Speech problems


#1

 

 

Hello all

I don't have proper parkinson's, but I've something else causing most of the same problems.  It confuses me and the people who are treating me. Sometimes they get a bit sort of annoyed with me that I don't have proper PD. I don't quite understand what's going on for them, but they can end up discounting some of what I experience if it doesn't fit with PD or with their idea of what PD is.   I saw a speech therapist yesterday and she said a couple of things that surprised me, and was hoping someone here could help -

She says that apart from on and off periods from medications, if you have parkinsons symptoms from the time that you first have them, they will all always be constantly present, they never come and go.

I have slowness and freezing of walking, thinking and speaking.  It's well accepted that freezing comes and goes unpredictably and is affected by environment, so she's wrong on that bit, but I'm wondering about other parkinsons symptoms? In the early years, before medication, did any of your problems come and go? Were there times when you were slow and other times you could move fairly freely? When your tremor first started, did it come and go? 

She says that no one with parkinsons ever has complete loss of voice when they start to speak. I get that. It's worst when I've not spoken for a while.  I know what I want to say, make all the right movements and no noise comes out for the first few words or sentence, then it takes a while to get loud enough to be heard.  Does anyone here get this brief no voice at all thing too?

She says that freezing and disfluency of speech in PD is only ever cognitive, only ever about not being able to find the words you want to say. I get that kind,  but I also have physical freezing of speech where I know what I want to say but can't physically make the movements to speak. It feels like the freezing in my legs - there's the same suddeness, like the brakes slammed on, and the same physical tension and effort involved in getting started again. I'm wondering does anyone here get something like that?

Thanks,

rhubarb

 

 

 


#2

 

Hi

I can tell you i have always had a tremor from when it started 15 or more years ago.

In communicating I often find myself repeating myself  i don't know why that is? and my words don't always come out too the sound i want them too a lisp or a slur so i often find people saying what? or sorry what was that?? which is frustrating, I know i bite my tongue at different times, either its in the wrong place physically or parky has made it so that it doesn't know to get out of the way??.

And then i find sometimes that it is difficult too think(word finding) and put together what i want too say or write(type) that will make sense too someone else Or even the next task i want too do or thought i wanted to do.


#3

Hi Rhubarb

Iv had parky about 6 years 1 year dx  and you sound just like me . I look like a gold fish somtimes with my mouth working but nothing comeing out, other times l stutter like porky pig . The faster i try to talk the worse it gets , if i close my eyes it helps as i can focus on talking , i used to be very articulate and worked as an engineer and trainer ,

my tremor is eratic worse when stressed or resting ok when on my own most of f the time, thinking can be dificulte n cannot spell anymore ,

Movement not good untill i get going then is ok untill i sit or laydown for more than 10 minnets then have to start all over again.

loads of other stuff but thats all i can do for now 

live well   Cc


#4

I hate to tell professionals they are wrong, but I remember before and after diagnosis, symptoms coming and going.  For example, I had a difficult time swallowing but it went alway before I took drugs.  My tremor only appeared after I worked out (the drugs keep it quiet now).  I had a parkie mask for a few weeks prior to diagnosis and it went away on its own.  Check out the early entries in my blog (www.wpgchap.blogspot.ca) for I detail early symptoms that came and then disappeared.  However there is one symptom that has remained constant - the inability to speak properly.  I am unable to find words and therefore either keep quiet or use immature substitutes for the word I am seeking.  I think I actually sound like a moron when I speak.  

Add to the word finding problem, my voice is so soft people more than a few inches from me have difficulty hearing me.  I did go to to a speech therapist who helped me greatly, that is until I stopped practising and reverted to a person who solved the problem by stopping adding to a conversation.

Maybe I am wrong.  Maybe the symptom s do not fluctuate but my experience is that they do.

Then again, maybe I am a hypochondriac and only imagined those fluctuating symptoms.

With PD, anything is possible.

I will shutup now.


