Changing Symptoms

em9988

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My mom was diagnosed around june-July but her symptoms started around last fall, so far she can still walk very slow albeit not very fast, and definitely struggles to get around without a cane or a walker. Her hands and speech seem mostly fine.

However, around 2 months ago she started seeing this Chinese doctor for herbal medicine and acupuncture/massages and since then her muscle twitches have decreased to almost none and her muscle stiffness and tightness only comes and goes, she says that maybe 10% of the day its tight around night time and when the weather is rainy or humid but mostly if anything her muscles is too relaxed these days according to her.

She hasn't been taking any prescribed drugs like muscle relaxants or anything for the actual ALS, we've mostly been focusing on improving her overall health via healthy diets increasing caloric intake and mild exercise, as last year during covid she lost 10 pounds (she already previously had a hard time gaining weight since she was young, dropped from 102 pounds down to almost 90 during covid but is now back up to 105 after she was diagnoses and we focused on her nutrition a lot more) working as a nurse due to heavy workload which the doctors think might have triggered her sporadic case of ALS.

Anyone else experienced this type of progression in symptoms?
 
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Nikki J

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I stopped twitching almost entirely after starting riluzole. Of course correlation is not causation. And it is definitely true that decreasing spasticity can reveal you are weaker than you thought because spasticity counteracts and masks weakness up to a point.

Chinese medicine are drugs like Western ones and can have effects and side effects. There is one that is often used for neurological disease that is actually fairly similar to riluzole and she may be taking something that has muscle relaxant properties
 

lgelb

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I would hate to think you or your mom blames her workload for ALS. There is a boatload of stress factors (chemical exposure on down) that may play into ALS, as with most other illnesses. Work and weight loss are nowhere near the top on most epidemiologists' lists, if you consider how many health care professionals and other workers have experienced both during the pandemic and how few have acquired ALS in that time period. Anyway, what is under her control is what happens from now till the end.

Best,
Laurie
 

MarkyMark

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Dear em9988

I was diagnosed with MND/ALS in Cape Town, South Africa on 22nd Dec, 2020 & after almost 9 months of lockdown due to the Covid pandemic, I was weak in my core & limbs. I was a very physical & body aware Argentine tango teacher & actor up to then. My doctor counselled me to get my affairs in order & prepare for the worst.

A month later, after doing 4 weeks of gentle Pilates sessions on the machines, lying down always, with a very experienced Pilates instructor & doing a daily Pilates bed warm-ups & daily walks I was stronger, not weaker. My doctor poopooed my improvement despite my conviction that my body had improved in strength. My speech however was declining & I was getting less intelligible. Thereafter, I got very depressed for 3 weeks & felt that my efforts were in vain. And then I got out of my slump.

I was recommended to try Acupuncture with a Chinese doctor & after 1 session my speech dramatically improved in clarity & nuanced flexibility & duration of speech. I also went to a SCIO Specialist, an MD & holistic doctor, & was advised to change my diet, to take tissue salts & minerals to balance the acidity of my body. Please note, I am a levelheaded believer in science & medicine, with a degree in science, but open to holistic & more complete healing of body, mind & spirit, not just body. My weekly Pilates & Acupuncture sessions are all sponsored by more wealthy friends of mine. I also continued Pilates & began walking in a seaside pool in water up to my chest. And all of these endeavours produced improvements & positive results. This meant when I saw my doctor again in the middle of May I was much stronger in body & mind (I had met with her once before & said I couldn't keep seeing her if she was so negative & doom & gloomy. I didn't want to hide what I was doing, but robustly reminded her that Western medicine was applying leeches & draining blood for so many conditions a few hundred years ago while acupuncture has been practised in China for many years & was first documented 2000 years ago. And it is not a pill of any kind, with no side effects as far as I can see.)

And when I saw her in the middle of August my doctor revised my diagnosis from classic ALS to Upper Motor Neurone Disease, UMN or PLS & said I have a slower progression than she had thought before.
I am convinced that my therapies, allied with antispasmodic pills, Baclofen, have helped me enormously. Added to this, a positive yet realistic mindset & a determination to enjoy my life for however long I have still, listen to beautiful music, see amazing art in galleries regularly & see friends & family often for walks, talks & celebratory meals have all combined to make my situation much better.
I have read many people on this forum remarking that acupuncture has not helped them, but I would like to state that I've had "acupuncture" before this diagnosis, done by someone who had done a course or two in it- it was basically dry needling. They lacked the skill & finesse of these Chinese practitioners steeped in this practice. I know it doesn't work for many people but I have to say that there are many people teaching tango around the world, a few are exceptional, some are good & many are mediocre to bad. But that doesn't mean tango is bad.

I encourage you to get your mother's body, mind & spirit strong & focus on living well & positively while she can.
 

lgelb

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MarkyMark, welcome to the forums. Just a few comments to place yours in perspective.

Since your diagnosis has been adjusted to upper motor neuron-dominant disease, your prognosis is better than "garden-variety ALS," which typically begins with primarily lower motor neuron symptoms.

The general rule on exercise with ALS is that if you are still tired an hour or so later, or feel generally fatigued throughout, it is too much, as it could "burn out the battery" sooner and once a nerve dies, there is no coming back for that nerve. I am sure you are mindful of this.

There may be some for whom skilled acupuncture helps, as in many neuromuscular conditions, but I am sure you are not calling it "a cure." The same is true for water exercise and Pilates. What would be counterproductive would be to exercise thinking the more exercise the better. You would progress faster.

As for pH, alkalinity and acidity have no known relationship to motor neuron death, our biochemistry is complex, and ALS is a disease of metabolism in part, meaning supplements take precious energy to digest that not everyone has. So I would not spend any money [and possibly health] doing that. Because nutrition remains critical, a whole foods diet is of course what we always recommend, whether blended for a smoothie or tube feed, or as "whole" as one is able to swallow safely.

There's no doubt that keeping active socially (Covid allowing), artistically, intellectually, etc. is good for any medical condition, as well as for the healthy.

Best,
Laurie
 

em9988

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<quoted text removed>

Is this accelerated burnout which increases the progression of the nerve degeneration an established thing for als? My mom these days uses exercise as her form of keeping hope on delaying ALS but from what I can see her legs are getting worst
 
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Nikki J

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I am not sure that they have documented the actual process in studies ( it would be unethical) but it is generally accepted. The hour rule cited was given to me by my ALS clinic which is Mass General. They encourage moderate exercise but within these parameters ( full recovery within an hour of exercise - no fatigue, discomfort or decrease in baseline abilities) and of course the exercise needs to be safe.

anecdotally you will find reports of PALS overexerting on a single occasion and losing some function forever. That happened to me with ability to walk tip toe.

your mother should talk to her ALS team so they can help her design a safe exercise routine that will need to be reevaluated as symptoms change.
 
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