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45 y/o with Early Onset
Shmed
Posted: Monday, October 31, 2022 10:24 PM
Joined: 10/31/2022
Posts: 1


Hey all, new to this. Diagnosed at 43. Still trying to figure out what to do with my days. I can’t drive anymore and I am unable to work. I don’t really live in a big “walkable” town. I’m used to being around people and not being around anyone all day is mind numbing. Any suggestions? I can’t seem to learn how to do new things such as learning to play the guitar and other things like that, etc. Can’t read books. So frustrating. Also, any place to search for in person support groups near me? I can’t seem to locate any. Thanks for any responses.
Iris L.
Posted: Monday, October 31, 2022 11:21 PM
Joined: 12/15/2011
Posts: 18502


Welcome shmed.  Can you tell me what your diagnosis is?  My dx is cognitive impairment not otherwise specified.  I have learned tactics to deal with isolation.  You might do a search for "memory club+your location" to see what is available.  There used to be a lot of activities for me until the lockdowns.  Slowly senior centers are opening up.  It is important to have socialization of some sort.

 

Please post back and let me know what you can find, shmed.

 

Iris


Amy Joy
Posted: Wednesday, November 2, 2022 5:43 PM
Joined: 9/5/2022
Posts: 56


Hi Shmed!

Hi Iris if you’re ready this, those were interesting ideas.

Wow that was young at 43 to be diagnosed with dementia.

I understand what you’re doing through.

I was 49 when I was diagnosed with early onset dementia.

Since being diagnosed I too had to stop working. I can’t drive I now depend on others for transportation.

I also recently started using a walker while out. 

We have good days and bad days just try to be positive and strong.


Augster
Posted: Wednesday, November 9, 2022 12:21 PM
Joined: 11/9/2022
Posts: 1


Hello, 

I was diagnosed at 43, I'm 44 now. I am unable to work and I do not drive. Navigating this new normal is beyond stressful. I would like to find a support group, or just someone who understands what is like. 


Michael Ellenbogen
Posted: Wednesday, November 9, 2022 12:36 PM
Joined: 11/30/2011
Posts: 4456


Are any of you interested in advocating for dementia. That can be done from the home using the computer and making phone calls. If you are reach out to me.  


Iris L.
Posted: Thursday, November 10, 2022 2:25 AM
Joined: 12/15/2011
Posts: 18502


Welcome, Augster.  I'm sorry you have received a dementia diagnosis.  How are you managing day-to-day?  You can ask your local chapter if there is a Memory Club that you can attend.  Also, you can consider this board as an online support group.  We understand what you are dealing with.

Iris L.


Amy Joy
Posted: Monday, November 14, 2022 1:29 PM
Joined: 9/5/2022
Posts: 56


 Hi Augster!

Welcome!

We’re sorry to hear of dementia at such a young age?

How’s your day going?

How are things going?

Does anyone in your family have dementia?

I have a family history of dementia.

I was diagnosed with early onset dementia at 49.

I started showing signs of memory loss and mental decline.

I can see that what happened to my mom is now happening in me.

I’m being recommended for mental help and memory care. 


babyface68
Posted: Monday, December 12, 2022 11:06 AM
Joined: 12/12/2022
Posts: 11


Hello how are you doing.I just am still in shock .My daughter just told me i had vascular denmentia.I was admitted to the hospital last year and they did not tell me i had it so i am so confused as why it took so long to find out about this serious condition.
babyface68
Posted: Monday, December 12, 2022 11:07 AM
Joined: 12/12/2022
Posts: 11


Hello how are you doing
Iris L.
Posted: Monday, December 12, 2022 9:59 PM
Joined: 12/15/2011
Posts: 18502


Welcome, baby face.  I'm sorry you have this diagnosis.  It usually does take some time to go through all the testing to come to a dementia diagnosis.   The good thing about vascular dementia is that attention to cardiovascular issues may make your journey easier.  Please post back and tell how you are doing.

Iris L.


Bortz
Posted: Tuesday, December 13, 2022 2:04 AM
Joined: 12/13/2022
Posts: 1


Hello, I am 54 and was diagnosed 2 years ago. I stopped working 3 weeks ago and just trying to figure out if I should go back or do something else. Still drive but can't multitask anymore. Did anyone apply for SSI for early onset?


babyface68
Posted: Tuesday, December 13, 2022 11:42 AM
Joined: 12/12/2022
Posts: 11


Good morning I heard you can get ssi for medical.I am still currently working.I was going to retire in June if i can make it that long. I am the same age as you.I am still in shock.You think this would happen to someone later in life.
Iris L.
Posted: Tuesday, December 13, 2022 12:01 PM
Joined: 12/15/2011
Posts: 18502


Welcome Bortz.  I hope you had a thorough medical evaluation because there are many dementia mimics.

