Hi,

Sympton onset Dec 2019, diagnosed in Sept 2020 pesudo bulbar palsy. Can’t speak, use a MicKey feeding tube, lost quite a bit of muscle to atrophy, I can still walk a bit, but hand and arm strenght is pronounced.

I can’t say if I’m getting any benefit as my progression continues. Up until last Thanksgiving I was progressing slowly.  We… Read more

Hi TRACY,

Yes, you being there will be a show of love and that’s the most important thing. This disease is such a mixed bag of emotions. I’ve lost my ability to speak and eat in April. I’m now on a MIC-KEY feeding tube and I employ the PREDICTABLE APP to help me comunicate.  I’m being evaluated for an eye tracking device as my hands and arms… Read more

Hi TRACY,

Yes, you being there will be a show of love and that’s the most important thing. This disease is such a mixed bag of emotions. I’ve lost my ability to speak and eat in April. I’m now on a MIC-KEY feeding tube and I employ the PREDICTABLE APP to help me comunicate.  I’m being evaluated for an eye tracking device as my hands and arms… Read more

Hi Christina,

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… Read more

Hello everyone,

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… Read more

Hi Doug,

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… Read more

Hi Bevin,

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… Read more

Thanks Susan,

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.

Hi Lisa,

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… Read more

Hello All,

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… Read more

Hi Andy,

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… Read more

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… Read more

Hi Will,

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… Read more

Taking 2 Riluzole just over a year with no issues. Feel better🙏🏼

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… Read more