Hello everyone!

[Peanut]

Hello there, just wanted to introduce myself to the forum; I was diagnosed a few months ago.

It started with muscle twitches about two-and-a-bit years ago, which I completely ignored: after all, they were painless and didn’t bother me, and I assumed it was just something that happened to middle-aged bodies ... But then I began to lose strength in my right leg rather inexplicably, and finally went to my GP who referred me to a musculoskeletal service which was phenomenally useless. Without any diagnostic tests they sent me on a wild-goose-chase from one physiotherapist to the next, fobbed me off with the advice to “do more exercise”, and just ignored my concerns that the exercise didn’t make any difference at all ... By the time I got to physiotherapist number three I was literally begging to be referred to a specialist, but no luck. In the end I went private to get tests done (goodbye savings!) ... Anyway, now I’m in the capable hands of the NHNN, which has been great so far.

It’s mainly affecting my legs and hips at the moment; I walk at a snail’s pace and when it comes to climbing stairs I’m about as nimble as a Dalek. The weeks after the diagnosis were pretty tough, but I no longer wake up in a panic every night, and I’m getting a lot more relaxed about crying in front of strangers ...

My husband and I are trying to keep calm and carry on, as it were; we’ve sorted out the initial practical stuff like handrails and PIP/Access to Work applications. The prospect of losing ever more mobility does freak me out, especially as our plans to travel and see family this spring and summer have been totally “corona’d”, but I try to count my blessings. It seems to be progressing fairly slowly so far, and I’ve got a supportive family, and a job which requires very little physical mobility. It’s been really helpful reading everybody’s contributions to the forum, and to see you all get on with the ups and downs of this bloody thing, sharing support and advice. So thank you everybody!

Cheerio,
Peanut

PS: Apologies for the use of a pseudonym; I don’t want my students to stumble across the forum. Hope that’s ok.

[miranda]

Welcome Peanut. Good to see that are starting to come to terms with your diagnosis and getting practical stuff sorted. Have you seen an OT yet to advise on providing you with aids such as grab rails etc around the house? Please feel free to ask questions, there’s a wealth of knowledge on the forum.

[Ellie]

Hi Peanut and a warm welcome to the Forum.

Sorry you've had to join us and I can only hope that your progression stays slow.

Are you back in the NHS system now?

As Miranda suggests, if you need aids to safely get you around the house, contact your OT - we have a 'No Falling Allowed' rule here

Stay safe.

Love Ellie.

[Peanut]

Hi Miranda and Ellie, thanks for the warm welcome!

Yes, the local OT team have been great; they assessed the house and got extra grab rails and handrails for the stairs sorted out really quickly. I've also had very good experiences so far with the local Rennie Grove palliative care team who have offered all kinds of support.

We're planning on some more alterations to the house (as and when we can get builders in, post-corona...) - I'll post questions in the relevant section soon.

And yes, I'm now with the National Hospital at Queens Square - once I got referred to them it all went very smoothly, and they seem to be a caring and competent team.

Not upwards, perhaps, but certainly onwards!

Peanut

[Shaun]

Welcome Peanut,
It took me two years of dropping stuff and not being able to grip before eventually seeing the GP about 'my hands don't work properly` I was fortunate to see head of physio who referred me for the nerve test, followed swiftly to see consultant.. You seem to have a positive attitude keep it going It
.I understand your concerns about students, my daughter is a teacher and a couple days after diagnosis she came home in tears as the boys were doing Stephen Hawkins impression , they didn't know about me, it was just boys being boys
Keep positive and take whatever help is available,
Shaun

[Peanut]

Hi Shaun, a two-year wait sounds really frustrating; I was already at the end of my tether after one year!

My students are at uni, so they are (fairly ...) mature, and I'm not worried about ridicule or anything like that - but I do know that they google their lecturers just out of curiosity, and I've not yet decided whether or how to be "out" about my MND with them.

Funnily enough I once nearly squashed Stephen Hawking (by accident!): tried to push open a heavy door, took a running start, someone else opened the door from inside, I stumbled down the length of the corridor at full momentum and nearly landed in the lap of a chap in a wheelchair who looked awfully familiar ...

[Deb]

Hi Peanut and a very warm welcome to our friendly forum.

I am very sorry for your diagnosis. Like you it took me over a year to be diagnosed and I was referred to a multiskelital clinic and given repeated physio for my leg weakness. One new physio was amazed I had not had an MRI or been referred to a neurologist and I think he suspected straight away .

It's hard to know when to tell everyone and "come out " .I felt better and relieved when everyone knew but it's a hard decision and initially I tried to hide my symptoms.

It must be especially hard at the moment as we are all isolated and unable to access help so im hoping you have support. It's a shame about your travel plans, peanut. I use a powerchair and am unable to weight bear but we are able to take short haul flights, taking my chair and using the airport special assistance.

I love your story about Stephen Hawking. I also like your username and avatar. So much so that I have been wanting to eat peanuts all evening ! If we weren't isolating I would have asked my husband to go to the local shop for some.

