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The Reality of Life
4D
Posted: Monday, December 9, 2019 1:40 PM
Joined: 9/22/2019
Posts: 13


Good afternoon to all. This is not really anything but me getting a couple of things out of my mind because I am having to live with this within my own world. As I have stated before due to business, my profession and all the people that depend on me I cannot tell anyone what is going on with me. My wife of course knows and I have just told my children who are all grown with families and I decided to play it down a lot so they would not get worried. 

I am fortunate that I have a wonderful staff that can handle a lot of my business and as things have been progressing I have been able to slow down from work. Luckily a couple of years ago I started preparing my top people for my slowing down. Not knowing what was just over the hill. 

My plans were to be on the road. My wife and I were planning trips to Europe, Asia, and to travel the world. We were preparing to book one of the 180 day around the world cruises for next summer. 

Now I sit here and this morning been very frustrated thinking about who I once was and I feel I am a young man. But my body and mind are not. I think about the things i once did and how many people I was able to help in some of the procedures I preformed that saved peoples lives and now as I sit here I notice my decline weekly.

 I do not want to be around people, simple task that do not confuse me makes me feel like I have accomplished something and that gives me joy. I think you are a man with 4 college degrees and you cannot be who you once were and the reality hit I will never be. I see friends planning the rest of their lives with grandchildren, family trips, vacations, playing golf, going fishing, having fun in life. 

I realize what I can do I better do soon before progression moves even faster. I have watched my mother and many others face this disease. I always said there were 2 things I prayed I would never be diag. with Alz or had to be put on dialysis. Well the reality is I am dealing with early onset and have to keep it to myself and realize that I have to walk away from my profession I once loved. But I realize it is best for all I do walk away now.  

That is my reality, I have accepted it and will trudge on within my world. I thank you all for allowing me to get this off my chest in words on this board. Otherwise I think I would have had a utter meltdown today. Luckily my wife worked as a RN for 30 years and knows what to expect. She sees my mood swings and how frustrated I get. 

Remember to Live as if today is your last and Love like there is no tomorrow.

I pray you all have a great day.

 


Michael Ellenbogen
Posted: Monday, December 9, 2019 1:49 PM
Joined: 11/30/2011
Posts: 2730


I could have written this myself. The only error I had was I did not have insurance outside the work place before it all happened. I hope you have that in place. 


4D
Posted: Monday, December 9, 2019 1:56 PM
Joined: 9/22/2019
Posts: 13


Thanks for the reply. Luckily I do have insurance out of the work place and since I own 4 different businesses I have been lucky enough to make sure insurance will stay in effect long term. My companies are all under a self insurance program backed by Cigna. We have so many employees it only made sense for us to become self insured. Again that was from a lot of planning a few years ago. Before I am who I am now. I could not even consider setting this up at this point. But you do offer great advice about securing GOOD insurance. IT is a must.
Michael Ellenbogen
Posted: Monday, December 9, 2019 2:05 PM
Joined: 11/30/2011
Posts: 2730


That is great. I would say retire as soon as you can and enjoy the rest of your life with your wife. Make all of your dreams come true now. I had lost out on getting 85% of my 6 figure salary and stock and life long benefits because I was fired and it too me 5 more years to get a diagnoses and you can only go back two to claim wrongful termination. I thought I knew it all but mad the mistake to count on having it all for the company I worked for. If I was you I would do so many things non-stop.  Good Luck


Daniel0910
Posted: Monday, December 9, 2019 2:32 PM
Joined: 12/9/2019
Posts: 3


Does your mother also had Alzheimer’s at such a young age like you?
4D
Posted: Monday, December 9, 2019 2:50 PM
Joined: 9/22/2019
Posts: 13


She did not start showing signs until she was 78 or 79 she is 84 now. She worked until she was 73 because she wanted to. My mother was a very business savy person, very head strong. She and all of her sisters have Alz. 

All four of them are within 8 years of each other in age. She is the 2nd oldest. 

I had genetic testing completed  which was used in my diagnosis among other test that were performed. I spent 3 days at one of the largest hospitals in the US getting test done. 

My genetic test was for the APOE variants, I am waiting to hear back from my genetic APP, PSEN1 and PSEN2 genetic testing along with 25 other genetic test. I chose to do these due to some other symptoms I have.

 I believe from my own research and I state this for the record this is my own opinion that genetic markers can give the best look at specific signs and symptoms for comparison diagnosis. With current genetic markers and research there is enough data to make a definite diagnosis without having so many unneeded test that cost thousands of dollars. 