#5

Thanks for kind and useful answers. I'm a bit slow and was waiting for a faster time to answer but it's not come, so i could sound a bit odd. i guess anyone who's been reading here a while is used to it.

Sea Angler - it's so many speech problems at once. if it was just the physical or just the cognitive problems that'd be tricky enough, but both sides at once, trying to handle the physical stuff and work round it,  when you hardly know your own name, is too hard.

I do that repeating thing you do.  when it's in tourettes they call it palilalia.  I didn't know till the other day it could be part of parky too.  The memory stuff is hard to live with. i don't know if this is parky slowness or a full on brain crumble. it's scary.  i'm hoping i'll get a chance to try one of the alzheimers treatments they think help with more than just memory in PD.  What is the fish in your picture?  it's beautiful. my partner goes sea fishing, a total obsessive. hope its a good day with you.

 

Cheshire cat -  goldfish or porky pig description got me laughing on a bad day. thank you! that'll help everytime it happens from now on.  and good to know that both of these are PD things, and that tremor can come and go a bit.    Will try the eyeclosing thing, it surely can't make me look any more strange! Cheers.

 

wpgchap - thanks that's useful to know some things came and went for a while. i've been reading around a bit and looks like this is maybe a fairly common experience, but not what doctors are taught.

Hard to lose both volume and have the cognitive problems. makes me sad you say you sound like a moron. but think i feel something like that. normal speech seems important in if people can see us as "real people like them",  and if they can see us at all. I wonder what not being "seen", and all these repeated "social defeats" does to our sense of self and even our physical health. It takes a bit of energy, not just the struggle to communicate but the effort afterwards to talk myself back out of seeing myself that way. I need that energy and headspace to cope with the practical stuff. 

  A relative has recent damage to his voice and i watch how hard it is for him to get a space in the conversation to speak and how much energy he has to put into being patient with people, even good friends and family, who don't realise they are treating him as if he's a daft child and as if what he has to say can't be important enough for them to slow down, stop talking, and lean closer to listen.  

with me when people treat me like i'm daft or talking nonsense because I can't speak fast or clear enough that's enough to freeze me up bad enough so i don't know my name and can't get a word out. it's a downward spiral.  i try remember, if this is the social norm, i've probly been treating other people like this all my life without knowing it.    with my partner and neighbour im lucky. nothing about parky is stranger than anything else they've seen and they can see past it, even when i'm not quite there. 

i started reading your blog from the start. very useful.  thanks. your post about the walk by the lake when you had the good hour was lovely.

 

Thanks for your help and lovely kind answers Sea angler, CC and wpgchap

 


#6

 

That's very interesting Rhubarb,

i thought i was being some sort of village ejit when i keep repeating myself but reading about it as a condition it seems a quite common as part of Parkys and there's plenty too read about it,  A speech therapist called too see my father the other day who had a stroke i started too quiz her on a few things Parky speech  & memory wise but i thought i better stop as she hadn't come too see me.

The fishy is a skate (thornback) or roker we call them, they are the most prehistoric of creatures in the flesh but also Bootifull in their own way, i always return them gently.


#7

rhubarb

 

I would politely suggest to your speech therapist that he/she has no idea of how ones speech is affected by Parkinsons.

 

Your last two paragraphs describe exactly our situation.

 


#8

Hello Sea Angler,

will go have a read about the palilalia in parky. don't hear about it so much. with parky seems like there's always more weird stuff to get your head round.

I was there to try help when speech therapist came to see my Dad too - i wasn't a great help!! 

i'm wondering if people with parkinson's have a "right" to see a speech therapist across the uk,  or does it come down to other people deciding when you need it. the private one i saw a year or so back for one session said it was worth the effort 

I saw a thornback for the first time last summer - amazing looking,  like from another world, i guess it is another world down there

 

 

 


#9

benji   Thank you!

I think it may come to that. Tho the way I feel just now after 2nd session, I'll have to work at the polite bit.


#10

In a post above i said something I wish I hadn't, I called the more serious cognitive problems we can get "full on brain crumble".  that was clumsy and trite, and said to distance myself from it. Wanted to say sorry to anyone who found that unkind.    


