Has any one developed a stutter from Parkinson.

[20fatcats]

I have had PD for 6 years now. The worst symptom came about 3 years ago. Stammering and stuttering . I've been told it is not very common. Quiet voice is common with PD but my volume is not too bad . has any once else experienced this and found anything that helps. I am going to speech therapy . No change yet.

[chartist]

Apparently it is common enough that studies have been done about it. Here is a link to one such full study from last year :

ncbi.nlm.nih.gov/pmc/articl...

Art

[JohnPepper]

Hi 20fatcats. Yes! I wrote about all my symptoms in my book, "Reverse Parkinson's Disease", which has been in print since 2003. Original title, "There is LIFE After being Diagnosed with Pd". View my website, reverseparkinsons.net and contact me.

[Cjbro2000]

This has been one of my greatest concerns lately. I’ve noticed it’s becoming more and more difficult to verbalize my thoughts without a lot of stammering and trouble grasping for the words I want. It’s yet another way Parkinson’s tends to isolate us from much needed social interaction. I worry it’s an indication my mind and cognitive function is deteriorating. It wasn’t a problem a year ago. So far, writing my thoughts is not an issue.

[pdpatient in reply to Cjbro2000]

Hi cjbro2000, would you be willing to please tell us about your experience with your speech issues after what appears to be 3 years after it became a problem?

Thanks in advance for your response.

RKM

[Cjbro2000 in reply to pdpatient]

pdpatient:

I haven’t noticed the stuttering/stammering much of late. I think that may have more to do with the COVID-19 isolation. I don’t have many conversations these days that aren’t by text or email.

So far I haven’t sought any professional help such as speech therapy. I really think the stammering has to do with the difficult process of transferring my thoughts from my brain to my lips and an awareness of the need to hurry it along before the conversation moves on without me. Prior to getting PD, stuttering was never a problem, so there’s definitely a connection.

If you have any specific question on the subject, feel free to ask.

Carol

[pdpatient in reply to Cjbro2000]

Thanks for responding, Carol. Question: are you on Rytary? I am asking because my doctor suspected it as being too high a dosage and he is bringing down the dosage. I am noticing an improvement.

By the way you have perfectly described the predicament that you, I and keepsie have. I am amazed by how accurately you described the problem and the reasoning being behind it. I am going to use your description with my communication with my doctor who initially struggled to understand it. You are also correct that the problem could be social isolation because the problem became even worse during the pandemic.

As it is, I have been self isolating for the past decade, rather unconsciously to the point that I barely have a social life and most of my communication is at work which is mostly by instant messaging and texting. My wife says that it’s my lack of verbal communication that has exacerbated the situation. She has been having a hard time understanding me too.

RKM

[Cjbro2000 in reply to pdpatient]

Hi, pdpatient.

No. I don’t take Rytary. I take C/L 25/100 - 1-1/2 pills 5X a day. It’s not ideal, but it works fairly well for me if I watch the timing.

It’s been nearly 2 years since I’ve had an in-person appointment with my MDS. My doctor appts. have all been Zoom video conferences recently because of Covid-19. Unfortunately, the cognitive testing is only done in person. I’m way overdue, altho my MDS feels I’m still doing fairly well in that regard. But I definitely notice a difference.

Take care.

[keepsie]

hi 20fatcats,

It started a few years ago. Sometimes I was loosing control over my lips in the middle of a word so i had to make an extra effort to finish it. A week ago I suddenly started having the same issue with my jaws. I guess it indicates that my PD is progressing. I am going to see my neurologist on Friday, Aug. 21. I will get back to you after the visit.

[pdpatient in reply to keepsie]

Hi keepsie, can you please update us on your condition now? After a year almost, I hope that you are doing better.

RKM

[keepsie in reply to pdpatient]

hi pdpatient,

I am still stuttering/stammering and I feel it's getting worse, especially when I am on the phone. Basically, I have the exactly same situation as cjbro2000, word to word. Poor us. Hope, you are doing fine.

Best,

keepsie

[pdpatient in reply to keepsie]

Oh, God, that is awful. Add me to cjpro2000’s boat. Exactly, the same with me for the past 3 years. My doctor (MDS) correctly suspected that the reason could be Carbidopa/Levodopa and started reducing it and adjusting my “medication cocktail”. In my case, it’s Rytary. It is working so far and my speech is getting slightly better. Praying that it will become even better. Right now I can barely communicate. Fortunately, I have an IT job and the spoken word is rarely necessary. Question: are you on Rytary? I am puzzled because this is not a problem that seems to affect most other patients at least in this forum.

This Parkinson’s journey is getting tougher. Thanks for responding and may God bless you and your family. That’s all I can say.

RKM

[keepsie in reply to pdpatient]

Hi pdpatient,

Thanks for sharing your story.

I had to leave my IT job because besides the actual coding we were supposed to give presentations and attend meetings. It was embarrassing and I couldn't stand it. I miss my job very much.

Right now I am on the Carbidopa/Levodopa/Entacapone (I will refer to it as C/L/E :)). I used to be on Rytary for some time. Pretty soon I have noticed that its efficacy declines and I switched back to C/L/E. Back then I have attributed this decline to the infamous conflict between Levodopa and proteins - we are recommended to have 2 hours between the protein meal and the Levodopa. Since Rytary is a slow release medication, it crossed my mind, that this is, probably the reason. Later, after I took the DNA test, I found out that I have the COMT gene mutation and Entacapone is a highly recommended addition to C/L. However, I am still not exactly sure why Rytary stopped working on me. I know people who are very happy with it. Maybe I should try it again.

I am glad it's working for you and your speech is better. I hope you continue with your progress .

Best Regards,

keepsie

[Ramondo]

Difficulty in speaking and stammering is the worst and latest thing PD has thrown at me , speech therapy not helping either, this is such a wicked illness.

[20fatcats]

Thank you everyone for the responses. Suttering certainly makes life alot harder. Im finding if I can think to talk really slow and low it helps but unfortunately it takes alot of effort to remember to do this. I have a piece of paper with 4 big dark dots on it and I try to tap each dot as I say each word. This helps me to slow down and be more deliberate which helps abit. Sometimes when reaching for my paper my sentence just rolls out quite nicely which is great. But alas not often. Hope this helps someone.

[JayPwP in reply to 20fatcats]

I am so downhill that I am not understood even by my wife most times, low volume, garbled speech, stuttering and stammering

Would you please elaborate this exercise of yours. I would like to try it

[20fatcats in reply to JayPwP]

HiGet a piece of paper and draw 4 round circles in a horizontal row . Shade the circles in.or alternatively buy some round stickers and put them on the paper in a row with a space in-between . About a quarter inch in-between is fine. When you start to talk place your finger on the first dot and then for the second dot for the next word as so forth. It makes you slow down and focus more. I don't think its important to just have 4 dots. You could put more in the row if you felt it helped. Sometimes it only helps me to get the first sentence out but just that much makes a difference when I'm talking. Sometimes my finger gets stuck on a dot and i forget to keep going but on the whole I have found its beneficial.

[JayPwP in reply to 20fatcats]

Thanks. Will try

[20fatcats]

I did speech therapy for awhile . I saw a specialist who looked down my throat and took photos and said my vocal cords had separated so they gave me exercises to do with my voice and then they relooked at them and they had corrected themselves. Helped with volume a bit but not the stutter.