Accommodation you ask? Why that’s only for special cases.

I have been wanting to write this post for some time, but in all honesty this was such an anxiety causing problem for me all summer that I only feel ok now to share my story. The short and long: I needed to seek accommodation at my last place of employment due to my MS and never in a thousand years could I have imagined how it went. I am proud that I managed to walk away from this mess with my head held high, despite wanting to further fight this, but what is the fight really worth? It came to a point that I realized that I would not want to work for an employer that discriminates against their staff. When I first got diagnosed with MS I heard horror stories of people being discriminated by their employers and I thought who on earth would be that awful?! It was a real shocker to find myself now at the center of one of those stories.

In March I had a routine MRI and two weeks before I was to return to work I went to see my neurologist to get the results and have a check up post baby. Since having my son I had really hard days riddled with pain and weakness, some days I felt like I couldn’t even hold him as I was not strong enough. I write this with tears on my face, as no mother wants to feel like she is too weak to hold her child.

When I went to see my Neurologist I told her of the pain, and I broke down as I was worried to hear that this could indeed be my MS being active. I expressed to her how terrible I had been feeling and told her I was not sure if what I was feeling was post partum changes in my body or MS, or a combo of both. After examining me she confirmed that it was indeed my MS that was to blame. She then showed me the results of my MRI, which was not that great. I had new lesions and she was worried about the progression of the disease in my body based on the symptoms I had described. She suggested that I ask my work for a few more weeks off to figure out what would be best next steps for me and she suggested that if I decided to return to work that I ask them for an accommodated work schedule.

I loved my job and I had always intended to return to work. I drove home with tears streaming down my face the entire way, scared of what could be brewing in my body, worried about my job security and sad that as a new mother I had this MS jerk in the way of me enjoying my son the way I wanted to. That same evening I tried to pull it together to call my supervisors to discuss my options. I had always had a good relationship with my place of work and was a good employee so I didn’t think there would be a problem. He was not there so I left a message letting him know that I needed to talk to him ASAP about my health and how it might affect my return to work, I followed up with an email. Almost nine days later I still hadn’t heard back, sorry but that’s just rude. I get that people are busy but when an employee leaves a message saying it’s health related, there should be some urgency to your repsonse. I called and left another email, and the reply I finally got was that he was too busy and the acting supervisor would call me.

When I finally spoke to the acting supervisor and explained the situation, I let her know that I wanted to return to work but I would like to see if I could seek accommodation to work from home two days a week (I worked four days a week) her answer was and I quote “I am not sure as we usually only reserve the right to work from home for special cases.” UMMMMM SPECIAL CASES? How special is special because I am pretty sure that a letter from a neurologist is pretty special!

I was so upset and we ended the call with nothing solved. My neurologist had connected me with a Social Worker at the MS clinic to help advocate on my behalf, and when she called to speak to my acting supervisor she too was told the same thing, that working from home was for ‘special cases’ and she offered this suggestion: I quit my job and come back as an auxiliary employee and work casually at the front desk. Apparently this would me flexibility to work when I felt well. UMMMM WTF! I could not believe my ears when my social worker told me this. So let me get this straight: leave my job of almost 8 years, go to a role four pay scales less than what I earned, loose my benefits and all job security and work on call?! Not to mention what about my contributions related to my current role being valued? Work on call? How on earth would I get childcare last minute? My Social Worker let me know that they were violating the Human Rights Code (Duty to Accommodate) and at that point suggested I file a formal complaint.

By this point we were already two months in and nothing was decided and I kept asking for my sick pay, which they would not answer my request for, not even to let me know if I had access to any. Finally I got my Union involved who also confirmed there was a violation based on the Human Rights Code and they wrote my employer a letter telling them I was entitled to my sick pay (I had 160 hours banked!) and reminded them that they had a duty to accommodate. I would like to thank my CUPE 15 representative, had it not been for him I am not sure I would have received my sick pay.

The battle went on and truthfully I began to put my head in the sand. I felt so hurt that I was being discriminated against as a person living with a disability and chronic illness. I decided to seek legal advice who confirmed that my employer had acted unjustly and that I could put in a complaint with the Human Rights Commission and even go after my employer for lost wages and the discrimination that they displayed. They also told me it could be a long battle and for me to think about the energy I had to take this further. My health was suffering, I was riddled with anxiety and I just wanted to end this all.

Not only was I dealing with the results of the MRI at the back of my mind, but all this too now. To add salt to the wound one of my fellow employee’s, who I called a friend, called me one day and told me that it appeared at work that I was ‘milking it.’ That‘s a pretty skinny cow because I was not getting a penny! I was shocked he would even suggest such a thing. Not to mention how would he have heard anything as I had only spoke to the acting supervisor.

My lawyer helped me write a letter detailing all that happened in which was sent to upper management. Two weeks passed and not one of the four I sent it to responded. I continued to feel disrespected by my employer, and question if I really wanted to spend time away from my child in a place like that? After much thought I finally decided to hand in my resignation, with yet another letter letting them know why I was leaving; I had been discriminated against as a person with MS in need of accommodation and did not want to work for an employer that had no time for their employee’s. I encouraged them to review their hiring practices when putting people in supervisor positions and that they be trained on employee rights and the duty to accommodate. I suggested that staff and management engage in sensitivity training and that I hoped no other employee would have to face the rudeness and discrimination I had to.

