Lisa Bonahoom

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]

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 don’t…[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 p…[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 o…[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 know…[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 doct…[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 diseas…[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 bl…[Read more]