My Dad has just been diagnosed with MND

[Penelope]

Hello all

I hope this is the correct place to post this.

Yesterday my Dad was diagnosed with MND. ABout 16 - 18 months ago his speech began to slur and the muscles on his face seemed to slacken somewhat. After ruling out a stroke they thought it was Bells Palsy but after a year they decided it could not be that so they started a system of ruling things in and out including Kennedys disease which they ruled out with a hormone test and yesterday advised him that he did indeed have MND.

His speech seemed stable for quite sometime after it first appeared 16 months ago however now I cannot understand anything he says. Also he is drooling quite a lot although I believe this has become worse over the last 3-4 months. My parents kept it from me and my sister until about 2 weeks ago when they said they were 90% certain it was MND. He feels quite fine in himself other than the awful fact he cannot be understood and he has a hanky at his mouth all the time due to the drooling. The only other thing my Mother said was the neurologist had him take his top off yesterday and there were some minor muscle or nerve ticks/twitching in his upper arms which she could not see but the Dr could.

I know eating, drinking and swallowing have become an issue and I believe they are looking into thickeners now.

Of course all of our worlds are in a spin. I have read the info pack I had our local MND assocation mail out and we are attending an info night next week.

I have so many questions and no-one to ask. I am trying to find info on the net that is reliable and intend to have a good look around this forum.

I seem to have read about bulbar onset? Sorry if that is not the correct term. It seems to fit how my Fathers MND has begun. Would this sound correct? It seems to me to be starting with the worst of the symptoms of this awful condition.

My Father is a writer and such a funny sarcastic man with lots to contribute and I love having a chat with him and I hate to think his thoughts and opinions are trapped in his mind. I had thought and IPad might help him perhaps with a text to voice app on it?

I don't even know what to ask I am sure I will think of a million things after I end this post if you have read this far thank you. Any advice or things I can/do for him would be appreciated.

I am sorry that all of you are having to deal with this hideous condition be it yourself or watching a loved one.

 

[ottawa girl]

Hello Penelope -

You've come to the right place for RELIABLE information, advice, understanding and support. Sad that you find yourself here and you sound like you're a wonderful daughter.

Ask away - and those in the know will be quick to offer you assistance. Having limb onset, I am unable to answer your questions, but I will say an IPad is a great idea. I hope that your Dad would use it to also join this forum if/when he's ready. It's been a godsend to me - just knowing I'm not alone is comforting. There is strength in numbers.

 

[brooksea]

I'm very sorry, Penelope.

If your dad's hands are OK, then the iPAD would be a light weight solution. Just be aware that as his ability to use his fingers diminishes he may need a head mouse or eyegaze. He sounds far off from that, but there are lots of different solutions, if he is willing to use them.

Good luck to you and your family!

 

[vzandt]

Welcome Penelope. This is where ive gotten the most information for my husband (also limb onset). Even more here then from our doctors. These people live it. So they know. Ask any questions. We will help as much as we can. You can laugh..cry..and vent here and hopefully find some wonderful friends in the process. I'm sorry about your dad.

 

[panguinjen]

Penelope,
Welcome! My husband is bulbar onset like your dad..."speak it" is an inexpensive app that he can use and " verbally" is free. Have your dad tuck his chin when he eats and drinks to minimize the choking....Rog wears bibs to manage the drooling along with washcloths. There is a lot of ideas to help your dad so just ask!

Jen

 

[poppy62]

Hi Penelope,
You have found an excellent forum, packed full of information and wonderful people willing to share what they have learned through their own experiences of this despicable disease whether they be CALS or PALS. My hubby is a 'bulbarian', just got a lightwriter as he can still use his hands and arms, I got my first electronic 'I love you' yesterday!
Poppy

 

[poppy62]

Went to moderation..?

 

[nikolab]

Welcome Penelope, iPad is a great idea!

I'm sorry about your dad.

 

[WellsRuby]

Welcome to the forum, sorry you have to be here....to me this form has been a life line. This is a good place to make new friends who will help you through your journey. You will find lots of helpful information and people that will listen to you.

 

[chrisroski]

Hi Pemelope, Welcome, you will find a lot of info here and the people are so helpful. I to started with bulbar onset, and they thought at first I had a stroke also, but after many tests, it was not that. I still have mobility in hands and legs, but my speech is gone. I have a iPad that speaks for me. I type in what I want to say, hit the speak button and it talks, my grand kids think its cool, I think it's a god sent. I would be lost without it. Try the thick it for liquids and see how it goes.
Keep us posted on how things go, we are here if you need us. Take care

 

[momap53]

So sorry about your Dad's DX.

There's a wealth of info here in our archives on just about any subject and since we have members around the globe there's usually an answer just a click away.

I'm limb onset with only minor bulbar issues just starting. You'll find plenty of Bulbarians here for support.

My dietitian did recommend lemon flavored beverages as well as carbonated drinks in the very early stages of swallowing difficulties

Good luck!

 

[Penelope]

Firstly can I just say thank you to all you lovely kind people your caring responses reduced me to tears. I am so grateful to have found such a lovely place to chat and seek advice.

The Australian health care system is a good one he has been referred to an excellent hospital with a team well equipped to monitor his progress. They think the iPad idea is a good one and may be able to help fund it.

His speech therapist has given him some thickening agent do he has been able to have a glass of water with choking which is wonderful. We are concerned with his lung function as there is a small decrease in muscle strength.

I just want to do research as I feel so
Powerless to help I think I am very much in the denial
Stage and figure if I google enough I can fix him somehow.

I hate the thought of never hearing his voice again or having a casual chat but I will find a way somehow.

Thanks again for listening and supporting I will get more involved in the forum as time passes it is still so new and scary now

Bless you all you are in my thoughts and prayers