Exercise and ALS (Continued)

[diana-belland]

My husband and I bought a treadmill about a year ago and put it in our finished basement.   I used it faithfully every other day, walking at a very slow speed, holding on to the sidebars, for five minutes at a time with three minute rest intervals for a total of 25 minutes of walking.   I enjoyed doing this but when I had my ALS Clinic this past July, the PT cautioned me against using the treadmill due to the risk of falling.  And using the basement stairs can be a formidable challenge for me, so I’ve given up using the treadmill.

Now I walk for five minute intervals on the main floor using my Drive Nitro rollator.  I’m trying to get into the habit of doing this every hour and and I’d like to try to build up longer walking times.  I walk using my shoes with my AFOs.   I also do seated leg exercises, and arm and torso exercises.  I sometimes use 1, 2, and 3 lb weights for my arms and chest.

I used to do Pilates exercises on a floor mat, using stretch bands for some of the moves, but recently I’ve been finding it harder to get up from the floor, so I do Pilates on my bed now.

I have been procrastinating about getting a recumbent stationary bike,  but I would love to have one!   I enjoy using the ones at the Y, but with winter coming on, I really need to have one at home that I can use every day.

I would love to hear recommendations from pALS who own recumbent stationary bikes.

Thank you!

[Dagmar]

Prior to my diagnosis in 2010, I was physically active: daily swimming, yoga, pilates, walking… my professional career was in wellness & fitness.

During the first few years of my ALS, I tried to keep up the swimming and used a recumbent bike at the rec. center to substitute for walking. I stretched in their gym.

When traveling to and from the rec. center became difficult, I opted to exercise at home. My cardio is on a rebounder (with special hoop to hold onto), I do standing exercises, chair yoga, stretch out on the bed and get down on the floor for my OS Resets. In fact, I view my whole house as a sort of mini-gym!

I think that to exercise at home you don’t need a lot of equipment, but do consider investing in something for your cardio (aerobic) — such as a recumbent bike, recumbent stepper or rebounder (like me!), etc. Something safe, you’ll like to do and will use 3-5 times per week.

I believe that my dedication to daily gentle (modified) exercise has contributed to slowing my progression over these past 9 years.

 

[frank-e-bock]

Have started a daily routine of massage and movement involving foot bends ,leg bends and tight body leg lowering and neck and shoulder massage.upper body weakening very quickly .when arms are in lowered position still some strength.will try to do some breathing exercises they seem to be beneficial from what i have read on the forums.Being a retired gymnastic coach I realize the importance of muscle memory work the roll it can play in learning and establishing strong connections between mind and body.Merry Christmas have a Turkey waiting for some attention .

 

[jonathan-l-maddock]

Prior to symptoms & diagnosis I was running 4 miles 3 to 4 times a week. I have a slow progression ALS, and I still power walk 2+ miles several days a week (I use an AFO on one leg), and 1/2 hour of stretching each day. I have an elliptical trainer (owned prior to diagnosis), but I’d rather walk outside until I can’t. Eventually I’ll get a recumbent exercise bike.

I’ve been very active my whole life, and I’ll find whatever ways I can to be as active as I can at that moment in time.

Peace and Love.

 

Jon

[jens-buss]

Hey all
I have very good experience with my Berkel Bike.
http://www.berkelbike.nl
You can used in and outdoors which I like a lot during warmer seasons.
So check out the link above.

Jens

[brian-torgunrud]

I was diagnosed 2 1/2 months ago.  I’m 68, retired, and a very active cyclist.  I was riding 5 times a week, club racing, and working really hard for 1.5hrs per race/workout.  I say “was” because I live on the Canadian prairies, so I’m taking a little winter break……..Yoga 3 times a week.     I was told, at my first clinic, that the best thing I can do wrt exercise is not to go to exhaustion and avoid high intensity (I’m paraphrasing).  At my next clinic in 10 days I’ll press them a little more on exactly how far I can push myself – I understand that a more “subjective” definition of exhaustion (eg don’t exceed XX% of your max heart rate) is probably not going to be supported by research/data , so I’m really not expecting more specific guidance, and fair enough.

My main objective is to be active as long as possible, not to be able to ride my bike faster than the guy beside me, but it would be great to have both!!  Having to ride with a group where I’m expected to pull my weight is a huge incentive to exercise hard, but I’d be happy to give that up if it means I can have more time with my family.

