Dad Newly Diagnosed

[Daught21]

Hello everyone 😊

I am so please I have found this forum. You are all amazing xx

My Dad was diagnosed with MND last week.

A bit of background:

He has been going to the GP for the last few months with a significant right arm and hand tremor and weight loss. We were convinced he had parkinsons at this point. After a few more visits the GP referred him to a neurologist (routinely). We were given a date of Jan 2022. Dad's symptoms significantly worsened (balance, loosing weight) so I went back to the GP to escalate but were told it could still be a long wait. We decided to take him to a private hospital and went within 3 days. The neurologist confirmed the parkinsons diagnosis after a thorough check up but told us he thought he had a muscle wasting disease due to weight loss and fasciculations (particularly on his back). We obviously knew he needed more care so asked to be referred back to the NHS (My Dad is a pensioner with no savings) The following week my Dad went for the EMG test. Then the following week back to the neurologist where he confirmed the diagnosis of MND.

I was so shocked. The neurologist even commented after reading the GP report he believed it was parkinsons alone.

I appreciate any messages and hope to continue his journey on here.

Much love

Catherine xx

[matthew55]

Welcome Daught21 you have entered the real Twilight Zone but be not afraid as we are here to guide you, comfort you, advise you and support you. You are not alone anymore. Stay Strong. 👍😍🙏😁xx

[Daught21]

Thank you so much matthew55 I have read around the forum and have to say you have made me feel so much better with your posts. You show real honesty and integrity 🥰🥰

[matthew55]

You are more than welcome 😍😁😀😄xx

[Lynne K]

Hi Catherine, I’m sorry for your dad’s symptoms and recent diagnosis but glad that you found this forum for support and friendship. I hope that your dad gets all of the helpful services in place quickly. If he’s up for it maybe suggest voice banking as sooner rather than later is the best way to go, Lynne x

[Mary C]

Hi Catherine, did the neurologist say he would refer your dad to the local hospice team or palliative care team.?.It’s really useful to get referred as they can listen to your dad about symptoms and link him to appropriate health professional such as occupational therapist, dietician, physio.
Also use the MND association website for lots of information as well as their helpline for advise.
Its early days but my advise is to get known to hospice team first..A nurse may come out to meet you both and do a baseline assessment.
Its important to get contact numbers for advise and support as needs change.I use a book to keep contact numbers in for health professionals.
Sounds like a dietician is needed..again this can be done via hospice or community palliative care team as it’s important to try and maintain nutritional intake.
Please ask any questions as forum members have been through many stages and are here to help.
Best wishes
Mary

[LindaB]

Daught21 Hey Catherine welcome to the forum nobody really wants to be eligible for - but once here you'll find it's amazing source of information. 👍

[Daught21]

Thank you Lynne. Funnily enough I have just been reading about the voice box. I need to do it sooner rather than later as my Dad's voice is becoming weak. I have noticed this over the telephone for a while now. Whilst I was with him on Sunday he was coughing alot and struggling to clear his throat. I am trying not to ask him too much but did ask if he was struggling to clear his throat to which he replied "no" xx

[Daught21]

Thank you Mary. We have a specialist MND nurse coming to see us on Tuesday and we've been advised by the neurologist that she is the link. That we will have lots of different agencies involved.

I'm very knowledgeable on the palliative care side etc as my Mum has end stage COPD. Although she is doing very well at the moment. I think the shock of my Dad has done something.

My Dad is eating okay but he is literally skin and bone. Like you say he is most probably not getting the correct nutrients xx

[Daught21]

Thank you Linda B and sorry for your recent diagnosis xx

[Ellie]

Daught21 A warm welcome to the forum, Catherine - so sorry for your dad's diagnosis, your mum's too.

Is your dad back in the NHS system now or still on the referral list?

I think his weight/food and fluid intake is a priority, which hopefully will be addressed on Tuesday.

You have a lot on your plate, hopefully you have good support yourself...

Love Ellie.

[Lynne K]

Thank you Lynne. Funnily enough I have just been reading about the voice box. I need to do it sooner rather than later as my Dad's voice is becoming weak. I have noticed this over the telephone for a while now. Whilst I was with him on Sunday he was coughing alot and struggling to clear his throat. I am trying not to ask him too much but did ask if he was struggling to clear his throat to which he replied "no" xx

Catherine, if your dad cannot manage to do the voice banking is there anybody in his family who sounds similar who would do this for him. It’d be preferable to a strangers voice and not be quite a familiar accent to his otherwise. If I’d have thought about this before doing my voice banking I’d have asked my sister as I’ve realised since then that we sound very similar. Good luck for your dad. Love Lynne x

[Daught21]

Hi Ellie thank you 💕💕

Yes my Dad is back in the NHS system. We only went to the Nuffield for the initial appointment because we were desperate. I told the private consultant we would ask the GP to refer us back. As it happened he was the same consultant for the NHS so he sorted the referral back and everything. Spoke to his colleague who did the EMG test. I cannot fault the Consultant at all.

Yes I'm eagerly awaiting to see the specialist nurse on Tuesday. I am on with writing a list.

Please correct me if I'm wrong with anything as I'm very new to MND.

I have a very supportive husband, children and the other family members.

Thanks again xx

[Daught21]

Catherine, if your dad cannot manage to do the voice banking is there anybody in his family who sounds similar who would do this for him. It’d be preferable to a strangers voice and not be quite a familiar accent to his otherwise. If I’d have thought about this before doing my voice banking I’d have asked my sister as I’ve realised since then that we sound very similar. Good luck for your dad. Love Lynne x

That's a really good point. There isn't really anyone because my Dad has a strong southern Irish accent (even though he has lived in England for 60 years) and none of his brothers live here.

That's good food for thought though. My brother would most probably do it but I think he'd quite like to keep his Irish accent 🤣🤣

I'm really not sure how it works. Would his brother in Ireland be able to do it?

Thank you xx

[Ellie]

I have a very supportive husband, children and the other family members.

I'm glad of that Catherine. xx