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Discussion in 'The Mainboard' started by Prospector, May 22, 2019.
even the bad memory cares are ~6k+
Hmmm. And my alert said I was quoted...
Wife’s dad turned 55 this year and was diagnosed with FTD early this year. The most caring and sweetest man I have ever met.
The problem was it was diagnosed too late. The disease helped bankrupt his company and all personal wealth. The last few years of spending habits we all just chalked up to his business doing well and no one really questioned. Instead, it was the exact opposite and he has no concept of money.
In The last few months the regression has been rapid and he now spends 24/hr a day in front of the TV. Very sad to see.
FTD is highly genetic as he, his mom, grandmother, and his brother all have had it at the same age. My fear would be my wife gets it and any future children get it. 50/50 chance of getting the mutated gene.
You were. As someone who has lost a parent to Alzheimer’s, I deleted my response because it was inappropriate.
Sorry to hear about your mom’s diagnosis. Enjoy every day you have with her since it will get painful for you emotionally/mentally down the road.
Healing the brain: LSU professor sees Alzheimer's patient improve after hyperbaric oxygen therapy
BY SARA PAGONES | [email protected]
Feb 10, 2019 - 4:30 pm
For five years, the 58-year-old woman diagnosed with Alzheimer's disease had experienced slipping mental abilities, a decline that was beginning to accelerate.
"Think of it like a straitjacket that gets tighter and tighter," said Molly Fogel, director of educational and social services for the Alzheimer’s Foundation of America.
But for this particular patient, one of 5.7 million Americans who suffer from Alzheimer's disease, the straitjacket is looser following treatment with hyperbaric oxygen therapy.
Dr. Paul Harch, a clinical professor and director of hyperbaric medicine at the LSU Health New Orleans School of Medicine, and Dr. Edward Fogarty, of the University of North Dakota School of Medicine, have outlined her hopeful case in a report published in the peer-reviewed journal Medical Gas Research.
After 66 days of hyperbaric oxygen therapy, the woman regained some of what the disease had stolen from her. Her memory and concentration improved, as did her ability to do crossword puzzles and use the computer.
But the case study goes beyond what the patient reported about her symptoms or her performance on tests, like drawing the face of a clock. The study shows visible improvement of her brain itself on PET scans taken before and after the treatment.
The result is images that Harch said a third-grader could look at and say: "That patient looks better."
"We demonstrated the largest improvement in brain metabolism of any therapy for Alzheimer's disease," said Harch, who described metabolism as the gas that makes an engine go.
The PET scans taken a month after the treatment showed a global improvement in brain metabolism of 6.5 percent to 38 percent, according to the study.
"HBOT in this patient may be the first treatment not only to halt but temporarily reverse disease progression in Alzheimer's disease," Harch said.
That would be a significant development for a disease that is considered irreversible. Alzheimer's disease affects 5.5 million Americans over age 65 and 200,000 who are younger, like the patient in Harch's study. The most common form of dementia, it is the sixth leading cause of death in the United States, according to the National Institutes of Health.
It's also on the increase, according to the Alzheimer's Association, with deaths from the disease increasing 123 percent from 2000 to 2015. By 2050, the association said, the number of cases is expected to reach nearly 14 million.
As the Baby Boom generation ages, Harch said, the negative consequences of their excesses in earlier decades, including alcohol and drug abuse, will make cognitive decline faster.
"The load of toxins, food additives, pesticides in chemicals — all take a toll," he said.
To Harch, Alzheimer's is an injury to the brain, and hyperbaric oxygen therapy is used to treat wounds anywhere in the body, including the brain. He has treated stroke victims, patients suffering from post-traumatic stress disorder and those with concussions as well as Alzheimer's patients.
The woman in the case study is the first in a series of 11 Alzheimer's patients whose improvement has been documented with PET scans.
Harch has also treated near-drowning victims, including a toddler who fell into her family's backyard pool. In that case, he was able to show reversal of severe brain damage, an actual regrowth of brain tissue, after hyperbaric treatment. The child, who doctors had said would never walk or talk again, now is doing both.
