Dagmar
Forum Replies Created
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Thank you for sharing that Betty. At 12.7 years (congratulations!) you certainly have many more ALS-related experiences that you can share with us. I look forward to learning more from you 🙂
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Hello Bodhi, Don’t give up! I am sorry that you encountered frustrations during Andrea’s first video – – those positions and breathing exercises are not “cast in stone” or required – – they are suggested positions so that you can better identify the different areas our rib cage moves when we breathe: upper chest, mid-back and lower ribs. If you can sit/lay in a position that is comfortable for you, and practice 30 sec. or so of breathing initiated from those areas – – then you’ve got the first step accomplished.
Andrea Caban has worked with many ALS patients and I believe would be happy to offer you alternative positions and options to accommodate what your body can/can’t do due to your ALS. We all progress differently and always need to adapt for our own body’s needs. Please email her with your questions – – she may even be able to Skype with you.
What are your current physical limitations? (if you’d rather private message me at this point, please do!) I am no expert, but since I have been through the course and am “still talking” 🙂 I would be happy to offer my own suggestions for alternative breathing positions. (there are many!)
What her course offers are the key lessons in: learning to initiate speaking from the lower ribs/diaphragm instead of upper chest area, moving certain consonants and words more forward in the mouth, changing your pitch (higher or lower) and to speak more words in each breath (longer sentences). It took me 4 weeks to “grasp” these concepts, another 4 to retrain my body & tongue, and the rest of the year to hone the skills. I had to let go of 60+ years of old speaking habits and learn a new way.
So don’t give up. Do let me know if you were able to connect with Andrea. And do let me know if I can be of further help. We are in this forum to support, share and learn from each other.
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The study cited claims that cannabis can help delay ALS progression and prolong survival – – but remember, this can only apply to animals; there have been no human studies as of yet. If you read to the end of the article there is an important quote:
However, most of the studies that investigated the neuroprotective potential of these compounds in ALS were performed in animal models, whereas the few clinical trials that investigated cannabinoids-based medicines were focused only on the alleviation of ALS-related symptoms, not on the control of disease progression.
From what I’ve read, cannabis can help alleviate spaciticy and is a relaxant. So, in Sheila’s and John’s comments above – – cannabis did work as a relaxant/pain relief. It does seem to offer benefits in these areas without the side-effects of traditional medication. However, for “delay of progression/prolong survival”…I would wait for the human trials.
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Diana,
You asked such good questions! I had to pause and think a bit, but here goes! (I might add on tomorrow if more ideas surface).Looking back, I would say “evolve” is the over-arching theme. Stick to what your body responds to, what your brain likes and allow exercises to evolve with your body. Be open to adjusting and adapting – – as opposed to just giving up (ie., feeling that unless you can do yoga the traditional way, there’s no other way. Of course, we know there’s tons of adaptations!).
By all means, continue doing your current exercise modalities. Maintain an awareness of your energy level, endurance, etc. My first two years I did my normal routines — except for having to adapt for dragging my foot and resulting balance issues.
The biggest change was noticing that a 1 hr. workout was exhausting. But three 20-min sessions interspersed through the day was OK. I also couldn’t handle a workout of a mix of standing, floor, stand, floor… Once I was on the floor, I had to stay there! So I cobbled the workout into a short standing series, a short sitting series and the floor series. (20 min each). Standing was done with a sturdy chair right behind me and my rollator in front. (safety!) Then I could bend, stretch, swing my arms, stand wide, stand narrow, bend over to touch toes, etc. all within my safety area. Getting down to the floor and up again was always done with a chair nearby; I practiced getting up using a chair, door frame and the bed.
I too received a list of ROM exercises from the PT. But the exercises were all shown with a PT helping an immobile patient. I couldn’t relate. So, I decided to make sure I incorporated ROM into my “series.” Basically, it’s: try to take every one of your joints through their range – – making circles works! Circle thumbs, fingers, wrists, shoulders, neck, everything.
Then, my priority is focused on my core – – my entire torso, front and back. Then comes shoulders & hips. Then arms & legs. Finally hand and feet. Because ALS progresses in the reverse order, at the ‘end of the day’ (full ALS progression) I wanted to end up at least with a strong torso (breathing, back, abs, etc.).
With my 20-min time constraint (due to energy) I’ve eliminated a lot of non-essential or duplicate movements. Keep it essential, productive. That will make sense when you’re in year 3+ 🙂
I believe my workouts have maintained my strength, my sense of balance, extended my energy through the day and, in the case of my “chair squats” has increased my leg strength. 🙂 At 9 yrs. I can still hit 98% on my pulmonary function test at the ALS Clinic.
So, I hope all that rambling made sense! If anyone wants more or details, I’m happy to share.
Go for it Diana!
