Living with MS: In a Nutshell

Such a great memory from a couple of years ago.  Worthy of reposting!

The little things with MS add up quickly. Here are a few notes from my trip to Texas in a nutshell to remind myself that I can thrive with MS:
  • Weather - 70F is about the perfect weather for MS
  • Family - quality time necessary for healthy living
  • Friends - how do we live without them?
  • Relaxed schedules - going with the flow and learning to float...
  • Good eats - healthy, and not so healthy! Sometimes it's just about the taste.
  • Good drinks - from juicing to water to local brewery, No Label, fun to explore!
  • Activities: TV, film, photography, hiking, golfing and more. Got my Canon 400mm lens back from shop. Watch out birds!
Here I am trying to play golf after 20 years of not trying. Haha. Had a good coach. But boy was I sore the next day!

  • New movies/shows - started watching Heartland. The simple things in life...
  • Good conversation - in person and online. Being present.
  • Exploration: Lady Bird Johnson wildflower center. Love this place! Visual. Physical. Peaceful. Beautiful. - having an open mind and enjoying all there is in life!

Some photos I took along the way:
Cardinal at LBJ wildflower center
"Texas...where nature and culture meet"
"Healthy living with MS...where nature and culture meet"
Let's do this!

Groundbreaking for the LA River and for Girl with MS!

What a memory from two years ago!   #takeTHATms  

The first fishing derby at the LA river! Fly or spin, it was a day of fun and good peeps, beautiful weather and a handful of fish. Here I am at opening ceremonies with Jim Burns speaking. I bowed this photo from His blog, LARiverFlyFishing which is very informative and keeps you up to date on fishing conditions and other fun activities along the bike path.
"Fishing for carp, waiting for steelhead"
The last steelhead taken out of the LA River was photographed in 1948. Can we bring them back despite the concrete channel and city life?
We now have bass, tilapia, carp, bluegill, sunfish and more...thanks to Friends of the River (FoLAR) and other organizations and peoples hard word.
FoLar or Friends of the River have been working since 1986 to being fish and wildlife back to the river. With over 212 bird species alone, I think they've done an outstanding job. Not to mention the fish!
Well, who would've thought I could live in LA and drive 20 minutes to a fishing hole without getting on a freeway. As y'all know with my MS, driving is not a big option for me. But I can get to Atwater village with about four turns and twenty minutes. I'll take that all day long.
They even had some great trophies and prizes! I didn't land any and missed four but that's OK with me. I'm a bit rusty on the fly so practice is necessary for me.
The river rover is a 38' mobile educational, rolling river. Amazing for students of all ages!
While wading in the LA river is not usually open, it was open for the derby. Here is a shot down stream and one upstream. You can see the fishermen on the bank.
While many folks just trudged through the water in river sandals, I went for the grip of my patagonia wading boots and my redington waders. I really didn't need waders for the fishing I do along the she but I love the grip on these and wanted to be MS safe.
Here are the winners! The largest was a 6lb carp. And then a few small large mouth bass were caught. The ones I kept missing. Oh well. For me the important part is being on the river. Watching the wildlife. Enjoying the scenery and the people. Or being solo and enjoying the solitude. Whatever I'm in the mood for, fishing brings it to me.
Well, because sometimes it not always about the fish...
The river opened to fishing just a few years ago in 2011. It's taken a lot of effort from many people and groups to get this going. Can't thank them enough!
Here I am chilling by the river on a different day. Again, I missed a few. Got to practice my timing.
Quite a flow of water in the river. Enough for small flat bottom boats and kayaks to meander.
And even if you don't fish, there's plenty of trails for biking, walking and hiking along the river.
Can't wait to go back!
Groundbreaking for Multiple Sclerosis
Fishing with MS is doable for me if the conditions are right. But I'm not sure walking around with sharp pointy objects on slippery rocks is too smart with my balance issues. Also, I have to be very careful about my energy. It's easy to get wrapped up in the excitement and not listen to ones body which results in a terrible day after. I actually listened to my body and ended as needed. But I'm still pretty wiped out today.
Photo courtesy foLAR.org
I kept cool and that was important. I brought my cooling vest along and had a few frozen wet bandanas with me but didn't need them during the derby. I kept hydrated with my camelback and had an instant cold pack in bag for an emergency. Ok, I actually looked kind of silly, as if I was ready for a six hour adventure. But with MS you never know. But the temperature stayed relatively mild and the slightest breeze kept me cool. I also stayed near the bushes and conserved my energy and at one point went Into the water and cooled off that way. I didn't trust my balance to go very far from shore.
Photo courtesy foLAR.org
I am going to get a waking/wading stick. I've seemed to have lost all my old hiking sticks. But with my balance it would be a good idea. And I love the stickiness of the wading boots so will wear them again. The only issue was that my big toe on my left foot bumps into edge of boot. Need to trim toe nail or something but they're not that long. Obviously I am trying out some new gear and getting ready for bigger trips than an hour along the LA river.
Photo courtesy foLAR.org
Photo courtesy foLAR.org
And tying on flies is not easy for those with MS. Between wonky vision, heat intolerance, balance issues and shakey hands, it takes me quite a bit of time to change flies. But yesterday I did several times. I'm getting my rhythm back so to speak and it feels so good!
So with anything and MS we have to take it slow and easy. No major expectations. One day, one fly, one fish at a time.
And we also must reward ourselves! I've worked years with my health and managing my multiple sclerosis to be able to do somehing like a fishing derby. Never thought it would be possible. I need to get a good wading staff. Maybe one with a seat so I can sit and tie my flies on. Yep, I'll be the lazy fisherman with a chair, a beer and eventually a fly tied onto my line. And I will be loving it!


