Lisa Bonahoom
Forum Replies Created
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Happy to talk with you Hawken, if I can be of help. Lisa
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I prefer Warrior, because I never stop fighting!
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I wear an irreverent ALS T-shirt. The clinic and other patients appreciate and love it. If I can bring a smile to the faces of that group my job is done. No one is offended.
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Sadly, I think most of us pass due to respiratory issues. I wish you only the best as you care for your husband. I hope you have support. Lisa
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I am happy to share that my daughter is getting married in July. It’s been a joy preparing for the wedding. I will share pictures when I can! Lisa
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I was in the Biogen ASO trial for C9 familial ALS. I did really well on it but was an anomaly. Not enough participants improved. They canceled the trial almost two months ago.
I am hoping for Centaur now. Hanging in there!! -
Thank you for this music! You did nail it!
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My family has the C9orf72 mutation. I had already been diagnosed with ALS when I was asked to test for the gene. The knowledge saved my sister from unnecessary carpal tunnel surgery. I told her to have her doctor refer her to a neurologist. They found ALS. The testing made me eligible for an important clinical trial. I have three more siblings with the gene, and at least one of my children has it. He and his wife will use science to have a child without the genetic mutation. Other members of my family have not tested yet. The sister I mentioned above passed away in February from the disease.
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I was teaching full time, choreographing and directing shows, dancing and singing professionally, acting, designing for the opera. ALS first affected my breath, so I had to retire from everything but designing for West Bay Opera. I danced in the studio for almost 5 years after diagnosis. My ALS has progressed to my limbs, so I had to retire from the Opera. My acting career was recently revived with a small part in a movie. “New Life”. Watch for it in the fall!
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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 more impacted by ALS. Such a memory!!
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I will be using my late sister Carol’s wheelchair. It will be a tribute to her. ALS took her last year.
lisa
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The shoot was moved up one day. We are now shooting on Tuesday! I will share the experience when I can! Lisa
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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
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The film is still in production and I don’t know it’s release date. I will share when I do. Lisa
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Hi friends! Just an update. I am filming April 20th. So excited to represent! I will keep you in the loop. Lisa
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Dagmar and friends, I got the part! So excited!! I did the callback today.
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
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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
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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 summer of 2017. It was confirmed in early December that year. Bulbar Onset with respiratory weakness. I am still talking, slowly, and walking! My right hand has joined the party, and I have early ambulatory difficulties. I was a dancer, singer and actress, as well as a fine artist. Right handed, of course! ALS is a challenge but I have not given up! Take care of yourself and live everyday! Lisa
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In loving memory of my sister, Carol Ann Cross. She passed away a little over a month ago.
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I have the C9orf72 mutation, and I definitely did the strenuous exercise thing. Interesting finding in that article.
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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!!
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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 chance of a placebo next Friday! The dosing is intrathecal, not fun, but I really hope for evidence of slowing or stopping progression, or even reversing the path a little. I will let you know!
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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