Stage 2

[rachelr]

Hi I’m recently diagnosed with stage 2 MND - how many stages are there please?

[Ellie]

Hi Rachel,

There are 5 Stages - well, there's a 4a and a 4b, so that's 6 really..

Stage 2 means there are 2 regions involved in your ALS/MND.

Take care.

Love Ellie.

[Shaun]

Hello Ellie when you say regions do you mean body parts

[Ellie]

It's more regions than body parts Shaun. So Bulbar, Upper Limbs and Lower Limbs are 3 regions - Stage 1 is when one region is involved and so on.

[Shaun]

Thanks Ellie

[Ellie]

I found this slide which be useful:

5 Stages of ALS (2).png

And I know people will ask, so what's Stage 5? Stage 5 is, unfortunately, death.

[denise]

Can someone explain bulbar?

[Ellie]

If the Bulbar Region is involved in MND, that means swallowing, chewing, speech, jaw movements etc are usually affected to some degree.

The bulbar region itself is in the brain.

[matthew55]

I'm a classic Bulbar. My lower jaw has moved, my teeth are moving and I am practically mute. My swallow is working but I cannot eat solid foods anymore. Apart from that I'm very healthy. 😊x

[Nettie]

I’m almost the same as Matthew but have limited movement in left leg and seems to starting in left arm now x

[denise]

I thought that's what it was but wasn't sure. Thanks everyone.

[denise]

Just reading what parts of the body have been impacted on and add my husband which is mainly his hands and arms. His speech and swallowing a bit but not too bad. All of you it is different. It truly is a weird disease. Another thing that isnt mentioned is the tiredness. Stephen finds not being able to use his hands so upsetting but the tiredness seems to be the biggest gripe. I suppose that must come from stage 1? Do i take it that the tiredness comes from the brain? Another thing would you say that tiredness would also cause problems with thinking, problem solving? Sometimes I feel im having conversations with him but im not sure he comprehends what I'm saying. I've always thought dementia was involved but I just don't know what is going on.

[matthew55]

What I get is not tiredness it's just a lack of energy. This is a classic symptom sadly. A walk to the shops now takes 30 rather than 10 minutes and when I get back I have to sit down for an hour. Happy Days 😊x

[Barry52]

Just reading what parts of the body have been impacted on and add my husband which is mainly his hands. Another thing would you say that tiredness would also cause problems with thinking, problem solving? Sometimes I feel im having conversations with him but im not sure he comprehends what I'm saying.

Hi Denise,

Cognitive impairment is quite common in pwmnd. Don’t assume it’s dementia unless the diagnosis also includes frontotemporal.

Best wishes,
Barry

[denise]

Thanks for that. How do they do a frontotemporal diagnosis? When I asked about dementia he was sent for blood tests to show if it was hereditary but we haven't had results yet.