There are many more ugly details to this story that make it go from bad to worse but the important details have been stated. You must be thinking how can there be more, right? Like the Acting Manager gossiping at a dinner party about wanting to get my fired to her friend in front of someone that she had no clue knew me, using my first and last name. Smooth move there Mrs. Manager, smooth move. I have left names out on purpose when writing this post as my goal is not to point fingers at any specific person or the organization; if you really want to know who these people are I am sure a quick visit to LinkedIN will help answer those questions for you. Upper Management did eventually tell me (three weeks ago) that they were looking into this issue but by that time it was just two late (this all started in May!) If they had a solution, by that point I was no longer interested. I write this to close the chapter in the pain this caused me, to share with others that this still happens and let people know we have rights! Not only was I discriminated against as someone with a disability, but also as a woman returning off her maternity leave, and this was also stated by my Union rep and my lawyer. I made some mistakes along the way as I was not thinking clearly, mostly forgetting to follow up with emails and try and get as much as possible in writing. I hope my tips below will help others should they ever be in this awful position.

A few tips if you ever find yourself in this situation:

  • Accommodation is a legal right that all employers are obligated to fulfill. PERIOD.
  • If you are part of a Union go to them right away! They are helpful.
  • Write everything down and keep a folder of all emails (luckily I did this).
  • Send follow up emails after phone calls.
  • Know that you have rights and the employer is legally bound to accommodate you based on the Employment Law Act and the Human Rights Code.
  • Get a lawyer! Even if to settle your mind, get some feedback and help with the support you might need during this time. I am extremely grateful to the legal advice I was given and the support they offered me.
  • Don’t feel bad to send a letter letting people know that they are wrong. You have the right to express yourself and hold people accountable for their actions.

Lastly I want to say thank you, to anyone that might read this that I worked with (both staff and volunteers and board members) for the great times we had together. I enjoyed working with you all for the last 7.5 years and I left with a heavy heart, not having the chance to say a proper goodbye. My amazing volunteer team gave me the energy to come to work each day, leaving me with fun stories to tell and a big smile on my face daily. The generosity these volunteers showed as active members in their community always warmed my heart. I learned so much from everyone, built friendships and will forever remember the time spent with you all. I am grateful for the opportunities I was given and the chance to work with a great staff team and amazing group of volunteers and have the chance to learn so much about the arts. I wish you all the best and hope I run into you in the future.

Are any of us really ready for this?



No one can prepare you for the difficult and/or awkward questions that your children may have about your MS.  I have had the MS diagnosis before I had children so they have grown up with this and not known me any other way but many of you have been diagnosed after and both scenarios have their own sets of challenges. I was still afraid for this day to come and dreaded the tough questions but it already has already happened in my household.

My children have asked

  • “Mommy will you die?”
  • “Mommy will you always have MS?”
  • “How did you get MS Mommy?”
My best advice is to be honest but to keep the facts age appropriate when you are talking to your children.  My children are young so I didn’t want to scare them. I was worried about telling them too much or not saying enough. I just trusted my gut instinct when doing this because no one knows my children better than me right? I did some researching on the internet for some helpful advice so I was prepared beforehand but as best prepared as you try when it comes to children and asking questions expect the unexpected. Are any of us really ready for this?
I just typed this topic into the search engine and pages of websites came up but here are a few example
Top three traps to avoid I would suggest are
  1. Avoid using medical terms they will have no clue what they are and it just confuses them
  2. That MS is NOT contagious and they can not get it by kissing or hugging you
  3. There are researchers all over the world that are searching for a cure everyday
Whenever I have had to explain anything important to my children I try to end whatever conversation we are having with a positive one so that they are not scared or worried when we are done talking. I reassure them that we take our lives one day at a time and enjoy it as best we can. We don’t waste our time or energy worrying about “what ifs” in the future. I sympathize with you if you are going through this right now because when it comes to our babies we want to shelter them from anything scary.
Do those of you who have been in this situation before have any advice for our Moms with MS family? Please feel free to make comments under my blog I would really like to know how others have handled this.

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

Facebook Page


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

Until my next blog take care,

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

PC594 The Film by Libby Spears #LydiaEmily

An amazing woman with a message, and a story to be told. Using her talent to advocate through her art, LydiaEmily. She currently has a crowdfunding campaign to share her story via film with an award winning producer, please support her!!

We will be watching this campaign/film as it progresses, it is SUCH an exciting project!!

“Art can do more than just hang, it can help.”

New York Local Mom Group

NewYorkOur next featured local group is for New York Moms!! This group was created by a member and has a number of moms who are from all over the state of New York. To join this group is to connect with other moms who you might be able to meet up with and definitely exchange resources and recommendations.

Local groups on are for moms to both get and provide peer support and recommendations to what is or isn’t working for them (doctors, pharmacies, etc.) and maybe even coordinate some events to get together locally or via phone/internet! So if you are a mom with MS in New York we hope that you will join! You can also promote your own local group that you might have established or maybe you want to start a new one from there.

Please note that to access the group you must be a member of our private site. If you are not a member you will be prompted to create an account and will have to wait for it to be approved before accessing the site, so be sure to fill out all the questions! If we don’t have a site for your locality yet then you can Contact us.