Potential Diagnosis for elderly father (89)

[John_1971]

Good evening all, I’m apprehensive to post as I appreciate many of you here have had lives turned upside down by an MND diagnosis and then living with or caring for those with the progressive symptoms.

My story is not quite like that right now. It relates to my elderly Father. At 89 he has suffered with severe communication and mobility issues after a long long period of decline. He and Mum remain remarkably independent with support from family - notably myself and my sister, and some occasional community health interest.

Now then. Having accompanied my Dad to a trip to A&E on Sunday (low blood pressure - he had a turn but came home with me) the consultant was very struck by my fathers long term symptoms. On examining the tongue and discussing his voice I first heard the words ‘Bulbar’ and ‘Fasciculations’. She then took me aside and asked what if any diagnosis he had been given (Lots) but she was at pains to tell me he has all the symptoms of MND, and that he must see a neurologist via his GP. Obviously we had not previously had that diagnosis.

So we are on top of getting this investigated.

But really, can it be possible MND has not been considered by medical attendants given these symptoms and progression, over at least 2 decades- but the pieces are picked up in 5 minutes by a Dr he has never encountered, and who is looking after 10 other people in A&E re-sus?

Has anyone experienced a reluctance to diagnose MND, particular when of a good age? Will we struggle to obtain that diagnosis when present or am I being a little bit cynical?

[Banned]

Those of us with the disease are often misdiagnosed. It is very difficult to diagnose but there are some tests including genetic screening.

[Mary C]

John_1971
Gosh what a shock for your dad and family.Is it worth you on behalf of your dad( if he agrees) to ask GP explain what he/ she thought was the cause of your dads long deterioration?
The hospital consultant should send her findings to the GP.( you can request a copy from GP)

The important thing is what’s next in symptom control and support for your dad.A referral to a neurologist needs be the first step. A referral to a hospice/ palliative care team should trigger contact to your dad.These teams offer support to the family too emotionally and practically.

Hopefully he has a lasting power of attorney registered given his communication problems.Hope he has been seen by a speech and language therapist to ensure he has at least a basic method of communication?

If sadly MND is the diagnosis from the neurologist I would like to think the support systems will be triggered given advanced mobility and communication issues,

with Best wishes
Mary

[John_1971]

Thank you Graham and Mary.

I will be in contact with his GP directly and do as you suggest Mary. There has never been a referral to a SALT - another new term learned in the last few days.

From a family perspective and in an unusual way a diagnosis of anything at all will be helpful as it resolves unknowns. And if it unlocks additional services, well, that is also welcome.

He may be reluctant to accept treatment and even engaging with diagnostic procedures. Two of us have enduring POA (health and legal) and again would need to speak to the GP about how and when we need to trigger the poa for his health.

So yes. Some difficult conversations in the pipeline . He’s a private and very independent man. He managed to dig his garden over two weeks ago and sawed the limb off a tree last Friday.

The resilience and ability to cope of people in our lives, and on this forum are truly humbling and we truly value any insights and advice we receive here - has any subject been harder learned?

John.

[Ellie]

A warm welcome to the forum John.

I am not a doctor but will try to give a lay person's answer to your questions, based only on experience.

At 89 he has suffered with severe communication and mobility issues after a long long period of decline.

(I sound like an English teacher 🙄) I'm having trouble understanding what you mean by this: the "after a long period of decline" and the "he has suffered with severe communication and mobility issues" confuses my little brain 😏 Have the severe issues come on recently?

She then took me aside and asked what if any diagnosis he had been given (Lots)

So, your dad has seen a few doctors obvs - what types of diagnoses has he had?

But really, can it be possible MND has not been considered by medical attendants given these symptoms and progression, over at least 2 decades

Yes, it's possible, especially if he had one of the slow progressing variants of MND.

Has anyone experienced a reluctance to diagnose MND, particular when of a good age? Will we struggle to obtain that diagnosis when present or am I being a little bit cynical?

From being on the forum, I have seen numerous people in their 80s, and older, being diagnosed with an MND so, as well as being highly unethical, if your dad is found to have an MND in the upcoming tests, there's nothing to suggest he'll be treated and differently to a 39yo in the same stage of the illness.

Love Ellie.

[matthew55]

I'm so sorry to hear about your father but he has had a bloody good innings and having known my grandfather who died aged 102 he doesn't want to go that far. Sorry if this sounds harsh. 🙏

[John_1971]

matthew55 . He has indeed and he would be the first to agree with you. It’s about managing this last bit of the journey with love and care and compassion.

