ALS News Today Forums | Giselle Vargas | Activity https://alsnewstoday.com/forums/members/senoraglvgmail-com/activity/ Activity feed for Giselle Vargas. Fri, 17 Apr 2026 15:42:52 -0500 https://buddypress.org/?v=2.19.0 en-US 30 hourly 2 71c5732ab00846226b46ff9fde5ee484 Giselle Vargas replied to the discussion Ibudilast (Ketas) in the forum Research Topics https://alsnewstoday.com/forums/forums/topic/ibudilast-ketas/#post-17967 Sat, 06 Mar 2021 19:35:24 -0600 Reply to Ibudilast (Ketas)

Following up with those of you on Ibudilast? Are you still taking it? Seeing any benefits? Breathing any better?

I am also curious if anyone is taking BOTH ibudilast and sodium phenylbuterate.
( sounds like Ammonaps must be the European name for SPB )

Thank You in advance!

]]> 07f0ff9e76bc8a686a96f01ead8ba483 Giselle Vargas replied to the discussion Respiratory onset? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://alsnewstoday.com/forums/forums/topic/respiratory-onset/#post-16715 Tue, 03 Nov 2020 21:28:39 -0600 Reply to Respiratory onset?

Hi Sarah,

I am sorry you are struggling with these symptoms. Doesn’t sound very similar to my husband’s situation but that doesn’t mean anything bc each person is unique. I’m wondering if you have had unexplained weight loss and noticeable muscle atrophy? That was key in our diagnosis. Also he had wide spread fasciculations or muscle… Read more

]]> b10badf826d1c6855d8b960c41232a0e Giselle Vargas replied to the discussion Home renovations and ALS in the forum Mobility Aides, Assistive Technology and Medical Equipment https://alsnewstoday.com/forums/forums/topic/home-renovations-and-als/#post-16551 Wed, 14 Oct 2020 14:31:23 -0500 Reply to Home renovations and ALS

https://images.app.goo.gl/TEJdCzgn5d1uJnEV6
I wonder if this type of step in bath tub/shower that I have seen recently would be a good idea ? Any thoughts?

]]> c0ec3903e83200d1c6673f88b8315eb0 Giselle Vargas replied to the discussion Canada Approves New Patent Covering Ibudilast’s Use for ALS Treatment in the forum Research Topics https://alsnewstoday.com/forums/forums/topic/canada-approves-new-patent-covering-ibudilasts-use-for-als-treatment/#post-16326 Thu, 10 Sep 2020 20:15:31 -0500 Reply to Canada Approves New Patent Covering Ibudilast’s Use for ALS Treatment

When will it actually be available in Canada? We would go to Canada in a heartbeat. I can’t find any news articles on this. Does anyone have any more info on this?

]]> e3aa08fb4be0866415cb0101c631989f Giselle Vargas replied to the discussion Lyme Disease vs ALS in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://alsnewstoday.com/forums/forums/topic/lyme-disease-vs-als/#post-16300 Tue, 08 Sep 2020 19:54:03 -0500 Reply to Lyme Disease vs ALS

Walter, I would definitely gets Lyme test. Why not? It can’t hurt and may help you. Let us know what you decide to do. Stay strong!

best wishes,

Giselle

]]> 9549e5a848c410fc344672066f8d0aad Giselle Vargas replied to the discussion NPR story on AMX0035 in the forum Research Topics https://alsnewstoday.com/forums/forums/topic/npr-story-on-amx0035/#post-16258 Thu, 03 Sep 2020 19:17:53 -0500 Reply to NPR story on AMX0035

Hi Dagmar,
Is  it possible to post a link to the ALSA petition to expedite access to AMX0035?

Such exciting news!!

Giselle

 

]]> 434f9fc22db3b3d571b8707b5732139a Giselle Vargas replied to the discussion Respiratory onset? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://alsnewstoday.com/forums/forums/topic/respiratory-onset/#post-16230 Wed, 02 Sep 2020 00:16:04 -0500 Reply to Respiratory onset?

