Sympathies. I’m running lock step with you including BIIB trial. Many think I’m better as a result of it. I’m, like you it seems, am pretty good in th here and now but lost much l.t. Memory some time ago and ability to navigate w/o GPS. The loss of the right word has just crept in. As I presciently told my wife 10 years ago I planned to have a contract taken out on me having witnesses too much suffering age 85ish. As just inches away, my thought re right to die in parellel with yours. Fortunately I’m still active inc. exercising ( 4.7 mi walk yesterday...paying the piper today). Just reread ALZ’s 7 steps down...discouraging...we’ll see.
Best, John
63
Thank you for helping so many others, including myself. May you continue to enjoy the simple pleasures of life for a long, long while. You are not alone in your battle.
46
Well well written.
Thank you.
39
Philip S. Gutis,
I mentioned about prof. Dale Bredesen of UCLA. Only this weekend , you can watch his interview. It is not too late to study his research.
https://regainyourbrain.awakeningfromalzheimers.com/encore
6
Dear Philip, Thank you for sharing your experience. My mother died of Alzheimers: what a grim disease. That said, your courage and ability to have moments of joy shines through in your words. Love to you and your family.
29
Dear Philip,
Bruce is correct. I do have a friend with this disiese and already read this book.
Dr. Dale made a strenuous research for more than 20 years on Alzheimer and today he developed a protocol and is helpíng hundreds of people. He founded the Buck Institute that is centered to continue to work to help people with this disease.
For your knowledge this protocol is already approved by FDA.
His process deals with people with recent experience with this disease, but they are open to help you.
My suggestion is to read dr. Dale´s book "The end of Alzheimer". It is really worth, not only for Alzheimer´s patients, but his recommendation is also directed for people over 40 in general.
7
It would be a good idea to contact Dr. Dale E. Bredesen. He has written a book on effectively treating Alzheimer's disease. Study results are available at https://www.aging-us.com/article/100690/text. The treatment is complex but doable. Don't accept, fight.
2
@Bruce Is it right to segregate, Alzheimer's an age related cognitive decline? About fifty years ago, we never heard of 'juvenile diabetes' in an alarming proportion as we hear today.
Did the Alzheimer,(senile dementia) patients have a mild
or partly Fox G1 syndrome in their childhood?
1
My father, a Navy pilot during WWII, was going through his final months of life before he passed away from complications of Alzheimers. I sat next to him as my mother sat across the living room looking at his high school annual with him. This was one of those little exercises that would turn the "lights" back on in his eyes, even if for only a minute or two.
As the 'light' this time came on I asked him what it was like in there and he said, "it's horrible" as the 'light' went back out again.
27
Thank you Philip
15
But why are you taking anxiety medication, with all the challenges you already face. Aren't you aware that there's a benzodiazepine crisis?
That so many people who've been on them for too long are struggling for years to come off them, besieged with disabling side effects.
That their use may raise the risk of Alzeheimer's disease. https://www.health.harvard.edu/blog/benzodiazepine-use-may-raise-risk-alzheimers-disease-201409107397
This is so very sad.
4
@Christine
Taking anti-anxiety medication is a treatment for one of the effects of Alzheimer's. I am sure this writer didn't get Alzheimer's from the medication.
Restricting needed medications for Alzheimer's or other terminal diseases just adds to the challenges.
Trust me. Addiction is the least of our concerns.
51
Thanks for sharing this beautifully written essay. If you write like this impaired, you must have been even more impressive before :)
21
Alzheimer's is a beyond devastating disease. The cause of a disease needs to be known before a cure/treatment can be found. The drugs which have been developed only treat the symptoms. My mother in law has late onset Alzheimer's and my husband Dennis N Crouse who is a scientist began researching ways to help her. He was successful. The progression of the disease has stopped and her cognition has improved. She is now 92 years old. This journey started 6 years ago. What my husband learned shocked him as well as gave him hope and he was compelled to write two evidence based book with over hundreds of scientific references. One book is on Alzheimer's and the other is on Silica water. Research has reached a tipping point and aluminum is causal factor of Alzheimer's and the good news is silica rich mineral water is effective a removing aluminum from our bodies and brains. Take a look at Dr. Chris Exley's research. He has found large amounts of aluminum in the brains of people with Alzheimer's. He is at Keele University. This information is not mainstream and it needs to be. I am passionate about getting this information to as many people as I can so we can put an end to Alzheimer's and all the suffering.
9
I'm surprised that you're taking anxiety meds (benzodiazepines) when there have been studies linking their use to an increased risk of being diagnosed with Alzheimer's. There's also talk of benzos becoming the next drug crisis. They can be dangerous when taken long-term.
3
I identify with the author on many levels. My grandmother lived to be 100 years old and the last 20 she did not know her name. My dad is 88 and rarely knows his. I am 67, have been told I have moderate cognitive impairment. As someone else posted, they really don't know until autopsy time. My PCP has referred me to some sort of clinic to evaluate my condition. She gave me a test that she said she could not send to them as it did not convey a problem. This is because I had an I.Q. of 160, in my younger days, and even with problems now, am still sharper than most. But, I do have problems with words. My husband really did not get on board until lately. I do surveys online, to pick up free gift cards. I do 30-40 per day. Feel it is a good mind exercise. In each one I have to put in his and my birth date, month, day year. 10/13/2018, I met him at the door with a cake, candles, sang Happy Birthday, and gave him his gift, ordered 2 months before, that date circled on my calendar. He was speechless,his birthday is 01/13. He had appointment with our PCP, that week and shared it with her she had me come in asap. Now, at least, he helps me, when I can't find the word to finish my sentence, where as before, he just made fun of me. I had a high power job with many responsibilities before I retired. Company told me they had to hire 2 people to do my job, that I managed alone.Very frustrating. If I have to end up in a nursing home,don't want visitors,would rather not be seen like that.
34
@Carla Thanks so much for sharing your experience. My parents both had Alzheimers prior to their deaths and it was a privilege to assist them both to their final breaths.
One memory related to Alzheimer's that has strongly stayed with me is of my father, a retired, previously cocky, 'alpha male' flight instructor during WWII who called to me while in the bathroom. He couldn't remember how to pull up his pants. "I got this, no problem" I told him, touched at his vulnerability.
The other memory is of my mother, whose pre-Alzheimer's life revolved around her German shepherd dog, whom she overfed carefully cut up hot dogs, hamburgers and cheese.
One evening I came home to her sitting outside in the dark, chilled and forlorn, with a stainless steel bowl full of this food for Pharaoh, waiting for her long-dead dog to come and eat. She had managed to get her walker down two steps and out the door by herself."Where is he?" She asked me. When I explained that the dog wasn't here any more she said accusingly:" You killed him!" At 61, I too am having cognitive challenges including 'word search' problem where I have to 'hunt' for common words that sometimes come and sometimes don't. My verbal reasoning was 99th percentile on a cognitive test a couple years ago. This is sobering.
There are different health issue mimicking Alzheime's so be sure to rule out all possible health issues.
