For those who care for someone with Parkinson's disease
[Home] [Forum] [Help] [Search] [Register] [Login] [Donate]
You are not logged in

Topic Speech Therapy Go to previous topic Go to next topic Go to higher level

By Lynnie2 On 2014.11.04 16:34
My husband had a swallowing assessment last week and today we went to the pathologist to talk about his speech. He has problems finding words and his voice is softer.
She told him about the program called the Lee Silverman. I have heard about it and I thought it was intense.
She said that you are suppose to have therapy for 5 days but in reality she could only see him 1 day a week and the rest would be up to us to do the exercises. She would give him homework.
She would work on the volume and pitch of his speech.
We would write down 10 sentences that we would normally use during the day or week and work on saying those and then later introduce other words and sentences.
She would have to assessment him first
but she didn't have time today.
My husband would really have to want to do it or it's just a waste of time.
We could do it on a trial basis and quit anytime.
She asked him whether he wanted to do it and he said he didn't know and would think about it.
I sat there praying he would agree to do it, and started tearing up. I couldn't help it. I don't know if he knew I was emotional as he was looking down at that time.
He also had a bad night and wasn't feeling well so I didn't ask him on the way home.
My stomach was churning and I felt emotional on the way home.
I finally asked him later this afternoon and said I hoped he would do it and help himself and (my daughter hopes he will too.)
He just walked away from me........
I said are you still thinking about it?
I'll give him the night to think about it or a day, but I have to let the pathologist know whether we want to continue.
If we don't, she said I could go in and she could give me some tips on how to help..........but I wish he'd do it under her guidance.
We'll see what happens..........
Pray for us............

By jcoff012 On 2014.11.04 17:09
Lynne, Carl has been through LSVT Big, which is the same program, only for movement. It took a very thorough assessment, endless questions, then actual movements to see if he would benefit from the therapy. BUT, the biggest factor to ensure success was Carl's commitment...HE wanted this program and HE decided to commit to it...I am not sure I was four days a week, an hour a day, then he had exercises to do at home...three months...phew! He has had two, one hour followups and is scheduled for another in four months...This is because he feels it is helping with mobility. Does it work for everyone? I honestly do not know...I would say that Carl enjoyed the one on one with another former Marine, and he enjoyed forcing himself to get up and get moving every day.

As for the part of Lee Silverman called Loud, which is your speech part, Carl doesn't have a baseline low enough yet...when he needs it, knowing him, he will go...his Neuro at UCSF was very pleasantly surprised and pleased with Carl's range of motion...and told him so. This positive feedback really helped his morale.

I guess the best way for you to approach all of this is to me quite simple...this is a chronic disease, and all one can do is decide HOW we will face that...we WANT our PWP to exercise, to do the voice strengthening exercises, but if they cannot, or decide not to do this, we must step back...our wishes and those of our PWP may be far apart, even polar in thinking. This does not mean YOU haven't been encouraging or supportive, it just means that it isn't something our PWP wants at this time. Maybe never.

To Carl, NOT taking charge as long as he can is the true angst of this disease. But, that is Carl...when his neuro asked if I walk with him, I said, "Truthfully? NO! He walks too fast...always has!"

Again, don't be hard on yourself..if not now, maybe at another time...or not. Life is like that...never what we plan...hugs and good luck as you continue down this path. You have done well to be, he will or he won't.

By VioletV On 2014.11.04 23:03
My husband has used the LSVT BIG (movement) with great success. He is to have a follow up after 8 months, starting tomorrow, mainly, I think, because he enjoyed his time with the PT who did the work, and because he needs to sharpen his technique.

He also did the speech--was less motivated (we didn't take a break between the 4 weeks of BIG and starting the voice (aka LOUD). I have to say that from what I observed, the speech therapist's expertise was an important element of the program--I'm not sure that I, as his wife, would have been able to teach him the exercises with enough accuracy and energy to make a difference. And, if he isn't motivated it might be a set-up for you to be seen as nagging him to do something that is challenging and requires focus and concentration.

In your place I might contact the LSVT national and find out if there is someone else locally who administers the program as it was designed. Technically I'm surprised the person is allowed to call it LSVT if s/he isnt delivering it as it was designed. Just sayin'


By umajane On 2014.11.05 00:19
My husband did the LSVT BIG but was not motivated enough for it to make a difference. He did go a few weeks and I had a personal trainer follow up with him at home.
He could do it but his motivation is just not there. I can only encourage but motivation comes from within and it's not happening for him. Its so sad because I think he could do more but would rather watch TV or do something passive. It used to make me crazy but now I am just accepting it. He is not unhappy...I just wish for more.......

