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Topic What to expect with LSVT... Go to previous topic Go to next topic Go to higher level

By jcoff012 On 2014.01.25 22:54
Carl will begin four weeks, four times a week for an hour a day with LSVT on February 2. We have read about it, watched UTube videos, been to a meeting about it, but still do not know anyone who has been through the course.

If any of you, or your PWP has gone through this, can you please take a few moments to give us some idea what to expect...and, after you stop going, does it help? He will see his neurologist about a month after his sessions end, but it would help us prepare if we have some idea what to expect. Thanks ahead of time, Jane

By VioletV On 2014.01.27 21:00
Hi Jane,
Yes, my husband, PWP, has had both the LSVT BIG (physical therapy) and LSVT LOUD (voice/speech therapy) programs. For each we luckily had therapists who came to the house four times a week to administer the program (paid by Medicare -- a good home health rehab company here).

He did the BIG program first, and I think it made a real difference. Before that we used a gait belt almost any time he walked outside of the house. Now the gait belt is put away in a cupboard in case we ever need it, but he hasn't wanted it since early September. He does the exercises every morning (he was an athlete in college - in the 50's) and the attitude toward training lasted, so he's very conscientious about it.
With BIG you should do it with him since it helps the PWP to have a coach who knows the exercises. After 6 or 8 months I rarely do them with him, and he feels like I'm being a bit of a pain if I remind him to "reach".

The benefits of the BIG program are in helping him to take bigger steps -- less of that PD shuffle, so he moves much more safely. His posture is better, his face is more animated. He is more able to move himself in bed (now- now -- that's not what I mean) tho I still have to help him lift his legs onto the mattress. Overall he is a lot more aware of his body, and of being deliberate in movement. He climbs the steps to our bedroom much much more easily. He gets into and out of the car with very little help, and can shift his position/weight in the car seat. He showers more independently and has strategies for managing the stiffness/bradykinesia. His balance is hugely improved. He has more flexibility in ankles and feet, his torso moves more easily. I've seen him lose his balance (in the normal way-- the dog getting in the way, or whatever) and catch himself quite unconsciously. Some of those gains are from other help from the lovely OT who did the BIG program. A big bonus--she and her husband had an immigration/asylum case -- and my husband did pro bono asylum legal work for 10 years after he retired--so I know it has helped him to have her value his advice, and to have his expertise respected by her. [They expect to get his green card tomorrow!!]

As for LSVT LOUD I think we made a mistake in having the LOUD program start right after BIG. We should have taken a break. Instead he worked at the voice exercises over the 4 weeks, but did not really continue them. I think his voice is stronger, but we both have decided that if I can't hear him it's because I need to adjust my hearing aids (lol!!). I think maybe next summer we'll re- up for the voice program again.

Overall -- yes I think it is worth the time and effort, but the person needs to integrate the exercises (which take about 15 minutes for each type) into his/her daily routine.

Whew! Didn't know I had so much to say. Hope it helps!

VV

By jcoff012 On 2014.01.27 22:55
Violet, you made me cry! THANK YOU! Your beautifully crafted post was wonderful and I read the entire thing to Carl. He said, "Wow, that was GREAT! Tell her thank you!"

He starts next Monday, so on your advice, I will go with him the first day (I wish I could go each time, but I need to watch our grandson, Nigel, so it isn't possible...

We will wait for the LOUD sessions. We have our monthly meeting this Saturday, so we will get a lot of good information there, too.

Again, Violet, thank you. Traveling down this road seems so much simpler and less scary with kind people such as yourself to lead the way.

Hugs and love, Jane and Carl!

By Freespirit On 2014.01.28 12:33
Hi, Jane:

My husband completed the LVST LOUD therapy and we found it very helpful for him. At the time, he was having a lot of swallowing issues, choking, etc He was even on a feeding tube for several months. After completing the voice therapy, he was able to have the feeding tube removed. This was probably 3-4 years ago. We kept up with the exercises, but then got lazy. Now he is having difficulty with swallowing again - this time worse, and I'm looking at starting the LVST LOUD again with him. Unfortunately, the PD has progressed considerably since the first time and he is not as mobile as he was the first time. This inactivity has led to more congestion in his lungs which, of course, can lead to pneumonia (which is so common in PD). Sometimes I feel like I'm fighting a losing battle, and really in the end I know I am. . . but I am determined to make my husband's quality of life the very best that it can be!

We also did the BIG physical therapy which was helpful for him, although not as helpful as the voice therapy. We had to quit mid-way through because his prostate cancer returned and we had to deal with that instead, but I continued to do the exercises with him at home to completion. Overall, I think both are beneficial to varying degrees, so I would encourage anyone thinking about utilizing these therapies to do so.

I wish you and Carl the very best!

By Witsend On 2014.01.28 19:07
I know it is a great program, and my husband could have benefitted greatly from it. Unfortunately, he only went for the first week and then decided he "didn't need it." He still thinks he speaks normally, even though the speech therapist was very clear about the fact that he is in denial. Sadly, I continue to say "What? What?" and he continues to yell that it's my problem and I need to get help. He's actually worse now than he was before we went, just because he has so thoroughly convinced himself that it's all in my head. Some days it's all I can do not to run from the house screaming. Now he thinks his upcoming DBS will help his voice, even though the neurosurgeon made it very clear that it won't help that.