Ellie So he has mild alzheimers (diagnosed one month ago), very stiff weak legs, pain in his heels and also in his forehead. Arms and hands are okay. His speech is unintelligible to people who don’t know his, his tongue atrophied and displaying fasciculations. He will be immobile and reliant on a chair in the new year.
He also has prostate cancer but that was stable enough several years ago for him to decide not to pursue treatments for that. (Reducing testosterone would have weakened him further).

There have been no diagnoses to explain the deteriorating symptoms. He has of course been to several scans, mri’s etc which drew a blank apart from some signs of wear and tear. Typically he is referred assessments of individual ailments but there has been no holistic review- til now.

From us as Carers point of view we know he is going to be immobile, but any progression in respect of speed of speech, dementia and swallowing/nutritional issues are something we need to understand ASAP and haven’t really been on the radar.

He has had a blue badge for his disabilities only for about four years (so was driving prior to that ). But his legs and speech have been getting worse over something like 15 years. I understand and appreciate this is a very slow progression.

Thanks for your thoughts. I’ll update you all here when we get passed certain milestones.

[PeterPan]

John_1971 Hi, I’m a bit late to join the conversation and I don’t want to repeat what others have said. So I’ll just say that I have been told that many GPs will only see one or maybe two cases of MND in their whole careers (because it is rare) so yes, it can be overlooked.

Secondly (apart from the rare genetic testing mentioned) MND is diagnosed by neurologists ruling other things out one by one. So it’s not surprising that people with MND can slip through the net. And then consider all the people with undiagnosed, later onset MND who die of other causes maybe even before their MND symptoms have presented. As a personal example, I could have died of either of the two heart attacks I had many years before I joined this forum with MND!

If your dad does have MND, then I really hope he benefits from the multi disciplinary services that are available (albeit it’s a bit of a postcode lottery). You should press for this, and you’d find that we here would all guide and support you.

[John_1971]

PeterPan Thank you very much Peter, That is very useful. I am relieved of the notion it should have been picked up already.

[Daught21]

I'm so sorry to hear about your father but he has had a bloody good innings and having known my grandfather who died aged 102 he doesn't want to go that far. Sorry if this sounds harsh. 🙏

Hi Matthew

Sorry but I have to disagree with what you have put. My Dad was of an age which people would deem as being "he's had a good innings". I find it really sad that my Dad had to endure/and know that he had MND at the end of his life. Why not die of old age? My Dad said to me he wanted to see his grandchildren grow up more. He was a very physically fit man before. His body failed him. MND is awful for everyone involved!

[shelly21]

Hi John_1971
like others obviously push for a neuro appt ASAP. There are other neuro conditions to be considered. Parkinsonism etc can and often gets over looked.

You are right in your concerns re nutrition etc so whilst waiting further appointments maybe ask for a referral to a speech and language therapist. They can advise on lots. For instance I have a peg (feeding tube) for when the time comes that I can't chew or swallow foods etc. Also you can ask for an appointment with dietician who can prescribe liquid foods. I eat most things but I have a fortisip fibre drink for breakfast. One is for convenience/speed etc of getting a good amount of calories etc and two its got fibre in that helps my body stay regular.

[matthew55]

I can only speak from experience. My Grandfather was miserable as all his friends had gone and he had nothing in common with the world he was in. Not wanting someone we love to die is a selfish attitude. Truth hurts.

[John_1971]

shelly21 Hiya Shelly - thank you. He has just had notice of an appointment with the neurologist at the end of December. This I believe was originally scheduled for March (as a result of the Alzheimer's diagnosis) but it has been bought forward and we are grateful for that.

I’m not sure what treatment and support my Dad would accede to irrespective of the causes of his predicament but let’s see what happens in the New Year.

[Ellie]

He has just had notice of an appointment with the neurologist at the end of December.

John, do you know if the Neurologist specialises in MNDs, a specialist in another area of neurology or a general Neurologist? xx

[John_1971]

Ellie - I don’t know right now. I have no reason to believe this appointment relates to the recent suggestion my Father is suffering from MND. It was made following his recent diagnosis of mild Alzheimers. It just happens to have been bought forward. I had no knowledge this meeting was even scheduled to yesterday so this is fortuitous.

Is suspected MND something a ‘neurologist’ might refer on again? We could do without being passed pillar to post.

I am not sure I will be in the meeting. My parents usually manage routine but I will be chauffeuring them this time.

Do you think we should write to the neurologist to avail them of the situation?