22
As you put your plan together make sure your husband puts together a support plan for himself. Alzheimers and other dementias affect caregivers in ways that are different from someone caring for a loved one with a physical disease. In our case my dad ceased to recognize my mother, the woman he had been married to for almost 60 years, but would recognize me when I came to visit them about every six weeks. She felt like a widow well before he died of complications and the dad I knew disappeared to be replaced by someone that we committed to cherish til the end.
23
A great soul you areThank you for sharing.I am 70++++thus time will tell.Being outspoken and direct,in the event of beeing an alzheimer patient,I would tell about itThus,not having to explain to anyone ,a lapse in time.
3
Mr. Gutis, have you looked into the work of Dale Brederson or Amy Berger? Dale Brederson has a protocol for Alzheimer's that he has apparently gotten good results for reversing it with early stages. You can find his talks on Youtube.
2
Consider a viral etiology (Herpes, different types), and seek antiviral drugs such as Acyclovir, etc (Robert Moir). Make sure your Vit D is high enough. Follow the organic mediterran diet with berries, and exercise about 2 hours every day. Ball room dancing is best and it connects body and mind. Also do anything to make effect deep relaxation, such as meditation. Make sure to get 6 to 8 hours of sleep. Detox as much as possible --sweat lodge or sauna three times a day for 20 mins. Get your hair analysed for heavy metals and do the heavy metal detox as suggested by Andrew Cutler. Deepen your spiritual, cultural and social connections. Never lose your sense of humor. Keep your stress hormones low, and keep your sex hormones in the range of a 30 year old--DHEAS, estrogens, progestones, and testosterone... Also look into using biopeptides for liver, brain, adrenals, thyroid, testes, etc.
5
@Piujuq
None of these things, except for sleep, has any known benefit, yet you toss them out like candy at a parade.
I find the collection of things you mention at least not hurtful, except the concept of 'detox' which has no basis, and the hopes of finding something in hair analysis is cruel in trying to give someone hope and having them spend their dollars on studies that are not only unlikely to provide help, but extend false hope.
Hope is important and this eloquent essay is one of the most helpful for those who's disease hasn't progressed so far that the one with the condition, when reading it, doesn't find a little foothold to hang on to and avoid suicide. The diagnosis of Huntington's is often associated with increase in suicidal thoughts and in some instances, completion.
But for the time being, this is a progressive disease, one of which we have ineffective treatments and the problem with the one affected knowing full well what is coming.
31
Thank you for sharing your journey, and for giving hope. My mother had Alzheimer's disease too. I shared her journey which demonstrated that hope can remain alive even in the darkest times. Specifically, I wrote a book containing her encouraging quotes about God, family, and life, with 100% of net proceeds going to fight this illness (donated to Alzheimer's Association). For those with interest, you can learn more here: http://twilight-meditations.com
6
G-d bless you and your husband and family as you go forward. Your heart and courage are admirable. Prayers that the drug will work for you and that an end to this disease can come in our lifetime.
10
Thank you. Thank you so much for writing this.
14
Thank you for this column. Sending blessings to you.
11
So sorry for what you're going through. I thought I'd pass on that I've read quite a lot about alternative therapies for dementia and Alzheimer's. A diet very low in carbs and high in healthy fats is showing some real promise and of course lots of exercise. I wish you well.
5
Thank you very much for your article. It has inflluenced me to make a Dr. appointment tomorrow. I am 66 and losing my words, especially in social situations and under stress. This creates more stress. Thank you for your bravery, god bless you.
13
Philip, may I ask how the diagnosis was made?
This information would be a very great help to me.
7
Hi. Diagnosis was made through the drug trial. Cognitive and memory tests, two MRIs and a PET scan before I received diagnosis of early onset Alzheimer’s. In my humble opinion, drug trials are a great way to find out if something is wrong. Unfortunately the regular medical system doesn’t always handle diagnosis of Alzheimer’s very well.
16
Thank you for your sincerity and brilliant communication. You sound very loving, sensitive and kind. Those are beautiful attributes.
21
I'd appreciate it very much if NYT could post a comment explaining how Philip's formal diagnosis was actually made - what test(s) were employed? This information would be a huge help.
For those of us who have no spouse or children to look out for our interests, early diagnosis is crucial.
19
Is it Really Alzheimer's, by Dr. M.A.Spooner
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2380220/
1
@Jeremy Thanks for this, but the article you linked to is from 1994.
I still want the NYT to post a comment adding some very important information missing from this article: How was Philip's formal diagnosis actually made?
Please step up, NYT! Us single childless people are/will be in very deep trouble with this disease, and we have to look out for ourselves. That includes informing ourselves as early as possible whether we're developing this affliction.
11
There are few things which strike a writer at the core of her being like losing her words. While dementia is not the only cause, aphasia strikes a writer particularly hard, Not only do we lose our ability to communicate our thoughts and feelings, which we excelled above others at doing, but we lose our profession, which in the modern world, often defines who we are and how we see ourselves. In a very real way, we lose ourselves one word at a time, every time we cannot retrieve a word from the twisted pathways of our brains. It is a constant hail of arrows and it never stops. We don't even have words to express our pain!
I know exactly how Philip Gutis feels. Tears are a very natural response to grief. It's okay to cry when you lose yourself a word at a time.
14
I have just turned 66, and am lucky enough not to have any medical problems...yet. I am conscious that every day is a gift. We all need to live with that in mind.
11
Just... sending love. ♥
23
God bless you and thank you for efforts.
6
Thank you for sharing. I worry about saying the wrong thing with no filter.
8
X father suffered from Alzheimer’s and passed away in 2010 .He was officially diagnosed in 2006 but looking back the symptoms where there from 2000 .I am pretty sure that I am starting to show the same symptoms I will be 53 next birthday . His death was terrible and will live with me forever his memory to me soured by this disease,The loss of memory,personality and involuntary muscles fills me with fear .If I was to pick the right moment to to “checkout “I would say the loss of coordination with a knife and fork might be a good point, although I won’t be able to do anything about it at that stage
At the moment I am trying to force myself to learn a language I am planting oak trees wherever I can and enjoying every day that I am lucky to be on this planet.
Bonne chance Phillip peut-être nous rencontrerons- de l'autre côté.
23
Ciaran.....I am very, very, sorry for you and my heart goes out to you and the fear I imagine you must be experiencing. Oh how I hope you do not have this disease, and that you mercifully are spared. I am sending kind thoughts to you in Kildare, Ireland.
14
A promising diagnostic test is under development:
Pain Therapeutics, Inc. (Nasdaq:PTIE), a biopharmaceutical company, announced today it has been awarded an approximately $1.8 million research grant from the National Institutes of Health (NIH). This grant will support innovative technology developed by the Company to diagnose Alzheimer's disease with a simple blood test.
"Finding a way to diagnose disease at an early-stage is vitally important," said Remi Barbier, President & CEO of Pain Therapeutics. "A blood test may help detect Alzheimer's disease before symptoms occur, or rule out other possible causes of memory problems, or might be used as a biomarker to measure the efficacy of drug candidates during clinical trials."
The NIH's National Institute on Aging awarded this research grant to Pain Therapeutics following a competitive, in-depth evaluation of its technology for scientific and technical merit.
