Good mental health is critical to managing your physical health

I imagine I’m probably one of the worst patients to treat. I fully understand the advice I receive but I’m horrible at following them. We’ve all been told it; Stress can really affect how we handle existing and future problems arising from having neuromyelitis optica (NMO) and admittedly, I’m in the habit of taking on quite a lot.

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I love to work hard and I work to live well. The type who suffers from wanderlust, adventure and trying new things, I generally only operate at hyper speed. A couple of months ago I knew I was at yet another crossroad. Where previously I could manage daytime fatigue, the burning sensation and general pain, my body had started to feel sluggish, unresponsive and exhausted. I tried to sleep it off, eat well and rest but I couldn’t bounce back. I recently blogged about a flare as a result but still couldn’t feel better.  (more…)

Guest Blogger Heather Sowalla NMO and Teens

A few weeks ago, thanks to the Guthy Jackson Charitable Foundation, I was able to attend the 2016 NMO Patient Day in Los Angeles. And, unlike in other years this year I had a purpose. I was to lead a support group meeting for teens and young adults with NMO the day before the conference. I have to admit, I was a bit nervous. I’ve always been good at public speaking and leading discussions, but this was going to be a completely different situation than my norm.

To be honest, even in the world of NMO, I think people often forget about the teens that suffer from NMO. We hear the stories about children and our older adults, but we don’t hear much from the teen age groups. Where do they fit in? They aren’t really adults yet and they aren’t little kids, so we’re faced with the dilemma of where they fit into the NMO community. They are old enough to understand what the doctors are doing to them and why. It’s because of this reason that I was approached at the 2015 NMO Patient Day, to create a place where the teens and young adults can talk freely about their issues, and I have been moderating that group since then.

This year, for the 2016 NMO  Patient Day, I was approached about running a support group for the teens the afternoon before the conference, and truly I feel it made a difference. A group of around eight people were able to come together to talk about NMO. I wish it were under different circumstances that this amazing group of individuals got to meet, but we were able to come together and it was amazing. Some of the teens in attendance had never met another person with NMO before, let alone another teen. So, during a time when they feel sick instead of feeling alone they can fall back on that first meeting and how even if life is no longer in our control that we can find methods of coping, which we discussed in the meeting.

The largest issue all of my teens agree on is how they can or cannot maintain an active normal teenage life on top of trying to control their NMO and symptom management. Teens are emotional. They don’t necessarily have the life experience that adults have, and it can cause their emotions to get mixed up and they can easily become frustrated and angry. That is something I am proud of, of my support group members. They were there. They were aware. They wanted to ask questions and get answers. Having NMO is difficult enough without the added stress of friends, dating, driving, school, etc.

Something we discussed was relationships. With family, friends, and significant others. It came across that most of the teens in the group feel as though they are isolated and that no one understands them, and that nobody gets what it’s like to spend days, weeks, or even months in the hospital and it can get depressing. But, there is always that one friend, the one that brings you chocolate and chips and sneaks soda into the room.

I’m glad to say that bringing these amazing teens together has allowed them to create a bond they may not have otherwise. No longer are they fighting their battle alone. Together, standing tall, they speak out about NMO and fight to find a cure.

We have a few things being prepared for this group of amazing young individuals. Between the online support group I am working with the Guthy Jackson Charitable Foundation to put together a teleconference so the teens can have the opportunity to talk over the phone with one another about life’s events, NMO, and how they are or aren’t coping. It’s an amazing way to bring them together and start a dialogue that in recent years we didn’t have available for our younger NMO community members.

Things Only NMO Patients Will Get

I missed this year’s NMO patient day but absolutely loved seeing all the posts and photos of past and new attendees connecting with each other. It’s what has inspired this week’s post that only NMO patients might appreciate.

1. (Upon seeing you in person) “I’m so glad you’re feeling better”
NMO patients always sympathize with the inevitable prednisone use, which causes weight gain including the dreaded “moon face”. Those who aren’t familiar might assume the weight loss or return to normal weight means you’re healed from the disease, but that’s just not the case. Prednisone is used to treat flare ups or as a precautionary measure.

