I’m Dr. Picone – Raising Awareness for MS !

My name is Dr. Picone; a 20+ year Neurologist treating patients with MS.  I currently practice at Holy Name Medical Center in New Jersey.

The reason I am reaching out today is to humbly ask for your help in promoting our Indiegogo campaign launched on Sept 9th.  I have been investing a lot of time in money over the last 8 months getting ready for this moment.  The project is MS Connect.

Our Mission Statement:
MS Connect is a mobile app striving to create an organized and centralized platform for coordinating MS care. We are creating an app specifically designed to improve the quality of care for patients with Multiple Sclerosis. The MS Connect App will provide patients with an easy way to stay connected with their health information, while providing physicians with a multifaceted view of a patient’s disease progression.  This mobile app is not the cure but it is a step in the right direction.  It will greatly increase my ability to treat people with MS.
Our slogan:  Making Physicians better Physicians and Patients better Patients.
Here is one of the videos:

We are looking for people to really get behind this campaign to help get the word out to their family, friends, social media accounts, newsletter, etc!
I’m really banking on the strength of the MS Community to rally behind me and spread the word!  I have about 50 people, organizations, and social influencers on board to help so far.  Will you join me?!

With Respect,
Dr. Picone

Mary Ann Picone MD

Board Certified Neurologist

Member of New York Consortium of MS Centers

Board Member MS Hope

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The Guilt Mines


I haven’t slept well since my first child was born.  I’m sure this is very similar to other mothers with young children. You know what that is like you sleep with one eye open and are ready to console if one is crying from a scary nightmare or if you hear a little foot hit the floor if one is sleepwalking.  Our inner strength as mothers is truly amazing even at our tiredness of days we still find the strength to put their needs first even when it’s our darkest hour.

It’s hard to explain the chronic fatigue we battle to others who do not experience it. My best way to try to explain how it is for me sometimes personally is to imagine yourself running up a steep hill in extremely hot weather with rubber boots on with cement filled in them. It doesn’t matter how much rest you get you still wake up and feel like you just ran a marathon. I can honestly say though my fatigue has gotten a little better since I was treated for my first venoplasty for CCSVI 5 years ago.  I still have it but I have more good days than bad now with it.

So as a mom with physical limitations it’s a mine field you try everyday not to step on the “guilt mines”.  You could feel guilty for pretty much everything.  The worst for me is I have struggles everyday with physical jobs or chores that need done so I ask my children for help.  I know it doesn’t hurt to have them help me but at times they just want to be playing and be little kids and that makes me feel guilty for having to ask more than a mom who doesn’t battle with these issues. My oldest son always says to me if he sees me struggling with something “Don’t worry mom I can help you”  so I guess to raise children who will be more aware and empathetic of others with disabilities are life skills that are so invaluable ~ but I still feel guilty.  My children have never known me any other way because I was diagnosed long before they were born.

Here is a quote from an amazing lady I follow on Facebook Caylee Shea. She is a Model and activist for the Chronically ill.

“One of those days when I just need to cry. I need to be angry, I need to be frustrated! I am just so tired of being so tired. Living with chronic illness is not easy. I don’t just wake up and jump out of bed with a smile. No. I literally plan every move and only get a limited few. Every move comes with a price. Every move causes a symptom.

Being alive we have two choices- make the best of what we have or simply don’t. I choose to make the best of it. But this is still a battle for me every single day.

But that does not mean I am not going to need to rest my weary head and cry once in awhile. The way to stay positive is to allow ourselves to cry when we need to.

And today ~  I just need to cry. “

“I try to live in the moment and not beat myself up too much”

So please try to be kind to yourself and if you are having a bad day just know that it’s ok to cry and be frustrated because this MS monster steals a lot from us. We are only human to grieve the way we used to be before diagnosis.

I want to hear from you as a mother with MS. What tips can you share that make your life a bit easier? Please comment on my blog below so we can all know we are not in this alone.

Until my next blog take care:)

Michelle Walsh


Let the Academic Adventure Begin!

My books!

Tomorrow I start my Masters degree, which has been something on my ‘to-do’ list for quite some time. About 5 years ago I started to think about career advancement. I h always had a dream since I was young that I would continue my education and complete a Masters degree. Not many in my family have this level of education and I always thought it would be such an amazing thing to achieve. I remember the day I walked across the stage to get my diploma at the University of Victoria and the proud feeling I had, and seeing my mother’s face and how proud she also was of me. I would give anything to relive that moment. So tomorrow I start my 2 years journey towards my Masters in Communications at Royal Roads University. Most of my education will be online, and I will have to complete two, three week residencies on campus in Victoria, which is a ferry ride away from where I live now, meaning leaving my son for the first time since he was born for more than one night!

