talking...

[BlueandGold]

Well I think it might be time to stop trying to talk. Was out and about the other day and tried to respond to a simple greeting from a passerby. "How are you today?", I asked. The response I got back was, "I didn't understand you, are you deaf?". Oh well, I understand. I've been asked by many what my affliction is, from stroke to cerebral palsy. When I tell them ALS, I usually get the same response; "why aren't you in a wheelchair?".
IIWII.

Vince

 

[Nikki J]

So sorry. People are still fairly clueless about the pre paralyzed stages. I have been asked several times " what did you do to your leg?" When people see my afo by people who know I have ALS including one friend who is a physician ( in his case it is denial pure and simple)

If it is any comfort we could understand my sister long after strangers could not. Some people get little cards to hand out if they are going to be out and about alone. You could print what you want from a medical problem to detailed I have the kind of ALS that steals my ability to speak first

 

[bigmark1954]

Well I think it might be time to stop trying to talk. Was out and about the other day and tried to respond to a simple greeting from a passerby. "How are you today?", I asked. The response I got back was, "I didn't understand you, are you deaf?". Oh well, I understand. I've been asked by many what my affliction is, from stroke to cerebral palsy. When I tell them ALS, I usually get the same response; "why aren't you in a wheelchair?".
IIWII.

Vince

Vince, you really hit home with your comment. People are generally freaked out by my response to their greetings or questions. The majority of them think I have had a stroke, many of them still know nothing about ALS, let alone bulbar symptoms.
I have made a card with my name, address, date of birth, and phone #.
This has helped a lot when going to the pharmacy, Lowes, Home Depot, and even the auto parts store. It saves me a lot of frustration, by not have to embarrass myself by repeating myself over and over again. This card... is a simple fix to a frequent issue.
I have often thought about making an introduction card as well....."wording would be sumpin like this "Hello, my name is Mark and I have ALS (Lou Gehrig's disease). I still have all of my intelligence, and could probably kick your ass, but have trouble speaking legibly. Please be patient with me, and listen carefully to what I say." THANK YOU

I think a card is part of my future until I loose my ability to walk completely. If any of you have already used a card, I would be interested in how your wording is used?

 

[Green Queen]

That's interesting vince. THEY didn't understand you, but YOU are deaf! So sad about your voice. You've probably got a gawg dreamy voice too, it's probably what reeled your wife in. One thing I hate about all this. Wayne said I had a nice smile, that's what prompted him to ring me. Guess what doesn't work properly any more? The card thing is a great idea.
Mark you should definitely get that card happening. We all should. Would be awesome to compare notes!
God bless, Janelle x

 

[BlueandGold]

Actually Janelle it was my singing voice. I was quite the crooner. She still calls my cell phone now and then to hear my voice. I don't do that anymore. Can't take it. This damn disease tries it's best to tear us down little by little so we aren't recognized anymore. I have to get my t-shirt soon; big middle finger with ALS underneath.

Vince

 

[notBrad]

Vince, you really hit home with your comment. People are generally freaked out by my response to their greetings or questions. The majority of them think I have had a stroke, many of them still know nothing about ALS, let alone bulbar symptoms.
I have made a card with my name, address, date of birth, and phone #.
This has helped a lot when going to the pharmacy, Lowes, Home Depot, and even the auto parts store. It saves me a lot of frustration, by not have to embarrass myself by repeating myself over and over again. This card... is a simple fix to a frequent issue.
I have often thought about making an introduction card as well....."wording would be sumpin like this "Hello, my name is Mark and I have ALS (Lou Gehrig's disease). I still have all of my intelligence, and could probably kick your ass, but have trouble speaking legibly. Please be patient with me, and listen carefully to what I say." THANK YOU

I think a card is part of my future until I loose my ability to walk completely. If any of you have already used a card, I would be interested in how your wording is used?

I like that, a lot.

 

[ShiftKicker]

I like your more personal touch to the card idea. I received one from the SLP at the last clinic I went to that stated:
I have PLS (Primary Lateral Sclerosis) which has affected my speech and balance.
I understand everything you are saying
Thank you for your patience.