#11

Again the forum has been helpful in that I have discovered that other people with Parkinson's also bite their tongue when eating. This has only just started but happens every time I eat something, it's very painful and I was wondering if anyone in the forum has been able to resolve this problem, or if they have had the symptom disappear over time.


#12

 

Hi

I seem to do it in almost any situation, from trying too push the words out ~too eating~ and in my sleep, Sleep is worst i suppose in shock. I might bite my tongue 2 or 3 times a week.


#13

Really glad to read All, no apologies necessary.  Biting tongue is paniful for days.  I do believe it helps me to talk/read aloud but not possible much of time.  Also, this year, when really bad off I stutter badly.  Upsets one dau. severely- who cares!  I CAN NOT help it!  When will they get that through their non-PD minds?

 


#14

Hi Rhubarb,

Who told you you don't have PD because the symptoms you describe fit with it. I personnel would ask for a second consultation with a new DR,

I have being granted the privilege of being the Volunteer Expert patient Consultant soon to start at Lincoln County and although I don't know everything about PD they still have said to me that I am extremely well versed in my condition. I also took part in a online course called Good brain Bad brain Parkinson for which in my exam I scored 84%. So I do know my thing. And as for your speech therapist she is clueless.

My advice to you is get another dx and another speech therapist if by chance your anywhere near Lincoln Proff Sharma my specialist is one of the best. Good luck BB xx


#15

cheers Jaffy.

So hard to connect well with others if they aren't listening for that difference between the parky speech symptoms and who we really are. Some people I'm close to have got better at it over time -  I hope your daughter can too.


#16

Thanks bettyblue,

that's so good about the expert patient work. It's really needed. It's a strange illness -  so many symptoms and so different in different people, and professionals still getting taught a pretty simplistic idea of PD. Good on you for finding the energy and teaching yourself all this stuff.

With the speech therapist. it would be good to see someone else but the history makes it tricky.  Their dept was caught up in the previous longterm misdiagnosis many years ago, so they're bit defensive, and want to keep on rewriting reality. I can sort of understand it - it's a common human response to being wrong, and it's built into NHS culture,  but I've had decades of this and it causes harm. I have to try and be tactful, but it doesn't come natural!! 

From reading around it sounds like some aspects of speech in parky - like physical freezing of speech - don't get talked about enough by professionals, so it's not just her that hasn't got her head round it all. Another reason we need more expert patients!

Whatever I disagree with them on, the exercises have been magic - I'm louder already. The struggle to speak loud enough to get heard, and not being heard, is one of the pressures that triggers the cognitive and physical freezing of speech, so just getting a bit louder helps with all that too. It feels good.

re PD diagnosis - you might be right. I've 8 symptoms that were said to never occur in PD, and I've a family history of another parkinsonism, so I assumed it couldn't be PD. But over the years of reading around, I've found out that 5 of those symptoms do occur in PD, and another one might do - they just don't get talked about.   So I think you're right, PD should be back on the list of possibilities

Be good to hear how the expert patient work goes.

all best

rhubarb

 

 


#17

Ruhbarb I am going to private message you. Bb x


#18

Hi rhubarb;

I would tend to say that your speech therapist is DAFT! She needs to go back to school.

Years ago, when my PD symptoms first started, they would come and go. The more tired, stressed, ect., I was, the more they would show up. I believe that it had more to do with the fact that my brain was still able to produce it's own dopamine, although in diminished capacity. As the years went by, my brain produced less and less dopamine, and my PD symptoms became more and more constant.

Last year along with my word finding issues, I started to stutter, something I had never done before. I mentioned it to an old friend that also happens to be a Dr. of physical therapy in the states, and she told me that my stutter wasn't like the classic stutter of someone that has stuttered since childhood, rather in Parkinson's, it was more like a freezing of speech. Since my DBS surgery last December, my stutter has improved a small amount, although it has not gone away....