Looking for participants for an online survey for mothers with physical or mobility disabilities UMass Medical School would like to learn about the health care experiences of mothers with physical or mobility disabilities during pregnancy. To find out if you are eligible, go to the survey website and answer a few brief screening questions: http://survey.umassmed.edu/moms_disabilities. If you prefer to complete the survey over the phone, please call 1-888-368-7157 to speak to the research staff. (UMMS IRB ID: H00001202)
Hi I’m Rose I’m 25 I’m from the UK. I have a 2.5 year old son and a husband who i have been with for 11 years. My life was normal.. Stay at home mum, gym goer, socialiser and very active.
My life changed dramatically in June 2014 ( this week is my 1 year diagnosis anniversary).
I’ll start from the beginning.. In 2012 whilst I was pregnant I woke up one day to notice I had this strange sensation In my legs.. A numb tingling one. After lots of tests and this weird sensation not subsiding my neurologist at the time put it down to impending nerve endings. I gave birth and instantly the strange sensation disappeared. I carried on with life a busy full time mum trying to juggle life with a child.
Then in June 2014 I noticed my hands felt strange that tingling sensation that odd feeling where nothing feels ‘normal’ not being able to tell the difference between something sharp or smooth was back. I went to my loca Dr they sent me for the blood tests. By the weekend this sensation was had affected my whole upper body, I had blurred vision, my balance and coordination was off.. I just didn’t feel right! On that Sunday I sent my husband off on a training course miles away from home ‘I’m ok I faked’ my dad knew otherwise. He marched me to the emergency Drs who eventually sent me to a and e. After a 3 hour wait I was seen by a lovely lady Dr after explaining everything to her she told me that they were going to rule out a disease called Multiple Sclerosis. I had heard of this.. No way had I got MS…
After a week in hospital and MRI scan, lumbar puncture, many blood tests and a course of IV I was told they were 97% sure I had Ms. My heart sank.. What did the future hold? Would I be in a wheelchair? How am I going to look after my son? I had a 4 page leaflet explaining Ms and unpredictable disease to get my head around.
Once discharged I would have to wait until MS specialists got in touch with me. My hands were still completely numb, I was wobbly on my feet, I had no grip or strength in my hands I went home and struggled through. My mom (bless her) helped me massively with my son who at the time was 1.5.
After the initial shock of the diagnosis I started to do my own research look for social media support groups etc. Me and my family adapted to a new way of living, my Ms nurse who was a massive help sorted me with physio, occupational therapy everything I needed to know.
Fast forward to March 2015… I’m in remission getting to used to a new normal, listening to my body, getting used to the fact I can not do what I used to before. Ihave had to slow down massively which is hard with a 2 year old but we adapt and we get through, nothing stops us we just take things slower now and at our pace!
I am now heavily involved with my local mssociety branch. Thanks to meeting a lovely young lady through the Mssociety forum, who was also diagnosed last year someone who I now call a really good friend. I have recently become their fundraising officer and am trying to set up a parents and toddler group in my local area.
At the moment my Ms is not behaving I am having a relapse, my left leg has being affected this time but I’m pushing through and staying positive!
I see my MS more positively now. I want to give support to other parents out there with Ms. It’s scary and it’s unpredictable. We need to support each other as much as we can.
Ms is seen as a disease that affects older people it’s not the case now.. Most people are now being diagnosed in their 20-30s . This is why I am trying so hard to setup a group to offer support which I didn’t get until very recently.
If you are a mom or dad in the UK with children I have a Facebook page and a group on momwithms.org. I will post links..
Please don’t leave yourself in the dark there is support out there for you ❤️
UK Moms on MomsWithMS.com (must be logged in to access!)
I am fortunate enough to be living in Seattle, which right now seems to be one of the most temperate areas, at least compared to the other states it is. It is getting way hotter than usual though! We started with a winter with dramatically less snow than we usually do and now I’m thinking it is time to get an air conditioner! I don’t know of any friends that have an air conditioner but I’m going back to my days in NYC when the summers were scorching, and I know that having one made a world of difference. I was shopping on Amazon and decided to add a few of the things I found that had great ratings and high power to a widget, I’ll add them to the Moms with MS Store too to make it easier to browse, but this is what I have so far:
We are also working on getting some other cooling gear that we’ll be selling soon on the site, but more on that later!
Stay cool and share your tips so we can cool off too please! I know I’m making lots and lots of ice cubes for iced tea…and I’m considering brewing my coffee at night so I can have it iced in the morning too!
Last month we got a little bit of a late start on the monthly poll, but we are getting into a rhythm! Again the results are pretty split! We asked this time about Breastfeeding and the decisions made to do it or forgo it for medicine, here are the results:
You can see the new June Poll too which is about our age when diagnosed….
Incontinence is something that can affect just about everyone, be it from pregnancy, MS, or other reasons. I felt like I had to share what I found which is panties that are meant to be “Period Panties” and protect your clothes during that time of the month. The ones pictured below caught my attention because they don’t look like training pants!! It looks like pretty regular underwear!
I’m curious to know if anyone has tried these or the SheThinx ones that I’ve seen advertised on Facebook recently that also donate to women/girls who need it in other parts of the world…I’d love to see some Moms with MS reviews!!
For the month of may we will be talking about breastfeeding, it is a question that is fresh on the minds of Moms who have MS when they are diagnosed and either planned to or want to breastfeed. You can access the May Poll on the right side of the homepage (under the question mark!) and submit your vote!
April ended with a tie, half of the moms polled were diagnosed before having children, and half were diagnosed after, confirming that YES You can get pregnant after diagnosed with MS and that we all have different experiences!
You can comment on the April Poll post if you would like to share you would like to comment or at Share Your Story if you would like to write a bit more about it on the site! You can also contact us if you have an idea about what a future survey could be…
If you prefer to discuss this topic in private you can also go to our private community by clicking on the mom and child image under the poll.
Hope you have a wonderful May!!