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
Avoid using medical terms they will have no clue what they are and it just confuses them
That MS is NOT contagious and they can not get it by kissing or hugging you
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.
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?!
Hello 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
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.
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.
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.
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,
Board Member for Canadian Neurovascular Health Society
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!!
Our 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 MomsWithMS.com 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 MomsWithMS.com 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.
Fabulous job everybody!!! All of you and all of our other teams are helping to spread awareness and help the NMSS with their Vision (of) ad World Free of MS!!
If you had a team this year and you want it to be affiliated with the Moms With MS National Team next year you can create the team via our page HERE. You can probably change the affiliation of your team as well through your local Walk MS support and you can also just post a link to your team page here so we can see it!
More than anything I see these events as a way for us to meet and support each other, and also to enroll our family and friends to support us because “Together We Are Stronger!!“.