Fran Finney

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]

My husband had a fast progression – no speech, walking, or eating after one year, and a tracheostomy after two.  After he was first diagnosed, we started with daily massage at home (I am a Physical Therapist, have a massage table, and could do that for him.) We also invested in bi-weekly acupuncture. However, after about a year though, he asked…[Read more]

I was caregiver for  my husband, who lived with ALS form 2009 until 2014. The toughest challenges I encountered were the unexpected and unpredictable bad situations that inevitably occurred: Power wheelchair breaking while he was fully reclined in it and before we had a hoyer lift; his extended bad case of diarrhea later, when he was completely…[Read more]

Hi, Rick,

In response to your comment about having “normal levels of glutamate in your blood”: around 40% of PALS have elevated glutamate in their CSF – cerebrospinal fluid – not in their blood. Laboratory blood tests can’t measure CSF levels. To check your CSF glutamate level you would need to have a MRS study done, (magnetic resonance…[Read more]