@franfinney
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Fran Finney replied to the topic When Should They Keep Their Mouth Closed? in the forum Living With ALS 3 days, 8 hours ago
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]
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Fran Finney replied to the topic Is Amazon’s “Solos” a good example that ALS recognition Is growing in Hollywood? in the forum ALS In The Media 4 months, 2 weeks ago
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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Fran Finney replied to the topic Is Amazon’s “Solos” a good example that ALS recognition Is growing in Hollywood? in the forum ALS In The Media 4 months, 2 weeks ago
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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Fran Finney replied to the topic Young man with suspected bulbar ALS – what on earth should I do now? in the forum Diagnosis Information and General Questions 6 months ago
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]
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Fran Finney replied to the topic Tracheotomy in the forum Living With ALS 6 months, 1 week ago
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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Roxanne Kusske and
Fran Finney are now friends 7 months ago
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Fran Finney replied to the topic Tracheotomy in the forum Living With ALS 7 months, 1 week ago
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]
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Fran Finney changed their profile picture 9 months, 4 weeks ago
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Fran Finney replied to the topic Share your tips for dealing with embarassing "bathroom" topics in the forum Living With ALS 9 months, 4 weeks ago
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]
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Fran Finney replied to the topic Why is ALS so difficult to diagnosis? in the forum Diagnosis Information and General Questions 10 months, 2 weeks ago
I recently read about another test (would probably be through something like a spinal tap) that might facilitate an earlier diagnosis:…[Read more]
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Fran Finney replied to the topic AFOs: Are they worth it? in the forum Mobility Aides, Assistive Technology and Medical Equipment 1 year ago
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]
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Fran Finney replied to the topic Genetic Mutation or Sporadic ALS in the forum Living With ALS 1 year, 3 months ago
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]
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Hello Fran,
There are at least a dozen genes with mutations, and some of those genes have multiple mutations identified. Some researches suspect that all cases involve a mutation, just many mutations have not been identified yet. There are several theories so we will see how this all pans out hopefully sooner than later. I attended a zoom meeting…[Read more]
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Fran Finney replied to the topic Oh my COVID vaccine in the forum Coronavirus (COVID-19) and ALS 1 year, 4 months ago
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]
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Fran Finney replied to the topic New way identified to track severity and progression of ALS in the forum Research Topics 1 year, 6 months ago
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]
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Fran Finney replied to the topic Massage Therapy & Acupuncture: Have They Helped Your ALS? in the forum Living With ALS 1 year, 10 months ago
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]
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Fran Finney replied to the topic What is the hardest thing being a Caregiver? in the forum A Forum for ALS Caregivers 1 year, 11 months ago
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]
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Fran Finney replied to the topic Information or results on RILUZOLE in the forum Research Topics 2 years, 1 month ago
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]
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Fran Finney posted a new activity comment 2 years, 1 month ago
Thank you, Dagmar, for your thoughtful answer. I still am concerned that high level activity could impact progression, though. The study doesn’t say just balance is affected. It says that the cerebellum showed more metabolic activity in patients who had never exercised regularly. The cerebellum IS responsible for balance, but it is also…[Read more]
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Fran Finney posted a new activity comment 2 years, 1 month ago
Unexpected finding, for me. I’m going to follow this research.
My husband was very athletic before he was diagnosed with ALS – a marathon runner, stunt skier, dancer, karate, yoga, etc. I thought his athleticism might have helped him adapt to a very aggressive ALS, but now I wonder if his ALS was even more aggressive as a result of his…[Read more]
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Fran – – I am so sorry your husband has such an aggressive form of ALS. Although it does sound like he did a good job adapting to the swift changes.
Going back to the article: participation in athletics led the researchers to believe the pALS had more difficulty adapting to changes in balance. The key words are the researchers “suggested” this…[Read more]
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Thank you, Dagmar, for your thoughtful answer. I still am concerned that high level activity could impact progression, though. The study doesn’t say just balance is affected. It says that the cerebellum showed more metabolic activity in patients who had never exercised regularly. The cerebellum IS responsible for balance, but it is also…[Read more]
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Fran Finney posted an update 2 years, 1 month ago
I just read the ALS News Today article about correlation between a lifetime participation in sports and the brain’s decreased ability to adapt to ALS. Very troubling!
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Ye, that was an interesting finding. Apparently the decreased ability was in relation to changes in balance and voluntary muscle control.
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Unexpected finding, for me. I’m going to follow this research.
My husband was very athletic before he was diagnosed with ALS – a marathon runner, stunt skier, dancer, karate, yoga, etc. I thought his athleticism might have helped him adapt to a very aggressive ALS, but now I wonder if his ALS was even more aggressive as a result of his…[Read more]
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Fran – – I am so sorry your husband has such an aggressive form of ALS. Although it does sound like he did a good job adapting to the swift changes.
Going back to the article: participation in athletics led the researchers to believe the pALS had more difficulty adapting to changes in balance. The key words are the researchers “suggested” this…[Read more]
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Thank you, Dagmar, for your thoughtful answer. I still am concerned that high level activity could impact progression, though. The study doesn’t say just balance is affected. It says that the cerebellum showed more metabolic activity in patients who had never exercised regularly. The cerebellum IS responsible for balance, but it is also…[Read more]
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