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Alzheimer’s, Parkinson’s, ALS and more… you are correct Jean-Pierre, it is a challenge for researchers when our (aging) bodies are a “moving target.”
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File this one under: “A Gal Still Wants to Look Good!” 🙂
I don’t know if it’s a generational-thing or just my pride; but I can’t imagine going out-and-about without first putting on a little lipstick. If it’s a social meet-up, I add make-up. But now living with ALS, I’ve had to make adjustments.
My fumble-fingers can’t handle traditional lipstick tubes with their snap-caps and twist up tubes. Liquid foundation creates a mess and tiny eye brushes cause hand cramps. Here’s my new normal solution:
Cosmetic companies now offer many versions of their line in fat, easy-to-hold, twist up containers. Foundation? Try L’Oreal Infallible solid in a tube that can be applied directly to the face. Blush comes in the same type of applicator. Maybelline offers eyeliners in “magic marker” looking containers (try their Master Kajal). Lips? I use the Neutrogena Color Sticks. They are easy to hold, apply and any “near-misses” can be wiped right off.
Of course, you’ll find your own favorite brands – – but check these out as examples of a practical solution to everyday problems. 🙂
I’d love to learn from you too! What do you use?
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Diana, thank you for sharing this link to a 2018 study on exercise and ALS!
“Among the benefits, an overall improvement of functional independence in all patients, independently of the type of exercise conducted was seen. In addition, improvements in muscle power, oxygen consumption and fatigue were specifically observed in the ALS-EP group, all hallmarks of a training effect for the specific exercises. In conclusion, moderate intensity exercise is beneficial in ALS, helping in avoiding deconditioning and muscle atrophy resulting from progressive inactivity.”
RE: my HealthBounce rebounder – – I’ve found it’s not important to try to “bounce” like the old days. Rather, I get on it and can soggy-jog (the feeling of running), rock in place (balance and posture) and actually find myself doing a physical activity for 20 min. without feeling wiped-out. The safety ring is amazing as a confidence builder. I’ll shoot another video of me on it soon. 🙂
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A great resource if you are searching for clinical trials is the N.E.A.L.S. Consortium.
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Yes, David…. the emotional ups and downs are frustrating. Not only do we have to deal with the shocking news that we have ALS, but our emotional reflexes have become super-sensitive as well. For anyone not ready to take on the challenge of writing a book – – journaling can be helpful. I would write down what I did that day, how I felt, what good things happened and what were the challenges.
Here I am 9 years later and the animal rescue commercials on TV can still set me up for tears! 🙂 (the emotional sensitivity is something I’ve learned to live with)
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If you are not sure if there are hotels/motels available in the city you are visiting with handicap accessible rooms – – contact the ALS Association for that state and ask them to recommend a hotel/motel. They should be able to recommend one; especially knowing what ALS patients need.
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Welcome Jim! And welcome to all the other caregivers who joined our forum!
We encourage you to use this space to post your questions, share ideas and your experiences. Let’s connect and help each other.
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Kudos to you all! Range-of-motion, light stretching and using adapted exercise equipment are all excellent ways to give our joints and muscles movement.
I find I feel tighter and stiffer when I don’t include therapeutic (all of the above!) movement in my day. Upon waking I do 30-min of light rolling, reaching, leg lifts & pulls while laying in bed. Later, before breakfast I do 15-min of what looks like chair yoga. Throughout the day I do my “air squats.” Late afternoons, I take a break for 15-min of standing arm/torso work (chair behind me, rollator in front). Finally, after dinner I do “soggy walking” on my rebounder. BUT – – my first year I only had energy for the chair yoga!…the rest was slowly added throughout the past years only when I felt ready to do more. I would be happy to discuss my experiences with you and share links to resources that have helped me.
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Gregory, outside links are fine if you are sharing articles that would be of interest to members.
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Nina – – I hope some forum members do chime in. Wearing pants is so convenient (and part of our generation!) but I know that this issue has forced other pALS to transition to wearing dresses; making it easier for you/or your husband/helper to assist you. Here in warm Arizona that wouldn’t be a problem, but in northern areas with cooler temperatures I know some pALS wear thigh-high thick stockings as well; to keep their legs covered and warm.
Anyone with experience here and tips to share?
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You are welcome Diana!
As I always say: together, we can learn to live well while living with ALS!
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Diana – – My Drive Nitro Rollator is wonderful to use around the house. I use the other 2 rollators (cheaper models) in the yard and in our van for short walks into restaurants. For longer distances, like a shopping mall or Walmart; I have my Drive electric scooter.
I haven’t had experience using a rollator off- road (or off flat cement)…only know that gravel is hard to push through and bumpy ground is rough as well. A friend has a Volaris All-Terrain PATROL Fitness Rollator Walker, and it seems to be tough and easy to walk with.