2. “But you were walking yesterday. What’s wrong with you today?”
NMO symptoms can flare up and cause different mobility from day to day or even from hour to hour. This is tough for others to understand who don’t realize how symptoms work.

3. Having to cancel on your friends and family…again
This is related to #2 and the unpredictable nature of NMO. If you’re like me, you’ve probably had to make excuses that seem easier to understand like “my kid is sick” or “I’m stuck working late”. It can be heartbreaking for patients when the invitations stop coming because they assume you’ll probably have to cancel anyways.

4. The stubbed toe syndrome
Right now 3 of my 10 toes are badly bruised. That’s because my mobility gets thrown off, I walk into things because of the numbness and vertigo is sometimes a problem.

5. Healthcare is expensive
Even if you have extended health coverage, having a medical condition is very expensive. The medication alone can cost a fortune and that’s before any additional maintenance care like massage therapy, acupuncture or doctor appointments. And most patients can only work limited hours or survive on disability earnings.

6. We know how to navigate the medical system
This is a broad statement that might include best time to call for an MRI, the nicest nurse for blood work or even best time to pick up a prescription from the pharmacy. Most of us are even on a first name basis with our neurologist!

7. Food is our friend (and our enemy)
Eat what makes you feel good but that usually means really restrictive diets. Eating with others fuels our sense of belonging but people can get weird about our food limitations.

Patient Day 2013

Patient Day 2013 was a little bit of awesome. Ok, it was a whole lot of awesome. When I compare my first Patient Day in 2010 to this year (I missed last year having a newborn) I was able to absorb so much more information.

In 2010 I was newly diagnosed with neuromyelitis optica (NMO) and I swear I thought I was the only one, especially in Canada! We were also newly married so as if that doesn’t come with its own challenges, my husband and I had no idea what life with NMO would really be like. I stumbled on the Guthy Jackson website and without much thought I knew I had to meet other patients. When I think about it now I can’t believe I was scared to speak to other patients, especially those I perceived as having it worse. I’m embarrassed to say it now but back then I thought by speaking to those in wheelchairs or with walkers or with visual impairments I would somehow get sicker, even though I’d experienced all that and more. In short, I wasn’t ready to admit I was one of us.

This year another patient and her husband sat at my table – it was their first time. I wondered why they were so quiet until in the evening at the bar they admitted how overwhelming it all was and I instantly recalled my first year. I’m kicking myself that I didn’t focus more on them ’cause after all, we should be there for each other. So other patient (who I won’t name here): take comfort that next year you’ll know us and although I wish we could have met for another reason, you are both part of this amazing network with nothing but endless love and support.

I love my NMO sisters Erin and Christine. They took me under their wings in 2010. For that I am grateful. I am also grateful that my best friend, Andrea, joined me this year. She has been one of my constant supporters and I love that she met the girls, the other amazing patients and we finally had our best friend trip.

Me with super mom, Nancy Reimer, who organized the very first NMO walk/run, and her son Riley.

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Erin Miller is obsessed with Sprinkles, the cupcake shop in Beverly Hills, so every Patient Day we make time to trek out for our bedtime snack.

 

 

 

 

 

 

 

 

 

 

Look everyone!  It’s another workaholic NMO patient! (Me with Sandra Adda.)

 

 

 

 

 

 

 

 

 

With Courtney Engel, me, Christine Ha and Erin Miller.

 

 

 

 

 

 

 

With my best friend Andrea in front of the famous Chinese Theatre.

 

 

 

 

 

 

 

 

 

 

NMO Advocate Nancy Reimer (the first NMO Dedicated Walk/Run)

We were extremely inspired by Nancy Reimer and her ability to put on the very first NMO Walk/Run with all proceeds going to NMO research. Read her interview here and find out what it really took to be a NMO Advocate trailblazer:

Tell us your relationship with NMO. I understand your son has the disease?

