Lisa Bonahoom

It’s a wrap!   We filmed yesterday and it was an amazing experience. The director and film crew were so thoughtful. It was filmed in my sister’s house in San Francisco. We worked around the sounds of the city!  It was strange to be in my sister’s wheelchair. It fit me .  The makeup artist did her best to make me look sick, as my character was much…[Read more]

I will be using my late sister Carol’s wheelchair.  It will be a tribute to her. ALS took her last year.

lisa

The shoot was moved up one day.  We are now shooting on Tuesday!  I will share the experience when I can!  Lisa

I am looking forward to filming in two weeks!  I am sending my son to pick up my late sister’s wheelchairs to use for the shoot. We will be filming in San Francisco     My sister’s home and table was chosen by the production company. Thank goodness for family!  Lisa

The film is still in production and I don’t know it’s release date. I will share when I do. Lisa

Hi friends!  Just an update. I am filming April 20th. So excited to represent!  I will keep you in the loop. Lisa

Dagmar and friends, I got the part!  So excited!!  I did the callback today.
Lisa

Hi Dagmar!  I auditioned yesterday and it was a marvelous experience!  I was an actress before ALS and I thought it was gone forever. I so enjoyed working with them. I will let you know  what comes of it. Thank you for the connection. Lisa

Thank you Dagmar. We have so much in common. I appreciate your writing!  I started slurring words 6 years ago, and have tried everything to keep my voice.   I have been pretty successful so far. I do know it’s getting harder but I am happy to still be here!  Lisa

Hi Lonny!  It is still going.  I am in it.  They are still trying to find the optimal dosage.   It is very tightly controlled.   Do you have C9?  Lisa

Hi Anne!  I first noted a change in my singing voice, which was all about breath control.  Not long after that I was suspected of “day drinking”, as I would start slurring by afternoon. I saw an internist, an ENT, then a Neurologist. She sent me for two MRIs suspecting a stroke or a tumor, then for an EMG.  That was the evidence for ALS, in the su…[Read more]

In loving memory of my sister, Carol Ann Cross. She passed away a little over a month ago.

I have the C9orf72 mutation, and I definitely did the strenuous exercise thing.  Interesting finding in that article.

I am grateful for birdsong and sunlight!  I am grateful for the love of my family, and for dear friends. I thank God and medicine that I can still move!!

I was chosen to be one of 12 people worldwide to be in the third cohort last year. I only had a 50% chance of getting the drug, but I really think I did.  I gradually grew stronger, spoke more clearly; friends and family noticed.  When the dosing stopped last November I slowly started getting worse again.  I will receive a higher dose, with no ch…[Read more]

Dagmar, what have you heard about BIIB078 from Biogen for genetic ALS?  C9orf72.  I start the open label next Friday.  I have high hopes!   Lisa

Danielle, I totally get it!  Meals take forever! I always loved dining out, but before the lockdown I would order an appetizer instead of dinner so I wouldn’t tie up a table. Eating at home there is no pressure – my family knows they can start the dishes!

Recently my right hand has been weakening. That slows me down substantially.  Buttons, zip…[Read more]