MS Awareness Week

This week is MS Awareness Week and actually all of March is MS Awareness month.  Like I mentioned yesterday I'm going to be visiting my parents this week.  Ostensibly to celebrate my Dad's birthday, but also along with my sister to have a frank conversation with our parents about their living situation.  

My Mom was diagnosed with MS almost eight years ago and walks with a cane.  Over the summer she fell and broke her hip.  She is home and goes to physical therapy but cannot drive anymore.  Their house is a two story house with a finished basement. My Dad has memory issues similar to Alzheimer's but it's called something else.  Because of that and a nervous tick, his doctors no longer let him drive. My Mom has always been a proud and independent person and being restricted the way is making her depressed  She's 69 years old and 

Bottom line, they are having a hard time in their current situation and my sister and I agree they need to find some appropriate to their needs.  Some sort of assisted living situation where they can choose what assistance they need and ramp it up when needed.  

My sister talked to my Mom about all this when she was last there in December and while I think my Mom knows that this is what they are going to need to do, she's being stubborn.  Not that I blame her.  I can understand that she doesn't want to leave her home.  I know it's going to be a lot of work to get the house ready for market, and that she's not really physically able to do it, and my Dad isn't really mentally up to the task.

My sister gets mad when my Mom puts it off and they butted heads quite a bit last time she was there.  I think sometimes she doesn't realize how difficult it is for my Mom physically to do some of the things she needs to do.  Hopefully if we can all discuss it calmly we can figure our a solution that's acceptable for everyone.  

It's hard to be so far away when they are going through things like this and if they do end up selling the house I may have to take my in laws up on their offer to fly out and watch our kids so I can stay and help my parents longer.

MS affects different people in different ways and this is how the MonSter (as I've seen it called) is affecting my family right now.  

Run/Walk for Hope for Multiple Sclerosis

I recently discovered virtual runs, and I have to say I love them.  Unlike a traditional race, you run/walk the virtual run at a time and place that is convenient for you and in many cases the distance is up to you as well.  So why do it?  The are fundraisers for various charities and you still earn a medal or other fun swag.  And they are much cheaper than a traditional race and without the hassle of packet pickup and race day traffic.  Also if you like to run but haven't found a traditional race that raises funds for a cause close to your heart this is a way you can do both.

There are a ton of virtuals advertised on Facebook and shortly after completing my half marathon I came across one to raise money for the National Multiple Sclerosis Society.  Not long after I registered the race director cancelled the race due to personal reasons.  I contacted her and offered to take over.  She had already designed the medal which I think looks really cool, and done a lot of the other leg work.  Her sister has successfully organized similar races and has been helping me.  Now I am just busy promoting it so we can raise lots of money to help find a cure for MS.

If you or a loved one have MS I would love for you to join us. If you are a runner and are looking to add more bling to your collection, please join us.

The Run/Walk for Hope for Multiple Sclerosis is a fundraising run/walk we are hosting to benefit the National Multiple Sclerosis Society. A virtual run may be completed anytime and anywhere convenient for you. 5K, 10K, 13.1m, 26.2m or triathlon - the distance is up to you. No proof is required of completion, but feel free to post your photos and results to the Facebook page. Each participant will receive a finisher medal.

All medals will be mailed out in December. 

All proceeds from the Run/Walk for Hope will be donated to the National Multiple Sclerosis Society. To register, click here http://www.active.com/your-town-il/running/races/run-walk-for-hope-for-multiple-sclerosis-2013

Please join the Facebook group in order to receive future updates
https://www.facebook.com/groups/runwalkforhopeforms/

Thank you for supporting this virtual run for the National Multiple Sclerosis Society

Women Rock Half Marathon

This past weekend I ran my first half marathon.  My goal was to run the whole thing, and do so in under 2:30.  I managed both!! I only walked through the water stops, and my official time was 2:21:50.  It was an absolutely perfect running day - sunny but cool.  Mid 50s at the start and mid 60s by the finish.  My sister came out to run it with me (although we didn't actually run together since she is faster than I am).

This was a new race in Chicago and a bit disorganized, but still fun.

