Old 10-03-2018, 02:26 PM #1 (permalink)
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Question Denver, CO improves ALS symptoms?

Hi,

I recently came back to NJ from a four-day trip to Denver, CO. While I was there, several of my symptoms had improved noticeably. My ability to swallow water had improved back to the pre ALS levels; the back of my knees which are usually the stiffest part, softened up and made my walking ability much better; I could more easily stand up from a seated position regardless of the height of the seat.

I assume something environmental had an impact on me. I would like to find out what and if we can replicate that here in New Jersey.

What have you come across or who can I talk to that can provide some insight on this?

Jeremy
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Old 10-03-2018, 02:46 PM #2 (permalink)
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Default Re: Denver, CO improves ALS symptoms?

I will let the Coloradans weigh in --altitude is obviously a difference, as is, possibly humidity. I would also be curious as to if/how your regimen there changed in terms of sleep, stress, rest, diet, etc.

Best,
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Old 10-03-2018, 07:29 PM #3 (permalink)
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Default Re: Denver, CO improves ALS symptoms?

Where you imbibing anything unusual? It is Colorado after all....
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Old 10-04-2018, 06:10 PM #4 (permalink)
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Default Re: Denver, CO improves ALS symptoms?

the key may be in the actual changes not the specific city.

but I've lived 50 miles to the south for ~25 years, going to Denver only serves to irritate me.
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Old 10-05-2018, 06:08 PM #5 (permalink)
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Default Re: Denver, CO improves ALS symptoms?

Jeremy, maybe you might share with us your process to an ALS diagnosis.

If Denver can somewhat reverse symptoms of ALS... all of us lowlanders need to move there.

Edit

Ooops. In response to an Email... let me soften the first sentence.

When you get a chance maybe you can tell us about yourself.

Last edited by Clearwater AL : 10-05-2018 at 06:51 PM Reason: add Oooops
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Old 10-06-2018, 08:10 AM #6 (permalink)
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Default Re: Denver, CO improves ALS symptoms?

I found this link on the UKs MND forum. This paper suggests that (some) oxygen deprivation can benefit the nervous system.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4073945/

Will let the smart people weigh in ...
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Old 10-06-2018, 11:36 AM #7 (permalink)
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Default Re: Denver, CO improves ALS symptoms?

Please do give us some background on your diagnosis and condition.

I took my husband from NC to Colorado three years in a row after his diagnosis (he went himself the first year). He had a wonderful time, but if anything the higher altitude made breathing harder (he needed oxygen on the final trip) and the exertion sped up his progression after each trip. It was, however, what he looked forward to every year.

If you relaxed and enjoyed yourself, it was probably the lack of stress that made you feel better.
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Old 10-06-2018, 12:25 PM #8 (permalink)
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Default Re: Denver, CO improves ALS symptoms?

Annabelle,

Im not sure how that research would pertain to MND where all the rules are different.

Low oxygen increases respiratory drive. In a person with good underlying lung function, this will cause them to hyperventilate. We have all experienced that at high altitudes.

A person with respiratory muscle weakness (e.g. ALS) may not have the strength to increase their respiratory effort, and this will wear them down trying.

I agree with Becky that the decrease in stress from the trip is what made the difference. In someone with severe respiratory muscle weakness, this may not be possible.
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Old 10-06-2018, 05:29 PM #9 (permalink)
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Default Re: Denver, CO improves ALS symptoms?

Please. As Jeremy wrote...

"My ability to swallow water had improved back to the pre ALS levels; the back of my knees which are usually the stiffest part, softened up and made my walking ability much better; I could more easily stand up from a seated position regardless of the height of the seat.

"My ability to swallow water had improved back to the pre ALS levels."

"I could more easily stand up from a seated position regardless of the height of the seat."

That is ALS reversal. PALS... pack up your bags and move to Denver.

Stress relief? Come on ! Does meditation reverse the progressive symptoms of ALS?

Last edited by Clearwater AL : 10-06-2018 at 05:38 PM
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Old 10-12-2018, 11:43 AM #10 (permalink)
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Default Re: Denver, CO improves ALS symptoms?

My regimen actually has not changed. It was slightly more stressful since we were unfamiliar with the hotel and getting around. There is certainly less humidity.

Quote:
Originally Posted by lgelb View Post
I will let the Coloradans weigh in --altitude is obviously a difference, as is, possibly humidity. I would also be curious as to if/how your regimen there changed in terms of sleep, stress, rest, diet, etc.

Best,
Laurie
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Old 10-12-2018, 11:45 AM #11 (permalink)
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Default Re: Denver, CO improves ALS symptoms?

I've changed from my normal vape pen to a pax with a all cbd from Mary's medicinals.

Quote:
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Where you imbibing anything unusual? It is Colorado after all....
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Old 10-12-2018, 11:50 AM #12 (permalink)
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Default Re: Denver, CO improves ALS symptoms?

I started with some right foot drop March 2017. It progressed to balance and gait issues; fasiculations, muscle cramps, official diagnosis 1 / 5 / 18 by the Mayo Clinic, muscle wasting in the hands, loss of grip and function, increase use of a wheelchair, my voice has been deteriorating for the last 2 months. And here we are today.
Taking Baclofen, riluzole, Lexapro, nudexta, weed. Oh, and something for my burning eyes due to the excess lactic acid from muscle breakdown.

<quoted text removed>

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Old 10-15-2018, 09:50 AM #13 (permalink)
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Default Re: Denver, CO improves ALS symptoms?

@jeremy152
"...who can I talk to that can provide some insight on this?"
NO ONE!
especially your neuro. it is our world of pals. we know better than neuros, so they ask us. neuros are MD, biochemists know biochemistry, but noone is in our shoes!
my cough almost killed me 2-3 times in a last 2 years. i was coughing almost 15 hours/day with pauses of few mnutes. it suddenly stopped! noone knows why. pulmologyst, neuro, imunology dpt... my fvc is app 102%, fev1/fvc is 80%, no cough 95% time.
i've been told not to ask much about als.
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Old 10-15-2018, 11:40 AM #14 (permalink)
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Default Re: Denver, CO improves ALS symptoms?

Hi, Jeremy 152! I am pleased for you that you had a lovely time and experienced improvement while in Colorado. A change of place and beautiful scenery can certainly lift one's spirit and bring forth new energy.
*Since we're all so different, your experience may only be unique to you, though it would be wonderful to be available for others. Hopefully, your experience will last for a loooooooong time. May it continue to be so.
*Thank you so much for sharing.
* May blessings abound. B.
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