Hi everyone I’m Wayne 38

[House44]

Hi all I got diognosed yesterday 14th June 2020. I’m 38 years old and at the moment my hand has stopped working and I feel a little weaker than I did a year ago. Symptoms started in November when I couldn’t grip my golf club. Being a keen golfer playing off 4 it was more annoying than anything else.
I’ve woke up today struggling to swallow and the dangling thing at the back of my throat feels like I’m swallowing it. Probably a sore throat but as I’m new to all this I’m going to think everything that happens to me is MND.

I have 2 beautiful children and a beautiful wife and maximus the beagle who love me lots and I’m more gutted for them having to see me go through this.
Hope everyone is ok today and I send my best wishes for you all
Wayne x

[bilvers]

All the best wishes from a fellow golfer. I have bulbar onset which is speech and swallowing at the moment. You now have many of us on here to support, advise, etc. The MNDA are fantastic so walk every round for support. Ellie on here is well experienced and will be a font on knowledge. Chin up, you have family around you and friends around you there and here.

[Lynne K]

Hi Wayne, welcome to our friendly helpful forums. I’m very sorry to hear that you’ve had to join us at the young age of 38. I’m 66 in August, getting my 6 years delayed pension then. About time too.

I hope that you will get all of the services for you up and running quickly. These are OT, Physio, Speech Therapist and likely a dietitian (maybe the dietician at your clinic appointments). Also wheelchair services if appropriate for you. If you feel up to it when your Speech Therapist contacts you it’d be a good idea to ask about speech banking. There’s been lots of discussion on forums about this topic so if you fancy reading up to get familiar with what may be available and what it all means you could put ‘speech banking’ in the search forum posts box and plenty will come up.

I hope that I’m not overloading you, but have you thought yet about applying for PIP and ESA if it’s become impossible for you to work?

It may not be hard as you think on your little ones. Children tend to be very accepting. But you can get age appropriate books for your children from MNDA. These tell stories about families with an MND sufferer in and teach them about many of the gadgets that we will use. I got a couple for my grandchildren. My daughter was very pleased with them.

If there’s anything that you want to ask or to say, then feel free. Somebody will reply with helpful ideas and/or offer support. There’s nothing better than talking things over with fellow suffers and carers.

Your wife will need support. Our loved ones do a lot for us and tend to keep their distress hidden. It never does anybody any good to keep things bottled up. I hope that she has close family and friends to talk with and offload now and again.

Chat soon, Love Lynne

[Ellie]

Hi Wayne and a warm welcome to the Forum.

Sorry you’ve had to join us. You must be all over the place at the moment and it does take time to get your head around the diagnosis, so give yourself time and be kind to yourself!

My story echoes yours – I was diagnosed 3 weeks after my 38^th birthday when my kids were 3 & 5, a husband and a dog, and my ALS/MND also started off in my hand - so I can identify with how you feel.

Try to stay positive and healthy - don’t lose weight. MND is a hungry disease, feed it!

Did the Neurologist discuss any clinical trials with you?

Take care.

Love Ellie.

[Shaun]

Hello Wayne and welcome
Started in my hand and as keen golfer as well (not to your level) not being able to grip is bloody annoying but I Keep going out, so don't stop, on the course I can almost forget about it for a few hours, I don't bother scoring now and mulligans used a lot, enjoy the sport
Shaun

[Hayls]

Hiya Wayne,
I’ll be 38 years old 1 month today, I was informed 1 year ago tomorrow that I had MND, I felt relieved that finally I knew why I was feeling crazy and loosing my strength but then I cried for everyone who loves me and my heart broke for them but 1 year on, the one thing I’ve learnt is nothing is set in stone and make as many memories as you can

[House44]