Yes, Riley, who is now 9 years old, has NMO. NMO entered our world on July 31, 2011, he was only 7 at the time. There was no warning, no time to prepare…we woke up that day to a completely different world. Riley was first diagnosed with Acute Disseminated Encephalomyelitis (ADEM) which was said to be a one time brutal attack on the central nervous system and Drs were hopeful that he would make a full recovery. The diagnosis changed to Neuromyelitis Optica (NMO) around his fourth attack (he had 6 attacks one month apart). I have seen my son completely paralyzed from the chest down, I have seen him in a coma like state, I have heard him scream in agonizing pain for over 4 hours at a time. Terrifying times as a Mom to see and to hear, but I have also had the amazing gift of watching him fight his way back to the incredible boy he is today. We are blessed that the damage from these brutal attacks is minimal in comparison to what we know it could have been. Riley is an amazing child.

Being the first in anything can be a scary thing. Many NMO patients and their support networks are doing MS events. Why did you decide to host the first NMO focused event instead of doing a MS event?

This time last year I ran a Half Marathon. I had run that distance before, but it had been awhile. After what I had been through the previous year, I felt I needed to do something to help raise awareness for this thing called NMO. Just prior to this Half Marathon, I purchased my first NoMOre shirt and I proudly pulled it over my head that day. It was symbolic to me…I was doing something…I was moving forward. As I started to run, I remember the amazing feeling of joy that came over me. Not only was I doing something that I loved, I was wearing a shirt that would come to mean everything to me. At about 13km, a song came on my ipod…it was one of those songs that evoke very strong feelings. I was not prepared to have the breakdown I did at 13km, but I allowed myself the grace to feel what I was feeling. After a few minutes, I picked myself up, restarted that song, and allowed it to drive my feet and push me towards letting it all go. I remember many things about that run that day, but I guess one of the most important things was the first thought for what would happen on May 26, 2013. I ran that Half Marathon last year alone and I thought at one point “Wouldn’t it be cool if one day there were tons of green shirts…like a sea of green…running together to raise awareness for this rare disease, NMO”. Little did I know at the time that it would be me that would make it happen. As a runner, I used what I had at my disposal to get started. I approached my friend who owns a running store with the idea of a 5km walk/run specific to NMO. He immediately jumped on board with the idea and we picked the date for the event that day. I don’t think it ever occurred to me at that time that this would be the first of its kind. Many times in the planning, I thought “What on earth have I done,” but I just kept moving forward with the planning and used every contact that I had in my life to make it happen. That is how it came to be. It was not ever my intent to pull away and separate from MS…I have precious friends who have MS and I join in that fight too. I guess for me, as Riley’s Mom, I felt I needed to do something big that would help his diagnosis. I needed to know that the money raised would go to NMO Research. Because of its rare disease status, there is not a lot of money available for research…I wanted to be a part of changing that.

We have had the privilege of participating as Team NMO in two MS Walks. Our first experience was tough, because we were new to NMO and Riley was actually in the hospital while our team of 5 walked in the event. This year at the beginning of May, we drove four hours to join Team NoMOre in Penticton, BC. This was a Team of approximately 120 people that had banded together for an amazing woman who has NMO. What an incredible day it was. We were so blessed to have been involved in it and to meet so many fantastic people. It was a life changing and very pivotal weekend for me in particular. I watched as two people with a shared diagnosis met for the first time. Neither one had met another person with NMO before. She, a woman of 38 and he, an almost 9 year old boy. The connection was instant and powerful and I will cherish that visual forever.

Tell us about the event (# of people, logistics, etc.).

The event took place on a rather overcast day at beautiful Rocky Point Park in Port Moody, British Columbia, Canada. This park is gorgeous and is right on the water. It is a place that is close to my house so I run there often. It was the perfect place for this event. May 26, 2013 was history in the making and I am so proud of how it all came together. I will never forget how it felt to take the stage and address the “sea of green”. It was a blessing to actually “see” the support with my own eyes. Our final registration was right around 370, which included about 35 absolutely incredible Volunteers. Our event started with opening ceremonies. I spoke, two others with NMO spoke and then we heard from our wonderful NMO Dr. who works out of UBC. There were 9 NMO Families represented at our event and so it seemed fitting that the two youngest diagnosed with NMO officially open the race course by cutting a green ribbon. It was a phenomenal event. Never in my wildest dreams did I ever think it would turn out the way it did. The support was priceless and we were able to raise approximately $24,000 for the cause.

