Hi from the Neuro Bus Stop

[Clarel]

I’m an older Mum of two and Granny of two waiting with my 9 year old son and his 61 year old Dad to find out which bus is coming along on Thursday (Jan 19th) to pick up our family and take us to a new place.

Dad’s nerve symptoms have been gathering since at least last summer perhaps longer, slowly at first but now there’s some slight worsening or new symptom every day.

The hope of being told it’s a trapped nerve, hypochondria, the result of a serious fall in 2020 (C2 fracture), vitamin deficiency or somehow related to diabetes has faded but we still take refuge in those explanations.

Sadly we have just lost my elderly Mum who was very frail and gently fading before Christmas, began a four day sojourn in A&E on Christmas Eve and was transferred to a ward for end of life care. I was with her when she died twelve days ago.

So I’m here to introduce myself. I’m not sure I’m in the right place but if I am it’s a comfort that it’s a kind place with answers and solidarity.

I’m a person, I am not ‘just a carer’, I’m bossy and resourceful and always always good in a crisis and I pray a lot (privately on the whole). I like the teachings of Thich Nhat Hanh. I take comfort from membership of the Society of Friends (Quakers), the Church of England and Slimming World (other sources of friendship are available).

Please help me, I am so worried about this neuro diverse father and son who both already receive DLA for their autism/ADHD/physical challenges. Is there any other possible diagnosis than MND? Is there a right place to ask that question on this forum? And if not, what must I do now, today? SALT appointment re swallow tomorrow. Meeting my brother to choose Mum’s grave today.

I made the Samaritan lady laugh last night. My new hobby is swearing. My mission is to let you know you are appreciated. Thank you so much for reading this.

[Ellie]

Clarel Sorry about your mother.

Dad’s nerve symptoms have been gathering since at least last summer perhaps longer

Are you referring to your own father or the child's father?

Is Thursday's appointment the first neurological appointment or has he had some tests done and has been sent to an MND Specialist?

[Clarel]

Thank you Ellie, I appreciate your reply. The person who has neurological symptoms is my child’s father. He is 62 next week and dictated an account of the development of his symptoms to me this evening.
He had a lot of tests in the late autumn including nerve conduction, X-ray, blood tests and an MRI last Sunday . I feel like I’m missing something. He’s seen Spinal and Neurosurgery consultants who referred him to the neurologist (first appoint on Thursday) who he thinks is an MND specialist. He has an urgent SALT appointment tomorrow.

[Ellie]

Clarel Thanks for the clarification.

The SLT appointment today might have been quite (too) revealing; if you feel up to it, you might let us know how it went, no worries if you don't.

The Neurolgist's bio is easily found out on the internet, IF that's what he wants. xx

[Clarel]

Thank God for a SALT who didn’t mince her words.

She was excellent and tactful with the swallow assessment and advice. She was definitely ‘autism friendly’.

With the caveat that the neurologist might not give a diagnosis tomorrow (the EMG machine broke halfway through so they might insist on a redo) she told us it looks like ALS. She reassured us both that we are not crazy to think it’s MND and that this constellation of symptoms and pattern of change is a pretty typical story.

We have a 9 year old child with additional needs and live 300 miles apart during school terms, 300 yards during school holidays. My mother died two weeks ago so we are all together until after her funeral next week.

She was very supportive re I will always be me. I’m so grateful she took the time, saw us at home, was patient, kind, expert and proactive.

So now we’re on the bus. Good to know roughly where we might be heading.