LSVT BIG: I started the program last week... - Cure Parkinson's

Cure Parkinson's

25,283 members26,589 posts

LSVT BIG

Lionore profile image
33 Replies

I started the program last week. For me, it was brutal, mostly because I had to be up at 4:30 am to make an early train for an early appointment. The entire trip, door to door, is over an hour. I also developed another cold, seems like I have had more than my share this past year. However, I can already see and feel a difference. The exercises force you to stretch and move BIG as they say. My SO noticed that I am standing with better posture, walking more normally and doing things like fastening my seat belt more efficiently. The exercises are painful but less so as I keep practicing.

The downside is that they must be done for life. Not much of a downside! I see my neurologist next month when the sessions are over. I am hoping that if I am diligent about exercising in this way, plus getting back to my "fun" classes at the gym, that he won't recommend any more medication.

Anyone else here doing BIG?

Written by
Lionore profile image
Lionore
To view profiles and participate in discussions please or .
33 Replies
Beckey profile image
Beckey

I would love to! I hear such good things about it. I haven't found one in my area though. :-(

p.s. Beautiful picture!

Lionore profile image
Lionore in reply to Beckey

Becky, where are you? If there aren't any providers in your area, perhaps your local hospitals PT and OT would be willing to train . Check out the website lsvtglobal.com

Beckey profile image
Beckey in reply to Lionore

I'm in San Francisco! Wouldn't you think ...?

Hikoi profile image
Hikoi in reply to Beckey

Beckey have you looked on this site? Seems there may be practitioners though no class

lsvtglobal.com/clinicians

Beckey profile image
Beckey in reply to Hikoi

Thanks, Hikoi!

barbarapal profile image
barbarapal in reply to Beckey

You can buy the DVD on Amazon. $45 plus $5 shipping. I took the course and bought the video. It is well worth the money.

Barbara

Don_oregon_duck profile image
Don_oregon_duck

I just completed BIG. It was life changing. I ditto what Lionore said. And a BIG plus is my trainer would ask me what difficulties I had with Parkinson's. Some of the things we worked on, handwriting got small, after writing lessons it is normal. I had trouble putting on my shirt and jacket, not any more because she showed me how to do it differently. I lost my ability to type with both hands, typing exercises has restored 75 % of my movements. I am swinging my right arm with only giving it 10% thought where it used to take 60 - 80% thought. Those benefits were in addition to the physical benefits of the BIG program. Would I recommend it, most definitely.

Lionore profile image
Lionore in reply to Don_oregon_duck

I may ask the therapists about typing. On my iPad I only use my dominant, non affected hand anyway, but when I was working I began to notice that all the keyboards seemed to be defective.

haugenk profile image
haugenk

Have been doing BIG for 6 months now, and it works - definitely. Hope it works for you as well. The trick to carry it out is to make it a habit, I think :)

goldengirl91 profile image
goldengirl91

Hi, I am from New Zealand, and did the LSVT Big programme nearly 2years ago. The physio. came to my home for an hour 4 days a week for 4 weeks. I try to do the exercises 4 to 5 times a week, and find that it keeps me in fairly good condition. I was taught to use my mind more when doing tasks, walking e.t.,c.

Lionore profile image
Lionore in reply to goldengirl91

Nice that the therapist came to you!

stevie3 profile image
stevie3

Hi, no, but I do do PD warrior, which is similar principles and have had similar results to those you've described. Only problem is it's a four hour round trip to see the clinic nearest me that has physios trained in the technique. Although they run a group, I can't attend it because of distance so sometimes it's hard to keep motivated, ploughing on alone. But I've got the DvD and I'm pretty meticulous about doing it because, as you've found with BIG, the results are so worth it.

Helen-cott profile image
Helen-cott in reply to stevie3

Hi Stevie. I live in South london and have been hoping to find somewhere to do either the BIG programme or the PD warrior but so far it seems london is remarkably lacking! Where is the clinic you go to? Helen

Lionore profile image
Lionore in reply to stevie3

Thanks, fellow championship s, for your great feedback! I guess in the end it's about effort. We really don't get a day off, unless we are sick.