Hyperbaric oxygen treatment puts patients in a chamber where they breathe 100 percent oxygen under increased atmospheric pressure.
The increased pressure and oxygen turn on genes for growth and repair hormones and inhibit those that cause inflammatory response and cell death, Harch said.
Alzheimer's is primarily a vascular disease, Harch said. The protein plaques and tangles in the brains of Alzheimer's sufferers could be the end product of injury, he said.
Hyperbaric oxygen therapy reduces the burden put on the brain by the protein plaques and tangles. But Harch said it targets all four pathological processes that have been identified in Alzheimer's patients, including microcirculation and dysfunction of the mitochondria, which provide the chemical energy for cells to live.
Alzheimer's is a progressive disease that affects memory, thinking and behavior. It disconnects those who have it from themselves and their environment, Fogel said. People with Alzheimer's can find themselves overwhelmed simply by all the items in a bathroom or a closet.
After 21 treatments, the patient in Harch's study reported an increase in her energy and activity level, as well as an improved mood. She could draw the face of a clock correctly, perform daily activities and work crossword puzzles.
After 40 treatments, she had increased memory and concentration, according to the report. She slept better and had a better appetite. She also felt less disorientation and frustration, with more good days than bad.
The study notes that she had a recurrence in her symptoms after the treatment stopped, but she was then retreated over the next 20 months and her symptoms stabilized.
"I talked to her and her husband the other day," Harch said. "She's hanging in there, doing fairly well."
The results of the study suggest that Alzheimer's can be treated in the long term with hyperbaric oxygen therapy along with drugs, Harch said.
The challenge now is to inform doctors and overcome what he calls a misunderstanding of the science behind hyperbaric oxygen therapy, which he describes as gene therapy.
"Medicine is so pathetically slow," Harch said. "Now the science is out, and we need to inform doctors and change the perception."
My mom has been dealing with it for a few years, but it's been really bad the last two. She lost her husband, older and younger brothers, two in-laws and two cousins within a week and snapped.
I've her primary caregiver now and it is a struggle but I do what I can. We're trying to find a good memory care center for her as her assisted living place isnt equipped, but it's hard.
Can you provide the link?
We went through those struggles with my grandma. We put her in two different places in Missouri and they both sucked and over medicated her and she was nothing but agitated or a zombie... two extremes.
Finally got her into a nice memory unit in Rogers AR and she’s managing much better, and it’s right near two of the biggest hospitals in NWA. She’s completely gone though, and it’s tough seeing her like that. My mom feeds her lunch and dinner every day, and I’m really the only grandkid that visits her.
Hoping things go as smooth as possible for you. You need to find some professional care for her though, it’s too hard for a single person to do.
Appreciate it. We're looking here locally but I have family in SW ATL so we may end up there because there are so many better options.
I do appreciate it though
Man this post hits home.
Been taking care of my old man for a solid two years now. I fear the rapid decline that’s coming.
Terry Jones passed today. Long battle with dementia. Guy was a generational humor.
I put it in the depression thread but my mom stayed with me as we transitioned into a new facility. Man it was hard and scary. The mood swings were tough but you have to remember that isn't really her in there, but I'm still dealing with the fatigue.
Also, my uncle is showing signs and that REALLY scares me.
Terrible feeling. Went through it with my grandma. She lived in the same city I went to college at. Weekends went from Brewer games together and baking food to soups in the face and screaming fits.
Sorry to hear that. One thing I look for in communities, and typically see with the better operators, are dedicated sensory mitigation spaces. Low light (usually pinks and blues), low audible (often with a sound machine), calming stations to help the residents balance when they have erratic/irritable spells. Not sure if you could set something similar up in your home for visits but it might be something to consider.