Anyone have any thoughts on the relationship between fitness and “longevity”

[jaycat]

I was diagnosed 4 months ago – Bulbar – 10 months since onset. My clinic’s support exercise but not to overdo. If you feel tired the next day , then that is a warning sign to slow down. I still work out as many muscle groups ( weight lifting) as possible with the thought to keep the muscles active and responsive.  Cannot tell if it is working but I am maintaining some strength in the large muscle groups while losing some in the finite such as hands and lower arms.  When the going gets tough I just lower the weights.  Still walking and biking quite a bit. I feel much better after exercising and will continue my regiments for as long as possible. The real challenge is keeping my weight at a steady level. With exercise combined with the disease itself I burn through a huge amount of calories – I fluctuate 4 pounds per week if not more.

From what I have learned – exercise is still very subjective and personal . We just need to monitor our bodies – if we feel strong do it – if weakening – slow down – find an alternative and adapt as best as possible.

Good luck with your upcoming cycling season

 

[brian-torgunrud]

Thx for sharing, Jay.  I’m also finding that the large muscle groups are doing better than the smaller ones – zippers are getting to be a struggle for my fingers lol.  I am trying to listen to my body and take it easy when it tells me it is tired.

[Dagmar]

Welcome to the new members to this forum – – most of our new members are also newly diagnosed…. so, a few basic questions keep popping up. These include: is exercise OK for pALS? and, how much is too much? (we’re told to do what we can…but don’t overdo) – – which still doesn’t answer the question!

First, 10 years of research has established that exercise IS beneficial for pALS. I remember 10 years ago, when the prevailing thought was that exercise would “use up” our energy, it would injure our muscles and would cause atrophy. Pffft! Our body’s basic physiological needs and the muscle’s needs doesn’t change the day we are diagnosed. Muscles still need to move, energy is created by daily movement and atrophy occurs from lack of movement.

What changes is the type of exercise or movements that we should do to gain the benefits.

Our goals are to maintain our current muscle strength, maintain range of motion throughout the joints and maintain our body’s (heart-lung as well as muscle) endurance.

Our challenge is to counter-act feelings of low energy, symptoms that limit certain movements and the mental tendency to just flop into a chair, do nothing and give up.

So, what are the basics to include?

• Some type of full-body movement, low intensity cardiac exercise: recumbent bike, stationary bike, recumbent stepper, swimming to name a few examples.
• Fundamental movements that help the brain and muscles “communicate” — hands-and-knee crawling, rolling side-to-side, arching up torso from front lying, etc. (all toddler movements). I’ve written much about how these basic movements have helped me.
• Range of motion movements for every joint and in every way the body can move. These can be done standing, sitting, laying down… or in a short routine, or even with a light resistance. Do what’s best for your body.

Another adjustment is changing from 1-2 hour workouts to several short bouts throughout the day. Our body’s recovery time is slower and short sessions result in more energy. Pride plays a role here. Overdoing is often due to forced repetitive motion. For example: long hikes or a day with “loads of walking.” Be rational and accept that your body needs TLC.

I no longer call what I do each day “exercise” rather, I call it “therapeutic movement” – – this way, I eliminate the mental image of fitness regimens I used to do in the past… and focus on what my body needs today.

If anyone is interested in specifics of what I do or resources such as videos and links, I will be happy to share them 🙂

[christine-moretti]

My preferred in-home exercise program involves Dagmar’s ALS YouTube videos. I truly enjoy them and feel stretched and relaxed after doing a few videos.

Having been an avid walker for many years before DX, I still find “mall walking” with my rollator and my husband to be highly therapeutic. We try and accomplish a half hour walk three to five days a week.

[Dagmar]

Brian,

Are you asking about the relationship between fitness and longevity prior to be diagnosed with ALS – – or – – how maintaining fitness helps longevity living with ALS?

I believe that being fit prior to diagnosis gives a little edge; in that you are already familiar with regular exercise and can adapt your routines. However it is important to not stop exercising altogether, and when continuing to exercise to adapt carefully.

I believe our brains and muscles have to relearn their communication with each other and how to navigate the world with less motor neurons. That’s why, in addition to traditional exercises, I always go through my Original Strength RESETS (movements of toddlers & infants).  As for longevity? All I say is that I am still moving…10 years now, with ALS.