I forgot to note several helpers. I am wearing a toe crest on my affected foot.My walking was painful from toe curling and the gel device forces the toes to stay in place. I have the BIG DVD, and the OT had me wearing yoga fingers so I bought a pair. I hAve to consciously spread my fingers and again, just a way to help. The getting up and down from a chair hurts my arthritic knees, so I am trying to take golden milk with coconut oil every day and cut down on sugar. All this consumes my energy, but it's worth it. I dread being dependant and not being able to drive.

Serenity_finaly-1 profile image
Serenity_finaly-1 in reply to Lionore

Thank you for sending a picture. I usually don't know and give bad advice. Walking backwards will untie those toes and it only takes a few steps.

DONNIE SAYS BACKWARDS - ok maybe not

youtu.be/GMpTqa8iICs

Lionore profile image
Lionore in reply to Serenity_finaly-1

Haha!

stevie3 profile image
stevie3

I go to a clinic in Salisbury. I think there's one near Portsmouth too.

etterus profile image
etterus

The a 68 yo retired PT from southern Arizona. Tucson is the home base for the LSVT BIG program. I was a research victim of DR Beckey Farley PT PHD, the genius of the PT aspect. It is really the best approach but must be done for life.

Cindy27 profile image
Cindy27

I completed LSVT BIG and had a love/hate relationship with the program.

I hated it because is took up so much of my time and energy. I drove an hour each day to class, exercised an hour at the class and then exercised another hour of LSVT excercises and walking (they advised me to still complete my normal walk everyday). So I had little time for anything else as I needed lots of rest between exercises.

On the other hand, after completing the program I felt and looked healthier than I had in a long time. The exercises helped with my posture, strength, movement and stability. I was glad I completed the program in the winter as I may have dropped out had I tried to do it during our short Michigan summer!

I bought the DVD on Amazon and periodically do the excercises. Since I feel fairly strong & heathy right now, I prefer to spend my time outdoors, enjoying friends and family and doing my hobbies. I'm sure I will find the right balance between excercising (work) and playing soon. 😊

DianeF profile image
DianeF

I did the LSVT BIG AND LOUD and loved it. Unfortunately some of it aggravated some pre existing back problems but I modified the exercises a bit and incorporated them into my daily routine. Prior to the program, I was having great difficulty getting up from a sitting position. . . Not anymore! I also love the loud voice exercises. This program gave me some hope. I think everyone with Parkinson's should have access to this program.

Lionore profile image
Lionore

Hi Diane,

Getting up from a chair unassisted has definitely improved with BIG training but I won't attempt getting on or off the toilet without holding on to the tub, seat, etc. in the middle of the night when my body is stiff from being inactive. I still have difficulty with low, squishy upholstered furniture. I've been this way for many years before PD and avoid sitting on sofas of this type if I'm in someone's home. I am not graceful, believe me!

JohnPepper profile image
JohnPepper

In 1998, I found that If I consciously control my walking and other movements, I am able to walk properly, without shuffling. When you think 'BIG' you are doing just that. If you learn how to walk consciously, stand erect consciously, bring food to your mouth consciously and also write consciously, you may never have to catch that train in the morning for the rest of your life.

I have been off all Pd medication since 2002 and now, at the age of 82 I live a normal life, even though I still ave Pd.

It costs nothing to do what I do, and it works for a large number of people. I just have not turned it into a business.

Look at my website, reverseparkinsons.net and read over 400 articles on how to deal with Pd symptoms. It costs nothing!

Lionore profile image
Lionore in reply to JohnPepper

John, thank you! I am slowly getting it into my PD brain that ALL conscious activity has to be deliberate, all the time!

