Fran Finney

Great article! My husband also appreciated big soft T-shirts and small light blankets. And ice cream!

Later, after Hal completely lost his ability to speak, swallow, and move, he would often lay awake at night, bored but unable to do anything. Nights went on forever, as he lay motionless in his hospital bed, while I slept in my twin bed beside…[Read more]

Thank you, Dagmar. We appreciate YOU too!

I agree that we need much more research in this area! We know ALS impacts the central nervous system and the brain, and the interaction between ALS and cognitive functioning is very complex. FTD is not the only potential manifestation of impacted cognitive skills. MY husband Hal was literally a whiz at mental math and complex reasoning before he…[Read more]

There are many TERRIBLE statistics associated with ALS! The one that horrifies me the most, and one that most of the public is still unaware of, is the more recent realization that as the disease progresses, in addition to physical losses, at least 50% of pALS experience cognitive deficits. We need more funds and studies to stop this progression…[Read more]

Here is an article th twas in ALS News Today last year finding 22 genetic mutations linked to sporadic ALS https://alsnewstoday.com/news/mutations-22-genes-linked-sporadic-als-large-patient-group-study/

My husband, when he was living with ALS, preferred “Warrior”.

I love Lisa’s answer. I was caregiver for my husband for the 6 years he lived with ALS. Eventually we got used to people saying or asking the “wrong things”, although it was always difficult for both of us when overly “helpful” people tried to give us advice on how to “cure” Hal’s ALS, telling us we should try meditation, a particular vitamin…[Read more]

Although this episode might help raise awareness that ALS is not easy on people with ALS or their loved ones, and also help raise awareness that ALS is a fatal, not curable disease, like Mark, I found the episode to be disturbing. The ending might be considered “happy” (if you can accept the consequences), but I did not leave feeling happy at all.

Although this episode might help raise awareness that ALS is not easy on people with ALS or their loved ones, and also help raise awareness that ALS is a fatal, not curable disease, like Mark, I found the episode to be disturbing. The ending might be considered “happy” (if you can accept the consequences), but I did not leave feeling happy at all.

Unfortunately, ALS or MND is a diagnosis of exclusion, and is an “umbrella” diagnoses for a variety of progressive degenerative neuromuscular diseases that present with a broad range of symptoms. It is a nasty diagnosis. As of now there is no known way to cure ALS/MND or even to decisively stop its progression. In addition to ruling out more…[Read more]

Kathy – If you don’t make a decision and you are hospitalized for some emergency that requires a tracheostomy to keep you alive, the doctors are required by law to do the tracheostomy – unless you are able let them know that you don’t want one. That is why PALS are advised to make that decision ahead of time- and put their decision in writing.

I commend you checking into whether to have a tracheostomy. It is a big decision, and you will find many PALs who have chosen to have the procedure have different experiences. Some are very happy with the choice, some regret it.

My husband had a tracheostomy. The trach extended his life with ALS for several years. I cherish the extra time I had…[Read more]

Regarding the feeding tube constipation: most PALS whose food intake is 100% via feeding tube develop some problems with elimination, possibly due to a combination of the of lack of fiber in most liquid diet formulas, decreased exercise, and maybe also part of the decreased muscle tone in ALS.

Miralax might help. Miralax is not a stimulant or a…[Read more]

I recently read about another test (would probably be through something like a spinal tap) that might facilitate an earlier diagnosis:…[Read more]

I speak from a variety of perspectives: As a Physical Therapist who works with PALS, as a former caregiver for my now deceased PALS husband, and as a former Care Manager for the ALS Association. What I have observed is if a PALS has a slow progression in their lower extremities, then properly fitted AFOs can be very helpful and very useful. But…[Read more]

Amanda – If they don’t have familial ALS, I don’t think most PALS get a genetic test to see if they have  a genetic mutation that might predispose them to ALS, and they are just considered “sporadic”. Familial ALS is inherited, as opposed to a developed mutation, and is carried in families, and right now there are I think four different genes…[Read more]

Both I an my son had mild reactions to our Pfizer vaccines (feverish, achey), and our reactions lasted 3 to 4 days – but it was so worth it. The reaction will not kill anyone, COVID could. And even if it does not kill you, contracting COVID, even a mild case,  can cause some serious and perhaps permanent issues.

I can understand a PALS choosing…[Read more]

Interesting abstract. The researchers did find a correlation with ALSFRS  and the amount of white matter degeneration, which could help predict speed of the ALS progression. But the study was very small and relatively brief – 66 PALS and 43 healthy controls over three clinic visits (the abstract did not indicate actual time span.) A much larger…[Read more]