The research grant is a technical-milestone based award that will enable Pain Therapeutics to work collaboratively with leaders in the field to develop a blood-based diagnostic for Alzheimer's. The diagnostic technology is related to PTI-125, Pain Therapeutics' clinical-stage drug candidate for Alzheimer's disease, whose underlying science has been published in Journal of Neuroscience, Neurobiology of Aging, Journal of Biological Chemistry, PLOS-One and other peer-reviewed scientific journals.
5
As a licensed nutritionist, I wonder if you have looked at the link between sugar and Alzheimer's? My wonderful mother died from this disease; much later I wondered if her daily Pepsi and Snickers bar, plus lots of very starchy foods, contributed. You might look at https://www.theatlantic.com/health/archive/2018/01/the-startling-link-between-sugar-and-alzheimers/551528/ and also Gary Taubes' book about sugar. My recollection of reading retrospective studies, is that the highest link to Alzheimer's and also heart disease is average blood glucose.
5
@Mary Baechler When sugar is proved as a catalyst for the cognitive decline and Alzheimer's (senile dementia) is known as Type 3-Diabetes, there is no reluctance to say that sugar is one of the 'Cognitive Decline Agents'.
3
@Mary Baechler Pepsi and Snickers? Laughable!
2
I wish you the courage needed to face this illness, the love of all who surround you, and the wisdom to know that your life is still valuable even when your memory is failing. Having witnessed the decline of a loved one due to this terrible disease, I have seen that the core of the person remains. Those closest to you will always love and care for you, and you will still bring joy to their lives. There will still be times of clarity, peace, and gratitude. The illness is inconsistent. It reminds us of what it means to be human. Live in love.
11
Thanks you for this thoughtful and honest piece. Blessings to you as you fight this disease.
6
This article is totally irresponsible in so many ways. I've spent the last year taking over the family finances which is difficult. To add to the difficulty, my husband didn't want to give up his role, the role President Reagan took to his office after his presidency. Which is, to sit in his office and pretend to get things done. Alzheimers has become an industry, and with that, innumerable generalizations as to "what it's like" from a simple point of view. The complexity of this illness should discourage such simple-minded views; I mean, what is it really like?
First, the relatives go into denial. Secondly, the wife (myself) sees herself in a new light. Putting up a dog gate, going to How To sites to put together a grill, and now, having a neighbor help me with a pressure washer. I'm suddenly androgynous. But yet, my husband can talk and laugh about our old jokes. He can make dinner. His functionality is taken very seriously by me. He must be functional to retain his mind. He must meditate in order to keep up a life outside cognition.
This is where I stand amazed at "Alzheimer's feedback". Cognition is everything. Knowledge of this and that is what our lives rely on. I purport that this isn't true, there is surely another dimension where dementia can exist. I'm disgusted by the curtailing of that dimension, by the fact that every moment is a moment of social interaction success. Oh, sorry, I can't recall your name. I'm a social failure, etc.
5
I am in tears. One should not know that cognition is seeping away. I sincerely hope you can fight this beast and win. May I also humbly suggest that you research the herb Brahmi, Bacopa monieri. Some small studies have shown cognitive improvement. It grows well outside in a pot for me in California and I bought the plant from Whole Foods, (origin, Sweetwater Farms) a couple of years ago. Since it is a Himalayan plant, it might be happier anywhere colder. If the world was closer, I might have brewed the leaves from my garden for you daily. Good wishes your way.
2
Prof. Dale Bredesen of UCLA lists 3 major groups causes (out of 36 independent causes) of Alzheimer's; i.e. (1) chronic inflammation, (2) trophic factors, and (3) toxins/toxicants.
Chronic inflammation comes, in most of the cases, from so-called autoimmune diseases (more than 80 diseases) that involve (1) leaky gut, (2) gene expression, and (3) foreign factors such as gluten, chemicals, toxins etc. according to Dr. Alessio Fasano of Harvard. https://en.wikipedia.org/wiki/Alessio_Fasano
Easy to read book is "The autoimmune fix" by Tom O'Bryan.
Trophic factors, the nutrients, hormones and other factors vital for the survival of brain cells, are also difficult ones as you may need hormone rebalancing. I am okay as far as my test results show. The important research on micronutrients I suggest is
"Low micronutrient intake may accelerate the degenerative diseases of aging through allocation of scarce micronutrients by triage" https://www.pnas.org/content/103/47/17589
In the toxins/ toxicants area, the most difficult ones to remove, prof. Bredesen relies on experts such as Chris Shade (mercury) and many others. I have taken a few initial tests prepared by such experts. So far, I have low level of toxins/toxicants.
Philip, thank you for your article, which was clearly written from your heart. I thought I would share that the State of Minnesota recently approved the use of medical cannabis for Alzheimer's. Take care and know your article was appreciated.
13
My sympathies, and I don't wish to seem unfeeling but look at it this way. Do you think the eye of a hurricane ever worries, or even perceives, the resultant carnage going on all around it? No, it goes until it is gone. unthinking. Uncaring. It simply exists as a force.
You may worry now, as is fitting. And you can make as many arrangements as you can, which is the proper thing to do. But this hurricane-like existence is the person enduring Alzheimer's final end stage. As the center becomes more opaque, more unfocused, it does not know of the carnage going on around it. It can't. You become a spiritual hurricane to those around you.
In an odd sort of way this may be the diseases saving grace, for you. You become an spiritless force in the lives of others. This may seem horrifying to you now; but by then you will not care. For your loved ones, though, it will be an entirely different matter. Enduring carnage is never an easy thing.
Again, my sympathies.
John~
American Net'Zen
6
Dear Philip, I am the caregiver of my mother, and I can say that you don't have to lose hope if you have a beloved one that will take care of you. There will still be many moments of tenderness and love happiness, and the ones that will take care of you will learn to love you in a way that who don't faces alzheimer doesn't know and cannot know. Despite the growing physical and mental limitations, do not take away from your loved ones the opportunity to love you, and from you to love them, because I assure you, you will still be able to love. Sincerely, Riccardo Tedde
24
Dear Philip,
We're beginning down the same path.
Thank you for having the courage to light the way.
--
Things Trump Did While You Weren’t Looking https://wp.me/p2KJ3H-2ZW
15
@Rima Regas
Dear Rima Regas,
I may not be fully clear on what you're saying in this post, because I can read it several ways. But please know that I've read many of your comments this past year and benefited from them. Thank you for sharing, educating and connecting. Peace to you.
Susan
8
Your piece especially resonated with me as I am tracking pretty much as you including having finished the trial portion of the Biogen drug and on the extension for nearly a year. I have held out high hopes that it was having a positive effect in at least slowing it’s progress and perhaps it has as I am quite good in the here and now but with significant but some what selective l.t. memory loss.
Your comments are a reminder to be honest about the little slippages you see over you shoulder, stay aware, and be thankful for what you have. But accept the likely path ahead (feeling so positive about the drug’s apparent effect, I asked my nueroligist the odds of it progressing to the unpleasant stage...75%.)
So again thanks for the kind wake up call.
John Foster
10
Philip, thank you for your article. It was clearly written from your heart. I admire your honesty and courage. I thought it might be interesting for your readers to know that the State of Minnesota has now approved medical cannabis for the treatment of Alzheimer's.
8
Zhuangzi's philosophy offers a comfortable concept for how I might one day accept Alzheimer's.
