It should be considered a violation of medical ethics to give a patient that kind of diagnosis via some late-night email. That detail of the story just infuriated me.
@@micheleoconnell8749 I believe they said they received an email or some sort of notification of the results at night, outside their doctor's office. But regardless of whether they received an email or accessed a patient portal, my point was that serious diagnoses should be delivered by a doctor in person.
At 61 years old, I was diagnosed with early-onset vascular dementia this early summer. An MRI was done on my head. I will be soon seeing a psychiatrist and a social worker to help me through what I am dealing with. Like Michele, I had a pretty high-stress job, in education teaching research. My wife of 25 years has been a big help. I no longer can work, and I’m having a real issue with forced retiring early. I sleep a lot now and walk daily, but this winter will not be good. At one time before my diagnosis, I could barely function. Getting better with not working. I am taking many medications now. I also played music and guitar for over 50 years, and I’m in a slow decline. Daily I don’t notice much change. In September of 2023, I decided to take a huge bottle of vodka and chug it down, hoping I would die in my sleep. I ended up rolling off the bed and hitting the floor. That trip took me to the ER for 8 hours to sober up. I was a 2 beer guy at best, so not a very big drinker. I don’t remember much of that trip. I’m doing better now, but have no children, but my dad does visit me several times a week. Good thing I have insurance, but money is super-super tight, daily. If you want to call dementia a journey, it’s a journey through hell. Long-term memory for me is ok, but I write down a lot of things I need to remember in the short term, just to get through the day (when bills are due and appointments). I haven’t watched a TV show in 20 years, but I love TH-cam videos for inspiration. Thank you, Michele, Doug, and Deborah, for this video. Talking to me you wouldn’t know I had vascular dementia, as I am also very articulate.
I also teach. Have a PhD and have been diagnosed with small vessel ischemic disease. My ability to focus is out the window, and my ability to multitask is gone. I think that one of the biggest things for me is the loss of initiative. I hope that you get some relief.
A lot of fairly young individuals who are diagnosed with Alzheimer, say they worked under a huge amount of stress for years and years..We see the disease go down in age on people, stress on the other hand has increased in society, the 24/7 on call, always reachable on phone, the pressure to achieve and so on. If we go back in time, before the digital era, young patients with Alzheimer weren't seen that often. Or it could be, we didn't hear about them, due to no internet.. I don't know, but living under constant stress is not a good thing, for anyone, it can cause a lot of diseases, Alzheimer included.
Completely agree, it seems that a lot of people who have lived for years with high stress situations develop dementia; many very high functioning individuals.
ehh, population has increased double since the late 60's, of course there's going to be a lot more people with diseases, and since science has advanced so greatly during that time, it can be diagnosed much faster and accurately. Instead of just calling them goofy, or senile, like in the old days.
@@hw5091 ehh...the point was we see a lot of younger ones getting the diagnosis (and most of them say they lived under a huge amount of stress in their lifes) NOT about the increased population. Or do you think the increased numbers of younger people now getting diagnosed with for example diabetic2 is also due to increased population...? Let me inform you, it's due to lifestyle, fastfood amongst other things..
I found out my husband has early onset Alzheimers disease through our portal and took 3 weeks to see the Neurologist. I was sitting on the news 3 weeks! No way did i want to tell my poor husband. So many parts of this couples journey are like ours. 😢 my husband was diagnosed at age 55, he is 57 now.
There are two people in my father's family that got dementia or Alzheimer diagnosis (the difference between Alzheimer and dementia is not clear to me). - When I was a child, the father of my fathar had dementia and died when he was 76 years old. I don't know how he was without dementia, because I was a child; - My father himself is 85 years old and has no signs of Alzheimer. But he also looks pretty young. But his hair is turning grey just a short time ago. I tend to think he is pretty healthy. He doesn't have serious health issues but hearing is a problem sometimes; - The sister of my father is 74. I think her dementia or Alzheimer started a few years ago. Maybe she was 71 or 72 or so; - I myself am 57 years old. I don't have Alzheimer but I have an autism diagnosis. I don't know whether I will get Alzheimer. I am highly intelligent and my autism is very mild. But I would like to know: how is the correlation between Alzheimer or dementia and autism? What is the percentage of Alzheimer patients between autistics, and what is the percentage of Alzheimer patients between people without autims?
Thank you for this great interview. MIchelle mayI ask how long it took you to get disability? My husband received this awful diagnosis a few months ago. He’s 54. He an attorney too. Honestly we are crushed.
Social security is understaffed and barely functional. It can take a year to get approved for SSDI, and that’s fast, if you have a disability attorney who can help expedite the system. It can take several years unfortunately. It helps to have a disability attorney knows the system and more importantly, they know the judges.