My husband calls it my get out of jail free card.

 

[Osiyo]

BigMarket 1954 stated this: I have made a card with my name, address, date of birth, and phone #. All I can say is brilliant idea, I will put into action this very day. It matters not the wording as it is informative "my name, address, date of birth, and phone # If found please return.

For those that have reaching problems for socks and shoes I found a long shoe horn and now I am back into business dressing myself completely at least until the next fallout occurs, the next work around.

Be blessed people as I am blessed.

 

[starente15]

Sorry that people can be idiots Vince. I love the idea of the card "Hello, my name is Mark and I have ALS (Lou Gehrig's disease). I still have all of my intelligence, and could probably kick your ass, but have trouble speaking legibly. Please be patient with me, and listen carefully to what I say." THANK YOU

It's been interesting for me as my father's voice has become unintelligible. I work with people who do not speak English as their first language so I've learned to interpret a lot. My first reaction wouldn't be to tell someone I didn't understand them, rather pause for a minute to think about what their response might be and see if the words sounded anything like that. People are so uncomfortable with silence that they speak immediately vs. thinking first.

 

[fionae]

Dear Vince,

I am newly diagnosed with ALS, in August 2015. I have mostly bulbar symptoms. I can relate so much to what can happen in public when you speak with a stranger, as similar things have been happening to me for a number of months now.

As it happened more and more often that people were not understanding me, I started jotting down the info that seemed likely to be most appropriate/necessary for a particular errand, etc, BEFORE I ever got out of my car. I would write on a blank unruled file card, which I kept a good-sized stack of in the glove compartment of my car along with plenty of pens. I would make a general statement or so about my condition, and then write down what it was that I needed help with, etc.

I would usually begin with a few statements such as, "I have difficulty speaking due to a serious illness. I can hear you, and I can understand you. I can think clearly. I appreciate your patience." I would then proceed with writing down what it was I needed help with/what kind of transaction I wanted to make, and the like. At the bottom I would go ahead and write something to the effect of, "Thank you for your help" or "Thank you for your time".

I would carry that card into the store, bank, post office, etc. I would carry a pen in my hand, as well, in case further questions arose. There usually was plenty of blank space left on the other side of the file card for any of these further questions that might arise. I found that people were almost always very kind and receptive, as well as helpful.

It gave me a certain peace of mind when I was doing these errands, as I was almost always taking care of them by myself.

As time went by as I was doing this, I thought to myself, that it could very well be a good idea to have perhaps two sets of cards with slight alterations of info printed up, depending what the card would be used for. I at first thought of a standard business card size, but then thought if it could be the same size of a file card, that would allow space for extra writing as might be needed for each different situation. (That larger size may not be as convenient for a man, I realize. It would work for me, since I carry a purse.)

Anyway, I know that it has taken me forever to describe a simple idea; thanks for bearing with me. I just thought some variations on what I had used might be of some help to those in need of something like this, and how it could be adjusted as they went through the various phases of intelligibility.

I, myself, have just very recently started learning to use a tablet which speaks for me with a computerized voice.

Hope this may be helpful to someone,
Laura.

PS...Vince, I have just recently discovered some of your threads, and I find myself relating to them, or finding them quite interesting.

 

[BlueandGold]

Thank you Laura for all the suggestions. I find losing my ability to effectively communicate (and especially sing as I LOVE music) has been the worse part of this disease for me. I have often said I would have rather have lost the use of my legs first than my voice, however putting myself in the shoes of those who are wheelchair bound makes me realize just how important mobility is. The only positive is that we know our time is limited and therefore must enjoy every opportunity and every minute with those we love and those who love us. I count my blessings every day.

Vince

 

[Flpopsi]

When my wife (PALS) started losing her voice and before her diagnosis, I had a key chain made up by a an online company called Zazzle. It said:
"I have a condition called Dysarthria and can't speak. I can hear and understand you."

It works great.

