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Thread: Questions to ask consultant

  1. #1
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    Questions to ask consultant

    Hi all
    My dad has recently been diagnosed with PBP. I'm going with him to meet his consulant to get all the info he missed when he was given the diagnosis. Has anyone got any suggestions on things I should be asking? Not so much from the financial side of things, but practical stuff, medical help etc. Is there anything you wish you'd known at the start? I feel like I need to get all the ducks in a row and not have him worry about things.

    Thanks very much

    Met

  2. #2
    Forum Member Dude's Avatar
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    Hi Met Sorry about Dad. You should be getting a referral where you will meet the support team. They will prob prescribe Riluzole at that time. Not much more advice I can offer at this time. 99% of the information you will need for Dad is on here so ask away. Dude xx

  3. #3
    Forum Member Terry's Avatar
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    Hi Met;

    Sorry to hear about your dads diagnoses. As Dude says, you should find out about your support team and they will probably provide most of the help.

    Do write down any questions that you and your family have so you don't forget to ask them.

    Welcome to the forum and please feel free to ask any question.

    Best wishes, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

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    hi Met
    sorry to hear your Dad has PBP. I have that as well and was diagnosed at first July 15 with Pseudo Bulbar Palsy and March 16 it was changed to Progressive. It was at that point I was appointed a head nurse who is in touch with me often just to see how I am .I have a Speech and Language Therapist who deals with my ability to swallow as well as speech.I also have a dietician who monitors my weight loss.Your Dad should be told about his support team at his next appt.
    May I ask at what stage is your dad at present with his speech and ability to swallow?
    I will say the same as Dude.you will find most answers on here. If you can't find just ask and someone will always have the answer .
    Best Wishes Vikki

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    Thanks everyone. He's on Riluzole and is having someone from the support team out this week, and also has a SLT appointment booked. There is also an appointment at some stage with the breathing people.

    At present, speech is unintelligible, the app we've put on his phone has been great. Swallowing isn't that bad at the moment, so I don't think there's been too much weight loss. The cough irritates him a lot though as he can't clear his chest properly.

    The plan is to carry on regardless!

    Met

  6. #6
    Forum Member Barry52's Avatar
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    That's a good plan Met. It seems like the support teams are working in your dads favour. Ask about a cough assist device which may help dad.

    Best wishes
    Barry
    Iím going to do this even if it kills me!

  7. #7
    Forum Member Terry's Avatar
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    Hi Met;

    It sounds as if you Dad's getting some of the support that he needs. Does he use a computer or a tablet, as sometimes these can be easier than a phone screen to type and talk with. His SALT should guide him but sometimes these people have little knowledge of tech stuff.

    How long has he been having problems and when and what was first noticed.

    Best wishes, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  8. #8
    Forum Member Katrina36's Avatar
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    Hi Met, sorry to her about your dads diagnosis, my dad had pbp mnd aswell, diagnosed in July 2015, it sounds like you have the right things happening so far, he's on rizulole and you have got him a speaking app, the speech and language will help him from a speech and swallowing point of view, it's good he has not lost weight, is he able to eat ok?, the dietician will be part of the team that will help regarding what types of consistency, texture of foods and advise which are best for your dad and keep and eye on his weight, is there anymore information you can give about his condition to date and see what advice we can give you?,, if there is anything you want to me then feel free ... Katrina x

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    I would suggest getting an occupational therapist (OT) to assess the home for potential need of grab rails and safety from falls. These may not. Be needed for a while but it's good to know what's available.

  10. #10
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    Cough assist is now on my list, thanks

    He has the speech app on a tablet too, it's a recent gadget for him so still learning the way around it. He's out and about a lot, so the phone seems to be working well, at least for the time being.

    We started noticing problems at the end of last November, with a persistent cough. The speech started to go downhill fairly quickly after January. The doctors have been really good, the local GP referred him to a specialist in London. They got through all the tests fairly quickly. At the moment, there's some slight muscle wastage in the arm but apart from that, not a great deal else. Swallowing cold foods seems to be easier for him than hot. It's the speech, coughing and swallowing for the moment.

    He's a very independent, stubborn man he's resistant to becoming involved in benefits, the idea of grab rails etc won't go down very well. I think it'll have to be something that will wait until it's needed.

    I'm worried about mum too, I don't really know how to support her in this. I'm at work, they are away a lot. I guess I just need to fit in where I can.

    Thanks

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