Cons
1. Starting line was on sidewalks (they did not close off the street) which made for a very congested start.
2. Corrals unclear - we all assumed that they would be closing off the street so crowded up by an entrance near the barricades by the starting line - not lined up in the designated pace corrals
3. No PA announcements telling us what to do or where to line up at start
4. Even though the half marathoners were supposed to start 30 minutes before the 5k and 10k, no one really made that clear so everyone went at once
5.  The course was along the lakefront bike/running path, but it had not been closed off to other traffic.  In fact there was a Leukemia society Team in Training doing their final pre marathon long run also on the course.
6.  Bananas at the end were lousy.  The volunteers even apologized - apparently the bananas had been donated and in retrospect they figured the reason they were donated was because they weren't good.
7.  Congestion at quite a few parts due to the 3 distances/turnarounds

Pros
1. The course itself was beautiful - great scenery and views of the lakefront.  If it had been closed off, would have been perfect.
2. Finishers received a necklace at the finish line.  They allowed you to swap it out for a medal, that had originally been created for people who did the full 4 race team ortho series.  I was never planning on wearing the necklace, so the medal swap was great.
3.  Post race party included a glass of champagne - admittedly not the best champagne but a cute gimmick and we got to keep the glass
4. The congestion actually helped me keep on pace and make it so I was able to run the whole thing.
5. Very friendly volunteers receptive to feedback.  They were apologetic about the overlap with the Team in Training but apparently had not been informed that that would be happening
6.  Attention to the little details - like comp tampons in the port a potties at the start, announcing your name as you cross finish line

Would I do it again next year?  Probably, depending on the schedule.  After a quick stop at the post race party we went to lunch at Ed Debevics - kids choice, and then home.  My sister and I each took a shower and a nap before we headed out to dinner.  

Notes to self for what worked for me...
My playlist was perfect, started slow and built up.  Livin on A Prayer actually came on at 6.75 miles (Woah, we're half way there, woah, livin' on a prayer, Won't you take my hand and we'll make it, I swear)
One of my last songs was I Love this Town also by Bon Jovi.  At about 12.5, Jon and I had a little conversation...

You want it? You got it 
You ready? I'm on it 

Come on now, here we go agaiiinnnnnn...

That's why I love this town

Dinner the night before was grilled chicken with salad and quinoa (my sister's suggestion since I told her I didn't have a go-to prerace dinner yet).  I got hungry later and had a peanut butter sandwich and yogurt before going to bed.  Waffle with peanut butter and banana in the morning, and try to keep the water intake morning of to a minimum.  I did pop a couple of sports beans just before each water stop so I could wash them down with water.  

What not to do? Set up intervals on my phone.  I did it to help make sure I didn't bonk at mile 8 like the Fort 2 Base, but walking the water stations worked better.  I was afraid to try and switch programs mid run, but next time, I'll set it to keep me updated on my expected finish time. 

I was happily surprised that I was not sore the next morning, especially since I was after the Fort 2 Base.  I definitely want to do another one, not sure when though.  It's about to start getting colder here in Chicago, but I plan on doing a race a month to keep me going and hopefully can plan another half for early spring.  While I am very  happy with my time, I know with cross training I'll be able to do even better next time.   Another plus, we were running this as an MS fundraiser and managed to raise over $2200 for MS in our Mom's honor. Unfortunately she couldn't be there to cheer us on, but we made sure to post pics to Facebook so she could keep track of us and called her after the race.

I skipped my usual Monday morning run since my sister was leaving around lunch time, but was able to start running again Wednesday, a little sluggish and Endomondo was goofy, but it felt good..  The next few weeks I can take it a little easy as my next race is a 5k with my daughter - her 1st so I'll let her set the pace.  November I'll be back down to the lakefront for a 10 miler so I can't slack completely.  Not sure which race to do after that.


  

Running

As I mentioned in a previous post I recently started running again. I was in a pretty good groove in July, but the past week has been tough with kids being home, and my husband getting home too late for me to run in the afternoon.  Still I am determined to keep at it, and have signed up for my first 5k.  Ok it's technically not my first - I did run the Corporate Challenge in Boston, but that was in 1992, and I haven't run a race since.  But it was a pretty crowded course so basically was a slow jog that ended with a night of drinking.

This will be a bit different.  It's in my town and starts at 9am (very civilized start time unlike all the downtown races that have lots of traffic to contend with.)  A friend of mine who lives in DC has been posting on Facebook about all these great races that she has signed up for, and I've found a few cool ones on my own too.

Hot Chocolate
A 5k or 15k in November where you run for chocolate

Color Run
A early summer 5k where you get sprayed with colorful powder at each checkpoint and at the end you look like a sunning Jackson Pollock painting.

Glo Run
A nighttime race where you get outfitted with glo in the dark shirts run through black lights and other "extreme glow". There's a dj on the course as they discourage ipods, so you can hear what's going on around you.

Overall my hope is to run a half marathon within a year.  My Mom was diagnosed with MS 6 years ago and for a while I was considering walking the Chicago Marathon as a fundraising effort.  I have never wanted to run a marathon but figured I could probably walk it.  Of course there are time limits on the course, so after two many cons I decided to do a half marathon instead and just do my own training and fundraising rather than being part of a team.  It'll make a it a little harder to stay motivated but I think I'll be able to do it.  The problem is picking a good one.  The Chicago half happens to fall on my Mom's birthday next year so that's a possibility, but would be tough to train unless I become a good morning runner.