I'm 55, lost my job. Have a hard time with memory, mind goes blank in the middle of conversing, get easily frightened riding in the car and even worse with driving (easily distracted.. like an uncontrollable gravitation to divert my attention). I found I have been mis-medicating (had packaged my meds for three months, found I had doubled my am meds near refill time. I don't remember how I messed up, but it's been some time since i packed them. Easily angered and struggle to let things go and dont know why im so upset. Super thursty and fatigued. The other day while shopping I and the misses were checking out when she noticed I was taking the groceries and bagging them without scanning them. If she wasn't there I probably would have gotten arrested. I wanna get the blood test, do you think I should get the the spinal fluid test too or the PET/MRI?
I have not been diagnosed by a dr still having test done I know that’s what I have because it runs in my family. I just wished they would not make me wait so long. My appt for the pet scan is Monday neurologist appt is in January. So I just wait and cry and worry. When do I apply for disability? And Medicaid. I don’t know how to do anything
My mom passed away 3 months ago the day after Christmas at 66. Ske was full of life and danced literally until 3 days before her death. Her dad, grandmother, brother, and 3 sisters had it. I used to be overwhelmed with the thought that now I have it. Then I realized that I was pre-planning, pre-stressing something that I didn't even know. I thought to myself a few senario. 1) ok what if you do have it and you will not see the effects until 10 years from now. Am I going to worry which WILL make it worse or do I take that time to plan, let my family know what I want, and live my best life receiving love & laughing until my stomach hurts. 2) What if I don't have it and will never get it (after all my moms maternal side had no cases of dementia or alz and they all lived past 90) but the worrying leads me to a heart attack or other illness. What if I pre-worried for nothing and the stress & fear makes me miss out on living. So I decided not to be friends with worry, fear & stress. Whatever happens I chose to live life to the fullest. There are days that those thoughts come up and I choke the mess out of those thoughts by positive affirmative, being as proactive as I can with exercising, diet, and meditating on scriptures (1 John 4:18, Philippians 4:6-7, John 14:27, Matthew 6:33-34, Psalm 55:22) We have absolutely no control over tomorrow but we can live in the present and make it count. That's not to say that the feeling of fear doesn't call me every now and then, I just hang up. Peace
I’m 44 and had a ct scan the doctor said that I have brain general cerebral atrophy looking at the report I may have worded that wrong as I can’t 💯 remember what he said but did say that he wouldn’t expect the amount of loss for someone my age but in a 70 year old he is writing to the neurologist but just left me with that I went to the gp presenting with memory issue 🤷🏼♀️
Well I wish I didn’t know or have the scan but other than that yeah I’m ok still have memory issues but nothing that majorly affects my life yet thank God 🫶🏻 I’m just trying to make the most of my life while I am here 🙏🏼
Why has nobody looked at a different way of treating dementia rather than just drugs , I think I might of stumbled on something that nobody has even looked at or thought about now maybe I’m some kind of crank nutcase who is another person who is yet another one who is a legend in their own minds or as everyone who I’ve met and worked with have said you just think differently too everyone else , I have looked at all the treatments and yet really can’t believe nobody has even considered what I have thought about .
At 13:00: I found out I had a brain tumor at 5:30 AM on my patient portal! Doctors do not like this! I’m not sure who designed that system but it can be cruel.
I made a critical comment about her on a different "chapter", but I have a very different opinion now...she listens very well and does not interrupt. Very good info. I believe I have Alzheimer's too, being tested with lengthy cognitive tests at this time but think there must be a better way. I've been researching here on youtube and finding a lot of info.
It should be considered a violation of medical ethics to give a patient that kind of diagnosis via some late-night email. That detail of the story just infuriated me.
It’s not a late night email it’s on a patient portal which they opened and saw the results.
@@micheleoconnell8749 I believe they said they received an email or some sort of notification of the results at night, outside their doctor's office. But regardless of whether they received an email or accessed a patient portal, my point was that serious diagnoses should be delivered by a doctor in person.
@@mbb-- it’s not how I understood it.
@@mbb--Unfortunately, bad news can come through the patient portal before the physician has the opportunity to view the result.
At 61 years old, I was diagnosed with early-onset vascular dementia this early summer. An MRI was done on my head. I will be soon seeing a psychiatrist and a social worker to help me through what I am dealing with. Like Michele, I had a pretty high-stress job, in education teaching research. My wife of 25 years has been a big help. I no longer can work, and I’m having a real issue with forced retiring early. I sleep a lot now and walk daily, but this winter will not be good.
At one time before my diagnosis, I could barely function. Getting better with not working. I am taking many medications now. I also played music and guitar for over 50 years, and I’m in a slow decline. Daily I don’t notice much change.