"Now I do not know whether I was then a man dreaming I was a butterfly, or whether I am now a butterfly, dreaming I am a man."
Human life is a fleeting moment compared to the scale of time of the universe. Enjoy the day. Be Present. Attachment brings needless suffering and all things are impermanent.
Namaste.
29
My father died in August of mixed dementia- Alzheimer’s and Vascular. He was 94. I saw the signs much earlier than diagnosis- when my mother died in 2010, I had just returned home from a visit and then took a red eye back. My father and I kept vigil for 3 days before she passed. I thought he was in shock and I took care of all the arrangements- casket, obit,funeral, Shiva, etc. Several years later, my father recalled that I had not come back after I left for California. I asked him who handled all the arrangements and he looked blank. Maybe it was some shock but not all. I recall other signs as early as 2005.
When he went, he went very fast- from confusion to paranoia, to “sleep”, and then gone. He never lost the ability to communicate, not like my mother-in-law. I guess that was a blessing. However even if he never allowed himself to face the diagnosis for him it was somewhat an “ignorance is bliss”- he had us to take care of him and we were excellent advocates. I cherish the last 8 months of his life when we brought him out here from the east because we couldn’t manage his situation with no family local and from 2500 miles away.
My husband and I talked over this year intensively about whether we would want to get to various stages that we saw my father go through. We have talked about what point in the progression towards loss of self we would want to take that final control of our lives- whether in CA, OR or Sweden or NL-and it gives us comfort.
13
@Leanna, unfortunately, at least in the US, you can't legally end your life if you have Alzheimer's, even if you provide for it ahead of time. You must be if sound mind at the time you choose to die. I think that is terrible.
17
Thank you Philip for sharing your journey. Having gone through this disease with both my grandfather and father, I know that there's a distinct possibility that Alzheimer's will come for me as well. So I'm living my life one day at a time with joy and love and if that day does come, I'm going to keep fighting just like you are. I send you my love and my hugs and yes, my prayers. xoxoxo
28
Thank you for sharing this personal and insightful story. Blessings as you continue your journey.
16
Thank you, Philip Gutis, for a courageous essay. I wonder if you are familiar with the book "The End of Alzheimer's" by Dale Bredeson. The research he began in apparently being continued at the Cleveland Clinic. Let's hope the very encouraging results Bredeson reports hold up under further study.
13
Phillip thank you for your bravery in helping others. I noticed that there is no mention of APOE4 or other known possible contributors. We sincerely hope the clinical trial leads to positive results. I am so happy that you have Tim in your life for this journey. The idea of having Alzheimer's reminds me of the child's movie "The Neverending Story" released 1984. Clearly the adult version of the story is much more difficult.
11
It is a terrible disease and one of the worst aspects of it is that eventually one wont remember the person one was.
12
My mother passed away a year ago. She over years gradually lost her speech by different levels. She early on refused speech therapy, did not want to go to doctors visits. In her final years ended in a nursing home. It tore our family apart to the point of not speaking for over 2 years. The difference of opinion still lingers and makes it hard to be as close as we were. I myself lose words and wonder my future. I wonder if I was patient enough, or if I was there enough. Did my actions help or hurt?
22
Thank you so very much for sharing and giving a voice to what my mom is unable now to express. We miss what she was and love her dearly for who she is. I hope your journey is full of love and support and smiles.
39
Anyone who has the mental wherewithal to write this kind of essay should be focused on how they going to live their life, and not focused on how they are going to end it. According to WebMD, "Doctors can’t definitely diagnose Alzheimer's disease until after death, when they can closely examine the brain under a microscope." While many people will develop Alzheimer's, of course, some who think they have it, may just be getting a bit forgetful in old age, or may slowly be developing another form of dementia.
It almost seems as if the knowing, or the false-knowing may be worse than the reality of whatever may slowly be happening to the brain. As the essay alludes, some medications that are supposed to help may not help very much, and may have their own side effects.
As for "Guys and Dolls," I have not seen it, but I have it on good authority that some musicals are just not very memorable.
24
"and not focused on how they are going to end it."
But the person writing the essay never does that.
11
@Dan Frazier
We cannot help with clinical trials unless we are open with our doctors and agree to participate. At the same time, I agree with you that knowing is scary to say the least.
3
"Should"?? You dare to tell someone being this honest and brave what he "should" do or think when you know nothing of how this feels? What a burden your instructions must be to those around you.
11
I wept, too, reading this. Peace be with you and your husband. Thank you so much for sharing your experience.
47
I applaud you. Tim will always be there for you and that is a beautiful thing.
30
Both my parents died after dealing with some form of dementia. So I'm likely to go that route as well. A cure seems highly unlikely at this point. And I don't want what wealth I have to be spent keeping me alive when it would be so much better used by younger generations in my family raising kids. Days/years spent in a care facility maintaining some semblance of "life" involving pureed foods and adult diapers have no appeal for me. Better to leave this life early and spare family the emotional and financial burden than prolong the suffering for all concerned.
Good luck finding a cure though.
120
@Dennis I feel the exact same way, were I to get Alz or dementia. If I have no quality of life and am a mere shell of a human being, nor are any of my family or friends able to have any meaningful relationship/interaction with me (due to my condition), it seems a huge waste of money and energy to keep me alive. I'd much rather all my savings go to charity.
There was only one instance where I was knowingly in the presence of someone with severe Alzheimer's, and this was a woman I had no relationship to. It was my first time being in their presence. I was with the woman's husband, joining him for a visit with his wife, at the facility where she was housed. We 'visited' with her for 15 minutes tops...while her husband made small talk. I tried to chime-in now and then, saying how I was in town for a visit....how I hadn't been in the town for a long time...how pretty a town it was....etc. Basically I was just trying to make polite conversation. But after just a few minutes of observing this meaningless 'dance' between her and her husband, I had to turn my head as the tears rolled down my face. This, I thought, is her existence? This is what it is like, 24/7/365? And for how many years? We allow those on life support, etc. to die with dignity. I fail to see much difference for those with severe Alzheimer's or dementia.
55
@Lisa
What is important at that stage is just being there and continuing to communicate. It doesn´t have to make sense. Agreeing and continuing to love is what is needed then.
13
@Lisa: She probably benefited from seeing his face & hearing the sound of his voice. The content didn't matter any more than it often does between mentally competent adults.
13
Please also consider taking pregenenolone and a super high quality fish oil. Both have helped veterans with ptsd and others suffering effects from multiple concussions. My own journey led me to pregnenolone - it has saved me.
7
So touching. Thank you for your honesty and courage. Please, please, please keep fighting... and keep writing about it as long as you can.
This could be anyone of us tomorrow, Philip.
We must all help "make this disease go away" if we all just contribute, even a small amount,
32
Your lovely column resonates with so many of us who have lost family members to Alzheimer’s. It strikes a deeper chord with those who have it, or fear we may.
Thank you.
46
In my observation Alzheimer's or senile dementia could be overcome by the combination of physical & cognitive exercise.