Taking Action on MS Pittsburgh!

Here's an AWESOME Memory!  

With so many ways to Take Action on MS I feel blessed that this past weekend was spent with about 100 fellow MSers in Pittsburgh, Pennsylvania for Genzyme's Take action on MS campaign with Madeleine Stowe. While Madeleine does not have MS, her father did. And boy does she have a lot of good stuff to share with us all.

Knowing that I don't do that well in the heat, I was a bit nervous flying into Pittsburgh with A weather report of 91F and raining. As summer is approaching I was nervous. The MS was starting to creep up on me. I could feel it, time to take action. The week prior to traveling consisted of lots of water and good quality food and some tricks to distress the body. One of my favorite tricks iS an elixir from Orchard Flats Juicery in my home town of La Canada. The one I took was for stress and included ginger, turmeric, B12, lemon and celery. These are amazing! I took two the day before I flew out and the wave of calm over my body felt like a comforting, cooling blanket.

The week prior to flying was a busy one. On top of working with my marketing clients there was much to do for the event this past Saturday. Wardrobe called for some blue shirts so I did a little shopping. Rocked a total deal at TJMaxx when I found a Vince shirt in the color of my eyes. Clothes cleaned, hair and nails done, I was ready for the flight and the stage.
And an early flight it was to be! 7am from local airport, BURbank. Only twenty minutes door to door. Not bad. The big black car picked me up and I was on my way with plenty of clothing options to keep me looking good.
After an easy flight, I met up with the team at Vallozzis restaurant in downtown Pittsburgh. Delish! Starting with about five appetizers followed by an amazing dinner of homemade pappardelle and suckling pig, we were feeling fat and happy. Time to head back to the hotel and get some shut eye. Saturday to be a long day!
Waking in just enough time to doll myself up I left for the event. Time to take action on MS!
I checked out my set and all looked good. I was ready to go!


As the doors opened in cime about 100 folks wither with MS or caretakers of this with it. This is my group! As they settled in I handed out my cheat sheet on managing stress with MS. I love this sheet of tips and tricks and wish I had it fourteen years ago when I was diagnosed. Not a day goes by that I don't use something from this sheet:



There's so much to learn at these events. From managing stress to exercise to emotional issues. And then we all sit down for a lovely lunch and meet Ms Madeleine Stowe and hear about her experiences as a child with a father with MS in a time when they knew nothing about the illness. Her story is a good one. And she's a doll. A very nice, supportive person. Just who we need and want to help us build awareness for the MS community.

So how are you taking action on MS?








