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from people living with MS

Words for the newly diagnosed

Each person who takes part in this bookhas been told “You have MS”. If you arereading this, it is because you have beentold the same thing. I got that punch in 2010and it still hurts.

Too often, following diagnosis, a personloses their sense of perspective. Taking astep back, it’s not difficult to explain.Something uninvited, unexpected, andunwelcome has entered your life. Theclinical manner in which the news istypically delivered can lead to isolationand fear. We are not sure what causes MS.We are not sure how far off a cure is. We are not sure what are the best actions totake….

This book aims to show that people can stilllive a good and happy life with MS. It hasbeen written by people who have MS forpeople who have been recently diagnosed.I call it Organic MS.

Thank you to the Minister for Health SimonHarris for funding me to make the bookthat I wish I had been given in 2010. Thankyou to Rachel Lynch for making it lookbeautiful and to the people who have takenpart for sharing their experiences.

[Joan Jordan] November 2017

“Everybody has a plan - until they get punched in the face…”

Mike TysonMy name is Sinead. I'm 41 and I was diagnosed with

Relapsing Remitting MS in July 2007. I was 30 at the time. My dad was with me the day I was diagnosed and I really don't know

who was more shocked - him or me. My first reaction was "NO. THIS CAN'T BE HAPPENING TO ME!!!"

I felt like my world came crashing down around me. I thought it was going to be the end of what I called backthen a nice life. But I waswrong. MS has changed mylife, but for the better.

Name: Sinead Smartt

From: Duleek, Co. Meath

[P2]

[Diagnosed: 2007]

My attitude has changed completely. I value my time with my familyand friends a lot more. I value my husband more and he has been ahuge support to me. I make time for people now where before I wastrying to do ten things at once. I have huge compassion for peoplein a similar situation. Life does not end, you

just change what is really important."

Once you have absorbed the news andgotten over the shock, it's important tofocus on continuing your life as normallyas possible. Do not think about what you can't do, instead concentrate on how you can continue to do thethings you've always done - you just might need to do them differently now.

Try to reduce any stressfrom your life and liveat a pace that suitsyour abilities. MSshould not stop youdoing anything youwant to do. A strong and

determined m

ental

attitude will h

elp

you fight it!

Name: Claire Mitchell

From: Montenotte, Co. Cork

[P3]

[Diagnosed: 2007]

I was diagnosed with Relapsing Remitting MS in 1988 when I was 31 years

old with small children. That really is a lifetime ago but I remember being told by the neurologist that there was no cause, no cure, and no

treatment. I thought my life was over. As time passed, I realised that life continued - albeit differently.

I like to think tha

t MS has made m

e a

better person: mo

re appreciative, m

ore

understanding an

d more tolerant.

Over the years I h

ave

come to accept t

hat MS is a big pa

rt of my life but I

have not surrend

ered to it. “Stand

up and fight!”

is my anthem. Th

ere is life after d

iagnosis.

I remained in

gainful

employment f

or a further

22 years. I wa

tched my two

daughters gr

ow into matur

e and

beautiful you

ng women. I w

atched

them fall in lo

ve and I walk

ed

them down th

e aisle on the

ir

respective we

dding days.

I have becom

e a

grandad.

Name: Declan Groeger

From: Dublin Hill, Co. Cork

[P4]

[Diagnosed: 1988]

As it happens, he himself had MS and unfortunately did little or nothing to

slow down the development of the disease. I believe that he was using a wheelchair within two years of being

diagnosed. To cut a long story short, I have done my best to slow down the progress of my MS. I am still mobile, even

though my balance is not great. I look forward to the future and the breakthroughs the medical world is constantly making.

I was diagnosed withhaving slow Progressive MS.At the time, I was aware ofMS and how debilitating itcan be. I had gone over toLondon in 1988 to work. Istayed with my Uncle Noelwho had a flat there until Isorted myself out.

Name: Fiona Arnold

From: Mosstown, Co. Louth

[P5]

[Diagnosed: 1995]

Name: Joan Jordan

From: Tenure, Co. Louth

[P6]

[Diagnosed: 2010]

You have just been given news that

will affect your life forever.