I have access to industry data (regulatory, operator metrics, etc...) not readily available to the public so please feel free to PM if you think I may be able to help or answer any questions, (and that goes for anyone reading this). What you’re dealing with is an incredibly arduous endeavor with minimal unbiased resources, but it’s manageable and there are reputable servant minded operators who provider quality care. However, there are absentee, profiteering, managers that will deprive care for higher margins. “If we just water down the soup, we can make an extra quarter a day” mentality. Obviously nothing compares to the eye test in assessing the quality of care, but I’m happy to see what I can dig up if anyone has any requests send a pm. Good luck and know that your challenge is appreciated and admirable.
I appreciate it bro and will definitely reach out
One thing I found very helpful was reaching out to friends in the medical community for references on places for Dad. I was really lucky in that I was in the wedding of the ARNP at my Dad’s neurologists office. She was an invaluable resource in getting me to the right people and recommending the best facility for dad’s needs as well.
I’m quickly approaching the stage where I am needing to get some sort of external help for my dad. To start with, someone coming in for a certain amount of time each day. Eventually, I’m sure it’s going to have to be a full on facility.
Where the hell do I start? I’m basically at the stage where I just need an idea of what I’m looking at financially to help cure the almost crippling anxiety it causes. He has a little money (I’m sure it’s poor by TMB standards) but it definitely is not a lot. I know he despises the thought of his retirement money going towards “wiping his ass” as he would say, but sadly we are almost to that point.
My biggest fear is trying to cut costs in this situation, and becoming something evil after hearing my dad was mistreated in one of these lower cost facilities. I read a horror story a year or so ago and had to fight back rage tears even though I didn’t know anyone involved, just couldn’t help imagining that being my dad.
A place for mom was ready good. They sort through what you are looking for. They set up tours and really help. I would just Google senior care and start there.
Reach out to your local ALZ.org chapter. They can help guide with local places as well as help with understanding finance options. They’ve been great to deal with after my trip with my dad. My mom is finally making the call to put dad in an assisted living facility. In my opinion it’s years overdue. Her health has taken a dramatic hit taking care of him.
On another note I’m starting my 2020 campaign to raise money for Alzheimer’s research if anyone wants to throw a few bucks in I would appreciate it.
That is rough, hope for the best for you.
my grandpa had Alzheimer’s at a very young age, never really knew him. He was out already when I was old enough to remember him. Terrible disease
DNA "Scissors" Could Cut Out the Alzheimer's Causing Gene in Mice
Feb 03, 2020, 08:43 ET
SEOUL, South Korea, Feb. 3, 2020 /PRNewswire/ -- Scientists at Dongguk University successfully treated Alzheimer's disease in mice using the gene editing tool CRISPR-Cas9. They used the tool to edit out the Alzheimer's causing gene in the mice, thereby improving their memory and other cognitive functions. While this is only a first step and much research remains to be done, these promising results put gene therapy on the map of possible treatments for Alzheimer's.
Treating Alzheimer's disease with the help of gene editing tool CRISPR-Cas9
As Alzheimer's disease continues to elude the efforts of modern medicine, scientists turn to gene editing technology to treat, or 'manage' it. Alzheimer's is commonly associated with the BACE 1 gene, which drives the production of amyloid-β proteins in the brain. In the brains of Alzheimer's patients, this protein accumulates on the outsides of neurons or nerve cells as "plaque," and is thought to be one of the main causes of the disease. Using "DNA scissors" called CRISPR-Cas9, which can cut out a specified part of a DNA sequence, Dr. Jongpil Kim and his colleagues from Korea (Dongguk University) and the USA attempted to edit out the BACE 1 gene in the neurons of the adult mouse brain.
Theirs is the first in vivo attempt (using cells inside living mice) to test the effectiveness of CRISPR-Cas9 in stopping Alzheimer's progression. Their ultimate ambition—like that of many others in the field—is to develop treatments for different forms of dementia, which would dramatically improve patients' quality of life. "We aimed to see whether CRISPR-Cas9, one of the latest developments in biotechnology, can open up a new direction for treating dementia, which is, at present, considered an incurable disease," Dr. Kim says.
Their results indeed look promising. Within 8 to 12 weeks of treatment with the CRISPR-Cas9 technology, the plaque surrounding affected neurons in the mice dramatically decreased and their cognitive functions improved substantially. The mice also showed better associative learning and spatial working memory. Further, there was no evidence of increasing mutations in other, non-targeted parts of the genome, suggesting minimal side-effects.