By Lynnie2 On 2014.11.05 09:13
Thanks for the input. He hasn't said what he wants to do, but I doubt he wants to do anything.
I agree that I would be helping him mostly as the therapist can only see him once a week.
My daughter said that if he doesn't do anything he is letting this disease take control and he is too young for that.
My problem is that he has never taken hold to help improve himself except to do some exercising on his incumbent bike or walk around the block.
He didn't like going to the Support Group and if I mention about his posture, like leaning over more, he gets his back up.
So we'll see what happens.
Also the last time we were at the doctor's I want to mention about therapy and he didn't want me to say anything.....

By Lynnie2 On 2014.11.05 10:56
Good news.
I asked him if what he wanted to do and he didn't know. I said you can't let this disease take over your life and take control.
He said what would he have to do and I explained about writing down 10 sentences that we would use during the day...... even "Could you please pass the salt" and we would practise them.
Then later they would add more words and sentences to practise out loud.
It would be up to me to motivate him since the girl can only see him once a week.
He said okay, so I left a message with the girl. We could just try it on a trial basis and if he felt it wasn't working out, we could stop.
Anyway, I take anything at this point..........

By jcoff012 On 2014.11.05 11:59
Good news for you...

As I respond, Carl just left to go for his daily walk...he walks two miles in 45 minutes...a brisk pace because he live in a hilly area...there are mountains up the street!

To each his own, as I believe we are all responsible for our own life, as long as possible.

By the way, listen to your own heart for the path to take...your daughter is expressing her feelings, but so many others say the same...and, I have to side on the PWP on this...A PWP, or a person with ANY chronic disease, did not ask to have to manage this, but has no choice. They are battling a demon and the demon will win...for us to say they are giving in implies that they have as much control over their lives as we who are not ill. I am not saying she is wrong in the way she views your journey, but she is truly outside, looking in. I can say this, because OUR oldest daughter has been in denial since this all started...She has been cruel to me, saying PD is no big deal, everyone dies from something, to dad just needs to forget about it and stay normal, you cannot tell... (He has lost 55 pounds, stoops, shuffles his feet, has tremors on the left side and in his face and started on the right two months ago...get past all of that and you see the blank stares and the loss of mobility when he have to be blind NOT to see it!)

I am so glad for you that he will try now...but, remember if it doesn't work out this time, maybe he will try again later. Hugs to you both and good luck...After all of that, I really do commend you for being proactive in remaining positive...pick your battles, as my wonderful Dad always said.

By Lynnie2 On 2014.11.05 13:48
I understand what you are saying, but from the very start he put his back up if I suggested something to help and now he has many symptoms such a stooping, tremors, softer voice, memory issues, following directions such a working the microwave, etc. ,
working with numbers, talking, not able to roll over in bed properly, etc.
Most of these he can't help, but the posture could have been helped at an earlier time to make him stand up straighter. He is 6' 3" and used to have good posture and was even an army cadet in high school, so it is hard to see him walk the way he does now.
The MDS told him to start reading out loud 2 years ago when he first started having problems with speaking, but he never did. I take this therapy as a sign that he is at least going to try and hopefully for his sake as much as mine.
If I see he is having problems with it, we'll have to stop of course, but at least he is going to make an effort. The girl said it could be on a trial basis and stop anytime.
He also did his exercises today on the incumbent bike. He also walks around the block, but going the distance your spouse goes would be too much for him. He tires easily so he just does what he can.
I thank you for your concern and will let you know how things are going.
We might be able to get an apt. next week if I hear from the girl, but she is on holidays the following week, so it might be later when we get started.

By jcoff012 On 2014.11.05 18:16
Lynne, a quick aside...LSVT was completely covered for Carl...all 12 weeks! Carl was a Marine, so I give that a LOT of credit for his persistence...he has always been stoic...this is really difficult to watch...He told our five year old grandson, "It's ok to hug me hard...Grandma is afraid to hug hard now; I miss it." I had to leave the room so he wouldn't see me seems a great many things are not lost on our PWP...made me sad...

By Lynnie2 On 2014.11.05 18:25
Thanks. I believe it will also be covered here. I live in Canada so the medical is very good, and he also has good benefits from his job he retired from.
The girl didn't say anything about the cost issue so I think we're okay.
Thanks again.

By carman96 On 2014.11.06 10:25
I think any kind of speech therapy helps, and if you can do the LSVT that's great. For us, I have a hard time following through with the exercises at home. My husband is going to speech therapy once a week. She does some cognitive exercises, then voice and swallowing exercises. His tongue and muscles are weaker on the left side they found out from the swallowing assessment. His voice is soft but most of the time it's loud enough to understand.
He's also going to physical therapy once a week. Medicare will only pay for so many sessions at a time.

© · Published by jAess Media · Privacy Policy & Terms of Use
Sponsorship Assistance for this website and Forum has been provided by by people like you