although they don't think it's MS. Kaiser believes I have ADEM (acute disseminated encephalomyelitis) and UCSF believes I have NMO Spectrum. Both are neurological autoimmune diseases.

So that part is established, I have an autoimmune disease. Whatever the disease, it falls under the umbrella of Transverse Myelitis, because my myelin sheath around my spinal cord was damaged from this autoimmune disease.

Getting hit with this at 26 years old was definitely a rude awakening and it's been quite a road! I thought I was the healthiest I've ever been at the time and was working out with a personal trainer, rock climbing, doing yoga and pilates....enjoying my youthful and active life here in San Francisco!

I am ever so grateful that my recovery is going well, almost 1 1/2 years later. I'm walking without assistance, working full-time, getting back into the gym, and trying to heal through natural, holistic ways by going to a nutritionist who specializes in chronic illness.

It's definitely still hard sometimes to not feel as physically able to be as active as I was before. But finding ActiveMSers has been a blessing and truly gives me hope that I can do many active things and get back into the things I loved to of those things being snowboarding, which I thought I would never be able to do again.

My boyfriend sent me the link to the story, "Finding Hope on the Slopes." Her story nearly brought tears to my eyes because it made me so HAPPY to read such an amazing success story. It was a great feeling to feel one step closer to actually making my wish come true of one day being able to snowboard again, just by reading about your experience. I am so inspired to get back on the slopes and snowfall in Tahoe has been a good one so far, so I'm eager to give it a shot!

I'm so glad my boyfriend stumbled upon Dave's site! It feels really good to read people's stories similar to mine and more importantly, to see how staying active can help us all. Thank you for the motivation and inspiration.

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