In September of 2023, I decided to take a huge bottle of vodka and chug it down, hoping I would die in my sleep. I ended up rolling off the bed and hitting the floor. That trip took me to the ER for 8 hours to sober up. I was a 2 beer guy at best, so not a very big drinker. I don’t remember much of that trip.
I’m doing better now, but have no children, but my dad does visit me several times a week.
Good thing I have insurance, but money is super-super tight, daily.
If you want to call dementia a journey, it’s a journey through hell. Long-term memory for me is ok, but I write down a lot of things I need to remember in the short term, just to get through the day (when bills are due and appointments). I haven’t watched a TV show in 20 years, but I love TH-cam videos for inspiration. Thank you, Michele, Doug, and Deborah, for this video. Talking to me you wouldn’t know I had vascular dementia, as I am also very articulate.
Lord Bless you... my husband has Young Onset Alzheimer's (59) I grieve daily 🥺
I also teach. Have a PhD and have been diagnosed with small vessel ischemic disease. My ability to focus is out the window, and my ability to multitask is gone. I think that one of the biggest things for me is the loss of initiative. I hope that you get some relief.
There needs to be much more funding to find better treatments for this disease because it is truly awful to have or witness.
A lot of fairly young individuals who are diagnosed with Alzheimer, say they worked under a huge amount of stress for years and years..We see the disease go down in age on people, stress on the other hand has increased in society, the 24/7 on call, always reachable on phone, the pressure to achieve and so on. If we go back in time, before the digital era, young patients with Alzheimer weren't seen that often. Or it could be, we didn't hear about them, due to no internet.. I don't know, but living under constant stress is not a good thing, for anyone, it can cause a lot of diseases, Alzheimer included.
Completely agree, it seems that a lot of people who have lived for years with high stress situations develop dementia; many very high functioning individuals.
I notice a highly intelligent people seem to be prone to this awful disease.
ehh, population has increased double since the late 60's, of course there's going to be a lot more people with diseases, and since science has advanced so greatly during that time, it can be diagnosed much faster and accurately. Instead of just calling them goofy, or senile, like in the old days.
@@hw5091 ehh...the point was we see a lot of younger ones getting the diagnosis (and most of them say they lived under a huge amount of stress in their lifes) NOT about the increased population. Or do you think the increased numbers of younger people now getting diagnosed with for example diabetic2 is also due to increased population...? Let me inform you, it's due to lifestyle, fastfood amongst other things..
@@anniezion you can't compare type 2 diabetes to Alzheimer's. That's a logic fallacy. What I mean is what I said. Read it again.
I found out my husband has early onset Alzheimers disease through our portal and took 3 weeks to see the Neurologist. I was sitting on the news 3 weeks! No way did i want to tell my poor husband. So many parts of this couples journey are like ours. 😢 my husband was diagnosed at age 55, he is 57 now.
There are two people in my father's family that got dementia or Alzheimer diagnosis (the difference between Alzheimer and dementia is not clear to me).
- When I was a child, the father of my fathar had dementia and died when he was 76 years old. I don't know how he was without dementia, because I was a child;
- My father himself is 85 years old and has no signs of Alzheimer. But he also looks pretty young. But his hair is turning grey just a short time ago. I tend to think he is pretty healthy. He doesn't have serious health issues but hearing is a problem sometimes;
- The sister of my father is 74. I think her dementia or Alzheimer started a few years ago. Maybe she was 71 or 72 or so;
- I myself am 57 years old. I don't have Alzheimer but I have an autism diagnosis. I don't know whether I will get Alzheimer. I am highly intelligent and my autism is very mild. But I would like to know: how is the correlation between Alzheimer or dementia and autism? What is the percentage of Alzheimer patients between autistics, and what is the percentage of Alzheimer patients between people without autims?
Thank you so much for the interview - amazing - enjoy every day to the fullest
Diagnosed With early onset, Alzheimer’s disease, 52 years old
Thank you for this great interview. MIchelle mayI ask how long it took you to get disability? My husband received this awful diagnosis a few months ago. He’s 54. He an attorney too. Honestly we are crushed.
Social security is understaffed and barely functional. It can take a year to get approved for SSDI, and that’s fast, if you have a disability attorney who can help expedite the system. It can take several years unfortunately. It helps to have a disability attorney knows the system and more importantly, they know the judges.
You count on about 2 years.
54 is considered early onset. Tell your kids to get genetic tests done as early onset is genetic.
@@smfarrie2943and do what with that information? There’s nothing preventive that’s been proven.
Yes, multitasking goes out the window.
She's very articulate. Never would guess she had Alzheimer's.