What advertising did you do to promote your event?

I used a lot of social media…facebook mostly, but my posts were repeatedly shared and some tweeted as well. I contacted a few of our community papers and we were on the calendar in one and the other printed our story a week prior to the event. UBC advertised through the Canada wide database, VGH and UBC Hospital Foundation added a page about NMO and advertised the event, Guthy- Jackson Foundation advertised on Facebook several times. We had posters in the Community and in all of the Drs offices and hospitals where Riley is being or has been treated. A lot of the registration was family and friends of people with NMO that had been waiting to be a part of something on behalf of their loved one.

What involvement and support (if any) did UBC, Guthy Jackson, MS Society, etc. have with the event?

As with the previous answer, all were very supportive in the way of advertising. The Guthy-Jackson Foundation and the VGH & UBC Hospital Foundation provided brochures and information to be included in our race packages as well as gifts for our event Volunteers. They also followed the event closely via email contact with me. VGH & UBC Hospital Foundation and the MS Society both had representative onsite for our event. The MS Society in British Columbia is making many changes right now that will include a lot more NMO Families in upcoming events etc. Our event video was included in the most recent MS Newsletter. We look forward to working more closely with all of these incredible foundations as we move forward to plan next years event.

How do you think fundraising is different in Canada?

I’m not sure that it is really. I think any time you are asking people to contribute to something, you need to know your stuff. I have been forced to educate myself on all things NMO, so that I can be an effective advocate for my son and for the many friends I have made worldwide that share this diagnosis. I think if people believe in the cause, they will have no problem donating to it. Sometimes that donation is financial and sometimes it is a donation of time or resources.

Do you plan to make this an annual event?

Absolutely!!!!! Next year is already in the works. Some other pretty amazing things have happened after this event as well. Our local Patient Day is in the works and I have been asked to share our story this year. I am also honoured to have been asked recently to co-host, with two other Advocates, the Advocacy breakout sessions at Patient Day in LA this year.

What would you do differently next time?

To be honest, I don’t think there will be a lot of changes. It would be awesome to have more onsite Sponsor support and I would love to at least double our fundraising for next year. We are looking at things we can do to make sure it is just as good or better for next year. I think more media involvement would also be great. I honestly think that the media missed an incredible story (9 stories really) of how a rare disease has been brought to light in our community.

Is there anything else you’d like to share?

I would like to say thank you to you wonderful Ladies for taking an interest in this journey and for taking the time to interview me and hear a bit of our story.

To my amazing NMO Family worldwide…you are the good that has come from this diagnosis. None of us chose NMO…it chose us and in doing so gave us each other to walk beside, lift us up and help us on this journey. I am grateful to have met many of you face to face and I look forward to meeting many more of you soon. You are the most courageous, supportive, loving bunch of people and I am so very blessed to have you in my life.

To Families and Friends of those who have the diagnosis of NMO…don’t give up on us. What we may share with you is but a glimpse of the reality. I know for me, it was horrible and terrifying in the beginning and I have never felt more alone. We are not looking to be fixed…just accepted for who we have had to become because of a diagnosis. I want to encourage you to be vulnerable and to stand with us and become a part of this journey. We need you beside us to be able to continue to fight effectively. Don’t ever underestimate the impact of a hug, a listening ear, a shoulder or a kind word. You do and can make a difference too. All my love to all of you.

You can read more about Riley and view our event video at www.nomorenmo.com

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Article on Beliefnet

http://www.beliefnet.com/Love-Family/Galleries/Yes-you-can-deal-with-the-impossible.aspx?p=4

05
Nov 2012
POSTED BY Jenna
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The Ellen DeGeneres Show

We’re very proud of Victoria and Ally on the release of their new book. Congratulations!

http://www.youtube.com/watch?v=KGmVU_c7AfE&sns=em
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