Looks like this is very early in the study. Dr. Prodromos usually deals with orthopedic treatments, so this is different for him. In this study, only 18 patients total with a mixture of neurological diseases (ALS, Kennedy Disease, Congenital Myasthenic Syndrome, or Lewy Body Dementia) had 32 AlloEx Exosome treatments to assess safety,…

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Dagmar – Have you tried using an AAC device to give you audible voice control of your phone, TV, and computer? That should give you a clear voice. (My husband passed away in 2014. He used eye gaze AAC to give him an audible voice – but back then our Tv, phone, etc did not respond to voice controls, and he could not type or use his hands, so…

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I don’t know what your budget is, but if you can afford a power recliner that you can also sleep in, that is something that could come in handy down the road, as a potential hospital bed alternative. Here is an example – https://zecliner.com/products/zecliner-model-2-plus-umber-power-lift-recliner

Either is very uncomfortable when you have temperature deregulation and your body can’t handle temperature changes. My husband didn’t tolerate hot OR cold – but being overheated is more dangerous. You can be bundled up when its cold, and generally be ok. But if it is hot and you aren’t sweating at all you can develop heat stroke, which can be…

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Hi Monica,

Your question is a very good one! The answer can be different depending on how your ALS is impacting your ability to move.

My husband lived with ALS for 5 years, and over time his best bed options kept changing. We had to modify his bed situation frequently. An adjustable base can be very helpful in getting in an out of bed or…

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Wow, Matthew, thank you for sharing this! Your history certainly does support the idea that if an individual is predisposed to or is vulnerable to developing ALS, it could be very important to listen to your body and not regularly push through pain when exercising or competing in athletics.

Amanda‘s answer is extremely well stated and comprehensive. I completely agree with everything she wrote. Because ALS is such a complex disease, composed of many different sub types, and also because every individual’s health and fitness level very widely, at this time, the best thing your daughter can do is to learn as much as she can, and to…

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Julie, it is so caring of you to be concerned in this way. ALS is such a complex disease, and we are learning more about it every day.<div>
</div><div>My understanding, both as a physical therapist who worked with people with ALS, and also a caregiver for my husband, who had ALS, is that being healthy and strong is a good thing. It gives the body… Read more

I would absolutely require a caregiver to be fully vaccinated – and also that they not work if they knew they were sick. PALS are very vulnerable and that vulnerability needs to be acknowledged and addressed.

My husband passed away from ALS in 2014, so he did not have to deal with COVID. However, there were other contagious illnesses around,…

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Wonderful, meaningful, and very helpful, Lorraine.

i agree, Lisa, NIV is very safe and can help extend life and improve respiratory function. DPS, on the other hand, can add physical stress to an already weak respiratory system, and for some PALS that can shorten life expectancy.

It seems from what I have read, that for some patients with primarily lower motor neuron respiratory insufficiency, DPS can extend time to respiratory failure. But this is not true for most PALS. You would want to consult carefully with your medical team. Here is an article from Nature Reviews Neurology that indicates DPS can actually…

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Well put, Amanda. It is horrible to be diagnosed with ALS or to have a loved one diagnosed with ALS. Many of us desperately grasp at all kinds of untested treatments. My husband and I certainly did – and we spent much needed money on them. But the only impact these treatments had on Hal was to drain our savings, making caring for him as… Read more

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… 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… 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… Read more

Here is an article th twas in ALS News Today last year finding 22 genetic mutations linked to sporadic ALS

Mutations in 22 Genes Linked to Sporadic ALS in Large 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… 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… 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… 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… Read more

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