Any with any big goal, the best way to go about it is baby steps.  I have added a page of running goals to keep me on track.  I also love my endomondo app.  I'll do a separate post on that - but it keeps great stats (including some goofy ones) and tracks my course by GPS.  I also have a few friends on it who occasionally send pep talks as I am out which is always fun.  But what really keeps me going is my kickass mix of Bon Jovi music.  Their tempo is perfect for my pace.  So far this list gets me through my run.  I cool down to Just Older ; )

You Can't Win if You Don't Play

I hardly ever buy lottery tickets, but a historically large jackpot is worth throwing a couple of bucks at. I had the kids pick a couple of numbers and did quick picks for the rest. Total cost $5 - potential winnings at this point $640,000,000 or $462,000,000 after taxes.

We've all heard sad stories of people who win large jackpots and squander it away quickly due to shady investments or bad financial sense. This is so much money I think it would be hard to squander.

So what would I do with it? First pay off ALL debt. Then set up a fully funded college fund for each kid. Help out immediate family with financial needs (second cousins twice removed need not apply). Take care of the long list of things we plan to do to our house when we have the money.

A decent chunk should go to charity. There are a ton of worthy causes in the world, but off hand I would give money to fund MS research, and something to help hungry people in the US. I'm always appalled when I hear that there are millions of people going hungry in one of the wealthiest countries in the world. And in this economy, those numbers have increased dramatically.

Then for the fun stuff.

Travel. My bucket list is long, but the African safari with Micato has been top of the list for ages. Then Australia/New Zealand. All first class of course.

I've always loved the Cartier tank watches, not sure which specific model I would get, but that's a decision I wouldn't mind having to make.

Right now I drive a Highlander which is great for 3 kids, but I'd love a fun little sporty car for those rare times I don't have to have the kids with me.

That's all off the top of my head. I know my chances of winning are infinitesimally small, but it's fun to dream. If I did win I would never publicize it, and would only tell the people who I can trust. So if I do win, don't expect a post about it, although my posts may become a little more interesting as I spend my winnings traveling the world :)

Marathon

Earlier this week I got a reminder email that registration is now open for the Chicago Marathon. I don't consider myself a runner, but when I do exercise, I do prefer to run over other options. 3-5 miles are my standard and I have never gone significantly over 5 miles. Despite all this next year I am planning on doing the Chicago Marathon. I say "do" not "run" on purpose.

This is not a bucket list item, in fact I always swore I would never do a marathon. Too many of my friends trained for months and were injured close to race day and couldn't participate. So why am I doing this?

For my Mom. She was diagnosed with MS 6 years ago. There is no cure and while she gives herself injections 3x a week, the effects of the disease cannot be reversed. The medication merely slows the progression.

The MS Society holds a myriad of fundraising events most of the ones by me are short walks 1-3 miles. I assume that is so people afflicted by this disease can participate. However, I feel if I am going to try to do some serious fundraising I need to do more to deserve the funds. I checked out the Chicago Marathon and the MS Society is one of the fundraising partners. They don't have a training team like the Leukemia Society or some of the other non-profits, so I'm on my own for that. There is a 6 hour limit to finish the marathon. My plan is to walk but I'll need to run some parts to make it in time. When I was in high school I did the March of Dimes WalkAmerica a couple of times with some friends. I think it was 25 miles but we stopped for lunch at McDonalds and ice cream at Baskin Robbins. I know I won't be able to do that this time. I would like to do it this fall but after thinking about it realize that 2013 is a better option for me. I haven't worked out in a while and know that with my youngest still at home, sticking to the training regimen would be tough. He starts preschool in the fall 3 days a week. It'll be much easier to start working out again at that point. I figure if I start in the fall, I'll be in good shape by next spring and then the training regimen would be no problem to get me ready for fall 2013.

I also figure I should try a few real races before the big day and have heard of some cool ones through running friends - Hot Chocolate, Color Run, Home Team Charity Run, to name a few.

There isn't much I can do to help my Mom day to day since she lives in Europe, but if I can raise some serious funds for research by doing the marathon, I would feel better. A bit selfish, but at the same time, I know walking 26.2 miles won't be easy, so it's not completely selfish

MS Study

I've been busy trying to get our house back in order this week, and as part of going through the mail took a couple of minutes to spit into a testtube. Why? My Mom was diagnosed with MS about 5 years ago, and at this point there is no known cause or cure. I read about a study to test for a possible genetic link currently being conducted at Brigham & Women's hospital in Boston. It's the Genes and Environment in Multiple Sclerosis (GEMS) Research Study. They are looking for first degree relatives of someone with MS in a certain age range (18-50) I will receive no compensation for participating but that's not my reason for signing up anyway. My Mom's diagnosis was a shock to all of us as she was diagnosed late in life, and it's hard to see her struggle to walk.