 

 

It is possible to request work accommodations, if you are substantially able to perform the job duties.  If you cannot, then applying for Social Security Sisability Insurance benefits is the next step.  Also apply for private disability, if you already have that type of policy.

 

There is a fast track for Early Onset AD, but I cannot remember the precise name right now. 

 

If you have not quit your job, you could request sick leave.  This requires a doctor's note.  This will give you time to apply for SSDI, because that requires a lot of medical documentation and takes a lot of time.  You might need a disability law firm to represent you.  

 

Here are government websites that describe work accommodations.

 

www.dol.gov/odep/pubs/fact/employ.htm

 

Go to askjan.org and do a search for the accommodations you are seeking.

(The links that I had no longer work.)

 

Please post back if you have more questions.

 

Iris

 

 


Michael Ellenbogen
Posted: Tuesday, December 13, 2022 12:41 PM
Joined: 11/30/2011
Posts: 4456


 Compassionate Allowances is what I think you are looking for, but if your around 54 or younger and depending on how much you make its not always easy to get it. To be very safe I would seek out an SSDI attorney who specializes in dementia. This is based on me not knowing much about you and wanting you to be safe. I would not say anything to work untill you have spoken to someone.


babyface68
Posted: Wednesday, December 14, 2022 9:47 AM
Joined: 12/12/2022
Posts: 11


Hello I am ok. I just want a second opinion .Because when i was admitted to the hospital last year they told me everything was ok. Its been a year and my doctor is just not telling me about this when I recently told him i was admitted to the hospital. .He was so insensitive about this and did not really explain it to me. And I could not even understand what he was saying to me about the diagnosis. He wants me to take a sleep study for sleep apnea. He should have recommend to see a neurologist about this information.
Amy Joy
Posted: Wednesday, December 14, 2022 6:01 PM
Joined: 9/5/2022
Posts: 56


 Hi baby face 68!

Sorry to hear of your problems.

I understand what you’re going through.

Most doctors really don’t understand what you’re really going through.

In the early days of my dementia diagnosis my doctor lost one of my tests.

I was in a sleep lab recommended by my doctor thinking I had sleep apnea.

The tests results were undetermined I couldn’t sleep from being sent to ER for hours then 

Back to sleep lab then back to ER spending the rest of the day there. 

Seeing so many doctors and nurses I couldn’t remember what the first one said by the time I 

Was going home.

 


Iris L.
Posted: Thursday, December 15, 2022 12:03 AM
Joined: 12/15/2011
Posts: 18502


A sleep study is a good idea because sleep apnea can cause memory loss and other problems, even cardiovascular problems due to low oxygen level in the blood.  

 

I always bring a notebook with me to medical appointments to write down what is said to me, because I know I won't remember what has been said.

 

Baby face, doctors really don't know what to say to people like us.  It is a good idea to educate yourself, then you can know what questions to ask regarding your own situation.  Primary care doctors are mainly to examine for the dementia mimics, then they should refer to a neurologist for a more specific diagnosis.  But be aware, even the neurologists can do only so much.

Iris


babyface68
Posted: Thursday, December 15, 2022 9:45 AM
Joined: 12/12/2022
Posts: 11


I am so upset and mad. Do not no what to believe .I was admitted in the hospital this time last year .I passed out and hit my head on a air conditioner. When I came to i called the nurse and she said i was having seems like stroke like symptoms .I was in the hospital for 2 days. They ran a lot of different tests on me a ct scan and a mri. They asked me a series of questions and when i was released they told me everything looked ok. They did not tell me i had vascular dementia. They told me to follow up with my doctor in 2 weeks .Covid was still going on so i never did .I seen my doctor last week and i told him i was in the hospital.He looked it up and then told me the diagnosis. I was in shock could hardly understand what he was saying .But i did hear vascular dementia and come fro my high blood pressure for years.I have been on medication for this for 24 years and it was controlled .I am so confused. He sent me on my way and just was so like he did not even care or care to talk to me about. it. I just do not no why it took a whole year without no one telling me my results or sending me any information.He did want me to go for sleep study.I am about to switch doctors so i can get a better understanding of what is going on with me and my body.
Iris L.
Posted: Thursday, December 15, 2022 5:55 PM
Joined: 12/15/2011
Posts: 18502


Baby face, you should consult a neurologist who specializes in diagnosing the dementias.  Not all neurologists have this specialty. You can call the Helpline phone number (800-272-3900) and ask to speak to a Care Consultant, who can refer you to an Alzheimer"s Disease Research Center in your area.  If there is none, they can suggest a few neurologists.  

It is not unusual to feel angry.  The approach to PWDs (persons with dementia) is terrible--you are not the only one mistreated.  The best thing you can do is to educate yourself,  so you will be able to ask questions appropriate to your own situation.

As far as a notation in your chart at the hospital, the only way such a diagnosis could have been made is by ruling out all other causes.   I don't know if that was done.  That's why it's good to get a consultation with a neurologist. 

