Louis Savarese replied to the topic First Symptoms in the forum Living With ALS 1 month, 3 weeks ago
My first manifestation was having problems annunciating words starting with the letter S.
I have bulbar ALS and I wished I would have banked my voice eariler. I did eventually bank it with a pretty good resemblance to my natural voice but the sooner the better. I was helped by Debra of Bridging Voices 718-606-9371. After r…[Read more]
Louis Savarese replied to the topic artificial voice/speech equipment in the forum Mobility Aides, Assistive Technology and Medical Equipment 1 month, 3 weeks ago
I was diagnosed in Sept of 2020 with bulbar ALS. I was hesitant to voice bank which was a mistake. Subsequently I did bank my less than normal voice with pretty good success. I imported my voice through Acapela with the help of Team Gleason, https://mov.acapela-group.com. I then purchases the Predictable app from Itu…[Read more]
Louis Savarese replied to the topic Favorite methods for holding head up in the forum Living With ALS 3 months ago
I’m having this issue myself but it manifests itself when I bend my head down and have to swing it back up. Sitting, I dont have the issue when looking forward but if I’m on the computer like now I need to support my head with a hand. I really appreciate Luke’s approach, it shows great American ingenuity.
In terms of the band t…[Read more]
Louis Savarese replied to the topic Relyvrio in the forum Diagnosis Information and General Questions 4 months ago
Thanks for sharing the info about you and your partner’s journey thus far. I also see Dr Bedlack and drive down every three months from NJ to see him. I’ve been on L-Serine (BTW Jo-Mar Labs offers a discount to ALS patients) for about 5 months now but not N-Acetyl L carnitine. I will bring it up next month at my visit. I was dia…[Read more]
Louis Savarese replied to the topic Relyvrio in the forum Diagnosis Information and General Questions 4 months, 3 weeks ago
God Bless you and your loving husband. I’m on the list but only one email from the Amylyx team telling me I’m in the cue. I’ve been taking Tudca so I think I should be ok with the bitterness. BTW I’m lucky too in that my Faith is strong and my wife is my blessing.
Louis Savarese replied to the topic Peptides in the forum Research Topics 8 months, 1 week ago
I too was very interested in Clenbuterol, so much so that I flew to North Carolina from NJ to see Dr. Richard Bedlack. I spoke to him about the Italian study and his own small study. He advised me that I might very well be better trying try the amino acid L-Serine (which I purchase through JoMar Labs 831-728-8010). It is currently un…[Read more]
Louis Savarese replied to the topic What is Your Self-Care Plan? in the forum Living With ALS 9 months, 1 week ago
My Plan is relying on faith. When newly diagnosed, I felt like a hypocrite in that I was always spiritual but my faith was on the back burner. I always knew the importance of every minute having lost my mother when she was just 35. Now that I have been on this journey for two years diagnosed and probably a year before, I have i…[Read more]
Louis Savarese replied to the topic 1st EMG in the forum Diagnosis Information and General Questions 1 year ago
The tests aren’t bad at all. I’ve had three EMG’s with no issues. My diagnosis was confirmed in Sept of 2020 by a one hour MRI at Cornell. At that time the MRI showed possible UMN disease. (Bulbar Palsy)
I did have symptoms in terms of speech since Dec of 2019 and I went through many specialists in different fields before my d…[Read more]
Louis Savarese replied to the topic CLENBUTEROL in the forum Research Topics 1 year, 2 months ago
Hi Dave and all others on this thread,
I have scheduled my first appointment with Dr. Bedlack in the end of July. The YouTube was very convincing since the results in the Italian study and his both had positive results. I find him compelling and compassionate which is so important. No one wants to feel like a data point. I also receive gr…[Read more]
Louis Savarese replied to the topic Young man with suspected bulbar ALS – what on earth should I do now? in the forum Diagnosis Information and General Questions 1 year, 3 months ago
So sorry you are going through this. I started experiencing my symptoms which manifested with difficulty annunciating certain words back in Dec. of 2019. After a year of testing with different specialists I was diagnosed with Pseudo-Bulbar Palsy which became evident after a one hour MRI. Fast forward to today my speech has worsened a…[Read more]
Louis Savarese replied to the topic Riluzole side effect in the forum Living With ALS 1 year, 7 months ago
Taking 2 Riluzole just over a year with no issues. Feel better🙏🏼
Louis Savarese replied to the topic Why is ALS so difficult to diagnosis? in the forum Diagnosis Information and General Questions 1 year, 7 months ago
I was diagnosed with Pseudobulbar Palsy in Sept of 2020 through a one hour MRI at NYU Cornell . I had a series of blood tests to rule out Myasthenia Gravis and other ailments.
I had experienced symptoms in Dec of 2019 with difficulty articulating certain words. At that time I was prescribed an aerosol steroid to swallow for treatment of…[Read more]
Louis Savarese became a registered member 1 year, 9 months ago
Welcome to the forum! I am one of the forum moderators and a person living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or discussions by typing a…[Read more]
Hello Louis, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost m…[Read more]