Hi everyone

[Laticsmon]

Hi

My name is Daniel and I’m 39 from Wigan. I was diagnosed with motor neurone disease on 1st December.

It wasn’t a total shock as my neurologist was raising the possibility of it being MND.

Obviously this has had profound effect on everything in my life and I’m really scared about the future. I have been prescribed Riluzole and it makes me really tired. I have read on her about vitamins and they do seem to perk me up a little.

I have a wife and 2 daughters who are 3 and 9. I worry that I won’t see them grow up and that they will see me slowly deteriorate and that they will be ashamed of me.

Has anybody else had counselling or anything because I really don’t want to be prescribed anything.

I’m planning on returning to work soon so hopefully that will help but I’m very up and down.

[GaryM]

Hi Daniel, welcome to the forum and sorry to hear your diagnosis. I started Riluzole in September and found it made me feel very tired, so I took it upon myself to reduce the dose to one tablet per day. This made quite a difference. I might increase back to two per day at some point. You could try that. With two young children you need all the energy you can get.

[SueM]

Hi Daniel, I’m fairly new to the forum as well, it’s a good place to come for support and advice. I started on Riluzole 2 weeks ago, similarly it has made me feel very tired, my consultant suggested just sticking with it as quite often it’s just the initial response.
I’ve asked to see the Psychologist who is part of the multidisciplinary team, not sure how long I’ll have to wait for this. I felt it would be good to talk it through with someone other than my husband or family.
I completely understand why you are ‘up and down’, I try to put a positive spin on things but it’s very hard to do that sometimes. An occasional good cry seems to help.
Take care and keep healthy!
Love Sue

[Ellie]

Hi Daniel and a warm welcome to the Forum.

Yes, I had counselling and thought it very beneficial, including how to cope with telling my children, who were 3 and 5 at the time.

I didn't want my kids being afraid of me or my various bits of equipment, so I found the best way was to involve them in 'helping mummy' and to normalise my situation, which evolved as I progressed. All I can say is that they were eager to show their friends how they gave me meds, food and drinks into my tummy (feeding tube), have wheelchair races and water fights with old syringes.

Children are usually more logical, rational and accepting than adults - as long as they know they're safe and loved, the rest is pretty mundane.

My kids are teens now and bring friends home, much to my delight. We do try to be a normal family, although clearly we have to contend with much that most families never have to...

I wish you all the best.

Love Ellie.

Oh, that Riluzole tiredness side effect should lessen with time.

[Shaun]

Hello Daniel and welcome
I don’t have young children, but they won’t be ashamed, I think they are young enough to accept it, and I would take Ellie’ advice and seek help on the best way to explain it to them, it would be better for them and you. Mnda do offer advice on this and I’m sure your GP/ consultant may be able to refer you somewhere
As you are still early in diagnosis it’s bloody rough, lots of ups and downs, it does get easier i promise. Acceptance takes a bit of time but you will get there.
I found work a good distraction, a bit of normality and you can forget it for while
shaun

[Barry52]

Hello and welcome Daniel.

You mentioned counselling and I would suggest you ask your consultant if you can access Commend which is a recent therapy for newly diagnosed people and it is available in many areas of the country.

Best wishes,
Barry

[Lynne K]

Hi Daniel, I’m sorry that you’ve had to join us on this horrid journey. I hope that your talking to your children turns out to be easier than you expect. The MND Association has good booklets about MND for young children’s guided reading or for an adult to read to them. I got a couple for my grandchildren. Lynne

[matthew55]

You're born, you live and you die. Simple 🙂

[richard]

Hi Daniel

You are amongst friends here. You can ask what you like, say what you like and shout as much as you like. There will always be someone with an answer and advice or words of support. Welcome to this horrible but lovely club

Richard

[denise]

Hi Daniel
we are all here for you.
love and hugs Denise xxx

[nunhead_man]

Good afternoon Daniel,

Welcome to this place where none of us wants to be.

I'm sorry to see somebody so young stricken in the way you described but do ask the MNDA for the help they give to people with young families.

See https://www.mndassociation.org/suppo...-young-people/

And don't hesitate to come here in your darkest moments – we've all been there!

[Laticsmon]

Hi

thank you everyone.

Has anybody got really dizzy with Riluzole as I woke up this morning and the world was spinning. I thought for one dreadful moment I had 3 wives. Only joking.

[matthew55]

Well when I took it I had no side effects. But then we are all different 🙂

[Shaun]

No problems for me, I think that it will ease as you get used to them

[Ellie]

Has anybody got really dizzy with Riluzole as I woke up this morning and the world was spinning.

Yes, that's a common side effect - no need to drink 10 pints to feel the room spin any more 😃

As Shaun says, side effects usually lessen with time, just don't go driving or knife throwing after taking a tablet.