ALS- MND ongoing

[Guest]

Hi All,
Diagnosed 17/10/2017
private gp, presenting with foot drop
blood test
neurologist 1
MRI
EMG and NCT
neurologist 1
nerologist 2
definite diagnosis

Retired November 2018

[Kayleigh]

Hi Jonboy,

Welcome to the forum. I am sorry about your diagnosis. There is a lot to come to terms with, but I hope you are already being supported by an MND nurse, occupational therapist, speech therapist and physiotherapist etc.

The history of your diagnosis is very similar to mine, except that I was diagnosed this year.

You will find lots of support from the friendly folk here. Please feel welcome to ask for advice and support.

Best wishes,
Kayleigh x

[JAY TEE]

Jonboy well you have joined good place to find everything you need to know about MND. I was also formally diagnosed two weeks after I retired at 65 in May 2014. I cannot walk and talk now but still got use of my right side so drive around in my wheelchair. Hope you not got it to fast and have you stored your voice yet. That’s something I wish I had done. I get good support from my old friends and my local council been good as well. Best wishes for the new year John

[Terry]

Hi Jonboy and welcome to the forum;

That's a lot of facts, how are you now getting on?

Best wishes, Terry

[Guest]

That is a can of worms Terry, I have had very little support.
Wheelchair took 6 months of arguing
profiling bed - took some time
stairlift came on the day I couldn’t walk anymore
We self funded a disabled bathroom. £10,000

no mnd nurse
no OT support
no physio
no consultant

I am reliant on the community matron and my GP.
My GP tried to get me a bipap but the home respiritory “team” said I didn’t qualify. sp02 = 92%

I have not sat around sulking though - I got on a fixed things myself , EMS, TENS - solved constipation, cramp - got a private physio but that is a bit expensive now. We ran out of money so I got a consultancy job, but they sacked me in november 2018 because the company is moving to France and India - thanks Brexiteers.

[Barry52]

Hi Jonboy53 and welcome to the forum.

Your post sums up the system of everything arriving late and having to justify your needs. I refer to equipment because the clinical professionals are generally very helpful. I don’t know if this is as a result of you being diagnosed privately. I was also diagnosed privately but offered a second opinion via the NHS and the multi discipline team are excellent.

Ask your GP to link you with one of the MND clinics throughout the country.

Best wishes,
Barry

[Kayleigh]

Hi Jonboy,

I am sorry to hear that you have such little support from 'medical professionals' other than your GP and community matron.

There is a lot of support and equipment etc that we are 'supposed' to be entitled to without paying for them, but how are you supposed to access them if you don't have an NHS physio/OT/speech therapist etc? - and no consutant - what the heck is going on????? Sounds like there is a serious lack of funding in the area where you live.

As Barry has already mentioned, your GP should be able to refer you to an NHS consultant/MND clinic.

Just in case you don't already know - the MNDA have got Regional Care Development Advisers, and there might be one in your Region. They offer friendly support/advice. In case you need it, this is the link to further information and contact details:-

https://www.mndassociation.org/getting-support/mnd-regional-care-development-advisers/#

Despite the situation you are in, it sounds like you are being very pro-active, and that you have got a great positive attitude and are making the most of things - that's wonderful, good for you!

Best wishes,
Kayleigh x

[Ellie]

Hi Jon and welcome.

Sorry you're being left to your own devices - are you seeing a private Neurologist or do you attend an MND Clinic?

BiPAP use tends to be indicated when Lung Capacity - specifically FVC/SVC - shows a steady/marked decline, rather than on SpO₂ figures alone.

BiPAP machines and settings are prescribed by Healthcare Professionals for an individual's needs. Is there a reason why you want to use the Nippy in IPPV mode rather than in Pressure Support mode? IPPV mode has no EPAP - did someone tell you this is OK?

No, Breas won't sell an individual its products.

Love Ellie.

[Kayleigh]

Hi Jonboy,

Good for you for being so resourceful!

Many people would be " up S... Creek, without a paddle" if they had to manage like you do with such little support from the medics!

Best wishes,
Kayleigh

[nunhead_man]

Good evening Jon and welcome

Given you can build a Trident warhead and an Airbus 350, whom are you proposing to deliver the warhead to? :-)

Seriously, if I need somebody advise me on my progression et cetera et cetera I know who ask first!

By the way all I think I mentioned elsewhere that I had a weird feeling in my back and I wasn't sure if this was another MND thing but the current thinking is that I have got some sort of one-sided urinary tract infection so I'm taking antibiotics with my riluzole at the moment.

[Guest]

Kayliegh -
My wife got the bed and wheelchair after much fighting - she said exactly the same thing��

luv from me x x

[Kayleigh]

Hi jonboy,

Is it a manual wheelchair or were they 'generous' enough to supply you with the electric variety? - I only ask because we are supposed to be supplied with an electric wheelchair once 'they' have deemed us to be 'worthy' of one

(As you can probably tell, my experience of 'wheelchair services' could be better - but I expect this is something that varies according to where you live - as is the case with many different services, probably a 'postcode lottery')

Best wishes to you and your wife,

Kayleigh x

[Ellie]

Hi Jon,

You don't have to "figure things out" yourself, or at least you shouldn't have to!

You might find using the Nippy in Pressure Support mode is better, as it reduces the effort on your muscles during both breathing phases, augmenting gas exchange.

The biphasic settings are recommended in ALS - an IPAP for inspiration and an EPAP for expiration - saving your respiratory muscles extra effort (that's ts aim after all!) Other factors to consider are spontaneous breathing and trigger breaths.

My initial settings were IPAP 10 & EPAP 4, but I was a long way off FVC of 100%.

IPPV = Intermittent positive pressure ventilation, is a standard, controlled mode of ventilation (does not require any spontaneous respiratory effort from the user), and is not synchronised with user's respiratory effort.

I am more than willing to help you if you want help.

Love Ellie.

[Deb]

Hi Jon, welcome to the forum.

You sound really knowledgeable and pro active. A good positive attitude is really important and I find it helps me when I have control over any decisions.

There is expert practical and emotional support on this forum and always someone to answer a question.

However, it is worrying that you have to work some things out for yourself and fight for the equipment you need to be safe and comfortable.

Take Care and keep posting.
Love Debbie

[Terry]

Hi Jon;

I have emailed Mnda Connect direct putting down what you said in your first 2 posts and suggest that you do the same as the way you have been treated is disgraceful.

You should not be paying or having to try to set things up like that.

Also I would get your doctor to refer you to your nearest hospice as they have their own specialists and normally help us in so many ways. You can refer yourself there as well, it's well worth it.

Love Terry