What's the point?

[onlyme]

I was dx in 2006. Since then, betaserone for two years, then Tysabri (on my 88th infusion), plus everyday I take: Nuvigil, Baclofen, Lexapro,Cymbalta, Ampyra, vitamin D-3 (5000 units).

I did have water PT and daily excerises (free) for the first 5 years, but the co-pay for the PT was $35 per visit and it was costing me $70 a week. That might be ok, if there was some improvement or some benefit. But I have progressed from a cane, to a scooter all the time except at home when I either wall walk (with my cane) or crawl.

My neuro and wife want me to go back to PT again, but I see no reason to because it will suck what little energy I have away and suck $150 a week from our finances. I can barely lift my left foot/leg and cannot lift the other at all.

My thinking is that if I can't lift the legs, what go will PT do?

I just don't see the point. Can someone explain it to me?

Thanks!

[jreagan70]

Hi onlyme:

If you were doing your own PT or exercising regularly on your own, then an argument could be made for why going to formal PT isn't necessary. But it doesn't sound like you're doing anything on your own.

The point of PT is to try to keep the rest of your body healthy and fit enough to support whatever isn't working because of MS.

Even if you can't lift your legs, the rest of your body needs the benefits of movement. You blood needs to flow to your brain and other vital organs. Not moving causes blood to stagnate and pool, depriving the body of the oxygen it needs to function properly. Stagnant blood can form clots, which can lead to a stroke or heart attack, or the death of organs. Lymphatic fluid doesn't have a pump like blood has with the heart, so it needs to pumping action of muscle movement to make it flow.

If you want to continue to wall walk or even crawl, those muscles have to be strong and healthy, and they have to be exercised to stay strong. You can easily lose the ability to crawl not because of MS, but because the muscles have atrophied from non-use. The saying "use it or lose it" is fully applicable to you muscles and brain power.

Exercise has also been shown in several studies to be just as effective in fighting off depression as is medication. And it doesn't require vigorous exercise to get the benefits.

And even though you feel like PT saps your energy, studies of people with MS have shown that exercise, when done properly, actually helps to fight fatigue. The body has to generate some energy in order to have enough energy to move your body and even perform automatic body functions. The right kind of exercise and movement can do that, and you can get that from PT.

So the point of PT isn't just to have you try to lift your legs and perform some stupid task. The point is to try to keep the rest of your body functioning as well as it can to support you in spite of whatever MS doesn't allow you do to anymore.

Maybe you can think of PT as an expensive gym membership that's fully tax deductible. (Other hobbies aren't, you know. )

And really, if it's not to make your life better, what's money for?

[Waydwnsouth1]

I hear you "What's the point"? At my Neuro appointment this past Friday she suggested PT and I quashed it. Will it strengthen my legs, will it help me walk better? No, I don't think so. I really don't know what that point is either.

[Mamabug]

Yup; I agree.

And, BTW. Welcome back. I see that you've been a member for a long time, but haven't posted much and have been gone for about 5 years. Hopefully, we can be supportive of you and you'll keep returning.

Hi onlyme:

• The point of PT is to try to keep the rest of your body healthy and fit enough to support whatever isn't working because of MS. Even if you can't lift your legs, the rest of your body needs the benefits of movement. You blood needs to flow to your brain and other vital organs...

• Exercise has also been shown in several studies to be just as effective in fighting off depression as is medication. And it doesn't require vigorous exercise to get the benefits...

[Barrister16]

JReagan thank you for your wonderful explanation of the purposes of PT! I have never heard it explained liked that before. Your explanation makes so much more sense when you think of PT as you do as opposed to thinking PT is going to help us walk again.

I agree that sometimes I feel like "what is the point" of PT when it zaps all of my energy. I have found that when I stick with PT and exercising on my own that I eventually have more energy and feel better. It might take a few months of PT & exercise before you feel better but it is worth the wait!


A friend of mine who is a Speech Pathology advised me that I must continue to keep fit sot that I will be strong enough for the next attack.

[Jules A]

Off topic a bit but I'd discuss the SSRI-Lexapro and SNRI-Cymbalta combination with your psychiatrist. If your mental health prescriber is not a skilled psychiatrist a second opinion might be worthwhile.

[onlyme]

What's the point?

I appreciate the input Jreagan, but I still do excersises and I think I get a lot of 'blood pumping' movement just from moving from the kitchen table to the bed and bathroom several times a day. It seems like a waste time to me because after I do my excersises and move around in my home I don't have the strength or energy to do much else. I probably get more of a workout from getting dressed, making my way down the stairs, and into the car to go to PT than I get from the PT.

And to set jules mind at ease, I take the antidepressants because my dr. recommended them to help me. I've always told him that I'm not depressed, but he said they have other properties that help my other symptoms.

I don't know what stage you all are in with your MS, but this disease has taken a lot from me and my family. I'm a very upbeat person and still try to do all the thing that I used to do, but it's obvious to everyone that knows me that this is not going to improve, ever.

So, I'm just trying to make my existence a little less difficult for me and my family.

But thanks for the kind words and suggestions.

[SNOOPY]

Hello onlyme

it's obvious to everyone that knows me that this is not going to improve, ever.