Neurology appointments are hard to come by.   Start calling now, it may take a few months.

Try to enjoy this holiday time.

Iris


Debbie Anne
Posted: Monday, December 19, 2022 9:16 PM
Joined: 12/19/2022
Posts: 1


Babyface68:

My husband has a dissected main artery in the back of his head and the other one is 80% blocked. He has very brittle arteries so a bypass is not an option for the blocked artery. He is 65. He was diagnosed with mild dementia in March 2022 after quite a few years of me seeing changes to his cognitive skills. The neurologist he sees did not state vascular dementia but I can’t help but think the lack of blood flow and oxygen to the brain is playing a part in it.  My husband also has sleep apnea and the symptoms for that are very similar to dementia. 

Please follow up on the sleep apnea. There are some alternatives to the CPAP machine. My husband (and me too) have custom fit removable appliances that we wear at night. I worked for many years for a dentist who treated sleep apnea with these appliances. Your primary doctor needs to order the sleep study then will refer you to a dentist who can have the appliance made for you. Be sure to get a custom made appliance. The one size fits all does not give you the best results. Many medical insurance companies will cover a portion of the fee now. 

My dad had sleep apnea and wasn’t  diagnosed until very late in life. His brain and organs were deprived of oxygen for many years which contributed to his early death. I would also encourage you to see a neurologist who specializes in your particular dementia. I have seizures myself and I thought a neurologist is a neurologist, right? No. Wrong. 

I am so sorry for the shock you must feel at just finding out about your condition! Please follow up and get the best care you can. If you don’t feel right with a doctor, get another one… You want someone who will be there for you. 

Good luck to you on this journey. My heart and prayers go out to you as you unravel this struggle. 


babyface68
Posted: Thursday, December 29, 2022 10:42 AM
Joined: 12/12/2022
Posts: 11


I want a copy of my mri.  My doctor said it said micro vascular disease.
babyface68
Posted: Thursday, December 29, 2022 11:05 AM
Joined: 12/12/2022
Posts: 11


Thank you so much.  I am working on getting another doctor.  I do not want him anymore.  And I do want a second opinion.  Because i no you can get it very young.  But this one is rare in people younger than 65.
Amy Joy
Posted: Monday, January 2, 2023 5:55 PM
Joined: 9/5/2022
Posts: 56


I’ve been diagnosed with early onset dementia after years ago.

I have sleep apnea and my oxygen level drops to the 70s while I’m sleeping.

 


Iris L.
Posted: Monday, January 2, 2023 6:02 PM
Joined: 12/15/2011
Posts: 18502


I developed significant memory loss at age 37.

 

Iris


Amy Joy
Posted: Tuesday, January 3, 2023 4:47 PM
Joined: 9/5/2022
Posts: 56


Wow!

Iris you are so young!!


Iris L.
Posted: Tuesday, January 3, 2023 5:28 PM
Joined: 12/15/2011
Posts: 18502


Amy Joy, I am 72 now.  I have had significant memory loss for decades!  My memory loss is not from Alzheimer's Disease, but from other etiologies.  This is why a thorough medical and neurological evaluation is so important, to search for all possible causes of memory loss.

Iris


Aroberson
Posted: Tuesday, January 10, 2023 7:40 AM
Joined: 7/24/2021
Posts: 14


I’m wondering if you have sleep apnea, do you snore?  Dimentia doesn’t just start one day.  It takes years 10 to 20 years or longer to see the effects in most cases. That means the groundwork was laid 10 to 20 years ago starting with moderate sleep apnea, insulin resistance, genetics, or a combination of all of the above.  My best friends (a set of twins) dad snored so loud he had to sleep on the couch.  He slept on his side but you could still hear his snoring when you were standing outside their front door with the door closed.  He died of Parkinson’s/Dystonia combo at 64.  While I’m not a medical doctor I consider myself a good researcher.  I suggest you figure out if you are insulin resistant and change your diet accordingly.  You should also try and see if you can get into a sleep study.
Amy Joy
Posted: Tuesday, January 10, 2023 1:45 PM
Joined: 9/5/2022
Posts: 56


 Hi Iris!

I understand what you are going through I have memory loss for a long time.

I enjoy reading your posts.

I was in a sleep lab but the test was incomplete.

The part of the test that was done showed abnormal results.

I will be re tested in March.

Amy joy
4fosters
Posted: Tuesday, January 17, 2023 8:08 PM
Joined: 1/17/2023
Posts: 1


What area are you in. My husband is 62. We are looking for others with Early Onset to socialize with. We are in Austin, TX
Amy Joy
Posted: Monday, January 23, 2023 12:59 PM
Joined: 9/5/2022
Posts: 56


 Hi 4fosters!  

Welcome! 

Sorry to hear about your husband diagnosed with early onset dementia.

Does it runs in the family?

I was 49 when I found out and I’m told my dementia is progressing 

Re; many tests and MRI

My mom and older brother have dementia.