Apart from regular physical exercise suitable to the three different phases of one's life, 0- 60,61-80 and 80 to till last breath, one has to practice to recollect the chronology of events of the first phase in second phase and the first & second phases in the third phase. The second phase has largely to be occupied by interaction by discussion,debate, reading ,writing and immersing in research on the favorite field. The 105year old granny from south India didn't forget her recipe and the art of cooking. I could regularly interact the technical details with my nonagenarian Guru in NY till his demise three months ago. Adopting a life style of physically active and cognitively equipoise analysis keep the Alzheimer at bay to a great extent. The Hydrogen bonding network in memory cell is still an unexplored area.
12
What is the life span of our memory cells?. Indeed, it is designed and gradually programmed to cope with the coordinated input given by the visual perception and its acceptance by the brain to process in CPU (central processing unit) in order to get the desired output.
Let me draw a live example of a person affected with Alzheimer's (senile dementia) who started displaying 'excrete' by taking in hand. Here I could infer the input to clean the excrete is perfect but the failure to use a wiper(tissue)/water for ablution is missing and hence the imperfect or detour in the output.
Taking reference from Genesis 6:3 of the Bible,"his days will be a 120years"and " Lord Krishna,Arjuna and Bhishma (Commander-in-chief) were 86,84 and 116years old at the time of the Kurukshetra war" page 27 of "The teachings of Bhagavan Sri Sathya Sai Baba, I could expect the brain cells have been designed to cope up with the life span of 120years.
Will the super Artificial Intelligence & Robotics lead the medical science to measure the life span and its efficacy of the memory cells and be able to reprogram either to stretch or replace for an Alzheimer patient to discreet the wright and wrong in a discrete way?. Spirituality and Science -the two pronged attempt but in tandem might be the way to think of.
The real nemesis to a care giver is, if a blind develops Alzheimer's.
@N.R.JOTHI NARAYANAN and everyone else on here suggesting "magic bullets". It just isn't this simple. My father was an award winning research scientist who ended up with Alzheimers, Lewy-Body dementia, and a protein prion brain disease, possibly Creutzfeldt-Jakob, all which we know from his brain autopsy. He obviously wasn't short of cognitive exercise, ate a healthy diet his whole life, and never weighed more than he did when he got married 60 years earlier. There are multiple factors at play as there are with cancer. Offering simple solutions creates false hope. Funding for rigorous scientific research is what is needed.
14
@Frances Smith. Agree with you.There are multiple factors at play for Alzheimer's and cancer. We had virtually identical experience. I could witness a lady doctor who is proficient in O&G,detected breast cancer for few of her patients on mammography and needle biopsy died of breast carcinoma of stage4. Family history,(inherited genes), environment,food habits and many unknown factors still to be unraveled. I could find a great hope in case of Alzheimer's in the years to come. I expect every citizen is candid like us to inform their children about the hereditary-health history of their parent and grand parents. None is born without deficiency and no pair- organs of our body are equally healthy.
Madam Curie was also a victim of radiation.
As you said,funding for rigorous scientific research is imperative and I am confident of a breakthrough in Alzhemir's by replacing or reorienting their affected memory cells to carry out the minimum essential daily activities in the age of AI & Robotics. Thanks.
Thank you for sharing this wonderful essay, Mr. Gutis.
14
You are a wonderful writer, Mr Gutis - please keep writing when you can. Sometimes we wonder what impact we'll make on the world after we're gone - your words resonate, telling the story of millions.
119
PTI-125 may be that medical miracle.
Pain Therapeutics, Inc. (Nasdaq: PTIE), a biopharmaceutical company, announced today the initiation of a Phase II study to evaluate PTI-125 as a potential first line treatment in patients with Alzheimer’s disease. This clinical study is supported by a research grant award from the National Institute on Aging (NIA), the primary Federal agency supporting new research in Alzheimer’s disease.
“There is a profound and timely need to develop new drugs for Alzheimer’s,” said Remi Barbier, President & CEO. “We are excited about the clinical potential of PTI-125, as this drug candidate represents a promising new approach for the treatment and prevention of Alzheimer’s.”
13
Phase 2 is a long way from approval much less widespread testing. Alzheimer's has been one of the toughest diseases where little to no progress has been made. It's heartbreaking, as reading this article shows.
16
@pookie Potential accelerated approval, and a rapid diagnostic test, were described in a recent update:
https://drive.google.com/open?id=16KFDiMdzUvIXDC0r7omWbkMv8W9fZ4wP
3
@pookie
This drug candidate will likely receive accelerated approval status, as described in a recent update:
https://drive.google.com/open?id=16KFDiMdzUvIXDC0r7omWbkMv8W9fZ4wP
2
Thanks for bravely sharing your experience with such a clear voice. I, too, will be hoping for medical advances in this area. Wishing you peace and the best possible health.
70
I can empathize with the writer. A few years ago I was diagnosed with early onset of Alzheimer's. I took all the tests, saw all the neurologists and the diagnosis was always the same. I was scared, I was in my late 50's and looking at the end of my life; eventually. I took the medications as prescribed, and began doing all the things one had to do in our society to close up all the loose ends. After 2 years I suddenly improved, strange. It turned out I had been misdiagnosed. I was actually suffering hypoxia from a severe asthma exacerbation. I have experienced some brain shrinkage beyond what is normal for someone my age, I am left with deficits in memory, and the ability to do simple math. I had to cease working at the bedside as it was no longer safe for the patients I cared for. I could no longer handle medications safely. My prayers go out to the writer and all who suffer this horrible disease. I can only hope that soon a breakthrough will come for medication, find the cause, and be able to treat the diease.
142
dear Philip, as a PhD, not MD, two things that have helped my brain work better. One is to stay up on vitamins and minerals. B12 is associated with brain function for example. magnesium and Epsom salt baths.
The other is intermittent feeding. 6 hours food and 18 hours fasting. plus no added sugar and few simple carbs was helpful to me. better brain function, better hearing. I break the fast with some chicken broth. followed by unsweetened cocoa in milk. no sugar, fruit or white flour in the morning because it would send me right to sleep. lots of veggies, eggs, milk and yogurt, oil and butter.
those two plus exercise might help. good luck.
26
@Susan
I see Bredesen mentioned in these comments, and while I had never heard of him before, my suggestions are similar to his. I also agree on sleep - it is essential. I have 2200K light bulbs and I cover my TV to filter out blue light starting in the evening. that plus f.lux to remove blue from computers at night has improved my sleep a lot.
14
I am a retired hospice RN now providing Healthcare Advance Planning. I recommend that the author and anyone else with early stage dementia of any type, or anyone aging without dementia, take a look at a fairly new Advance Directive for Dementia. I will share a link at the end of my comments. This document allows one to decide what level of medical care he/she wants as the disease progresses. It is possible to make choices to die sooner rather than later by not agreeing to various medical interventions and instead opting for comfort care.
Here is the link http://www.tinyurl.com/yabrsmqr
I hope some of your readers will find this helpful and reassuring that even with dementia we still have choices about how we die.
107
@Caroline Stevens I recently had my estate attorney draft a living will using the Advanced Directive for Dementia. After I reach Level II, I am to receive no further curative interventions, no medications at all except those for pain, sleep, or anxiety/agitation. Especially no antibiotics. No intake except what I accept orally and voluntarily. I'm 73, I've noticed no symptoms of dementia, and have no family history of it. But I worked in health care and have seen this too often-people living in nursing homes for years, bedridden, with no memories, unable to communicate at all, incontinent, etc. but still kept alive with medications for chronic diseases and antibiotics. I also have a health care POA ( my sister, an RN) who is well aware of my wishes in this regard.
