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Twinkle

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CALS
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Hello everyone.

My husband of 30 years was diagnosed 3rd October 2018 of Bulbar Onset/ALS. It was a relief for us all to have a diagnosis as we was wondering all sorts what was wrong with him.

He started to talk slowler than usual in January this year, and gradually got worse over the months. His walking started from Feubuary where he walked in a stoop after rising from the settee. Over the months he had to use a walking stick, then crutches, now a Zimmer frame. He can walk around the house using the frame, it's very slow though. He can also walk upstairs with my help behind him, although this is becoming more difficult.

We're already receiving lots of help from professionals like District Nurses, OT, Physio, Matron, Speech Therapist, Dietician and our own Dr and lots of mobility aids. We're waiting of our local authority to assess our house for either stair lift & wet room, lift through to upstairs & wet room, or a house extension. I'm hoping for a house extension, but this won't be upto us.

My husband has been depressed since his voice started to decline as he's always been a talker.

Our kids are all upset and my husband refuses to be seen by anyone over than myself and 3 kids. ×
 
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lgelb

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I'm very sorry to hear this news, Twinkle. Since the house is under discussion, you should know that at some point a stair lift becomes unworkable, often, due to lack of trunk strength, etc. So it would be important to know if there is room for him to sleep/transfer downstairs.

Give your husband time to process and I imagine he will be more open to visits from others and going out. You will want to let the kids' schools know, if that applies, and sometimes counseling helps. Let everyone know that they can share anything anytime. Are you looking into text-to-speech apps?

We are here for any question or rant, large or small.

Best,
Laurie
 

Twinkle

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Messages
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Reason
CALS
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10/2018
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UK
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Our kids are aged 28, 27, 22 so they're all here to help out.

Yes, I know that a stair lift will become useless for hubby as he gets worse, it won't be upto me though what's installed in our house. I will explain though that a stair lift won't be used for long.
 

Nikki J

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I am sorry this was your answer but can imagine how difficult it must have been waiting for a diagnosis. Welcome.

Do you have an MND nurse who could perhaps appeal if the stairlift is the option the authority picks?

I am glad you have family support

It is very difficult foreveryone the first few weeks after diagnosis. I think especially with bulbar involvement there is a tendency to hide away for some. Hopefully he will adjust with time
 

Kristina1

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Welcome. im sorry about your husband's diagnosis. I would give him some time to process. When I was diagnosed I refused to speak to my parents or other concerned family. I made all questions and communication go through my husband. After a while I was able to resume talking to them again.
 

blitzc

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Welcome Twinkle.
Please know that there are lots of wonderful people here to help with any need or questions you have.

I too, couldn't talk shortly after my diagnosis without crying and not being able to continue. Within a couple weeks I had accepted it enough to bravely speak. Give him time>
Cathy
 

Twinkle

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Reason
CALS
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Thanks all for your replies. Yes, I'll give him time and not to push it having visitors or going out.

He definatly needs a feeding tube soon as he's struggling with the 10 tablets to take in the morning, 5 in the afternoon, and 4 at night. Most of these tablets are the slithery type which goes down easy, the others are chalky and big, so I snap them in half and half again. Also do me fiid us be coming a problem.
 

affected

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Welcome Twinkle, I'm so sorry you are here.
May I ask what is the huge amount of stuff he is taking so many times a day?

An early peg really is a wise choice for so many reasons, I'm glad he is going that route. At the top of the general forum are a lot of 'sticky' posts, important I think they are labelled. They might help you as there is one for newly diagnosed and one for anticipatory planning.
 

lgelb

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Many chalky (and other) tabs have liquid forms, in the interim. It's always worth looking.

It may not be the best idea to break them up in successive swallows, depending on what they are. If they are not on the "Do Not Crush" list it may be better to dissolve them in warm water if they are small, or turn them into a slush in applesauce or pudding if they are big.
 

Grandma D

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I have Bulbar onset, and have always been a talker, so I can relate to your husband. I have found that when I feel comfortable around people, I am able to relax and talk easier. You do notice people mouthing what you are saying! Encourage him to slowly talk to more people, and as they understand him, he will feel more comfortable talking!
 

swalker

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I am sorry to have to welcome you here, but welcome nonetheless.

Steve
 
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