David

 

[fionae]

VINCE: If you feel like it, I would really like to share experiences with each other as far as what we deal/contend with as far as having predominantly bulbar symptoms at this time goes.


DAVID: What a creative and thoughtful idea you had when you had the key chain made for your wife. Your wife is so fortunate to have you by her side!


Sincerely, Laura.

 

[affected]

Bulbar is awful because of the way so many people react.

This is a story about my Chris and a stupid person.

He went into the post office and there was a queue.
He stood in the queue and a past customer from his cafe entered and came up behind him. I'll just call him stupid ok.

Stupid - oh you closed the cafe, why did you leave?
Chris - I can't talk
Stupid - what?
Chris - I can't talk
Stupid - (louder) what?
Chris - I can't talk
Stupid - oh why can't you talk?
Chris - I have MND
Stupid - what?
Chris - I have MND
Stupid - oh no, you have MND?
Chris - yes
Stupid - oh ... pause ... so, what have you been up to then?
Chris - I can't talk
Stupid - what?

ho hum

You can also print a little card explaining your condition, then laminate it and carry with you. Make sure it says clearly that you can hear perfectly well and you can understand everything being said. Many people begin to talk louder and slower as though you are deaf or stupid.

So many people would just ignore Chris and talk to me like he was an idiot and it was such an awful feeling.

While your hands work, carry one of those little pocket sized notebooks so you can just write things down when at a shop or whatever. You can have some pre-written, like what coffee you want and common things.

You can put text to speech apps on your smart phone too.

We had one on Chris's iPad and as his hands weakened we added a jelly bean switch.

The main problem for Chris with all of this was he also had FTD and he just would not try and use the technology to speak for him. He was convinced everyone was too lazy to try and understand him and that it was harder to use an app than speak.

In the last months we were reduced to communication charts and could only discuss his most basic needs. Well for at least 6 months we could not have any actual conversation about anything, just work out what he needed.

I really encourage ALL PALS to learn text to speech apps really early, well before they need them. You can save all kinds of phrases in them, and they learn to predict what words you would commonly string together.

Then when you really need it, you don't have to learn it when you are stressed about really needing it. You can also do a bit of a transition over - using it in some situations, trying it out, get people you deal with used to this way of communicating.

I bought Chris his iPad just after diagnosis (he was bulbar onset) so that he could do just that - learn it early and be ready to use it when his speech was gone. He just could not sit and work at something like that with his cognitive decline in executive areas which was very rapid. He had personality changes that started many months before his bulbar symptoms, but at the time I didn't know of course that anything sinister was going on.

Another trick when you are actually speaking is rather than embark on a big sentence, start with a couple of words to give context to the conversation. I could understand so much of what Chris was saying, even to his last months, if I had a context. (like he was talking about us going to the doctor tomorrow rather than the lovely new orchid on the table)

It's really tough stuff, and very cruel, but if you think about what is more important - being able to communicate some way - then many bulbar PALS do continue to communicate amazingly. Sure it's not the same as talking, it's slower and not quite as fluid, but it is better than frustration and silence.
My Chris ran his own cafe's for years - his life revolved around talking, preparing food and eating. Bulbar was a cruel onset for him.

 

[dougieconnor]

Thank you Laura for all the suggestions. I find losing my ability to effectively communicate (and especially sing as I LOVE music) has been the worse part of this disease for me. I have often said I would have rather have lost the use of my legs first than my voice, however putting myself in the shoes of those who are wheelchair bound makes me realize just how important mobility is. The only positive is that we know our time is limited and therefore must enjoy every opportunity and every minute with those we love and those who love us. I count my blessings every day.

Vince

Hi Vince. I too was a singer. I do Disco/Karaoke nights in local bars. My voice started going and I find it so frustrating that I can't sing or join in grrr. I'm now using Ivona voice synthesis to shout and the next singer is... I also use type and speak app on android phone to speak to people who don't understand me. It also has large text so I can just show a sentence to the barmaid, Vodka and coke with ice
Your right Live life for today