13
Unfortunately, at present advance directives (or living wills) fail to address the unique issues that Alzheimer's and other dementias present. This is something that we as individuals, as well as a society, need to address.
At present, Medicare does not do so in its recommendations for preventive care. What is the point of insisting upon mammograms for women with dementia? Or PSA testing for men? Both have the potential to lead to more invasive investigations which in the end benefit no one, and in the case of women, subject them to procedures which mystify them or worse.
37
I sorta agree but it isnt as simple as you suggest. Many will live well into their 80 or longer. So does that mean that someone with dementia automatically doesnt deserve a mammogram? You mean well but you propose is ethically really complicated
3
This article doesn't describe the effect Alzheimer's has on the immediate family. Most people think it's horrible. It's not: it's an opportunity to increase your love for the family member and to grow in your own compassion. My brother and I arranged my Mom's fulltime caretaking in her home for the last four years of her life (she died in May, at age 96). He visited very day, and I came every month for a few days (I live on the other coast). It was a joy and a privilege to care for Mom. I consider it my main reason for being alive for those years (and I have a family, fulltime job, etc.). She gave and received love until her last day. Whole parts of her - her humor, and her cleverness, for example - remained intact until the end. Sure, she often forgot my name, or thought I was her mother, but she always called me "Dear" or "Honey". She never called anyone else that.
91
@Bonnie Dear Bonnie, Each patient with Alzheimer's is also an individual, which means that some people will react like your mother, but in others the disease will have much more devastating or milder effects. I had to struggle with 4 different cases in my life (my grandmother, mother, first husband who died of early-onset dementia and his mother) and each one was different. You can't base an opinion on just one case.
137
I am happy that you had that positive experience but Alzheimer and dementia can progress into high paranoia or violent actions. It is quite different from person to person. caregivers need to be ready for all possibilities.
39
@Bonnie
This sounds terrific, but not everyone's experience.
There's a lot of 'horrible' out there. Terrible affliction.
17
For a long time people have warned about our propensity to keep adding more and more new chemicals into our homes and life styles. Presently there are thousands.
One of these is a class of chemicals called surfactants which are used in cleaning products. They are made to dissolve both water soluble materials as well-as oil and grease.
It has been hypnotized that Alzheimer's is not caused by faults in the brain but by faults in the blood brain barrier whose function is to keep water soluble chemicals out of the brain while allowing in oil soluble materials.
The interesting thing is that the same surfactants we put in our cleaning supplies and are used in our homes are used to coat chemicals to allow them to pass through this blood brain barrier into the brain.
Thus we are left with the possibility that it these surfactants we use with abandon could allow toxic materials into the brain and are a possible cause of Alzheimers. This is further supported by the fact that occurnces of Alzheimer's disease was extremely low before 1980 when it began a huge increase.
23
@Allan it’s an interesting idea, but wouldn’t we see it more in people who clean for a living?
15
@Allan
Now I have an excuse for not cleaning; thank you.
36
@S to the B, that’s a good point, but perhaps we all have different levels of sensitivity to these and other toxins, and what we’re sensitive to varies person by person.
5
If one is fortunate enough to have the means to pay for care as the ravages of Alzheimer’s slowly kills you, and if you have family, a partner or other loved ones to support you the horrors of the long goodbye are containable.
But if you have neither the money, nor a loving support network it will be the very gates of Hell opening. As one in that circumstance, when the inflection point comes and you hear the sound of inevitability, you really only have the option of suicide.
This is an important reason that society and government must make assisted suicide an accessible course of action.
284
It is abhorrent that in one of the wealthiest countries in the world there isn’t adequate funding for health and social care for those with Alzheimer’s who cannot afford to pay for it themselves.
The suggestion that a solution for this is to legalise euthanasia rather misses the point. Perhaps we should - having witnessed my grandfather’s excruciating but, in the grand scheme, relatively swift decline and death from pneumonia after years with Alzheimer’s I think we should. But the solution to an absence of medical care and social networks is not simply to allow people to shuffle off this mortal coil, which would be as abhorrent as the absence of adequate publicly-funded care.
24
A very simple option too is to be sure that one has a clear Do Not Resuscitate order. One can also opt for comfort care, declining antibiotics or other curative treatments, allowing natural death when the time comes. Declining tube feeding and IV fluids/nutrition is another very reasonable choice for the elderly and those with terminal conditions. Be sure your family and your doctors know exactly what your wishes are. Designate a health care power-of-attorney who knows what you want. Explore hospice options. With appropriate planning and care, hopefully suicide would not be a first choice.
9
@Sherrod Shiveley
A DNR and other health directives are oriented toward end of physical life. Mr. Gutis has early-onset Alzheimer's. He is not even 60 years old. This means he could live for decades more as I've seen with early-onset patients.
10
thank you
20
I dont believe any state permits assisted suicide for Alzheimer’s. The author carefully does not specify what they will do when the time comes.
11
@Cecelia, I believe the lack of answer to that question is understandable given the fact you cite.
3
Have you read “The End of Alzheimer’s: The First Program to Prevent and Reverse Cognitive Decline” (2017) by UCLA neuroscientist, Dale Bredesen? There is room for hope.
22
@Florence Swanstrom I mentioned Dr. Bredesen in my comment as well. I think his book is invaluable and everyone would benefit from reading it. Thank you for mentioning his book.
14
Early-onset Alzheimer's is devastating. Any form of Alzheimer's is awful, but to be affected in your 50's (usually) seems inordinately 'unfair'.
I know there isn't any 'fair' but I've been afflicted with an Immune Disorder that is slowly robbing me of many parts of my life. I'm consoled by the fact that this deterioration didn't actively start until I was in my late 60's. I had already had a very good 'run'.
Now of course, when I find that a word is just hiding from me (I know it's there, but where?) the thought of dementia crosses my mind. With my sort of Immune Disorder, fogginess is common, but my brain can be affected, tho' this is fairly rare.
A very important point that Mr. Gutis makes is that suicide must be an option for those of us with progressing conditions!
In "Still Alice", a moving account (fiction) of early-onset Alzheimer's, Alice arranges for her suicide and leaves herself messages about it. However, the self that needs those messages has forgotten that they exist. And, in this fictional story, Alice is NOT unhappy in her memory loss. She has reverted to happy childlike behavior.
I doubt if this is actually often the case, however. Perhaps the message is that what we fear will come, may not frighten us when it is upon us. What is does to those we love is another story entirely. And when care is available, the physical and financial cost is crushing
54
@elained Some people find their memory improves when they go off statins.
1
@elained, the experience of dementia with Lewy bodies of my wife's mother, with delusions and hallucinations--I will spare you the details--makes clear to me that a living hell (for care-takers too) without much help from current medication is certainly a possible outcome of disease of this kind. We are looking into what options for better outcomes we can plan for ourselves and children, you may be sure.
