Dagmar
Forum Replies Created
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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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I agree with Gregory; that the quoted study on bacteria in our CNS is on too small a sample – – only 11 patients.
The human nervous system remains a mystery to medical experts. Yes, Polynesians exposed to blue-green algae get ALS symptoms. So do Gulf War veterans exposed to chemicals. Some football players have ALS, so do some people following head trauma and general surgery.
So, what about those like me who never played football, ate algae or was exposed to chemicals? I spent 30 years practicing yoga, meditation, tai chi and was a vegetarian – – and now have ALS.
My attitude is “why put energy into wondering why, let the experts do that. My goal is to support my body through good wellness habits – – and live well while living with ALS.” 🙂
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Good question Sergey! Let’s see if any of our forum members are ALS patients who are under 38…or a family member of someone who is.
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Sergey, I’m sorry to learn that you don’t have access to local patient organizations for support. Were you diagnosed in the Ukraine? How long did it take and what tests did they use to determine your diagnosis?
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Wow – – two evacuations! Those are good tips; especially providing information to the fire department and power company.
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I agree Kim, we need to take care of our teeth now while we’re still able to get into the dentist’s chair. It sure motivates me to be extra diligent with my daily brushing and flossing!
I wonder if anyone has had a dental experience while in a wheelchair or maybe a home visit?
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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?
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Tim, hit the “reply” option… then when the comment box opens you see the top gray bar. Far right is a small picture icon. Use this to add an image.
I found the option available both via my computer and my tablet. Hope this helps!
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Tim, I understand that you are having trouble seeing the forum topics while using your tablet. I looked at the forums on my android tablet screen and if you click “Forums” you can see each category. Then click say, “Living Well with ALS,” you’ll see all the topics you can then choose to add a comment to.