Anyway, it is an awesome program that is extremely helpful to people with PD. Unfortunately, in my case, my PWP doesn't think there's anything wrong with him, and I continue to get blamed for everything.

Joni

By parkinit On 2014.01.29 01:07
Joni -

You are not alone in being held responsible for "not hearing." My spouse asked me to take a hearing test because he said I was having hearing problems. My hearing was great. Uh oh. Now he couldn't blame me any more. Maybe you need to have a hearing test, too, girlfriend!! ;)

By jcoff012 On 2014.02.03 20:00
UPDATE...We went to the first session of what was supposed to be LSVT, but this therapist was GOOD! He spent over an hour evaluating Carl from head to toe...and decided he would do best with the PD portion if he worked on his back muscles, neck, and shoulder...He also noted that he breathes without properly using his diaphragm, so he gave him breathing exercises to do.

We were extremely impressed by the entire process...he is the first therapist to really listen and come up with a plan for success. He changed the dates of the next two weeks' therapy to concentrate on his primary problems, and added two weeks of LSVT to the end...a bigger commitment, but we are both pleased.

A few comments we appreciated..."As the disease orogresses, movement and staying active are key. It will be increasely difficult, but try, you must." And, "Nothing we will do will take away the tremors or lessen them, but may make them more tolerable." and, to me, the best was, "When you are finished here, you will move better, stand taller and will swing your arm when you walk. We are going to help you manage the PD symptoms. That is a promise."

Honest answers to questions. No false promises. Well, one big one...A lot of stretching, a lot of work with muscles that are stiff and hurting, and a LOT of exercises!...and with that, the promise to do the best he can to help Carl as he disease progresses...

We are pleased with the initial visit. Stay tuned for updates! ;)

PS...The young therapist (about 35 or 40) was buff! lolol Oh, my...eye candy! lololol

I told Carl on the way home that he reminded me of him as a young Marine, and he reminded me that "there are NO ex-Marines, only Marines." LOLOL

By JulieB On 2014.02.03 20:52
I looked it up and it appears as we have a couple of therapists in our area who specialize in this. I'm encouraged to sign Michael up after reading so many wonderful accounts. Thank you all... xoxo

By VioletV On 2014.02.03 21:34
So glad, Jane,

there are bright, young, dedicated therapists who do understand PD, and who have the patience to work well with our PWPs. We've been truly blessed to have two such therapists who have helped my husband a great deal. And having this kind of attention, on its own, helps him to feel less isolated.

Glad you had a good experience!

VV

By umajane On 2014.02.04 18:34
Thanks to Jane I have an appointment to decide is the LSVT program will be a good fit for my husband. We have an appointment next week for an assessment. The facility is only 10 minutes from our house. I am optimistic!! This forum is such a wonderful resource.

By BCS46 On 2014.04.07 01:54
Had not heard of this. Thank you for asking question and for all who responded.

I get so fed up saying "what did you say" so many times each day!!!

I ask my PWP to look at me when he wants to talk to me, to not try to talk to me when I am unloading dishwasher, feeding cats, etc. etc. as I can't hear him & most annoying, but........same old same old.

Will inquire about these programs in our area, as he is also shuffling & stubborn about getting out & about.

By VioletV On 2014.08.31 12:43
Bumping this up in response to Trapper's recent inquiry.

VV

By jcoff012 On 2014.08.31 13:57
Violet, I purposely did not respond to Trapper's post because Carl hasn't had the voice part...Medicare only allows one of the two parts a year, so Carl chose the physical part. It was completely free through Medicare...we only paid for the gas to get there, since it was a half hour away! Carl still does the exercises daily and has added an hour walk outsie, and he works with weights.

By Witsend On 2014.08.31 16:50
The LSVT programs are great, and many people have benefitted. Since my earlier post about my husband's experience with it, he has tried it again. Sadly, and this is NOT the case with most people, he is unable to hold on to the exercises because his memory is gone. The therapists have been very kind about that, but it is an agonizing outcome for us.

By VioletV On 2014.08.31 16:55
Wits, I'm sorry to hear about outcome. Unspeakably difficult.

As for Medicare only paying for one a year, we had luck with our rehab company that has LSVT Big done by an OT and LSVT Loud done by a speech therapist, so they code differently. May vary state to state, perhaps.

VV

By jcoff012 On 2014.08.31 18:27
Witsend, I am sorry to hear that...Carl is very high functioning...he has lost way too much weight, speaks too softly, had terrible tremors on his left side, can no longer swing his arms while he walks, etc...but, we have yet to face a great deal of cognition problems. Being one who had OCD before his dx, he still is with everything...hence, the obcession with exercising, walking, etc...I hope others give the LSVT a try...one never knows what will or will not work...up to the PWP, I suppose. Hugs, Jane


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