Shocked New starter

[bilvers]

Hi Everyone, I’ve just joined as I was diagnosed with MND this morning at the ripe old age of 55. Having seen that this affects anyone and at any age, it’s good to know there are lots of people to reach out to of all ages.

I’m Andrew, and I was in the RAF for 30 years so seen quite a bit of life. I’m happy to hear from everyone, particularly if you have good advice . I live near Huntingdon Cambridgeshire so if you are close, it would be great to hear from you also.

This is only day one of this but I hope I will have many more days to tick off too .

[Ellie]

Welcome to the Forum, Andrew, sorry you’ve had to join us.

You’re obviously very much together, posting on Day 1 - that's the RAF-man in you ??!!

May I ask if you have limb onset ALS/MND as opposed to bulbar onset or another type of MND?

My entry level advice to you is to stay as healthy, mobile and safe as you can; be positive and live the most fulfilling life possible; check out dietary/food supplements; listen to your body.
As you’re newly diagnosed, see what clinical trials your MND Clinic is offering and get on one.

For now, stay safe

Love Ellie (13yrs post diagnosis)

[4x4hawk]

Hi Andrew,
Can I ask how long it took for you to get a diagnosis.

[David R]

Hi Andrew,
Welcome to the forum, sorry about your diagnosis.

I and 67 and was diagnosed 16 months ago with Bulbar onset and live about 50 ish? miles from you in Ipswich. I’ve learned a lot since diagnosis and I’m sure we will all be able to help you with any questions you have especially about the help you may need, normally after diagnosis you are over whelmed with the amount of appointments you’ll have with various specialist but it will all be useful moving forward.
Such a shock to start with but I’m sure you will get passed that point as I did and make the most of life.
Regards David

[bilvers]

Not sure yet, its started in my throat area with speech issues and swallowing.

[bilvers]

Thank you

[bilvers]

I first visited a doctor in January 2020 which directed me to hospital for tests. I was called back for an appointment on the 11th May but this was delayed until today.

[Ellie]

Not sure yet, its started in my throat area with speech issues and swallowing.

OK, thanks. That sounds like bulbar onset - you might hear that term used by the healthcare professionals.

[Deb]

Hello Andrew and a warm welcome to the forum.

I am so sorry for your diagnosis this morning but well done for posting on here so soon. Even if an MND diagnosis is suspected it's still a huge shock to have it confirmed and your mind must be reeling. It took me a while to come to terms with it before I wanted anyone, apart from close family ,to know.

I won't add to the good advice you've had on here but do accept any help from your OT, physio and nurse. They are able to look ahead to plan for your needs wlth exercises and equipment to make life easier. When I was newly diagnosed I didn't want to so I waited until everything became urgent. They did understand and are still speaking to me !!

It sounds like you have a great, positive attitude to life which will really help you as there are good times ahead to be had.

Take Care,
Love Debbie

[Barry52]

Hello and welcome Andrew.

Sorry you find yourself here but you can be sure of good advice and morale support. I was also bulbar onset which eventually turned out to be the MND sub division PLS. We have something in common in that my granddaughter’s boyfriend lives in Huntingdon.

Stay positive and keep safe.
Barry

[bilvers]

OK, thanks. That sounds like bulbar onset - you might hear that term used by the healthcare professionals.

Thanks, I was suspecting this myself. Do you have any experience of this?

[Ellie]

Although I am limb onset Andrew, I developed all of the bulbar symptoms not long after diagnosis.

Like many on the Forum, I have no speech so I use text-to-speech on my PC, I've swallowing issues so I have a little button feeding tube, I manage my saliva production with medication as my swallow can't keep up, I have mildly affected emotions (called pseudobulbar affect, PBA, or emotional lability) but not bad enough to warrant taking meds.

I guess we all try to be a step ahead of progression. If you have PLS, your progression is much slower than in ALS (though some people with ALS have slow progression too. You'll often hear it said that "everyone is different", which can be very frustrating when you just want to know what's next and when... )

Are any of your symptoms bothering you at the moment?

Love Ellie.

[bilvers]

Hi Ellie, at the moment my speech is affected and has been since January. I can speak clearly but I have to be mindful of not trying to speak too quickly. Swallowing has become an issue in the last 2 months or more with bitty cereals causing irritation and causing me to cough suddenly. My tongue certainly isn't as strong as it was in. the past either. I've cut out cereals and sticking to porridge and not drinking wine as that was starting to irritant my throat and is was a becoming a burden to swallow. I have my first specialist appointment in Cambridge tomorrow which will be a big step.

I've had an initial speech therapy session, which must have gone some was towards my diagnosis , and a second one on Friday.

I am walking and handling things well today, I am still as fit as I have been for a while.

Its fantastic to hear from you and learn from your experience. Andrew

[Ellie]

Oh yes, the first few appointments can be hard Andrew and particularly because you often see people who are much more advanced than you are and the reality hits you like a ton of bricks - be prepared for this (I used to be overly engrossed in reading magazines in those early days to avoid having to make eye contact with anyone ) The visits do get easier, I promise, and you'll get to know the various doctors, dietitians, physios, speech therapists etc. Hopefully the clinic will be relatively quiet tomorrow.

Another thing is to write down any questions you have - most people get an attack of forgetfulness once they walk into a consulting room - and write down the answers too.

Hope tomorrow and Friday are not too daunting for you.

Love Ellie.

[Stonehengeman]

I am 80 years old. I have Progressive Bulbar Palsy diagnosed Jan 2018 I have lost my speech but can still eat, although it takes me twice as long as it would have done 3 years ago. I sometimes have to persevere as I get tired of chewing and regularly about half way have to reheat in the microwave.
I had a feeding tube fitted August 2019 but have not used it yet for feeding. It has to be flushed each morning with 50ml of water. With hindsight I wish i had left it longer before installation. BUT there is a balance because if you loose weight and leave too long it cannot be installed.
To look at me you would not think I had a problem until I open my mouth to speak. I take the view that I am lucky in as much as it has not progressed only speech loss, when one sees other MND sufferers.
I am also lucky in having a caring and understanding wife. Good luck to you. Stonehengeman