When I was first diagnosed with MS I, like many, started to have fear about doing things, something I never really had before. Having had optic neuritis I became very fearful of loosing my vision, I am a creative person and I can’t imagine not being able to use my eyes. I also then started to read about MS, go to workshops put on by the MS society and even attended a support group there a few times, and as I attended these things the fear I felt around MS would always surface. I would meet lovely people, but I would also see how the disease had progressed in many, and would see myself in them, knowing that I too could follow in similar paths. I would have fear over how this illness could take over my body and manifest in disabilities that would get in the way of living my life the way I wanted to. I worked hard to have a positive outlook on it all, acknowledging the fear all while not allowing it to control me. I would go to yoga often, take time to eat healthy and ensure that I was taking time for myself (Now as a mother I find those things have all fallen by the way side, I am sure other moms, MS or not can relate.) In 2011 I had a huge relapse and that fear came back and ran me over like a train, and over and over again. I loss the usage of my legs, was wheel chair bound and had to take time to practice what it meant to walk again. The cognitive disfunction I had was awful, I could barely finish a sentence and my brain was in such a heavy fog that I could not process much at all. The fear came back with that relapse and it made things feel so much more real as to how this awful illness can really take over your mind and body and leave you feeling helpless.

After a few years of humming and hawing about returning to school and working through my fears about completing a Masters and then and putting it off after being accepted two years ago, tomorrow is the day I finally begin! I put it off for two reasons no MS related. 1. I was trying to get pregnant for three years and it was taking a toll on me mentally and I needed to give myself space. 2. I finally gave birth to my son, which was was joyous as well as and it was hard on my body and so I needed time to heal before I could embark on this education adventure. I wanted to make sure once I started I would do it well!

The fear I had experienced is still there, it comes and goes and sometimes it stays a bit longer than I would like. Before becoming a mother I had fears about doing my masters successfully as a person living with MS. I worried about being able to handle the stress of it while working and I worried about being able to handle the cognitive side of performing at a higher academic level and I worried how I would balance it all. It has been years since I have been in an academic setting and at that time functioned cognitively much sharper than I do now. Now as a mother I have those same fears, but with the addition of motherhood on top of them all. I have found the introduction to motherhood hard, both mentally and physically. I am grateful for the supports in my life that have made it easier (thanks Tia Sonia!) but as I am sure many moms with MS know, there are days I would rather curl up in bed as the pain is in tolerable, or I just feel so weak, but I must get up and put on a semi-happy face to be there for my little man.

I often wonder how will I be: a mother, a student, a wife, a friend and a business owner all at the same time? To be honest, I have no idea! What I do know is I can’t be fearful of what could be around the corner with my health and just try and pace myself. To be a good mothers I need to also follow my dreams and remain true to what my needs are as well. Living with MS is unpredictable and there is a chance I could get ‘sick’ during my studies, but that chance is always there, studying or not.

I have my school supplies, my books and today am doing my orientation to online learning. Everything feels ready to go, but I still have that little ball of fear at the pit of my stomach. I am also filled with excitement and pride that I finally about to start my Masters!
I know there will be times I will fall and need to get back up.I know that I won’t get to be as social as I like, may not see friends as often as I like (motherhood has already changed that a bit) not remember birthdays and not be able to attend as many fun events as I would like. I know it isn’t going to be easy, but I know I can’t wait to walk across that stage and get my diploma and have my son waiting there to give me a big hug! That is what is driving me and gets me excited about starting this academic adventure! But let’s be honest here: I am nervous as all hell about it :)

I would love to hear from others that have taken on such full plates as a mom living with MS and some of the ways you helped yourself and your family through busy times like this.

24 Years Ago, Bombshell was Dropped..

M_WalshHello my name is Michelle Walsh and I was diagnosed with MS 24 years ago. It all began when I was 18 years old, in my first semester of College, living an hour away from home when I started to notice something was not right with my body. I got very electric pins/needles in my arms and legs that were so painful it felt like they were plugged into the light socket. I went through 4 different emergency room visits only to be told by the doctors “it must be stress and go rest you will feel better”. As the weeks went on I didn’t feel better. Things got worse with an over whelming fatigue I could barely get out of bed in the mornings no matter how long I slept so I called my parents to say I know there’s something else going on with me. My mom is a nurse and she knew there was something not right either. I drove home to see my family doctor who then referred me to a Neurologist who specialized in MS. The Neurologist did several neurological physical tests and after he said “I am 90% sure you have Multiple Sclerosis” Over the next few months I had a spinal tap and MRI that confirmed this. I have never forgotten this day the bombshell was dropped.

I was initially very mad and sad. I thought what kind of life will I have now? Will I ever find anyone who will want to marry me because of this diagnosis? So many emotions went through my head for the first while sad, anger, disbelief, etc. I just couldn’t understand how I could run long distances before and be so active months ago to now being so tired that I can barely get out of bed. I was diagnosed with Relapsing-remitting MS so when I learned to pace myself, not over do it I could manage this MS monster.

I competed for Rodeo Queen Contests and won two titles to then advance to compete for Miss Rodeo Canada. Another one of my dreams was to be a Flight Attendant and I went on to do this too. I flew all over the world and saw so many amazing places and worked with many amazing colleagues. I also in this time of my life met the man of my dreams. Mutual friends of ours set us up and we hit it off instantly and have never looked back. We have been together for 13 years now, married for 10 and have three beautiful, healthy children. We live on a mixed farming operation in southwest Saskatchewan.