This is true for many with this disease.

MS is considered a chronic debilitating disease (I don't believe that has ever been taken out of the description of the disease).

I don't know what stage you all are in with your MS, but this disease has taken a lot from me and my family.

This is true for every single person with this disease, whether it's early on or in the future.

The point to exercise and PT is to try and maintain the mobility and/or function you currently have. It takes as little as two weeks to lose strength and muscle. Even those in wheelchairs are encouraged to exercise.

Even if your legs don't work well what about your upper body strength? Without trying to maintain your strength and muscle you are essentially weakening yourself more which can lead to you needing more help from others for your daily care.

I don't mean to sound harsh. This disease sucks but all we can do is keep trying.

[mjan]

First of all, I am sorry you are going through a tough time. I agree, as the co-pay for Pt stopped me from continuing for a non related MS problem.

BUT I learned from one of the drug sponsored luncheons that they have a MS patient to tell their story (and promote their drug?). This woman was walking around just fine, not using any aides. I teased her about how you couldn't tell she has MS. She laughed. THEN I heard her amazing story.

She was first to be on a clinical trial for Tysabri. She was improving. Then they had those couple of PML deaths and it was taken off the market. She was devastated as she was certain it was helping her. She started to decline. THEN she learned she was never on Tysabri, but the placebo. HUH?

So she kept EXERCISING and EXERCISING, while trying other drugs. She credits her ability to go from wheelchair bound to running marathons now due to EXERCISE! Why? Because it allows the brain to heal itself best it can. Now she is on Tecidera or whatever its called AND she gets up at 3AM to exercise at 5AM before getting her family up and getting to work. Even the presenting Neuro was so amazed at her story.

And I heard another story of a man so stricken down with MS he could no longer walk or feed himself. He too is running marathons...took awhile, but I saw him and heard his story in person too.

DO NOT stop exercising. Ask PT to help you design a home program and continue your swimming etc. I bet you'll see improvements..just sayin!

Let us know how you are doing ok?
Hugs, Jan

[KatieAgain]

Another off topic.

Please stop wall surfing and get a rollater. Wall surfing is dangerous. Crawling is not really good either. Contact your NMSS to see if they can get you a donated one.

I will also agree that doesn't matter if you are walking or not...you need exercise. But of course that is your decision. I hope you don't quit.

[Jules A]

And to set jules mind at ease, I take the antidepressants because my dr. recommended them to help me.

My point was that is an unusual combination, so my guess was they weren't prescribed by a psychiatrist. Again I'd consider reviewing it with a psychiatrist.

[Thinkimjob]

[QUOTE=onlyme;1488713 I probably get more of a workout from getting dressed, making my way down the stairs, and into the car to go to PT than I get from PT.[/QUOTE]
Oh I hear you! The argument is that PT exercises help improve/ maintain muscle and movement.

Yep. Exercising in the water is also meant to be great. A float in a pool would be lovely, but the whole getting there, getting dressed, undressed, drying off, getting dressed again is much more than I can take at the moment.

Walking, well rollating, to the bathroom and back is a major expedition for me. Thirty-nine steps, four or five little rests along the way.

And I have to set off before I absolutely have to go, or I won't get there in time, so I nearly meet myself coming back.

Everything exhausts me. There's a joke in Blackadder: "Life is like a broken pencil - pointless".

Still, one day someone might invent a really good pencil sharpener or give me a brand new pencil.

[tejokid]

My MS symptoms began when I was just a kid, and I'm in my mid-60s now, so the accumulation of physical glitches has added up to a lot of mobility problems. What grabbed my attention from your thread was your mention of having to navigate stairs in your house. I've moved enough times to know I never want to do it again, but you've got a house that's fighting against your very well-being. Consider the very real possibility that the time might come--because of an exacerbation or an increase in disability--when you no longer have access to the upper half of your home.

Maybe you can install a chair lift, but if not there could problems ahead. It might be useful (for any of us) to start from your driveway and take an objective look at the environment in which you live. If you need--or might need--ramps, do you have them? Are there thresholds that are bumpy and difficult to navigate? Are the doorways wide enough to accommodate a scooter or wheelchair? Can you get into the bathroom with your scooter? Do you have chair-height toilets with grab bars nearby to help you up? Do you have grab bars positioned to help you in and out of the shower? Do you have hazards--laundry baskets, kids' toys--that can trip you up?

MS disabilities can be so all consuming that what we experience physically can sort of blind us to other things that affect our lives. Some forms of physical therapy can help us do the things we have to do better. It might not help your legs much, but it sounds as if you require a lot of upper body strength to meet your life head-on. Maybe that's where PT could help you most.

The advocate I hired when I was applying for disability asked about how I did things at home--after listening for a while he asked, "Why are you doing things the hard way?" And he was right--I had to re-think my approach to a lot of things. It's hard to step back and see ourselves objectively, but it can help. Even now, more than 20 years later, I hear his voice reminding me that there are different ways to get things done, and nobody's handing out trophies for doing it the hard way.

Your grit and determination to deal with your challenges are really remarkable, and I wish you the very best of luck.