For years I worked, slumped over, in front of a computer screen, and this poor posture continued whether I was driving, sitting at the table, or slumped on the couch. I thought, prior to doing BIG, that if I exercised an hour or two most days, that would give me license to shlump around the rest of the time. Standing for any length of time has been painful; now I see why. I am finally understanding that the BIG program continues when I am done the formal exercises, just going about my day. Nice to know that each and every deliberate decision to sit up straight, walk with big steps, etc. is an act of defiance against this $#$&^**(%#(@! disease!

JohnPepper profile image
JohnPepper in reply to Lionore

So! How succcessful ave you been at this 'Conscious' stuff?

Lionore profile image
Lionore in reply to JohnPepper

I'm good except when I am tired

JohnPepper profile image
JohnPepper in reply to Lionore

Did you go through the recommended times for doing the fast walking, slowly building up to one hour, three times a week?

Lionore profile image
Lionore in reply to JohnPepper

Not yet. Will do after BIG. I'm doing a to of walking just getting to the therapy as it's a nice walk from the train station. When I come home I sack out for hours after lunch, do my exercises, make dinner for us, shower and gratefully retire.

JohnPepper profile image
JohnPepper in reply to Lionore

The goal is to walk for one hour, three time a week at your highest speed. When you do that, I think your brain produces a chemical that repair the damaged brain cells. It is called GDNF and it is a natural growth factor. In my case, I think it is responsible for getting better. Try it!

Lisl profile image
Lisl

I completed the BIG programme a couple of months ago. It was amazing! I'm very fortunate, to have a clinic that does it just around the corner. After the first week I felt I couldn't go on as it was absolutely exhausting. But it did get easier. I cancelled everything else for the next three weeks and focussed on BIG. It was worth it. As other people have observed it can be tailored to a person's individual needs. Doing up buttons, getting my card and notes out of my wallet, and how to deal with freezing were some of the issues we addressed. I still find it quite difficult to do the exercises twice a day if I'm fatigued. However, being able to stop the freezing has been a lifesaver. The BIG programme gives you strategies to deal with such things and it really does work! I find that I'm using the walking and anti-freeze strategies every day. Apart from making bigger movements one of the really interesting things I learned is how to both use and avoid visual cues and triggers. PD is an incredibly visual disease!

S70AWD profile image
S70AWD

I have been doing the LSVT BIG exercises for about two years, I think they help. I also understand about getting up early to make the 45 minute sessions, I had to go before work every day for 40 days. I am impressed by those who said the BIG program was tailored to their needs, i.e., doing buttons, improving small handwriting, etc. I was simply taught a pre-packaged series of exercises, (stretching and balance), and then sent on my way to sink or swim. No one ever asked me about what difficulties I was encountering. I was given more guidance by friends and family about helpful devices and different ways to do things than from the therapist. I also did the LSVT LOUD program and felt it did more harm than good. It's very possible that we do not have the best therapists around here in northeastern Pennsylvania, we're kind of a backwoods area.

Beckey profile image
Beckey

Does insurance cover any of these programs -- BIG, LSVT, PDWarrior?

Lionore profile image
Lionore in reply to Beckey

My insurance Is Medicare and a Medicare supplement and fortunately I have no copay for lsvt BIG. My hunch is that in the US, if your doctor writes a script for it, you are good to go; however, too many people have to meet a high deductible and a high copay for each PT and OT session. It's worth it if you can scrape up the money AND are totally committed to doing the exercises DAILY, for life.

At the moment everything hurts, due to arthritis, but I can see a difference and I am taking it one day at a time. PD Warrior may not be available in the US, someone correct me if I am wrong.

Annie81963 profile image
Annie81963

I started 4 weeks ago and love it !

You may also like...

Big, big trouble Houston

a foot operation about 7 weeks ago and with no exercise i feel like dying. I really do. So I tried...

A big step forward in fight against Parkinson's disease

BIG and LOUD Program

through the BIG program. However, I met with the physical therapist in my area that runs the...

Biome and Butyrate Big News

Big Fat Lie, Nutrition Policy | Nina Teicholz