New

[Barry52]

Hi JoJo,

I agree with Lynne and we often leave it too late to move onto the next piece of equipment to make us safer. If the OT won’t offer a 4 wheel walker you can buy a good one for around £100 or ask for a grant from MNDA.

Best wishes,
Barry

[Gillette]

Hi all, my partner has had his first fall today. Absolutely heartbreaking. He’s using crutches but he’s finding it hard to lift his right leg as his foot folds under and trips him up. First OT appointment on the 18th Dec. He was only diagnosed in October it seems to be rapidly disabling him. Does this usually mean he will loose use of his arms then his breathing this is so scary.

Hi Jojo,

One of the things that make MND so hard to cope with is that there is no “usual “. Everybody’s MND journey is different, which is why it’s so hard to anticipate what is likely to happen next, and when. The best you can do is react to changes sooner rather than later, including asking for help. Try to get a picture of what each healthcare professional’s role is, it will help you to know who is the best person to ask for help.

[Jo jo]

Thankyou everyone I have managed to find one on Facebook as new 40 pounds so I’m collecting it later. You are all such lovely helpful people especially when I have no one else to ask. He could have caused himself a nasty injury. Luckily just bruised his chest. People must hurt themselves with falls. I’m only 4ft 11 so couldn’t lift him up. Luckily people came to help him up as it seemed to take his energy. Thanks again to you all xx

[Ellie]

Can you post a pic of it Jo Jo before you spend your 40 quid??

[Jo jo]

How do I add a photo

[Jo jo]

It has 4 wheels, brakes and a storage seat

[Ellie]

See the row of icons, the click on the square one, choose file and upload pic.

If you can't Jo Jo, don't stress yourself out over it!!

It sounds fine.

Love Ellie.

[Doug Carpenter]

Foot drop

Hi Jo jo

My MND started with foot drop. I was given an Orliman Boxia orthotic:

https://www.orliman.com/en/product/c...t-ankle-brace/

It’s still a very helpful piece of safety equipment to use with a walker as well as crutches.

Doug

[Jo jo]

That looks like something that would really help Doug Thankyou

[Lynne K]

I've got two of those braces, one that was given to me by the NHS and one that I bought. I didn't use them much because the right one hurt my arthritic ankle. They are great though if you don't have sore ankles already. Lynne

[Jude11]

Hi Jo
Get one asap as mine took 6 months to be fitted and by then couldn't walk anyway so no good.

Good luck
Judy x

[Streetwise]

if you know your husbands profession find out if the charity connected to it can help you, if they can ask them for equipment ,advice on other areas we got a lot of help from our charity instead of waiting for the nhs or social !services! or neighbours!glad you get support here, i had none just left to struggle ,had none since , I check in here once in a blue moon for reasons .

[Jo jo]

My partner has started to have a groof voice is this part of his MND he also says he has a tickley cough. I hate MND.

[Barry52]

Hi Jo Jo,

It is quite common with MND to experience speech problems. I find that because one of the symptoms is over production of saliva and mucus that clearing my throat is a constant issue. There are medications to dry up saliva but this can lead to other problems. I find pineapple juice clears mucus which is often worse in the morning. Has your partner considered voice banking?

Best wishes,
Barry

[Jo jo]

How does he bank his voice