Being diagnosed later in life

[Thame15sax]

My mum was diagnosed earlier this year after many tests etc. She is 86 years old, I believe this is quite unusual to be diagnosed so late in life, is this true?
Her main symptoms are her breathing it is awful and detoriating quite quickly even since being diagnosed. She also has lost power in her right side and her speech is becoming harder to understand and I see her most days.
I am clearly worried about her and what the future holds and how long she has to live. When do you know things are turning for the worst, what should I be looking for?
Thank you for any help guidance you can provide me with. I appreciate every case is unique but just a rough idea would be helpful.

[Claireflo]

Hi Thame15sax I have no useful guidance to offer but just to say I'm sorry for your mum's diagnosis and deterioration. My dad was diagnosed with ALS bulbar onset (speech and swallow first affected) 21 months ago. I also asked about progression and an idea on times but the consultant will not give any comment. After several months of asking my dad was assessed by the sleep clinic/non-invasive ventilation unit and they tend to do some tests that give an indication of progress for breathing difficulties. Is your mum regularly monitored for her breathing? Also have you linked in with the local hospice as they are there for more than end of life care so if not may be worth making contact.

[Bowler]

The question of how long and what signs to look for are the questions that I guess we as carers probably ask more than anything, I know I did.
The reality is no one can truthfully answer either question. Claire makes a really good point about getting linked up with a hospice. They are so much more than end of life.

I will just say there were several times when I thought the end was near however a year later it was the hospice that knew.

Best advice, cherish every single day and make each day the best you can for you and mom.

[MNDConnect]

Dear Thame15sax,

I am sorry to hear your mum has recently been diagnosed with Motor Neurone Disease.

She will need to be referred to the most appropriate health professionals who can offer support for her symptoms.

As mentioned previously, a referral to the palliative team, who are usually based at the local hospice, will be a great support to you both.

Please do contact the helpline team MND Connect either by calling our freephone number 0808 802 6262 or by email: [email protected]

We are here to support you and your mum, we will be able to point you in the right direction to health professional support, answer your questions and provide you with written information.

With kind regards
MND Connect

[Ellie]

A warm welcome to the forum Thame15sax sorry to read of your mum’s diagnosis.

My mum was diagnosed earlier this year [...] She is 86 years old, I believe this is quite unusual to be diagnosed so late in life, is this true?

Yes, I’d tend to agree with that because:
Limb onset ALS/MND can present with symptoms such as loss of dexterity, difficulty walking, muscle wasting, all of which can be explained away as part of the natural ageing process and may not ring alarm bells with family members, care home staff or healthcare professionals, at least initially.

Bulbar onset ALS/MND may have a greater chance of being diagnosed as a common presenting symptom is slurred speech. So, once a stroke has been ruled out, the reason for the slurred speech is (hopefully) investigated. But again, symptoms are often attribute to ageing.

As for one’s prognosis, breathing, (low) weight and general frailty are usually seen as survival predictors but, even at that, unfortunately it can be almost impossible to give a timeframe until nearer the end.

Love Ellie xx