Fran Finney
Forum Replies Created
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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 life threatening.
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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 keeping your head elevated to make breathing at night easier. If you are able to rollover and shift in bed, a firm mattress it will take less effort for you to move in bed. But if a PALS cannot roll over at all, then some sort of soft mattress topper can help make bed less uncomfortable.
(We ended up getting a sleep number split king bed with an adjustable base, and that worked for him for quite a while)
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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 pay close attention to and listen to her body. If she sees or feels. changes in her recovery patterns or responses to exercise, that would be a strong indication to back off. Being healthy gives her a good baseline to deal with the onset or progression of ALS. But pushing beyond what her body will tolerate might not be so good.
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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 a better baseline, if in fact a person does develop ALS. It is possible that serious, severe over training, involving head injury, overheating, and other extreme stresses to the body, might throw a person who is already on the edge of developing ALS over that threshold. But in the case of your daughter, if she is training in a reasonable, objective, and practical way, and is not pushing through, severe, unusually difficult training, then her Running is not going to cause her to develop ALS </div> -
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, and one time a caregiver came in with bad bug. My husband got sick, the bug developed into pneumonia, and my husband had to be hospitalized. His extended illness and hospitalization resulted in a significant and horrible progression in his disease. After that I was MUCH more careful and I would not allow people who seemed sick, even family, to be in the same room as he was.
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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 shorten life expectancy in some PALS. https://www.nature.com/articles/nrneurol.2015.149#:~:text=The%20patients%20who%20received%20diaphragm,noninvasive%20ventilation%20group%20had%20died.
nature.com
Diaphragm pacing is associated with reduced survival in ALS patients with respiratory insufficiency - Nature Reviews Neurology
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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 his disease progressed more challenging.
I certainly empathize with people looking for and trying untested treatments. But really the only way to find out if a potential treatment can be beneficial is through thorough research and clinical trials. And that, unfortunately, takes both time and funding.
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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 him. Two gifts he really appreciated then: a decorative moving xmas light display that projected onto the ceiling, and a lava lamp that we set up high, where he could watch it change from his position in bed. Helped those long nights pass.
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Thank you, Dagmar. We appreciate YOU too!
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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 had ALS. He was considered a “genius” by many and won national math contests. He loved to solve complex puzzles and write codes. Hal lost his ability to do quick mental math early in his ALS progression, and he also believed the speed of his thinking slowed along with the weakening of his body.
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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 ASAP!
Here is a link to and an excerpt from a (relatively) recent review article:
https://www.targetals.org/2022/03/08/its-not-just-physical-als-dementia-cognitive-impairment-and-memory-loss/
“The decline in social cognition and executive and verbal memory functions we see in some people with ALS cannot be blamed on physical deterioration alone. In fact, a 2020 study found a progression of cognitive and/or behavioral impairment in more than one-third of patients with early-stage ALS. Other research suggests that about half of ALS patients demonstrate mild to moderate cognitive and/or behavioral impairment, and about 10% to 20% of ALS patients meet the criteria for dementia. Roughly 30% of ALS patients develop impairment without dementia, and up to half of ALS patients are cognitively normal.” -
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/
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My husband, when he was living with ALS, preferred “Warrior”.
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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 regimen, Reiki, acupuncture, breathing exercises (after he had a tracheostomy!),etc. But despite those “helpful” bits of advice, we became more appreciative of any expression of interest by friends and family. Especially the friends and family who remained close and supportive throughout my husband’s progression, to the the very end.
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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 diagnosable causes like tumors, MS, MG, stenosis, etc, there are a few things that do need to be present to receive an ALS/MND diagnosis, and those include an abnormal EMG. I don’t know that one EMG can rule out the diagnosis, but it is encouraging that your EMG came back normal. Many other factors have neurotoxicity and can cause progressive neurological changes – such as infections, exposure to toxins, tiny defects in your CNS blood brain barriers, etc.
It is good you are continuing to pursue your diagnosis – and hopefully will be able to pinpoint what is causing your progression of symptoms.
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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 with him.
I know many other PALS who have also made that choice. The life of a PALS who has had a tracheostomy can vary a lot depending on many things: Where they will live (At home? In a subacute hospital?) If at home, what will be their caregiving situation? (Family members only? Nurses/professional caregivers part time? Nurses/professional caregivers 24/7?)
Your geographic location can have an impact too. Some areas have much better medical care and support for PALS with tracheostomies than other areas. If you are in the USA, I recommend you contact your local ALS Association for information about local support for PALS with trachs.
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I recently read about another test (would probably be through something like a spinal tap) that might facilitate an earlier diagnosis: https://www.neurologyadvisor.com/topics/neurodegenerative-diseases/elevated-levels-of-neurofilament-light-and-heavy-chain-as-diagnostic-biomarkers-for-als/?utm_source=newsletter&utm_medium=email&utm_campaign=na-update-hay-20210921&cpn=neuro_all&hmSubId=8Z2OTprZSSA1&hmEmail=w09-ckhqUPfRCuppwXwR1fiAWyDGhZct0&NID=1326184821&email_hash=c61868f9b224fc324de423ed14eb8e2d&mpweb=1323-154011-44948
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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.
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Wonderful, meaningful, and very helpful, Lorraine.
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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.
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I accidentally submitted this second reply and can’t figure out how to delete it! But I will clarify that I think raising awareness is important, and that Hollywood is trying to do that. But often their portrayals can be painful to watch.
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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.
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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.
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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 bulk laxative. It is an osmotic laxative and works by retaining water in the gut, increasing the water content of the stools. It is safe and often used to address ALS related constipation. It is used for infants and children who have spinal cord damage. People don’t develop tolerance or dependency to it. If Miralax is not enough you can always carefully move into more aggressive laxatives. (But do be careful not to overuse stimulant or the harsher versions of bulk laxatives. Using too much of those could irritate your gut. No one wants diarrhea or IBS when they have ALS!)
Sometimes a change in food formula also helps. There are some liquid food formulas that have more whole food ingredients and are higher in fiber. Two examples are “Liquid Hope” and “Kate Farms”. PALS are often able to get Medicare to cover those formulas but you will need some paperwork from your doctor.