Once my spit sample has been analyzed (I think they use it to collect an initial DNA sample), I will need to submit blood samples. I may be asked to have an MRI. The only test that I would maybe need to go to Boston for would be the MRI. They will compensate for some of the travel expenses, and since my sister lives there it would be nice to have an excuse to go. All the other samples/tests can either be done at home like the saliva sample or at local facilities.

I mentioned to a friend of mine that I was doing this, and she asked if I was scared. I said no it's just a blood test and an MRI. Then she said, but what if they do find a genetic component? I have to admit I hadn't really thought it through that far. Most of these studies take years of research before any conclusions, and this is one where you agree to followup tests for years, but at the same time, I feel pretty helpless with my Mom, so if I could do one little thing to help her or prevent the disease for someone else why not? I guess in the back of my mind, there is a small bit that would be worried that they find something, but if there is a link, better to find out early. Since there is no cure the earlier you start therapy, the better you can slow the progression. At the same time, when I signed the consent forms, it specifically said that they would not provide individual results, although would advise if the MRI showed evidence of a cerebral aneurysm. Which makes sense, this is not meant to be a pre screen test, but I do wonder a little bit, that if they do find that there is a genetic component, wouldn't they tell those who had proved it? If nothing else, I figure if they find that MS is based on genetic, environmental or immune factors, I'll be among the first to know.

Parents getting older

The hardest part about getting older is watching my parents get older. My Mom stopped working when she married my Dad and followed him around the world as his company stationed him in Asia, Europe and the US. She was always very independent finding volunteer opportunities and interests every place they went. My father would sometimes go on business trips that would last weeks and at one point was dividing his time between US and Denmark spending months in DK and then home got a few weeks then back.
I never heard her complain about any of this, she just did what she needed to do to keep our family going.

Five years ago she was diagnosed with MS. It is unusual to be diagnosed so late in life. It's a disease with no cure. The medications available are used simply to slow the progression. She used to love to spend a day wandering around NYC or Copenhagen or whatever city they were living in at the time, going to museums, shopping or whatever. Now there is no way she could do that. She gets tired walking one block. She uses a cane fairly often but is too proud to get a walker. She used to drive, but no longer feels comfortable doing it so my Dad does all the driving. When she first called to tell me about the diagnosis she was obviously upset but the thing that still sticks with me is when she said that she was supposed to be taking care of my Dad not the other way around. He immediately chimed in that she shouldn't feel that way, and that he would take care of her. And to his credit he has. He doesn't cook, but he will now do a lot of the things she used to do for him, fixing his own breakfast and lunch, going to the supermarket with her, and other little things that may not seem like much but she used to do everything for him, like many wives of that generation did and now he's had to become more I dependent and helpful. Which is nice to see. They also hold hands now sometimes which they never really did before and is sweet.

She still has trouble asking for help and gets frustrated that she can't help me more when she comes to visit. I tell her not to worry about it but I know it hurts her pride that she is now dependent on others for many things, and the way this disease is, it's only going to get worse not better.


Now my Dad is starting to have tremors and getting forgetful. He put off going to the doctor for a while. He's always been good about yearly checkups but wouldn't really go in between those visits or bring up other problems when he went. Finally my Mom was noticing he was getting forgetful and he is having blood work, MRIs and other tests to see what the problem is and what treatment may be available. The hard part is that he may end up losing his license. They're lucky that public transport is good where they live but for my Mom to walk to and from the bus-stop would be a challenge. She says she would maybe have to start driving again but I don't if that's really an option either. At this point they are letting him keep his license pending a verdict from some head doctor.

The hardest part though is that neither of them really like talking about any of this stuff, and yet they live thousands of miles away so I can't go check on them that often. They come to visit us once or twice a year as it has been easier for them to come to us than us traveling with 3 kids but after their next trip at Thanksgiving, we'll probably have to switch that.

And then to top it off my father-in-law after months of tests and baffled doctors was diagnosed with something called necrotizing myopathy. An autoimmune disease that battles your muscles, making them weak and making it hard for him to move or lift things. He was diagnosed a couple of months ago and has since been getting treatment and doing physical therapy. He's doing much better in a fairly short time. He'll probably never be back to completely 100% but at least he's headed in the right direction again. They also live thousands of miles away so we can't really help them, but at least they are more open and honest about their health. They want to move closer to us as my husband is an only child but they can't afford to do it until they can sell their house which in this market is not feasible.  My mother-in-law is at the moment the only one who's doing fine, and to her credit has also stepped up and done a lot of things for herself and her husband that he used to do for her.