Happy to talk with you Hawken, if I can be of help. Lisa

I prefer Warrior, because I never stop fighting!

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.

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

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

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!

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… Read more

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… Read more

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… 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… 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… 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,… Read more

Does anyone else out there have Bulbar Onset?  I would love to compare notes.  It takes me forever to finish a small meal, and my speech is slow and labored.  I think that is where ALS slows me down.  The SIP has been hard on all of us but eating in public is increasingly difficult.  My tongue doesn’t work well.  It’s a circus!  People who… Read more

Hi Dagmar!  It seems like there is a physical price for everything I do.  Mostly cramps and fasciculations.  I, too, used to multitask easily. It is indeed different now.  I can still walk well, kayak, and dance (poorly) but I cramp hard after. My right arm punishes me me in particular.  As you know, every day is different. I am thankful that my… Read more

I had symptoms in early 2016 and was diagnosed with ALS in 2017.  We thought it was sporadic.  I did a study in 2018 that discovered a C9orf72 mutation.  In short order my sister was diagnosed, then two more siblings tested and were found to be positive as well.  I have two more that have not tested yet.  My first cousin on my mother’s side died… Read more

I would be happy to participate!  Lisa

I was diagnosed a year before I was tested for a genetic cause, which they found.  I have the C9orf72 mutation.  One sister has ALS and dementia, and two other siblings are positive for the gene.  Two more have yet to test.  None of our kids have been tested yet. I volunteer for every trial that I qualify for.  I do it for my family.  I do… Read more

Mine started with Bulbar symptoms 3 years ago.  Your doctor can advise you!  Breathing is the issue.  If your breathing is good, you are good!   Lisa

Dear Peter, I am sorry for your diagnosis, but your life isn’t over.  Live every day with passion!   By the way, ALS doesn’t always start with the dominant side.    My sister’s started on her non-dominant hand, mine started with my breathing and speech.  There is no blood test for ALS, but there is a blood test to see if yours is genetic.… Read more

Dear Peter, I wish you the best.  There is no blood test for ALS, but one can assess whether you have a genetic mutation at the root of your illness.  Most cases are not genetic by far.  A spinal tap is an extreme measure that may show some evidence, but most cases are diagnosed by observation and an EMG.   Mine was found with an EMG.  Your… Read more

I have genetic ALS due to a mutation in the C9orf72 gene.  I have 2 other siblings that are positive for the gene and two more being tested.  The last one doesn’t want to know, and has no children.  I have Bulbar Onset, my sister has Limb Onset, and my brother has no symptoms yet.  We all want to be treated like the people we are.  Our… Read more

Donna, I am so sorry for your voyage with your husband. It is entirely too common with this disease.  It is a tragedy that he had to endure the surgeries that may not have been necessary.  My sister was scheduled for surgery for carpal tunnel when I discovered my ALS was genetic. They did an EMG on her and found neuropathy.  She now has full… Read more

I started volunteering for studies as soon as I was diagnosed.  I will fight this disease any way that I can.  When I found out that my ALS was genetic I redoubled my efforts.   My children are at risk.  Without clinical trials we have no hope.  The current meds do so little.  I did not qualify for NurOWN but I wish I did!  I was chosen for a… Read more

Dagmar, as I think you know I have Bulbar Onset ALS.  So I have more mobility than most and I use it!  I dance to fight ALS!  I use Tap for my brain,  and Jazz to retain strength and flexibility.   I walk and climb stairs to try and keep my lung function better, longer.  I eat well, consciously.   My greatest weapon is sleep!  Everything works… Read more

Dagmar, I absolutely live that way!   I am gifted with a positive attitude but maintain it by living each day firmly in the present, celebrating what I have rather than what I have lost.  I exercise daily, walking more than running now.  I practice Zen meditation, and it really helps my to clear dark thoughts and worries.  I maintain a healthy… Read more

I have to warn my doctors before they test my reflexes!  They are extreme!  I am afraid I will hurt them!

I do have twitching and some really painful cramps. At the beginning it was only in my tongue but now, almost three years later, I have them in many muscles.  I still am active and have very little muscle weakness.  I do not take anything for the cramps but I intend  to once my study is over.

I had the first dose last Thursday with no side effects beyond slight headache and soreness at the site.  This trial is funded by Biogen and I am the only patient in this area.  There is a total of 12 people worldwide in this cohort.  I am being treated at Stanford, in California.  6 people, including me, are in the U.S.   It is too soon to… Read more

I started a trial today for the gene C9orf72. It runs for 40 weeks and is given by Lumbar Puncture.  I am the first human to receive 20 ml of the drug or placebo.  I have a 50/50 chance.  I will share how it goes! So far, the only side effect is bruising at the site.  I had no headache.

I noticed a change in my singing voice.  I was a first soprano and felt like I could not support the high notes.  My breathing has changed.  I was also “talking drunk while sober”.  I saw an ENT who scoped my throat and could see no problems.  She sent me to a neurologist who sent me for a brain MRI on Stroke Protocol, which was negative.  I… Read more