Hi Stephanie,
Which doctor or doctors did you see at the Mayo Clinic? After reading your post I am considering going for another opinion on my husband’s case. It sounds like they are extremely thorough. My husband also lost exactly 40 lbs over about 8 months! Weakened diaphragm and Very shallow breathing .. but we never had a SNIFF test. He has… Read more

]]> cb25575bb9cc87e85d1c5a16047fda75 Giselle Vargas replied to the discussion Exercise and ALS in the forum Living With ALS https://alsnewstoday.com/forums/forums/topic/exercise-and-als/#post-16157 Wed, 19 Aug 2020 01:32:03 -0500 Reply to Exercise and ALS

Lots of excellent information here! Thank you all! I am wondering if anyone has used a power plate or body vibrating device? How would this be used for ALS? Any thoughts?

thanks,

Giselle

]]> b7fa7e1122ea700e38f00743aeb2b13a Giselle Vargas replied to the discussion How long did it take for an ALS diagnoses? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://alsnewstoday.com/forums/forums/topic/how-long-did-it-take-for-an-als-diagnoses/#post-15889 Thu, 16 Jul 2020 21:00:23 -0500 Reply to How long did it take for an ALS diagnoses?

Hi John, Sorry you are dealing with this! Do you live near NYC or a city with a good ALS clinic?

]]> 1e1be03f7f0ea5b85bfd085465c97c19 Giselle Vargas replied to the discussion How long did it take for an ALS diagnoses? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://alsnewstoday.com/forums/forums/topic/how-long-did-it-take-for-an-als-diagnoses/#post-15887 Thu, 16 Jul 2020 20:48:22 -0500 Reply to How long did it take for an ALS diagnoses?

Hi,

Well, the diagnosis of motor neuron disease came fairly quickly…. a month after we initially went to our internist with concerns in October 2019. Looking back the my husband ‘s symptoms probably started about 6 months before we went.  Then it got a bit more complicated bc the first neurologist (November 2019) said ALS and sent us to see… Read more

]]> 1164a4c7478ed8aa2a8951f0bd8b0c4b Giselle Vargas replied to the discussion Respiratory onset? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://alsnewstoday.com/forums/forums/topic/respiratory-onset/#post-15745 Fri, 03 Jul 2020 16:41:27 -0500 Reply to Respiratory onset?

Hi Susie,

Thank you for responding! It sounds like you are a very strong woman and really hanging in there! My husband’s symptoms do sound similar to yours. Neck muscles are weak. He has a very good neck support he bought on Amazon…brand name is VIVE. I am curious as to what kind of speech problems you have. Do you slur your words or is… Read more

]]> b17a2eda89ad703895cc56fca0bc1e5d Giselle Vargas replied to the discussion Ashwagandha (aka Withania Somnifera) Supplementation in the forum Research Topics https://alsnewstoday.com/forums/forums/topic/ashwagandha-aka-withania-somnifera-supplementation/#post-15733 Wed, 01 Jul 2020 22:42:42 -0500 Reply to Ashwagandha (aka Withania Somnifera) Supplementation

Thank you Dave! I will order this for my husband. I also was reading about a Pomegranate seed oil extract from Israel that uses nanotechnology… I believe it’s called Granagard. Have you heard about this?

]]> c7d073b3ef83f9f0cb5d7a8fbd9e2344 Giselle Vargas replied to the discussion Ashwagandha (aka Withania Somnifera) Supplementation in the forum Research Topics https://alsnewstoday.com/forums/forums/topic/ashwagandha-aka-withania-somnifera-supplementation/#post-15729 Wed, 01 Jul 2020 18:52:20 -0500 Reply to Ashwagandha (aka Withania Somnifera) Supplementation

Hi,

We are also interested in Ashwaganda. I’ve read lots of positive reviews /info on it. May I ask, what is the name of the supplement your Dad takes? How much does he take?
Thank you and hopefully more people will chime soon in with info!