5
Mr Gutis has my empathy. I hope your resources will allow many good times yet to come. My very elderly Mother just died of this a few weeks ago. My grandmother and Aunt also suffered with it and had much earlier onset than my Mom. Hospice failed and the entire healthcare apparatus failed to keep my family members from physical suffering in their last months. Our country has a backwards healthcare system and I refuse to further participate in the medical industrial complex. I will leave early and on my own terms.
71
@AMR I followed the blog of a woman here in Canada, Gillian Bennett, a psychologist, who refused to live with Alzheimer's so as she rightly put it, keeping her alive would be "ludicrous and wasteful" and she thought it was unfair to dump the burden onto low-status caregivers. But Alzheimer's is a disease of selfishness, denial is encouraged, it's always about the "sufferer", never about the family and certainly never about the caregivers. It's also about making a huge pile of money extracting the assets of the family to pay for care. That's probably why we sugarcoat the illness and encourage people to cling to life. We need to go gracefully. In my country you can apply for medical aid in dying while competent, but so far nobody has. They all would rather slip into the dead-zone.
59
@AMR: if you wish to end your own life -- and are competent to do so -- then no power on earth can stop you.
However, the reality is that a lot of people SAY THIS …. but then cannot do so, because there is really almost never a "thin bright line" between all the good things of life and your fear of future losses.
What if you kill yourself too early and miss out on your grandchildren's laugher or your friend's companionship or another six months with your beloved spouse? or miss the next spring and summer?
Few people know to the degree you imagine, the "exact right time". So they wait too long, and then dementia claims their ability to even remember that they once wanted to end their lives.
I pray it works out for you better than your family. I am saddened that hospice did not help them die peacefully. In most cases, hospice is a blessing.
4
@Detalumis
Yes, I'm familiar with Gillian Bennetts case and admire her for taking action at the time of her choosing! My Mother was at one point in care costing 11K per month which went on for several months, until we were eventually able to move her to a facility charging almost half that for the last 8-9 months. If we hadn't had at least some* money maybe she would have been released from life and suffering much earlier. Although there is not so much money left now. Regardless, the past few years would have been totally unacceptable to her had she been more aware. I understand the Netherlands is also more progressive in how they treat both dementia and end of life euthanasia. Alas neither your country or the Netherlands is likely to take me in. It's every man for himself in the great again USA.
1
This column is a reminder to ask my internist next week about updated testing. I was diagnosed a decade ago as having poor short term memory and severe distractibility, which forced early retirement. I do some volunteer work, but my father's fate (early mild dementia that eventually became severe) is a caution, and I'm traveling now on the assumption that it'll soon not be possible. I'm thinking of a neighbor who drove away on a routine errand, only to be found on a roadside, out of gas, two hours away.
19
@David Martin, there was a book called "Final Exit" that dealt with this kind of thing very forthrightly. I don't know if it's still available....
4
Since I got known about the research on Alzheimer’s by Prof. Dale Bredesen of UCLA, I have read his book, “End of Alzheimer’s “, his research reports and listened to his lectures and interviews via YouTube. I also persuaded my doctor to issue orders of various biomarker lab tests as many as possible as Prof. Bredesen advises us to take as ‘cognoscopy tests’ after 45 years old. As I have improved some of test results since then, I feel better as I think I have been improving for the prevention of Alzheimer’s.
I have started writing about his research in the readers column of NY Times. I notice the cool reactions by the doctors and most of readers. These people are told that Alzheimer’s can’t be treated, and also there are no medicines to treat. Furthermore I notice that most of the people are waiting for the ‘miracle medicine’ to be invented, rather than lifestyle changes.
In the meantime, Prof. Bredesen and his group of doctors have been working with hundreds of people suffering from MCI, Mild Cognitive Impairment, and early Alzheimer’s in order to rehabilitate them from various memory losses.
People had better learn lifestyle changes that Prof. Bredesen advises.
27
@Wind Surfer Wow, I am sure you helped people writing about Prof. Bredesen's work in the NYT. I know it must be disheartening that some people just wait for a miracle cure, or for Doctors to have cool reactions. I am certainly going to read Prof. Bredesen's book and listen to his lectures on You Tube . Thank you so much.
8
There are some misguiding comments here among readers comments. Prof. Bredesen lists 3 group of causes (out of 36 individual causes), namely (1) chronic inflammation, (2) deficiencies of neurotrophic factors (neutrients, hormones and other vital factors for the survival of brain cells), and (3) toxins/toxicants. Alzheimer's patients usually carry 10-15 individual causes, but most common one is not from meat but from excess sugar mostly out of the refined carbs. This is the reason why he suggests 3 inflammation related tests, (1) hs CRP, (2) hemoglobin A1c, and fasted insulin in his 'cognoscopy tests'.
His protocol includes 26 therapies to treat 36 causes, which can't be treated simply by a miracle medicine.
In my case, my doctor initially refused to order fasted insulin test because he is not a specialist.
Best prevention is to take 'cognoscopy tests' every year in addition to the regular annual lab-tests, and improve the results every year. I will tell you, "This is not easy".
12
@Wind Surfer
"The End of Alzheimer's" is a very helpful book. May I also suggest a book called "The End of Pain" by Jacqualine Lagace. Four years ago, I developed a crippling form of inflammatory arthritis which was also destroying my colon and vision. After many tests and being told "there was no cure" but expensive biologic drugs, I stumbled upon the Paleo way of eating (no grains, dairy, sugar). My disease went into complete remission. Brain fog, anxiety and ADD also disappeared.
4
Thank you, Mr. Gutis, for sharing your story. How brave you are. Your mix of optimism and reality is truly admirable. I wish you all the best, and hope the pace of Alzheimer's goes very slowly for you. (My mother had Alzheimer's for about 12 years before her death at 91. My siblings and I have a pact that we'll help any of us who is diagnosed with Alzheimer's to find physician-assisted suicide.) My heart goes out to you.
79
Watching family members, related and unrelated, slip into worsening congnitive decline from AD, I have been able to deal with it in a more peaceful way (though by no means without suffering) by practicing mindfulness meditation. I am also referring to the patients who must confront the many burdensome and bewildering manifestations of this devastating disease. Achieving a better state of mindfulness comes gradually and with diligent effort but I have both witnessed and experienced its value. See: https://www.ncbi.nlm.nih.gov/pubmed/29466242
7
Just lost my mother from a long struggle from dementia. She waited for the whole family of six siblings were around to care for my 92 year old father-Thanksgiving weekend.
We'd Lost our mother to dementia many years ago, but after she's passed, you have this strange feeling of sadness with relief.
To wish your mother to pass to a better state has me struggling. I'm sure we will all heal with the tincture of time.
38
@David Krigbaum,DDS: I am so sorry for your loss. I hope in time, your memories of your mom are only the happy ones from before she became ill, and not the sad memories of dementia.
May her memory be a blessing to you.
2
thank you for sharing your experience. I lost my Dad 12 years ago to Alzheimer like dementia, frontal lobe damage from strokes robbed me of a specular father, wonderfully bright human being. I miss him every day.
27
I wish you well, Philip. Thanks for your brave essay.
156
I have been caregiving for my mother for 18yrs. An NYU lecture showed that a person can enjoy their life at every stage of the disease if they get the right kind of care. Early on, Dr. Gunar Gouras’s medical prescription was to have fun everyday..