So after being diagnosed for over 24 years I have learnt a lot of things that I want to share with others who have MS

  1. To take this MS monster one day at a time. Be kind to yourself and stop putting unrealistic expectations on yourself. If it’s the kind of day where you are fatigued then prioritize what really needs to get done to get through the day and what can wait for another day.
  2. Accept the kindness and help of others if they are offering it. Trust me this is still a hard one for me to deal with because we want to try to be independent as long as we can. But if someone is offering to help you out when you are not feeling well this is out of kindness and concern for us and you should take it because you are no less of a person for accepting their help. You are just being smart in conserving your energy and realizing that others care and want to help.
  3. We lose a lot of dignity with this disease be it with our bladder, bowels, vision loss etc and if you set your pride aside and use the devices that are available to make your quality of life a little easier this will help your stress levels. Once I got past my pride and realized I needed the cane/walker/scooter to get around with it made my life so much easier with less falls.
  4. Try to talk to someone you trust be in a close friend, relative, your psychologist because keeping your emotions in will not do you any favours but it physically flares up your MS. Also doing whatever type of activities to help manage your stress such as yoga, meditation, massage therapy, listening to music you like whatever works for you helps to keep your stress levels down. This is so very crucial in regards to managing our illness. When I worry or get stressed too much this can bring on a relapse in a heartbeat for me.

I am so very honoured to be Blogging for Moms with MS now and hope I can connect with other MSkuteer moms and dads out there so we all feel connected and not alone. Living with MS as a Mom has its challenges for sure but it can be done.

Please connect with me on Twitter @exflygal
Facebook https://www.facebook.com/mwilwal

Until my next blog take care,

Michelle Walsh
Saskatchewan, Canada
Board Member for Canadian Neurovascular Health Society

Introducing Michele Mateus our new blogger here at MOMS with MS

Hi I’m Michele Mateus and I am excited to be a new blogger here on Moms with MS.

I was diagnosed with Relapsing Remitting MS in 2008 in which presented itself with optic neuritis. In 2011 I was hit with a huge relapse that left me in a wheel chair for 5 months then a walker after that for another 3 or so, and a long road of rehab to get strong again. During this period I was blogging for the WAMS Foundation (who helped me in fundraising to get my CCSVI) and I loved blogging and sharing my experiences and outlooks on how we can live with the MonSter. When I stopped blogging for them I missed it but was not sure where else to blog and starting my own seemed all to overwhelming. Fast forward a few years and here I am sat now as a new mother, and like many new moms do I was struggling with the new role, but also my MS was there in the background popping up on days when I really could have done without. So I searched for resources on being a mom living with MS and I came across Moms with MS. I was excited to see that there was a blog and an online community of other moms that would really understand what it is like being a mother who lives with a chronic illness. Meeting new mom friends is hard enough to say the least, so finding this space was very exciting to me!

I reached out to Kristin that started this site and after we started chatting a bit I remembered that she read my old blog and would often retweet and share my posts; pretty cool how things often go full circle in life. She asked me if I would consider writing for Moms with MS. When you blog for something you believe in, something that is part of you it makes you vulnerable but it also empowers you. Some of the things that came to mind when she asked me were:

  • do I want to go ‘there’ again? ‘There’ meaning opening up to the world and sharing my inner thoughts and my challenges (and of course success too!) in a world that is so much more online than it even was 4 years ago.
  • I worried that putting myself out there again could effect my professional life and my photography business. Would people judge me and see me as someone not as strong that they could rely on because of my health condition?
  • Would I loose potential clients if they knew I had MS? Would my peers think I can’t do my job well because I am ‘sick’ (ps: I don’t think of myself as being sick, ever)
  • Do I even have time for this?

After I went back and forth on the worries I had that were blocking me to do this, I then thought of the positives.

  • When I blogged before my blog was very active, I would often have upwards of 10 comments on each post that became like mini discussions, which was great to be part of.
  • Blogging allows one to connect with others that are experiencing the same thing and makes you feel you are not alone.
  • Blogging makes you feel part of something bigger and positive.
  • Blogging can be therapeutic and help one work through some of the struggles faced when living with a chronic illness.
  • As someone that loves to research blogging is a great incentive to do so, reading about new therapies and ways of self care, which are things I used to read about and do so much more before becoming a mom, so in this case blogging is also a motivator.

After weighing out my fears vs. the positives that could come about joining Kristin I finally told her it was a YES and I was ready to go! So here I am introducing myself to this community and excited to be part of it. It is my goal with my blog posts to share some of my experiences as a mom living with MS and hopefully start some discussions around what that looks like and how we as a community can support each other. By we I don’t just mean moms with MS, I also mean those that love and support us as well as the general public. Knowledge is empowerment and if more people learned a bit more about the other we would cultivate more compassion and understanding in the world, and hopefully have less judgment and conflict.

I would like to say a BIG THANK YOU to Kristin for inviting me to join her here! I look forward to connecting with this community.

Michele Mateus & Her Family

Michele Mateus & Her Family. Photo credit @Alyssa Kellert Photography