[autumn-renee-podzunas]

I was exercising prior to my dx of 8/23/19. I was also told not to exercise to exhaustion. I walked on the treadmill and did weight bearing exercises. Now I do PT and OT and do the exercises they give me( mostly stretching and some body weight leg lifts, and balance training. I ride the exercise bike for 30 minutes 3x a week

[marianne-opilla]

Many thanks to all who have contributed to this topic. I am LOVING it!  I am 64 and a prior runner. Always prided myself on my endurance on long races. My symptoms started about 1 1/2 years ago diagnosis Oct 2019. My right hand/arm  is atrophied and I  have bulbar involvement. Gradually stopped running because my legs wouldn’t “go”.  Always did weight training 2-3 X  weekly. I had to reduce my weights because my hand could not support the weights…dropped weights are frowned upon in most gyms. Recently my muscle cramps and twitching have increased significantly after weight training. Not sure what this means… an awakening or a protest riot??  Have reduced my yoga from power to gentle/meditative.  I grieve the loss of my usual exercise regimens, but cannot come to terms with exercise not be beneficial, so I adjust.  I am skiing in Switzerland next week. It will not be my usual black diamond all day skiing but some easy cruisers. And I thank each day I can use my legs.

We are all so active prior to diagnosis.  More research is needed on this.

Thank you Dagmar for  your reset movements. I plan to incorporate them.

 

[richard-fredericks]

These stories are inspiring. They are also a bit intimidating in their scope and vigor. I feel like a bit of a piker in the relative smallness of my efforts.  Yet, I find some common threads including perseverance, realization, and a bit of fun.

For me, it  has been a  long process.  Looking back, there are discrete phases and a purpose for each. Four years ago I was symptomatic but not yet labeled. This was my “journey” phase. By bicycle, canoe, or foot I embarked on multi-day journeys. The focus was self-reflection and achieving small goals. (And I will admit, purchasing new gear  was part of the allure.) It was clear that my diminished self was pretty challenged by the hills of Vermont or the lakes of the Adirondacks. But it was helpful to stare limits right in the eye. Letting go matters if you’re going to transition to next. And testing your limits is a precursor to letting go.

The next phase was “out and about”. My trusty walker and I made it a point to shop, travel a bit, and stay active. Essentially, daily task was the exercise.  The key point: make it rigorous. I would go to Home Depot to buy a washer. And I would park in the distant corner of the lot. This is not as sexy as a treadmill but serves an equal purpose. And there are a lot of miles in a big box store or supermarket.

And now, the “device era”. Exercise is no longer an incidental. In this phase, exercise requires a sense of purpose. It is tempting to wobble out of bed and fall into my power chair. It is comfortable, safe, and expedient.   Instead, I try to use the walker for an hour in the morning.  (Let’s be real. This includes watching the Today show and drinking coffee.) But I am up and around multiple times and it is a real test.

Going to the toilet is the new going to the fitness center. There are a number of grab bars and I do squats and leg extensions. I am home alone during the day. Thankfully. (A shout out to Dagmar for inspiring this.) Bed is the greatest test. It is also the greatest return. Being able to find comfort, manage bedding, and achieve rest remains a life pleasure. Accordingly I shift positions by rolling, crab myself sideways, and do a few modified crunches.

Who knew how much exercise opportunity is available if you are adaptive?

 

[Dagmar]

I applaud you Richard! You are so right in saying “exercise requires a sense of purpose.”

Early on, I realized that if I wanted to use the toilet, sit in a chair, get into the van, etc. – – and get up out of them… I needed to retain my leg strength. Chair squats became a permanent part of my life!

Same is true for wall & knee push-ups, crawling on hands-and-knees, and, rolling sideways. All essential for arm and torso strength that lets me navigate the world with my rollator and turn over in bed.

My best advice for pALS is to incorporate these movement/exercises into your life as early as possible, so they are just another part of your day. Then, when you are facing a change in symptoms, you’re not playing catch-up to regain simple body movements.

I love your last sentence! “Who knew how much exercise opportunity is available if you are adaptive?” So True! I now look at my home with different eyes: chairs, countertops, walls, grab bars, floor and bed – – are all my new gym equipment!