Concurrently with drug research, resources to focus development for education for medical professionals on care and interventions for current sufferers is disparately needed. My mother has suffered so much medical abuse and neglect from ignorance over the years.
Research needs to be done with neuroplasticity/synapse and Alzheimer’s. This will validate the need to educate medical professionals to administer good treatment rather than neglect, saying why bother.
AD sufferers have live brain cells. Similar to stroke victims their live brain cells can also be taught to take over function from cells that have died. Stroke brains stabilize. AD brain cells are dying everyday. Patients need daily therapy to keep their live brain cells working. I don’t understand why drs ignore the live brain cells.
NYU Clinical Trial: 750% improvement in functioning with non drug interventions.
https://www.eurekalert.org/pub_releases/2017-07/nlmc-dcw071317.php
NIA AD Guidelines for Emergency and Hospital Workers
http://memoryworks.org/PUBS/NIA/Acute%20Hospitalization%20and%20Alzheimer%27s%20Disease-A%20Special%20Kind%20of%20Care.pdf
14
"Rage, rage, against the dying of the light."
Music, pet therapy, fresh air, interacting with children, snacking, restful sleep, lamps that stave off depression, and gentle reassuring touch may help the emotional lability associated with dementia.
With apologies to Robert F. Kennedy, "Don't get sad, get active." Request help when it's needed. Share your story as Philip S. Gutis does here and the global threat that so many confront. It is estimated that 16 million Americans will be living with Alzheimer's by 2050.
These days I walk our dog around our modest subdivision circle (traditional cul de sacs may not be economically efficient, but they can comfort the confused) and try, with varying degrees of success, to remember the names of residents. Mnemonic devices, Post-It notes, and internet searches can return control and increase morale. The canine examines blades of grass and vines to remind herself where she is, to note those who have gone there before her, and to achieve calm. What a pair we make!
Decades ago, when, after 19 years, my mother succumbed to her "forgetting problem," I told one of her physicians that I was free and eager to help. He was brusque and dismissive. "What would you DO?," he asked mockingly.
If there's work to be done, please let's identify it and engage those willing and able to participate. 'Tis the season of miracles. Pass the blueberries and fan that "little spark of hope."
113
I can empathize with everything that everyone has said. My mom had Alzheimer's, and even within that diagnosis, she still had many good days. I even wrote a book about it called, "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." It's a hard disease to deal with, as all diseases are, I guess, both for the caregivers and patients, but humor and heart can go a log way.
20
I agree with the author and the research that exercise "has helped keep the Alzheimer’s monster at bay."
Another component is what we eat: "If you look across multiple countries, you see a similar pattern, with “[t]he most important dietary link to [Alzheimer’s appearing] to be meat consumption, with eggs and high-fat dairy also [maybe] contributing.” There appears to be a really tight correlation between Alzheimer’s and per capita meat supply. And, then, studies within countries uncover similar findings, with Alzheimer’s and cognitive decline associated with meaty, sweety, fatty diets, whereas most plant foods are associated with risk reduction." https://nutritionfacts.org/video/how-to-prevent-alzheimers-with-diet/
Does the risk go to zero? Apparently not -- but it does go down. That evidence is sufficient for me to eat plant based whole foods (no animal products, minimal to no processed foods), as well as to exercise, and to avoid tobacco and alcohol. And not just for Alzheimer's, but also for a whole host of diseases, including diabetes, cardiovascular disease, and cancer. I prefer to try to tilt the risks in my favor.
24
@Dr. J
Is it that a plant-based diet actually leads to lower risk of Alzheimers, or that in the countries with a plant-based diet, people tend to die of other causes before they get Alzheimers, since those countries tend to have lower incomes with lower access to medical care, etc.?
33
That a meat-centered diet is contraindicated for good health is really not open to debate anymore, is it?
17
I am sorry to hear your diagnosis and appreciate your courage in sharing your condition and your personal outlook and thoughts. There is no question that this is an epidemic that is sadly only projected to increase exponentially. The big question is why is this happening, what is the cause. And of course what are the possibilities for prevention and treatment. Despite enormous financial resources the pharmaceutical companies have not been successful in this regard. The widespread notion is that this is a disease that cannot be prevented. Recently in my mid to late 40's I began to experience some mild cognitive issues. It led me on a journey investigating interventions that could be helpful with brain fog, mental clarity etc. This led me eventually to the work of Dr. Dale Bredesen. I strongly recommend that everyone either read his book "The End of Alzheimer's" or become familiar with his work. If Dr. Bredesen is correct, and I strongly suspect that he is on the right track, it is essential that we take note of his theories and treatment protocol at a younger age. I also hope that governments take note of his work and allocate funding to research that might validate his findings. Wishing all those affected and their loved ones both strength and grace.
25
My husband died of Alzheimer’s in July. He had very good care because we could afford to have extra help both here at home and when he had to go to an assisted living facility. Our daughter
did a heroic job of “managing”. She coped with helpers,the facility and communication. That meant I could face my own health issues. The frustration that was the greatest was that no doctor would say it was Alzheimers. We saw some of the best and some of the unkindest. Trying to explain early cognizant
Impairment to someone with it is very difficult. The medication situation is sad and difficult. We were so fortunate to have the financial means to pay for it all. I cannot imagine what a spouse or child who must keep working has to go through. I know when he went into assisted living it took me a year to catch up on my sleep.thank heaven for hospice. They were fantastic. The final blessing was his doctor used Alzheimer’s as his cause of death.
Hopefully more will do this and research money will increase. The other resource was the Alzheimer’s Association. They are a
Truly wonderful resource, always calm, friendly and above all helpful.
145
@Lucinda Dudley
My sympathies on the loss of your husband.
Thank you for mentioning the cause of death. I agree that this is important. I insisted that my father's death certificate specify Alzheimer's even though the immediate cause was pneumonia, as it often is. Now I'm dealing with my mother's Alzheimer's. Just moved her into memory care, as years of privately paid home care (his and hers) have left her all but destitute. This country is a terrible place to grow old.
68
God bless you
4
Thanks for this life-affirming piece.
49
Altzheimer’s is the number one health crisis in this country. It’s a red alert, five alarm fire, DEFCON Level I emergency. With the number of people hitting the traditional age of onset (not early, like the author) skyrocketing in the next decade, it is nothing short of a coming apocalypse. There will not be enough caretakers to lighten the burden, nor the money to pay for the ones that are available. Any money I receive as inheritance from my father will go towards Altzheimer’s research. My own mother had it, although she didn’t die from it. But she had the crying episodes, which were the most difficult to watch. The memory lapses were not half as bad to see as the crying. I think pieces like this are vital. We need to see how others psychologically deal with the disease, so that we not only know what to expect, but so that we can steer ourselves as best we can to some kind of acceptance.
79
@Frau Greta The 'usual' right wing religious groups - evangelicals and Roman Catholic - are fighting against states that try to enact physician assisted death legislation. Catholic hospitals may attempt to override a patient's documented wishes and insert a feeding tube, etc.
Those of us who would not want to prolong the dying process need to make our wishes known to our families and
let our elected representatives know that others' religious beliefs should not be forced on us.
5