I’m new to all this

[Susy H]

So this is my first post in the Forum but I can see already how helpful this group will be.

i am 54 years old and was diagnosed 4 weeks ago (affected on legs arms and balance currently). I have always been a really sporty outdoor person but started suffering weakness in legs around March. I have had a herniated disk in neck 6 years ago so initially thought this was another Neuro thing that would settle down after a few months. However, no pain made this different. Went on futile virtual sessions with physio during lockdown then chiropractor after lockdown lifted. Still not right so got a neurologist consultation in July . Initially I was so pleased nothing came up on MRI scans but now I wish they had found something else! nerve conduction studies were the confirmation of MND which I had started to suspect by then.

So life is now totally realigned - I’m still crying many times a day but maybe the episodes are getting shorter? My family have been great - husband now taking early retirement, son just got engaged (have to make it to wedding next August 🤞) and loving spending more quality time with my beautiful daughter.

i know there are tough times ahead and I see how brave many of you are that gives me courage to face the future too.

So many thanks in advance for your help xx

[denise]

Hi Suzy
nice to meet you. My husband was diagnosed last year and it's been quite a challenge. There are lovely people on here and we talk about all kinds of things so they will make you very welcome.
lots of hugs to you and your family.
Denise xxxxx

[denise]

I did type susy but my phoned changed the spelling.
🙄

[matthew55]

Welcome Susy, you have come to the right place. I just wish you didn't have any reason for being here. Stay Strong 😊x Matthew

[Shaun]

Hello Susy and welcome
It is a difficult thing to come to terms with and it will become easier I promise, acceptance is the first stage and posting so early is a good sign, keep positive and go at your pace, it’s your illness try not to let it control you, after all you have a wedding to plan first
Shaun

[Barry52]

Hello and welcome Susy to our band of warriors and their loved ones.

You have shown your bravery by posting here so soon after your diagnosis and our fellow members will help you on this new journey by offering support and advice. I trust you have been offered a support team to help you manage the symptoms although I accept that you are early stage. Please feel free to ask any questions no matter how silly they may sound because you will find the answer here on this forum.

Best wishes,
Barry

[Ellie]

Welcome Susy!

The crying is normal, don't beat yourself up about it, you are so new to all of this... Many people find taking an antidepressant helps and there is also something called Emotional Lability - basically it's exaggerated emotions - which can be be tempered with antidepressants.

Glad you have good family support and the wedding is a good distraction, as well as a goal for you.

Take care.

Love Ellie.

[Jer788]

Hi Susy, welcome to the club nobody wants to join. Lots of lovely people on here. Do what you can while you have the energy. Ellie’s right about anti depressants speak to your doctor.
Best wishes Jerry x

[GaryM]

Hi Susy,

Welcome to the forum. I've only been a member for a few weeks, but the people are very friendly and helpful. Sometimes you'll get a different perspective from people who have the illness or care for someone with it than you will from a healthcare professional.

[Deb]

Hi Susy and a warm welcome to the forum,

I am so sorry for your diagnosis...its such a shock and it's very early days for you. It's not surprising you feel overwhelmed and emotional. It sounds like you have support from a very loving family, which is such a help and I hope you have advice from professionals too.

I was diagnosed at a similar age to you nearly three years ago. It was nine months before my son's wedding and I was worried about how I'd be but it was a wonderful day. Although I'm sure we all have dark days life does go on and there are still good times to be had.

The forum is a good place for friendship and support from people who really understand.
Take Care of yourself,
Love Debbie x

[Susy H]

Thanks to you all for your kind words. I know this group will be a great comfort and source of advice for me.
i hope I can also help others too. Whilst I am still learning about the “joys” of MND I do know a lot about clinical trials and drug development having worked in this field for 25 years (obviously not MND). I was shocked at the lack of options for MND patients given how much progress has been made in oncology that has helped patients. I will watch the clinical trials with interest (mostly inUS unfortunately for us UK patients). I hope to enrol on MND Smart in the next few weeks too 🤞🤞 as its opening at Salford Royal then.

[GaryM]

I hadn't heard of the SMART trial until you mentioned it, Susy. As I'm under Salford, I'll look into it.

[Shaun]

Hello Suzy, MND is quite low on the importance list of conditions unfortunately, because we are all different, there’s no real one fix all remedy option. Smart may be our only viable option as the drugs are already available.

[matthew55]

Just how many of us are under Salford? We should get together in person one day. 😊x

[Nettie]

I am under Salford x