Giselle

]]> 4ecc707600bf31d904b26720ed5727a7 Giselle Vargas replied to the discussion Respiratory onset? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://alsnewstoday.com/forums/forums/topic/respiratory-onset/#post-15727 Wed, 01 Jul 2020 17:45:37 -0500 Reply to Respiratory onset?

Hi Dean,

Your experience sounds so similar to my husband Sergio’s! Very recently he was having trouble clearing his throat so we got a cough assist device which is very helpful. The therapist said in addition to clearing it helps inflate the lungs and keep them in better shape. May be helpful for you? I’m curious… Did your doctor use the… Read more

]]> c7b67907a086b6374b64f5492db0d9b5 Giselle Vargas replied to the discussion Respiratory onset? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://alsnewstoday.com/forums/forums/topic/respiratory-onset/#post-15712 Tue, 30 Jun 2020 20:58:47 -0500 Reply to Respiratory onset?

Hi Diana,

I hope that the results of the sleep study are helpful. My husband sleeps with a non invasive ventilator which allows him breathe while lying down. He does breathing exercises with a spirometer and stacked breathing. I’m not really sure if it helps or not. If you don’t mind my asking, does your husband have a hoarse voice or does he… Read more

]]> 95a7f39444d34209db2999afefe94901 Giselle Vargas started the discussion Respiratory onset? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://alsnewstoday.com/forums/forums/topic/respiratory-onset/ Tue, 16 Jun 2020 21:33:09 -0500 Respiratory onset?

My husband’s first and most salient symptom has been shortness of breath due to weakening diaphragm and torso muscles. Has anyone else had a similar experience? Everyone else seems to be bulbar onset or limb onset. I know there is a small segment that is respiratory onset but I have never seen anyone post about this. Thank you!

]]> 5872e5a5ad35830e926dd2d23294d2e9 Giselle Vargas posted an update: I’m not sure if I am writing this in the correct place. My […] https://alsnewstoday.com/forums/activity/p/6123/ Tue, 09 Jun 2020 21:16:08 -0500 I’m not sure if I am writing this in the correct place. My husband was diagnosed in November but his symptoms started with difficulty breathing which seems very unusual. He cannot breathe laying down and needs a non-invasive ventilator to sleep or recline at all. It seems his diaphragm and chest muscles are being affected first. I am wondering… Read more

]]> 0 63d3392a04df5b8d6e9cfcd91cf5308c Giselle Vargas replied to the discussion A fast way to win ALS not totally but … (part 1) in the forum Research Topics https://alsnewstoday.com/forums/forums/topic/a-fast-way-to-win-als-not-totally-but-part-1/#post-15535 Tue, 09 Jun 2020 20:52:17 -0500 Reply to A fast way to win ALS not totally but … (part 1)

Hi Igor,

Your ENGLISH is fine. What is Power Plate? Curious.
Thanks, Giselle

]]> d81e4ead2e073c0532a8b228a96ea25b Giselle Vargas replied to the discussion ALS 1-Year or Less PLUS the Pandemic?: A Roundtable Discussion in the forum COVID-19 and ALS https://alsnewstoday.com/forums/forums/topic/als-1-year-or-less-plus-the-pandemic-a-roundtable-discussion/#post-15408 Fri, 22 May 2020 18:26:24 -0500 Reply to ALS 1-Year or Less PLUS the Pandemic?: A Roundtable Discussion

Hi, first of all thank you for welcoming me to the group. My husband Sergio was diagnosed with ALS 6 months ago. We were just getting back on our feet from the diagnosis and boom, the virus hit. It has been super stressful. His disease has started in his chest muscles and diaphragm so I am terrified of him getting COVID19. We are from NY and… Read more

]]> d7436d5a217e4c22df2daa34580212a1 Giselle Vargas became a registered member https://alsnewstoday.com/forums/activity/p/5861/ Fri, 22 May 2020 12:40:55 -0500 2