Progression of MND

[Moll]

Hello, my Dad was diagnosed at the end of last year. He started with foot drop, and a weak voice. His voice is getting weaker, with slurring and some gasping during sentences. He is generally exhausted, with difficulty walking. I’m worried and scared about the relatively quick progression.

[Kayleigh]

Hello Moll,

Sorry to hear of your dad's diagnosis.

It is difficult to make accurate predictions about progression because everyone's
rate of progression is different, and it can sometimes slow down for a while.

There is a lot to come to terms with, but there is also much that can be done to improve the quality of life of a person with MND. Your dad should receive ongoing support from a team of NHS healthcare professionals, including a physiotherapist, occupational therapist, dietitian, and speech therapist - although sometimes it can take a while for the initial appointments to come through.

Please feel welcome to ask any questions. We are a forum of friendly folk and we try to support each other as much as we can.

Best wishes to you and your dad,
Kayleigh x

[Barry52]

Hi Moll,

Sorry to hear about your dad and I’m sure you are all still trying to come to terms with this. As Kayleigh says make sure he has a good support team set up because they can make dealing with the symptoms easier. MNDA connect can help with pointing you in the right direction for things like claiming benefits because the health professionals tend to ignore this side of improving the quality of life for people living with MND.

We are just a message away from offering support and advice so please don’t be shy to ask.

Best wishes,
Barry

[shrew]

Welcome Moll, sorry to hear of your Dad's diagnosis. My Husband was diagnosed last July, I know that it is difficult. People on here are very helpful with any questions or advice

[Olivia H]

Hello Moll
Sorry to hear of your father's diagnosis and it can be overwhelming, but there is lots of advice and support here. Mnd can seem to move very rapidly, but can also then slow down. Like your dad, I rapidly developed footdrop and weakness/tiredness, but then things slowed significantly and that was now nearly 7 years ago, so there can be some hope, sometimes. I think we have to have hope.
Best wishes to all your family
Olivia

[Moll]

Thank you for all your replies! It’s hard isn’t it knowing that everyone has a different progression...the unknown can be frightening and frustrating. But yes, Olivia, hope is good ��

[Ellie]

Hi Moll,

Welcome to the Forum and sorry about your Dad.

Just to add that, if he hasn't seen a Speech & Language Therapist (SLT) or had a Respiratory assessment yet, they should be on his radar.

I hope he gets a break in his rate of progression.

Love Ellie.

[Lynne K]

Hi Mill, sorry about your dad's developing symptoms. You have had good advice already so I won't repeat. Take care, Lynne

[Music man's wife]

Hello Moll, the MND diagnosis is really hard to come to terms with. My husband was diagnosed last May, he deteriorated so rapidly I was really scared. However things have settled down and we make the best of each day. This forum is great for help and advice.

[Sheila]

Hi Olivia, that was such a hopefully reply. I was recently diagnosed with mnd. And your reply has helped me focus on being more positive

thank you, take care

Sheila

[Guest]

hi moll, its the luck of the draw, how slow/quick the disease takes hold, my wife was diagnosed last july, hers was rapid and she passed on jan 14th this year, either way I wished i'd never heard of mnd, the sooner they find a cure the better for all, just take one day at a time. dave.

[Moll]

David I’m so sorry to hear about your wife.

[Kayleigh]

Hello David,

I think of you often, and I hope you are OK. Although I never had the pleasure of meeting you or your beloved wife Sue, I feel that I got to know you both a little, from reading your posts on this forum.

I always feel very sad when I find out that someone in this forum family has passed away. It hit me particularly hard when I read, in January, that Sue had sadly passed away, especially as it was so soon after her diagnosis. It made me realise how quickly MND can snatch us away. My loved ones make sure they spend as much time as possible with me, just as you did with Sue.

You always cared for Sue so lovingly and attentively, and you must miss her terribly. I hope you are getting lots of support from family and friends.

Thinking of you,
Kayleigh xx