Tips for making it safely through the day

Here some tips to help us survive MS on a daily basis.  Trust me they work!

These might seem small and silly but attention to these details can save you from a bump, a bruise or a stressful moment, none of which we want in our lives.  

1.     Knife on the cutting board.   Always face the blade the same way – either inward toward the center of the board or outward, away from the center of the board.  This way the practice of putting it in the same place can help reduce accidental cuts from moving hands too quickly in the cooking area.


2.     Close the cupboards.   Every time you grab a cup out of the kitchen cupboard or the hairbrush, shut the drawer or door.  Ever knocked your noggin on a door that wasn’t shut?  When one it moving too fast and not paying attention it’s easy to smack something.  Take the time to closes things up.


3.     Put things where they belong.  First, have a place for important things like keys, phone, purse, sunglasses, water bottle.  Get in the practice of always placing things back in their place.  When we are rushed it’s easy to forget where we’ve left things – by always placing things back in the same place this little trick can save an exorbitant amount of stress when it comes down to it.



4.     Close the Drain.  Ever dropped something due to clumsy fingers?  Like earrings, hearing aids, contacts, etc., getting in the habit of simply closing the bathroom sink drain can help avoid a disaster in the future. 


Small habits these are but practices that can help avoid stressful situations in the future are ones worth acquiring. 

Practice everyday.  Increase your awareness, take your time with each habit, breathe deep and bring intention to what you are doing.   After some three weeks or so this practice will start to become habit.  

Good for you!   

What are some of the smallest habits you have picked up to help you get through the day?   


Juicing and Chia Pudding for our Health

2 Ways to Eat for Wellness 

After a few crazy months of eating anything and everything I'm taking a couple weeks to turn it all around. 

First of all let's alkalize this body and get this gut working like a Porsche! 

Spent the morning Juicing and making chia pudding which are two of my faves. 

Time to put my gut into gear. 

#takethatms 


I made about seven jars of juice, some with greens and carrots, some with beets and lemons. 



Morning Juice
1/2 beet
1/2 lemon
1/2 cucumber
1/4 small watermelon 
1 apple

Cooling Off Juice
1 carrot
1 apple
1/2 cucumber 
1 handful mung bean sprouts
2 celery 
1/2 lemon 

Booster juice:
2 carrots
1/2 orange 
1 small piece ginger 
2 celery 
Handful parsley 
1/2 cucumber 

Best to make juice fresh every time. But this can be difficult and time consuming. I will sometimes make a few bottles at once and drink them within 24-36 hours. 

Chia pudding and hemp milk for those vitamin Ds


Chia Pudding 

1/2 C hemp milk
2 tablespoons chia seeds 

Place in mason jar or any container, shake and chill for a few hours or overnight. 

Toppings: 
Maple syrup
Honey
Nuts
Fruit

Be creative and enjoy the goodness! 

My 1st MS attack, learning to flow like a river

Fifteen years it's been since I stumbled my way through Guatemala with a disease I knew nothing about. Here is a quick video of me remembering my initial attack. Through the course of three weeks I lost ability to walk or see unassisted...what was going on?
Finally I got in to see a neurologist and after spinal tap and MRI, it was confirmed. I have multiple sclerosis. I have what?! Learn to deal with it. I started with copaxone but then was asked to join a three year double blind study with the chair of neurology at USC. Sure thing, I said! And so glad I did as I have spent the last thirteen years learning to better manage this condition without the use of many prescriptions and with the use of certain foods and supplements along with a change in lifestyle.
It's difficult to describe my vision issues but this is a good image of what it feels like. Not sure how I took this photo but it works! Don't look at it too long...
My vision under an MS attack
We can do this! MS changes our lives but it doesn't have to take our lives. In fact, the more we learn to go with the flow the better our illness can be managed.
Think of a river, floating along some riffles, tootling around rocks and staying in the green water when wham, a huge rapid appears around the corner. There's no eddying out on this one. Time to see a path and take it. Commit. We can't fight the white water, we must flow with it around the obstacles causing the rapids.

This is the attitude that helps me deal a with my MS a little more each day. It's not easy and may not be successful with this mindset, but it's a focal point for me. And that is a good thing, having a focus.