Remember that it’s not your fault and

to take things one day at a time. You

still have a future - but for now, focus

on today. Be good to yourself and

allow in the people who can help you.

You don’t have to do this alone.

Being Diagnosed with MS is not the end of the

world. You can live as normal a life as anybody else with modern medication.

I probably had MS for the last 30 years but with no

medication.

Name: Joe Reilly

From: Castlebellingham, Co. Louth

[P7]

Joe is the Secretary for the Louth dis ABILITY group and he is also the Assistant Chair of the Louth Voluntary MS Ireland Branch.

If working, continue to do so, even reduced working hours if possible. Working removes you from MS. Always attend your consultant and GP for reassurance.

Name: Josephine Kiernan

From: Drogheda, Co. Louth

[P8]

[Diagnosed: 2015]

I still lived a normal life. So, there is alwayshope for everyone. It's notMS that will take you but something else. Just like

everyone else.

Join your nearest MS Society and

avail of any activities on offer. When

possible, also attend coffee mornings

and MS information talks and you will

meet other people with similarsymptoms.

[Diagnosed: 2012]

I knew so little, about the disease Multiple Sclerosis when I wasdiagnosed in 2001 at the age of 35. I learned quickly from researchand experience what it could and would do – what it would takefrom my body and mind. What I didn’t know, didn’t consider, wishI’d known about in advance was how MS could and would tap my spirit - my mental health.

I spent the first five years after diagnosis trying to get my head around what the disease was doing to me. Only then could I begin to get my heart around the idea of living with multiple sclerosis.In finally giving myself permission to explore how to gracefully retreatnow and again so that I could lick my wounds and prepare myself forthe next round, I began to find a way to acknowledge that MS was also taking its toll on my mental wellbeing.

It was important for meto understand that thevery mechanism of theimmune system struggletaking place in mycentral nervous system’swiring was having a real,chemical effect on howmy brain was functioning.

Name: Trevis L. Gleason

From: Dingle, Co. Kerry

[P9]

[Diagnosed: 2001]

Perhaps it’s because of the improperly placed stigma society places on onefor ‘not having control’ of their emotions – particularly for men. Maybe it wasbecause of that same unjust mark we place on mental health issues as a lackof control, resolve or some other weakness of character rather than the truthof it being a physical disorder of the way we experience and expressourselves. Quite likely, it was fear that admitting I was having a hard timecoping at that stage in my disease might mean that I would be in that darkplace forever…

I needed to understand and accept that therewas a ‘real’ reason why my mental state wasbeing changed.

Some common symptoms of depression,in particular, can overlap with symptomsof MS. We may not realize that it ishappening to us. Be diligent inrecognizing the symptoms of depressionin yourself. It also helps to havesomeone close to you who can speak upif they observe you exhibiting themultilayered emotional symptoms of MS.

[P10]

I don’t know exactly why ittook me 5 years to get tothat point in my MS journey.I wish it hadn’t taken so long.I am, however, glad that Ieventually got there… andthat I got there in one piece.

“Forewarned is forearmed”, they say. When itcomes to understanding that my mental healthcould be a target of my Multiple Sclerosis, I wish I would have known… now you do.

While I very much agree with following medical advice,

and talking to doctors or nurses about the options, at the start I felt bombarded with information. Diagnosis is a tough process to go through. It can be a shocking and a scary time.

Looking back, I should have taken a few weeks to get my head around things a bit, and to get over the relapse that had led to my diagnosis, before starting to

familiarise myself with all the available drugs and

treatments.

I wish someone had toldme that I didn’t have tomake any decisions

straight away.

Name: Niamh McCarron

From: Rathfarnham, Co. Dublin

[P11]

Name: Olivia Kirwan

From: Balbriggan, Co. Dublin

[P12]My name is Olivia. I'm 38. I am married with 3children. I got diagnosed with MS 9 years ago onHalloween. I had 1 child when I got diagnosed andwent on to have twins a year later too. I recentlyqualified as a Beauty Therapist, after completing ayear of full time study.

Just because I gotdiagnosed with MS

doesn't mean my life hasstopped. It hasn't. I justneed to be mindful whenmy body is flaring ortired. MS is a pain

(literally and figuratively)but it will not stop meliving a full life and

enjoying it.