All this indicates the huge potential of gene editing technologies to treat neurodegenerative diseases: by removing faulty genes at their source, disease progression can be halted, or even reversed, in just a few weeks.
The authors advise caution, however, as gene editing cannot be undone. In Dr. Kim's words, one must ensure that "no detrimental, and potentially very rare, genomic alterations are caused". Thus, this technique requires much more research before it can be applied to human subjects.
Nonetheless, as another remark by Dr. Kim goes, "this study shows how CRISPR-Cas9 can be applied to the treatment of neurodegenerative diseases as well."
Title of original paper:
In vivo neuronal gene editing via CRISPR–Cas9 amphiphilic nanocomplexes alleviates deficits in mouse models of Alzheimer's disease
Departments of Chemistry and Biomedical Engineering, Dongguk University
Kind of snapped off in a place I shouldnt have, but we're moving my mom to a full memory care facility tomorrow. The decline has been sharp in the last month and it sucks seeing your mother and she doesn't recognize you half the time. Thankfully, and if you ever need this, caring.com was a huge help. I got someone who set visits for me and they were really helpful. If you do have to deal with this, they are very helpful.
Hopefully this works out and can be her stay until EOL. Not sure I can mentally take any of this again.
Been through it twice with my parents. So difficult. Hang in there.
Damn I can't imagine man. Stay strong.
Stay strong. Dad is currently in a program to evaluate him on where will be best to place him.
mom has fallen a couple of time and now has fallen twice this week. Thankfully nothing has been broken. It is mostly her walking around facility if she is awake and not exhausted. She is so knock kneed it is getting very difficult for her to walk. Going to be getting Hospice involved for more help with her. She has really declined over the last couple of weeks.
sorry to hear
She treasured her independence and her intellect. Cancer would have been her preference.
She turns 80 this weekend. Her mom lived healthy for 96 years. The thought of mom living w this for 16 years terrifies me.
Today was actually pretty good. We had a couple of issues early but got her dropped off and had lunch. Came back later and she was just having a good ole time and wanted nothing to do with visiting me so I let her be.
I feel better that she's there with similar people so all things considered, its a win.
Sorry to hear all this, man. Glad to hear you've searched for and found the support you need to support her.
Just want you guys to know that y’all are some tough cookies.
Went through this with my grandfather. It was rough. Prayers and thoughts your way
Unfortunately she passed back in December. Was tough, but she continued to decline over the fall and it was somewhat a relief to know she wasn't dealing with the pain and suffering anymore. Thanks for the kind words.
sorry to hear that. As you mentioned, it’s a blessing she’s not suffering anymore. That disease is a real motherfucker.
When my dad was diagnosed 8-9 years ago, we (my family) collectively weren’t that concerned. “Parkinson’s doesn’t seem like that big of a deal...it’s manageable through medication and therapy. Look at Michael J Fox.”
Yeah, we were really really really wrong on that. Parkinson’s might be the worst kind of death sentence imo.
The White House Says Nursing Home Regulations Are Too Tough
November 30, 20198:42 AM ET
Heard on Weekend Edition Saturday
The Trump administration wants to reduce the "burden" on nursing home operators by relaxing rules governing the facilities. Critics see troubling implications for the care of millions of residents.
SCOTT SIMON, HOST:
Rolling back federal regulations has been a cornerstone of the Trump presidency. Now the administration has proposed rolling back some Obama-era rules for nursing homes and how they care for more than 1.3 million residents. NPR's Ina Jaffe covers aging and joins us now. Ina, thanks for being with us.
INA JAFFE, BYLINE: Hi, Scott.
SIMON: And what's the administration's reasoning for this?
JAFFE: Well, they say it'll reduce regulations that they call burdensome and inflexible. They also say that the proposed new rule will save nursing homes more than $600 million a year and that this will free up funds to improve patient care, though there's no requirement that the nursing homes spend the savings that way.
