Hi, I’m New & Nervous 😬

[Sally5672]

Hi All,

it’s my first post and I’m still shocked & stunned by my mums diagnosis of bulbar MND…
My mum started slurring in Dec 2020 but didn’t get a full diagnosis until May 2022.. From posts I’ve read, I think she’s still being as stubborn as ever.! & good for her 🥰🤩
I’m nervous about doing enough, or too much. My mum is very much a “northern lass”, strong, independent & wicked sense of humour, so as her daughter, I never want that taken away but, it’s my mum and I want to take care of her.!

I would like the advice & guidance from anyone on what is best & how to find the balance, from my natural instinct to want to take care of my mum but, also let her do her own thing..

Background: My mum STARTED with slurred speech in Dec 2020 (told long covid, then MRI, then nothing, then told to go to speech therapy as it was psychological) Diagnosed May 2022, now mute, fully peg fed along with medication. Lots of neck pain, NIV but refuses for as long as possible not to use NIV. However, still has the luxury (I know that a lot of people don’t) walking but, as you can all imagine, struggles with breathing, slow and then cannot get up from the toilet or chair if she does too much..
my apologies for the massive message 🫣 Wasn’t my intention but, it’s happened xx

Thank you to anyone who reads and offers advice xx

[denise]

Hi Sally

Welcome to the forum. You've come to the best place.

it is difficult to decide how much to get involved and when to leave off. but you need to think how her needs can change because she will probably say shes ok.

I'm presuming your mum has an occupational therapist who can help with equipment and a social worker for advice with regard to adult social care and your mum has her ds1500.

If you have a local mnd support group it's a really great place to meet others in the same situation and there you will find out useful information and be able to have a laugh and complain. Its surprising how much guidance you can pick up from others.

Saying that this is a great place to ask questions and join in.

Hugs to you and your mum
Xx

[Claireflo]

Hi Sally5672 welcome to the forum, sorry you find yourself here.

My dad has bulbar onset so lots of similarities, slurred speech may 2020, diagnosed May 2021. PEG feed, no speech, declining breathing but not yet recommended NIV. weak neck muscles and now weakness in his right arm. Also lucky to still be walking.

He's very similar in terms of independence and is very stubborn. It's a hard balance between leaving him to get on with life and wanting to help him. It's heart breaking watching the decline. I can't give you advice on how to find the balance as I don't think I've got it right and I think it changes. Sometimes it's easier to get the medical experts (OT/Physio etc) to recommend equipment to help as they're more likely to agree out of politeness!

All I can advise is to ensure she knows you're there when she needs you, you're there for the hard times and the tough questions but that you also find time just to be your mum's daughter and make new memories together x

[Sally5672]

Thank you Claireflo and denise I appreciate your advice and I will look at the support group and taking a step back to just be her daughter for a while. I haven’t taken that breath yet a just done that with her…
The DS1500 has been completed and the OT have good as with her social worker but, as you all know, things are slow to be put in place, so between myself & her sister we run round like headless chickens without taking that step back and just being there.
Thank you both again 🥰x

[Cinderella]

Hi Sally5672 if I can say anything it is just being there for her that is the most help - the sheer loneliness is the worst thing of all. Getting friends to call and going out are what makes things tolerable. I have just had to make the decision to live alone but back to an area where I know people relatively close by. After my husband died my son asked me to move in with them but it's miles away from anyone I know and I have spent the last year sat in a chair not meeting anyone, they are too busy, I feel in the way and the loneliness just drags you down. Anyone acting as a carer for your mum can get in for free to shows and all sorts of things and often the disabled seating area is quite close to the stage, so for the price of one ticket it becomes more affordable to do these things. I have been assessed at the local leisure center and have a free pass for 8 weeks then go on a reduced rate - my carer gets in for free - so we go for the spa followed by the disability swim session (because I am in a wheelchair), but all the classes are open to me like chair yoga or health circuits - it is a way of helping to maintain what muscles we have and I always feel so much better afterwards - we follow it with lunch as the cafe there is good- it makes you feel normal again.
The NIV is nothing to fear - it maintains and in my case improved my breathing - the respiratory centre are really pleased - I use it overnight for about 6-8 hours and hopefully it will hold off me having to use it during the day for many months/years to come, plus my ability to cough is now so much stronger which is important.
I too suffer from neck muscle pain and see an acupuncturist which really helps plus check to see if your mother is entitled to a free monthly massage via the mnda - I so look forward to mine. There are neck muscle strengthening exercises - I was given printed instructions at the leisure center assessment for lots of different ones and work these into my day - every hour or so! Ask your OT?
I hope your OT has helped with a toilet frame and seat raiser so it is easier to get off the loo, what a difference it makes. I'm pretty sure you can get a riser chair from them too - but seems patchy depending upon postcode.
xx

[Sally5672]

Cinderella thank you so much for your reply… It’s really helpful and positive.. You have given me more information in that message than what has been offered to us in the last 5 months..! It’s like getting blood out of a stone sometimes & so frustrating.. They don’t seem to offer the information, it’s like it’s given if asked but we don’t know what to ask for 🤦🏻♀️
So thank you for all the suggestions x
My mum will love the swimming, it was something she has always done so I will look at those sessions. 🥰

[Ellie]

Sally5672 A warm welcome to the forum, Sally, sorry about your mum's diagnosis. And no need to be nervous, we're a bunch of Lovelies and Loonies 😁

Lots of neck pain,

I would also suggest that your mum have an neck assessment by her Physiotherapist or OT, as she might benefit from a brace/collar to support her head, which can be just too heavy for our weakened neck muscles to hold up.

but refuses for as long as possible not to use NIV.

If she gave NIV a fair chance, she would be amazed how much extra Oomph she could get from having more oxygen coursing through her veins!

She could start off wearing it for 15mins watching her favourite Soap, just to get used to its feel, then gradually build up to longer for night or even an hour during the day can make a difference.

Love Ellie xx

[Piglet]

Sally5672 Hi Sally. Just keep being you as your obviously a lovely caring daughter. You’ve said it yourself wanting to find a balance and I think that is what you are doing now. Being there for your Mum but allowing her to do her own things also. I wish you and your Mum find things will settle in place. We are here for you on this forum. Take care.xx

[Cinderella]

Hi Sally5672 I went away for a couple of days - no laptop as didn't have work to do (lucky enough to still be able to work from home) and it has taken up until now for me to find this thread again as I just wanted to add that my first attempt at going into a pool was earlier this year whilst at a Warner holiday, so pool wasn't large or deep, but I wasn't prepared for the effects of the water - the pressure on my stomach made breathing difficult and I panicked - I just sat and cried at the loss of suddenly realising I couldn't swim anymore. However, I didn't give up and went into the overly large jacuzzi with no bubbles just swirling and what joy it was, two noodles under my arms for support and free to float on my back and move my body anyway I wanted to. I have progressed to the pool which is chest height and manage fine - walking holding the pool edges or floating using the noodles and spend an hour enjoying the weightlessness, we've even added time in the sauna beforehand so the muscles are nice and warm - the leisure centre I go to has the standard sauna then another at a much lower temp, but I've done both, so I just wanted to share my experience in case your mum gets the same first reaction I did. xx