Kudos to you for tackling nature trails! 🙂
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Diana – – you just mentioned three of my favorite topics! Pilates…Precision Medicine Program…and Andrea Peet!
Pilates is a wonderful exercise modality. Either on the floor or on a Pilates machine with an instructor to guide you. My dance background led me to Pilates, and I went through a teacher training program. Thank goodness I did; as now I am my own student! The emphasis on breathing, body alignment and aligned movement is beneficial for our ALS bodies that need daily reminders of how to move correctly.
I’ll credit Andrea’s blog as the inspiration for me to begin writing my own blog…which open many doors and led to many online ALS-friendships 🙂
I have been in the PMP for over a year now. I recommend it! The monthly check-ins helped motivate me to stick to my routines. Plus, everyone will “ooh and ahh” over your activity trackers! 😉 I wrote about it here.
Keep asking questions! We are all here to support each other!
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Susan, have you asked about wearing a “tooth guard” – – hard plastic, molded, fit upper and lower teeth? I wear them at night due to night grinding, but wonder if they would help keep your teeth from shifting at night.
ALS is so different in all patients it would be hard to train dentists in just ALS (but I too would love it!) Have you asked your ALS Assoc. coordinator for suggestions as to who other patients near you use?
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Hello, Diana – – I loved your article! Thank you for sharing it!
Apologies for the delay in having it posted. It was a matter of timing …and human ability 🙂 Yes, your link was flagged (it was an auto thing by the site) but, approving it is a “human thing!” … Amanda (east coast) and I (sort of, west coast), share moderator duties. If you put up a post at night that gets flagged, we might not see it til the next morning. Always feel free to send us a private message if you think something is amiss. 🙂
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But Susan, you are doing really well – – because you are still able to keep your body active through “incidental exercise!” Intentional exercise encompasses fitness classes, going for a walk, yoga, ROM, etc. Incidental exercise is all those movements we do: dusting, laundry, making the bed, getting the mail, watering plants, etc. Basically moving.
My short routines throughout the day are my substitute for not being able to do much incidental movement. Pushing a walker on wheels does not lend to my being able to dust, make the bed or do laundry.
So, give yourself credit! 🙂 Just try to keep moving 🙂
By the way, no more mixed messages about IF exercise (therapeutic movement) is beneficial for ALS – – it is, and 10 years of medical research supports the approval. 🙂
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I know that feeling Angie 🙂 Who knew shoes could be so heavy? … I used to think! Here’s a discovery I made:
I used to force myself to step forward – – heel first/nice stride – – only to drag my foot even more. But the episode of learning to do “air squats-now-chair squats” actually strengthened my hamstrings (back of thighs) and back of hip muscles to where I can now: pick up my back foot high enough so that it swings through on its own. No toe drag! My stride length is shorter (smaller steps) but it is SO nice not to be draggin’ 🙂
You may have to begin with only 1 or 2 like I did. But keep at it and repetitions will increase. Every time you back up to a chair, do an air squat before finally sitting 🙂
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Diana, As for new drugs and treatments beyond Riluzole and Radicava, that are available now – – there are none, yet. I have heard both positive and negative responses from patients regarding Radicava. It just doesn’t have the track record yet and daily infusions/injections can be challenging.
My “go to” site for a listing of clinical trials is the N.E.A.L.S. Consortium. They maintain an easy, up to date search page.
As for exercise – – check out our ongoing discussion over in the Living with ALS area. I have shared a lot of tips on my own blog and am happy to chat with everyone about this topic 🙂
“How long will I live?” – – is the real question on everyone’s mind! The diagnosis of ALS suddenly illuminates the crystal ball of life-span… our fatality becomes real. But, look at the big picture: LIFE is fatal. Morbid as it sounds, there are many ways our life can be cut short if we didn’t have ALS. Rather than worry about how long will I live, I try to live each day fully. No more coasting through on auto-pilot; I try to be aware, engaged, happy and productive. Doing this, I feel I’ve done my best; no matter what.
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That is an impressive daily routine Diana! I like how you are getting good overall body movement but not “going for the burn” the way we all used to. If I could describe my exercise routines; they are “maintenance.” My goal is to maintain what I have for as long as I can!
The clam-shells are what I’ve found best to counteract all the sitting that creeps in plus, these help strengthen and stabilize our hips – – to stand well.
I too get tired fingers from too much typing and for me, the gentle movements from knitting every evening help relax and keep them nimble. But I know not everyone can or, enjoys knitting! So, let me share an excellent hand routine that I also use: Stronger Hands and Happy Hands (when he says “30” I do “10”). Hope these will be of help to you.
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Debbie, do you have access to respite care services in the area where you live? Have you used them and how was it?