Hi all thank you all so much for making me so welcome. I’ve applied for the money side of it via my wife as I haven’t got a clue. My doctor did talk about a few trials and that I’d be asked to join as the disease is so rare and I’m at a good age. I had to go to Oxford for a 2nd opinion as my Birmingham neurologist said he thinks I’ve got mnd. I can’t tell my kids I think that’s why I went to Oxford. I haven’t really read to much into it as I’m not sure I want to know everything yet but my partner said there’s a few good trials out there that look hopeful. I’ve now become probably a 14 handicap in golf and it really annoys me. My club won’t re asses my handicap so I feel like I don’t want to play anymore. I’ve took up fishing for now so I can have a good think about my next steps. I work on the railways and just been told we might be getting made redundant too. Not sure 2020 could get any worse. One thing I have realised is money means nothing and family means everything. Thank you all again for being so nice ��

[House44]

Hi Ellie how are you now and how long have you had it ? Can you tell me a bit more about your story if that’s ok. If not no worries
Best wishes
Wayne x

[matthew55]

Hi Wayne, if you have been paying into a job pension you can get your money back. I did it and it's helped keep me here if nothing else. Be Strong one day at a time. ��x

[Barry52]

Hello Wayne and welcome to the place no one wants to find themselves but you will get lots of advice and support from our forum family. Like you I was a golfer but never got beyond 16 and my first passion was fishing. The latter can be adapted for a disability and I have used my wheelchair to good effect. I can still walk with a rollator and I drive so as soon as I am released from lockdown I will be off fishing.
You mentioned your children so you may want to look on the MNDA website as they have good advice for young people who want to understand the disease. Children are very perceptive and it will always be better explained by you and your wife than second hand gossip in the playground. I realise that it is early in diagnosis but something to think about.

Best wishes,
Barry

[Ellie]

Hi Wayne,

There is no Right Way or Wrong Way to live with MND, there is just Your Way Everyone copes differently. Everyone has different circumstances.

This is my story: I’m well into my 14^th year living with ALS and definitely had my ups & downs but overall, as with any situation, life’s what you make of it (and I’m not being sanctimonious in saying that…) I had counselling which helped me enormously and I wasn’t the ‘bare all’ type but needs must…

I have great family support and great carers, which helps enormously, as does looking after my health, having a positive attitude, good outlook on life, a sense of humour, and a fair bit of luck!

Less than a year after diagnosis I was in a wheelchair, had a feeding tube and struggled to type, cut up food etc. and soon was totally dependent on others but I kept my weight up, avoided infections and kept on going. When I lost abilities, I was determined to Adapt & Conquer so I could get on with life - wasn’t always pretty nor easy but that’s how I want to be.

I also want to know everything about my disease, my symptoms, my meds, my equipment, my prognosis and so on, so I ask questions, read and research but again, not everyone does, and there is nothing wrong with that.

We involved the kids in everything from the start to demystify and normalise what was happening to me - they are more resilient than us adults and are rational too. If they think things are being hidden from them, their minds can conjure up all types of scenarios.

BUT, you need time to get your head around your diagnosis before you do much else.

All the best.

Love Ellie.

[Tess]

Hi Wayne, my partner is also in his 30's (just turned 33)...it's just mad the whole thing. You don't want to look too far ahead but then you need to at times and it's super depressing and so we try and blast the looking ahead when we need to organise the practical things and then leave it for as long as we can so we're not constantly talking about it - mind you sometimes unavoidable living with it 24/7.

It's a constant adaptation, one week you follow a certain routine the next week it could be a new one due to changes or through learning what works best for you to make things easier.

We had a genetics appointment recently and I can imagine the studies themselves to be fascinating whether something has run in the family generations back or if it's unrelated what's so ever. You should definitely get the UK petition signed for Nurown in the UK. A drug that I saw was trialed and saw amazing affects in the U.S.... the last I saw the petition had to get 100,000 signitures before September this year... In order to be discussed at parliment.

Anyways (always so much to say, so I'll stop for now). I hope you've got all the support around you and this forum has been great.

Tess x

[Deb]

Hello Wayne and welcome to the forum from me.

I am so sorry for your diagnosis.. You must feel very shocked. The early days are so overwhelming and I found it hard to absorb all the advice from professionals. Well done for posting on the forum so soon after your diagnosis because its a good place for friendship, support and advice. People on here really understand.

Take care and be kind to yourself in these early days,
Love Debbie x