Newly diagnosed

[Mike26]

My name is Michael Lister and I live in Alcester. I am 77 here’s old and have been very active all my life. During the last 12 months my left arm and hand have gradually stopped working.Have undergone numerous tests but because of the long delay because of Covid 19 was only diagnosed last week. Have had lots of literature given to me which I am finding a bit overwhelming. Am keen to learn about the support I should be getting. Hey Ho I shall be keeping very positive throughout this journey.

[podgeuk]

Hi Mike26,
Welcome to the forum.
I like you was having problems, although with my leg, and only recently diagnosed with MND. Continue to think positive have a good look at this forum and as I found there a lot of people who will try and help you. It is mind blowing I know but let’s all be positive.
Regards,
Steve

[Ellie]

Welcome Mike, sorry you've had to join us.

Yes it is overwhelming at first and daunting, scary, unimaginable, and lots of other adjectives to boot!! Best to approach the reading material in bite-sized pieces, which is more manageable.

As to support, it' can depend on where you live but you can expect to have initial community support from an MND Nurse, an OT (Occupational Therapist), Physiotherapist and Community Nurse - other disciplines such as Dietitian, Speech Therapist etc are often late on.

Many of us also are linked with the local hospice for extra, and often better, support. And your MND Clinic is a one-stop-shop for your needs, although it doesn't replace community support.

Please feel free to ask any questions!

Take care.

Love Ellie.

[miranda]

Welcome Mike. There’sa lot to take in after diagnosis but do take it slowly or you will be overwhelmed, as you have already discovered. Please ask us any questions, usually someone here will have an answer probably based on our own experience but bear in mind that we all progress differently. The MNDA have a fantastic range of helpful information.

[DeeH]

Hi Mike

My husband was just diagnosed in July and we are getting our first visit from the MND nurse on Friday, to start the process of benefits etc as husband is 56. The Occupational therapist and physio came out last week regarding some aids and will return tomorrow, hopefully with a swivel bath thing which will allow husband to shower safely.

Having supported my parents through long term conditions, a positive attitude and taking one day at a time helps.

Also having someone to talk to helps.

Do you have family or friends who are sensible who can read the literature and give you a brief summary?

Everyone is different and unique in their journey

All the best

Donna

[Shaun]

Hello Mike and welcome
the initial wave of literature is quite daunting and some what scary, take your time don’t read it all once.
the level of support will be gauged by your illness, hopefully your consultant will have given limited prognosis, because we are all different it may appear quite loose or very scary. If it’s a fast progression wheels will be set in motion behind the scenes and you will start to get contacted, if it’s a slow burner , like me , you may feel ignored a bit, but if you are coping they won’t interfere, I only see a physio once a month and consultant every 6 months , but I have phone numbers I can call if I’m worried or something stops working.
A lot will depend on your health authority, don’t be afraid if the subject of your local hospice is raised, they offer all the help you will need from physio to OH , ours also offer pamper days for careers
Take your time
s.

[Barry52]

Hello Michael and welcome to our exclusive club. I try to be positive and that helps but we have bad days and if we want to have a moan or a rant then someone here will listen and help you through it. The system should help you with the practical issues but you won’t find a better place than this forum for emotional support.

Best wishes,
Barry

[Doug Carpenter]

Hi Mike

Welcome to our gang!

I'm of a similar age. My MND started in my legs and is slowly spreading upwards.

Yes, you may feel overwhelmed by information at the moment. Concentrate on the stuff that may help in prectical ways immeditately.

Later on, do give some thought to banking your voice before it deteriorates as it's likely to.

Your positive attitude will be a huge help.

All the best

Doug

[Jer788]

Hi Mike and welcome to the club nobody wants to join. There are some great individuals on here who have come across most of what this disease has to offer so don’t be shy.
Best wishes Jerry

[Mike26]

Thank you all for your welcome and advice. It is really nice to have friends out there. Will keep a regular eye on this forum. Still waiting for contact from the 2nd opinion Neurologist.

[matthew55]

Hi Mike, we sad few are the Covoid MNDers. Staying positive is the only logical choice. Stay Strong Matthew

[Lynne K]

Hi Mike, welcome and sorry for my last response. It’s good that you are planning to stay positive. I hope that all of your local services are set up quickly for you. Lynne