Take care
Love Debbie x

[nunhead_man]

Good afternoon and

A welcome from me to this place that none of us really want to be.

I too found the period between first signs and final diagnosis the most difficult of the five or so years I've had this thing so I'm pleased to hear you got through that period and are beginning to plan positively.

I'm sorry corona virus has hobbled your travelling plans - for us there were none of those we are still trying to move house and it is coronavirus that has has hobbled us in regard to that

[Sue1]

Hello Peanut, I have often looked at this forum but this is actually the first post I've made, but it was nice to see someone else is under Queens Square hospital and I thought they were very caring and helpful too.

My husband was diagnosed with MND about a year ago, he had jumpy skin on his arms which as soon as we saw a private neurologist in Windsor he pretty much knew exactly what was wrong straight away. They were the classic fasciculations. What had fooled any previous diagnosis was that Mark seemed to be starting to suffer with some dementia symptoms and a change of his character. Subtle changes but obviously I was noticing it. So as soon as we saw Dr Katie Sidle we were told Mark had FTD MND. - (Frontal Lobe dementia)

And so our journey continues. Apparently this combination is very rare and I haven't met or spoken to anyone else who has this diagnosis so its a lonely journey sadly.

I am wondering about contacting the Rennie Nurses but have held back at the moment. I know how good they are though as they helped with my dad, and Mark's mum and dad.

Take care xx

[Peanut]

Hello Sue,

I'm sorry to hear of your husband's diagnosis. I was a bit hesitant about contacting Rennie Grove as well - "palliative care" has a somewhat final ring to it ... but they've been very good with all sorts of practical things like exercise, and they offer support to carers as well such as counselling, which my husband has found helpful.

All the best, Peanut

[Lynne K]

Good morning a Peanut and Sue.

Peanut, I’m sorry that you’ve had to join us on this horrid journey. We all seem to have a bit (or a lot) of trouble getting our initial diagnosis. I was first sent for a spinal MRI that indicated (what I’d suspected for many years) severely degenerated discs. I was discharged. A lost opportunity. My GP was annoyed and referred me a second time. About 10 or 12 months later I was sent for relevant tests (a brain MRI plus nerve and muscle tests), my diagnosis came shortly after.

It is surely difficult for both us and our loved ones in the beginning. It sounds like you’ve passed this stage and found a way to cope. I can relate to what you said about keeping your MND secret for now. I don’t like to be the focus in lots of situations. But in one of the situations that concerned me it turned out mostly better to be ‘out.’ Most people are ok with it and offer help with doors etc But I still don’t like being watched.

Good luck for your slow degeneration to continue and in keeping your teaching role as long as possible. Have you thought about voice banking?

Sue, Hi.
I’m sorry about Mark’s situation. He’s lucky to have you in his corner. It will be tiring both physically and emotionally. Take good care of yourself, Lynne

[Peanut]

Good morning Lynne!

hearing from you and others I guess a year from the first GP visit to the diagnosis is really not so bad in comparison; I think I was more frustrated by the attitude of some of the professionals I dealt with initially. But that really doesn't matter now. Strangely, I find the coronavirus-situation to be a distraction - survive the pandemic first, then deal with the MND afterwards ...

And it's good to hear that you've had positive experiences sharing your diagnosis. I have to say it's been fine with my line manager, and our administrator who's in charge of disability accommodations has been great finding out about available support and is ready to fight my corner for equipment.

Yes, voice banking definitely seems like a good idea while I'm sitting at home - I'll post a question about technology in the relevant forum!

Have a good Sunday!
Peanut

[Ellie]

Hi Sue and a warm welcome to the Forum.

I'm sorry to hear of Mark's diagnosis and that he also has FTD - hopefully he is well looked after by the NHNN.

Please don't hold back in seeking help for either Mark or for yourself - it can be a difficult journey. (I see that Rennie Grove offer Complementary Therapies to carers/family )

Stay safe.

Love Ellie.

[Hayls]

Sue1
I know about FTD, my Dad developed personality character changes, it took us years for FTD to finally being diagnosed, he craved sugary things, laughed at everything and would get past memories wrong, describing them not as they were, finally they scanned his brain and the condition was so progressed the frontal temporal lobes had almost disappeared completely. I’m unsure if he then went on to develop MND, he stopped talking, walking and swallowing became problematic,
My MND was diagnosed July 2019 but had symptoms for about a year before hand, when I eventually got referred to Neurology the moment I mentioned my Dads FTD they suspected I had MND because a test detected an inherited faulty gene and the lead specialist at Southampton has said I could develop FTD as well
I know how tough FTD can be and I’m starting to experience how tough MND is but one thing this forum has taught me is, we are not alone, please don’t be afraid to ask for advice or even if you need a good giggle, they are a great community, we are here for you

[Piglet]

Hi Sue

My husband was diagnosed with MND October 2017. The lat twelve months I have noticed changes in his personality. Really pleasant in himself but quite over familiar with others at times. His concentration has changed and he can longer manage his own fianances. I wonder if his is the start of FTD alongside his MND. Would appreciate more information from you if that's ok.