Introducing myself

[Mark 1964]

Hi Everyone, Mark 56 years old from Northampton (not too much to shout about) .My first time on a forum and I’m not to sure how it works, is that a good starting point? Looking back I had symptoms since about October 2018, diagnosed 27th March 2020 I was always active and never really ill. After many visits to doctors, physio, specialist about back pains, weakness in left leg, tripping up, finally referred to neurologist where it took 2 days to diagnose just a the start of the first lockdown kicked in. I knew that there was something wrong but not MND. I had already been laid off in January 2020 and have been off work a year now. In addition It didn’t help not being able to go out which at times is very depressing.
As for where I am currently ,I’m now reduced to using a Walker to get around the house, legs are very weak and so is my left arm.As I’m sure many can relate I’m still trying to do as much as possible myself but its starting to take ages to do the basics. Emotions are all over the place sometimes,tryng to sort out the future, and the uncertainty and making the right decisions going forward

[GaryM]

Welcome Mark. It takes a lot to make that first post, especially for people who don't normally do such things, so well done. It is overwhelming at first but it gets easier to deal with over time. Lots of helpful people here and an occasional bit of fun.

[Bowler]

Hello Mark. Many many years ago I went camping and fishing at Billing Aquadrome. So nowt wrong with Northampton.

[Barry52]

Hello and welcome Mark.

In time you will accept MND for what it is and then you can start to prepare for how you want to get out of life. We are here to offer moral support and advice when you ask. I have walkers dotted around the house but my most valuable aid is the braked trolley I got from the Red Cross. As Bowler says, “nothing wrong with Northampton” and the MNDA is based in the town.
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[Lynne K]

Hi Mark and welcome to forums. It is certain very difficult in the beginning but your confidence to post on this forum is a smashing decision. Many of us on here can relate to you about your previous health and activeness. You were, if you don’t mind me saying, lucky to get a swift diagnosis. You hear some dreadful stories about people having years until they finally receive a diagnosis.

I hope that you have good services looking after you and also families with friends around. But this lockdown is making it difficult all around.

Take care, Lynne

[Mary C]

Hi Mark I was diagnosed June 2020 and last worked as a hospital social worker Jan 2020.I was lucky as after diagnosis i got referred to the local hospice and although I nearly had a fit as I thought my end must be imminent they explained they just wanted to meet with me and get a baseline assessment of my needs,
I started doing practical stuff like getting a blue badge, sorting benefit entitlement, checking my lasting power of attorney was registered.I got linked to local MND association for any information I wanted on MND.After that came the hospice Occupational therapist to look at anything like grab rails to make living at home easier.The physio came out and sorted walking aids and ankle supports.It was confusing time but we got a little book and recorded all names and numbers of professionals should we need to contact them as things progress.Whilst I was well used to what these professionals roles were it was a learning curve for my husband too.I can only say we feel very well supported and the hospice keep in touch fortnightly so if I have any changes they can quickl refer me to the correct professional.In addition i see the neurologist and respiratory consultants every 3-4 months and they provided mobile numbers if I have any concernsbefore the next appointments.There is a wealth of information on here from People living the best they can with MND and so hope you get the support you need right now.Do it at your own pace. Best wishes Mary

[jd58]

Welcome to community forum Mark

[Shaun]

Hello mark and welcome
how does it work you asked , however you want it to
we are a mixed bunch of people here, different problems and stages, use the forum for what ever you want, ask for help or advice, have a moan , have a laugh, just read it’s up to you
just know you are not alone
s

[Ellie]

Welcome to the Forum family, Mark, and congrats on making your first post - it's nerve wracking at first but you'll soon see that we're just an ordinary bunch of people!

You've had a tough year in a tough world, so hopefully your emotions will level off as life around you gradually returns to normal, allowing more structured support and care for you.

Look after yourself.

Love Ellie.

[Deb]

Hi Mark and a warm welcome to the forum from me.

The diagnosis is totally overwhelming and such a shock. It must be even more difficult at the moment when you can't meet friends or family or even have a trip out. I hope you are getting professional support even if its being done remotely.

Its great you've posted on the forum as its the right place for friendship and advice from people who really understand.

Take Care,
Love Debbie x

[SueM]

Hi Mark, welcome to he forum. Like you I had obvious symptoms from October 2018 but not diagnosed until last September. I have finally got a video call with the Neuropsychologist next month, probably like you I need to make sense of it all and get my head around it.
The forum is a really good place for advice and support, lots of folk that have been where you are.
Best wishes
Sue

[richard]

Mark welcome to the group no one wanted to join. Here you can ask whatever questions you want, shout, scream, cry and laugh. We have all done it. You will get all the help you need here.

Take care and keep smiling

Richard

[matthew55]

Hello Mark, life is a roundabout and no one knows where it stops. Luckily you have found the swings by coming on here. Brothers and Sisters we face this together. Welcome. Matthew 😁x

[denise]

Hi Mark
I'm glad you have found this form. I hope you find lots of advice and friends here.
Denise xx

[Mark 1964]

Hi Everyone
Thank you all for your messages of support, fantastic that’s there’s people to talk about MND
Mark