I think it’s very recognizable with her missing words. She is definitely in the moderate stage. So sad.
That’s the problem, and it leads to late diagnosis
Extremely eloquent
I work long term care. Just live life enjoy each day !!!
Wow. I had to watch this twice to fully absorb how similar our stories are. I’m 57 and in South Florida.
I'm 55, lost my job. Have a hard time with memory, mind goes blank in the middle of conversing, get easily frightened riding in the car and even worse with driving (easily distracted.. like an uncontrollable gravitation to divert my attention). I found I have been mis-medicating (had packaged my meds for three months, found I had doubled my am meds near refill time. I don't remember how I messed up, but it's been some time since i packed them. Easily angered and struggle to let things go and dont know why im so upset. Super thursty and fatigued. The other day while shopping I and the misses were checking out when she noticed I was taking the groceries and bagging them without scanning them. If she wasn't there I probably would have gotten arrested. I wanna get the blood test, do you think I should get the the spinal fluid test too or the PET/MRI?
I'm with you
I have not been diagnosed by a dr still having test done I know that’s what I have because it runs in my family. I just wished they would not make me wait so long. My appt for the pet scan is Monday neurologist appt is in January. So I just wait and cry and worry. When do I apply for disability? And Medicaid. I don’t know how to do anything
My mom passed away 3 months ago the day after Christmas at 66. Ske was full of life and danced literally until 3 days before her death.
Her dad, grandmother, brother, and 3 sisters had it. I used to be overwhelmed with the thought that now I have it. Then I realized that I was pre-planning, pre-stressing something that I didn't even know. I thought to myself a few senario. 1) ok what if you do have it and you will not see the effects until 10 years from now. Am I going to worry which WILL make it worse or do I take that time to plan, let my family know what I want, and live my best life receiving love & laughing until my stomach hurts. 2) What if I don't have it and will never get it (after all my moms maternal side had no cases of dementia or alz and they all lived past 90) but the worrying leads me to a heart attack or other illness. What if I pre-worried for nothing and the stress & fear makes me miss out on living. So I decided not to be friends with worry, fear & stress. Whatever happens I chose to live life to the fullest. There are days that those thoughts come up and I choke the mess out of those thoughts by positive affirmative, being as proactive as I can with exercising, diet, and meditating on scriptures (1 John 4:18, Philippians 4:6-7, John 14:27, Matthew 6:33-34, Psalm 55:22)
We have absolutely no control over tomorrow but we can live in the present and make it count. That's not to say that the feeling of fear doesn't call me every now and then, I just hang up.
Peace
@summerstanford4078 thanks!❤
The big question: are the plaques responsible for Altzheimer symptoms? I enjoyed the discussion. Thank you.
I’m 44 and had a ct scan the doctor said that I have brain general cerebral atrophy looking at the report I may have worded that wrong as I can’t 💯 remember what he said but did say that he wouldn’t expect the amount of loss for someone my age but in a 70 year old he is writing to the neurologist but just left me with that I went to the gp presenting with memory issue 🤷🏼♀️
Are you ok?
Well I wish I didn’t know or have the scan but other than that yeah I’m ok still have memory issues but nothing that majorly affects my life yet thank God 🫶🏻 I’m just trying to make the most of my life while I am here 🙏🏼
63 week wait for a neurologist here
@@stayhumble6092One day at a time! Wishing you the best! ❤
Why has nobody looked at a different way of treating dementia rather than just drugs , I think I might of stumbled on something that nobody has even looked at or thought about now maybe I’m some kind of crank nutcase who is another person who is yet another one who is a legend in their own minds or as everyone who I’ve met and worked with have said you just think differently too everyone else , I have looked at all the treatments and yet really can’t believe nobody has even considered what I have thought about .
Can you share your thoughts??
@@periel who might you be one may ask ?
I would like to connect with Michelle, my husband got diagnosed at 58
So helpful and hopeful to listen to this. Thank you
Super helpful this! more please :) Thanks!!
At 13:00: I found out I had a brain tumor at 5:30 AM on my patient portal! Doctors do not like this! I’m not sure who designed that system but it can be cruel.
I made a critical comment about her on a different "chapter", but I have a very different opinion now...she listens very well and does not interrupt. Very good info. I believe I have Alzheimer's too, being tested with lengthy cognitive tests at this time but think there must be a better way. I've been researching here on youtube and finding a lot of info.
It takes 2 years in Florida to get Medicare? Yikes.
Thx so much this was helpful. My 61yr old husband was just diagnosed w Alzheimer’s 4 mo ago and real experience is very appreciated.
😮❤
👌 𝐩𝓻Ỗ𝓂Ø𝓈Ｍ
Good evening!friend- Yeah! you created amazing -😊