[Diagnosed: 2010]

[Diagnosed: 2008]

Although this diagnosis has come as a shock toyou, you will get through it. Take your time and

weigh up all your treatment options.

Talk to your local MSbranch as they will haveplenty of information for you and your familyshould you need it.

The emotions you arefeeling are completelynormal. Don't be afraid totalk about them. We haveall been where you havebeen and come out theother side. You arestronger than you think.

Name: Karen O’Shea

From: Fermoy, Co. Cork

[P13]

[Diagnosed: 2007]

It’s normal to feel scared. I was and sometimes still am. To hear “You have MS” wasthe most terrifying thing I have ever heard andat 24, I thought it was the end of my life. In fact - it was the start of my new life. It tookme almost two years to realise this but sincethen, I haven’t looked back. I have even donesome things I wouldn’t have dreamed of pre-MS.

My two wonderful children keep me going from day to day. As afamily, we look at the positives of what I can do as opposed tofinding the things I can’t (of which there aren’t many anyway).My advice is to take the time you need to be afraid and come toterms with your diagnosis. Then, start planning your NEW LIFE.It’s not all bad, I’m doing great!!”

I joined the gym where I can be found 6 days a week. I enjoygoing to concerts and musicfestivals with my friends. And the BIG ONE- I tackled my fear ofheights by jumping out of aperfectly running plane at 10,000feet! I never thought I would beable to do any of those things with my diagnosis. In reality, itempowered me to do them andmore.

Name: Michelle Hanley

From: Kildorrery, Co. Cork

[P14]

[Diagnosed: 2015]

Write out a list of

questions for your

Neurologist before your first

appointment as it can be a

little overwhelming.

Just give yourself time

to adjust to your new

normals.Willeke Van Eeckhoute

From: Clonsilla, Co. Dublin

[P15]

[Diagnosed: 2005]

...Key Statistics

[P16]

On 2nd June 2016, M

S Ireland,

supported by Nova

rtis, launched

a set of practical e

mployment

resources to suppo

rt people with

MS and their emplo

yers.

Key statistics from

the MS and

Employment Repor

t...

9 out of 10 people with MS inIreland are of working age.

The rate of employment forpeople with MS in Ireland is 17% lower than the European average (43% compared with an EU average of 60%).

Life as you know it

might seem over right

now, but given time,

you will realise

that in fact,

life goes on.

[Diagnosed: 2010]

Name: Rafal Krok

From: Dundalk, Co. Louth

“Ar scáth a chéile a mhaireann na daoine,” is an Irish saying that translates literally as “People live in each other’s shadows.” Meaning, we are shielded from the sun by each other, we rely on each other for shelter. People need each other.

I am a separated mother of sixgrown-up children. At first, I was a bitshocked when I was told that I had MS.Believe it or not, MS gave me a life andsome great friends. I am the secretaryof the local MS branch which keeps me on my toes.

Name: Ronny Van Den Berg

From: Drogheda, Co. Louth

[P17]

I go to yoga, exercise classes

and aqua-fit to keep me moving. It's really important to keep going and stay

positive.

Here are some contacts I find useful:• The Multiple Sclerosis Society of Ireland is the only national organisation providinginformation, support, and advocacy services to the MS community. You can find details ofyour local and regional services and branches here. [www.ms-society.ie]

• The Citizens Information site provides advice on public services and entitlements inIreland [www.citizensinformation.ie/en]. Useful for social welfare, employment, housing, and taxation queries.

• At Shift.ms you can meet and connect with other people living with MS from all over theworld. [www.shift.ms]

• This is a comprehensive glossary of MS-related terms that you might find useful.[www.mssociety.org.uk/glossary]

• I found the sheer amount of information available on MS very overwhelming at diagnosis.Please only use trusted sources and if in doubt, contact your medical team.

“Ar scáth a chéile amhaireann na daoine,” is anIrish saying that translatesliterally as “People live ineach other’s shadows.”Meaning, we are shieldedfrom the sun by each other, we rely on each other for shelter.

People need each other.

Remember....

[Diagnosed: 2005]