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  • matthew55
    replied
    It seems Bulbar is a common theme and being one I really appreciate it. 😊

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  • Beemer
    replied
    I am also ex services (Army) and have only 3 years to go to get my state pension, but I have tried to make the best of what I have been given, very similar to all the postings I had in the Army. try to stay positive.

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  • Ellie
    replied
    Oh I'm glad your Wingwoman is going with you tomorrow

    Yes, things do move quickly at first - so many disciplines to meet for baseline measurements etc., then it eases off.

    No I didn't get a chance to do voice banking - that was back in 2007, a lifetime away in technolgy years!!

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  • bilvers
    replied
    Thanks Ellie, I'm already on the case with a file that myself and Mrs B have put together for every stage. The local MNDA rep called this morning too. Everything seems to be moving quickly. Did you do a voice bank? Andrew

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  • Lynne K
    replied
    Hi Stonehengeman, welcome aboard. You are lucky getting to 80ish before mnd took hold of you. But it’s horrid still. You mentioned losing your voice. Did you manage to bank your voice? If not, is there a family member with a similar voice who would be willing to do voice banking for you? If you don’t know anything about this then put ‘voice banking’ in the search messages box and plenty of posts will come up to give you food for thought. I’ve got to leave off now because we’re going for a drive. I may be back later. Take care, Lynne

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  • Stonehengeman
    replied
    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

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  • Ellie
    replied
    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.

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  • bilvers
    replied
    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

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  • Ellie
    replied
    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.

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  • bilvers
    replied
    Originally posted by Ellie View Post
    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?

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  • Barry52
    replied
    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

    Leave a comment:


  • Deb
    replied
    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

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  • Ellie
    replied
    Originally posted by bilvers View Post
    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.

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  • bilvers
    replied
    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.

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  • bilvers
    replied
    Thank you

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