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I use cotton buds with my husband, it works well.

So sorry to hear of your loss. You were amazing with mum, may you find peace.

Hi Karl
Your OT would be the best person to organise this for you, or your District Nurse.

Hello I have taken my husband to the following places, he really enjoyed the scenery, and said the accommodations were lovely.
Norfolk Friendly Disabled Cottages and Brickhouse Farm.

Hi Tania
Sorry to hear mum has been in hospital. I hope things have settled.
Regarding carers giving medication, you really need to ask for a review on mum’s package of care.
Mum needs a complex...

Hi Nightowl2016, everyone has been so amazing, giving advice. I don’t think there is anything more I can say. I have been there, and know exactly how you must be feeling. I don’t come on the forum...

That is really good news. Getting out and about is so important, and knowing you have places you can stop at, to freshen up, will help many more people to plan more trips. Good luck

Hi Terry, I’m glad you found the link useful.

Hi Sasha
My husband wanted to maintain dignity and our OT put a order in for a closomat toilet, it washes and drys you.
Your dads OT can provide utensils or show him magazines on different things...

Hi Chris
It sounds like your OT needs to come out and review you again. There are many options out there. If your not getting much help, ask your MND Nurse to refer you to the OT.

I agree with...

We have been to Brickhousr Farm, amazing place, it has everything you could ever need. They also have a hydro pool now.

Hi Roy, it’s my husband who has MND, we contacted our continence team and they gave us different ideas, what we could do. My husband is also in his wheelchair full time, we now have a delivery of...

Hi Terry
Thank you for your reply.

I’ve told my hubby, we will work on getting one, IV elooked in line.
My hubby uses a Oxford 180 hoist, so will try and get a similar floor hoist. 😊

Thank you Ellie. I will make contact with our OT.
Distance can affect how long my hubby can stay out, as he becomes uncomfortable in his chair.

We will need to use...

Does anyone know how we can get a portable hoist??
Secondhand or purchase??
Thank you

My husband celebrated his 54th birthday on the 8th March. �� �� ��
We had a lovely day, it’s hard to buy presents, so not many brought, but spend a lot of time creating memories ��❣️

Hi sorry to hear about your dad, I receive carers allowance for my husband, as I am the prim carer, which you will be. We also have carers every day. You are also right this be deducted from his...

Hi wife of Jim �� I miss my husbands voice, I struggle sometimes to remember how he use to sound, he hasn’t spoken in over 4 years.
His Tobii eye gazer helps to give us a glimpse of his sense of...

Hi kateyloo42, sorry to hear about your mum, have you spoken to her speach therapist about getting her a speaking aid, there are so many out there. That is if your mum
Wishes to use one.

Thank you all for your replies to my message. It so comforting to know we are not alone. Just to have people who understand.

Is there anyone who has had Progressive Bulbar palsy for more than 6 years.
It would be nice to speak with you. My husband has been living with this
He uses a eye gazer to communicate

Thank you CC
It has been encouraging to hear from
People who understand
:)

:)

Thank you Barry, I have read post on and off over the years, but was never able to share our story
My husband uses a eye gazer, which can be time consuming at times, would love him to be able to...

Thank you to everyone who replied to my post.
It wasn’t easy for me to post.
Many people may not understand why I mentioned God
Whilst dealing with something that’s so cruel
There wasn’t anyone...