But there could be changes before the rule is finalized. And that's why the Centers for Medicare and Medicaid Services, which oversees nursing homes, didn't want to do an interview.
SIMON: These are proposed changes. What might change if they're approved?
JAFFE: Well, one proposal that's attracted a lot of attention would change the way antipsychotic drugs can be prescribed. Now, Scott, these are drugs that are approved for treating serious mental illnesses, like schizophrenia. They also come with a black box warning that says they can raise the risk of death in older people with dementia. But in nursing homes, that's usually who gets them. It's a practice that's widely criticized. So the Centers for Medicare and Medicaid Services, known as CMS, has spent years trying to get nursing homes to reduce the use of antipsychotics. But critics say the proposed new rule would actually make it easier to prescribe them.
SIMON: Why would the government make it easier to do something they've been discouraging?
JAFFE: Well, currently, if a nursing home resident gets a new prescription for an antipsychotic, it can't be renewed after two weeks without a doctor's exam. But under the proposed rule, the doctor could keep renewing the prescription without seeing the patient again for a month or two. This has been condemned by elder rights organizations like the Long Term Care Community Coalition. Their executive director, Richard Mollot, told me that the physician he's consulted also condemns the proposal.
RICHARD MOLLOT: What he said was that no other insurance company would ever accept that a doctor didn't have to see a patient before continuing a prescription for medicine. But CMS is saying now that that's OK for nursing homes in this very vulnerable population. And people die from this. They're affected so catastrophically.
SIMON: Nursing homes see it differently, Ina?
JAFFE: They do. Dr. David Gifford is the chief medical officer of the American Health Care Association. That's a trade group representing most nursing homes. And he says that the proposal requires doctors to document their rationale for continuing an antipsychotic, and that's actually an improvement.
DAVID GIFFORD: It requires much more guidance from the physician to the nursing staff as to when to use them and why to use them. So I think they did a nice balance to see if these medications are being used appropriately.
JAFFE: And what Gifford calls balance is the kind of thing the nursing home industry trade group has been asking for since they sent a letter to then-President-elect Trump last December.
SIMON: What are some of the other major changes in this proposal?
JAFFE: Oh, they cover everything from who runs the kitchen to controlling infection to how to file grievances. In all of those cases, you could say that standards or staff time have been reduced.
SIMON: What has made the Trump administration turn its attention to the nursing home industry right now?
JAFFE: Actually, they've been chipping away at Obama-era rules for a while. Here's just one example. They've changed the way that fines are assessed for substandard care. The result is that the average nursing home fine has dropped by about a third. And there's another regulation proposed in this package that could result in a further reduction of fines.
SIMON: NPR's Ina Jaffe, thanks so much.
JAFFE: Oh, you're welcome.
IT checking in:
It seems as though the folks from russia believe I have it. Was getting e-mails fairly regulary from them. IF i do end having it in the future, I'm going to be pretty tore up about it. I mean to have that would pretty damn bad, and possibly life altering if I am to have a future.
My dad has been stuck inside for two weeks and is slipping badly. My mom is trying to figure out how to best move forward. He’s 100% a goner if he catches the rona.
My dad passed away last week. We’re sad but blessed he’s not suffering with it anymore. We had the service last Tuesday which happened to be my moms birthday. We all said this like a new beginning for her as she suffered a lot as the caregiver. Hoping she regains some of her health now.
So sorry dude. You said it best that he's not suffering. Stay strong.
We can't visit my wife's aunt anymore. I'm guessing she will have no idea who anyone is after this is over. She already didn't know our names but you could tell she knew we were there to see her
Depends on the market, there have been price wars in over built markets that can’t give their rooms away. Certain parts of DFW come to mind for example.
Just got off the phone with my mothers facility. With her decline speeding up we need to start thinking about end stage plans and possibly hospice. I knew we'd have to get to this point but its moved so quickly the last couple months, especially when her not able to have visitors.
Just fucking sucks
Misery. Sorry Beeds07
Sorry man. Hate to hear that
Sorry man :(