Even though I did have a lot of test I am of the belief the FDA should approve the blood test that are now being studied for early detection of Alz. 

Again this is all of my own opinion and value each persons opinion. A good doctor will be open to listening, putting together a good exam, with test, signs and symptoms and form a treatment plan that is not to aggressive nor is to conservative. That fits within the patients beliefs and wishes. 

Sorry for such a long answer. It took me almost a hour to write it my typing skills, reading rereading etc. takes a while trying to put my thoughts in a readable form.

 


Amelillo99
Posted: Monday, December 9, 2019 2:55 PM
Joined: 10/7/2019
Posts: 21


But the ps1 ps 2 and the APP Genes are the early onset autosomal dominant genes and your mother had late onset Alzheimer s or does your father or any other close relative had early onset
4D
Posted: Monday, December 9, 2019 3:21 PM
Joined: 9/22/2019
Posts: 13


Good afternoon 

I cannot gather any data from my fathers side of the family he died in the 70's suddenly. He was a very young man. There are none of his siblings alive and I do not have contact with any family from that side. I wish I did have more information but all I could gather was his sister had what was thought at the time to be early onset and it was thought his brother had early onset as well I am not 100% where this came from it was passed on to me from my oldest sister. 

I am the youngest of my siblings and none of my siblings have any symptoms. We range in age from 66 to mid 50's. two of my siblings have E 4 variant once the other  one doesn't have the E 4 variant and I have 2 copies of the E 4 variant. 

I am having these genetic test performed for my own data and records for my children. My goal is to put enough data together when and if they ever face what I am facing they will have a family history that can be relied upon. Me and my doctor are close friends and I have decided to do more than needed as far as test to have all I can for family history for my children. 

 Hopefully a treatment down the road will be there to help others and they do not have to face what we are all facing on a daily basis.  

Hopefully this answers your question. 

Thanks and I hope you have a great day.


Monti00
Posted: Monday, December 9, 2019 3:47 PM
Joined: 8/12/2019
Posts: 18


Have you already did the genetic testing for the early onset genes, because my grandma has early onset AD and me and my mother wanted to do genetic test but my grandma is the only one with this diese in the family her parents and siblings were dementia free while she was diagnosed at the age of 56. so the doctors forbid us to do a genetic test they say that most of the people who have the genetic type of early onset AD have many affected family members.
Daniel0910
Posted: Monday, December 9, 2019 4:16 PM
Joined: 12/9/2019
Posts: 3


I have the same problem my doctor says that we can’t test my mother because she is the only one with the disease in the family so it would be very very unlikely that she has the genetic type and it would be a waste of money that’s what the doctor said. And 4d you said that none of your siblings has symptoms of dementia but In your profile stays you are the sibling of the person with dementia.
BadMoonRising
Posted: Monday, December 9, 2019 5:06 PM
Joined: 4/22/2017
Posts: 298


4D,

I'm sorry. The thought of carrying genes that are deterministic for AD is horrifying. I very much hope that your genetic results will eliminate the liklihood of Familial EOAD. Having to share this information with one's children would be heart breaking.


 



4D
Posted: Monday, December 9, 2019 5:17 PM
Joined: 9/22/2019
Posts: 13


Good afternoon or evening, 

All I can say is WOW I didn't know my rant this morning just needing to vent was going to have such dialogue. 

First touching on my profile. Apparently I marked it wrong. I cannot say I have ever looked at my profile after I filed it out. My mother has Alz. none of my siblings do. Once I finish this post I will go look at my profile. 

Next not wanting to sound out of line but at this point in my life money is not a object as far as genetic test and other test. Like I said before I am and feel the more data points, signs, symptoms, and other test one has for their own profile or for their children is up to each person. 

I have been blessed to have enough money to have all the test I have needed and wanted. If my data or test helps my children that is what I wish for. 

For those that maybe have not read my other post or figured it out since I have not said I have worked in the profession of medicine for 30 years. I worked in emergency medicine most of my life. In emergency medicine there is a saying "Treat'em and Street'em". That is what I was involved with. Luckily I have been able to pay for and have test in a manner most people could not have. Not meaning that in any way other than I have been blessed. 

Due to business reasons I have had to keep everything to myself and my wife. Of course my friend and family doctor knows everything and I was able to see one of the best neurologist in the country completely off the record. I paid for everything out of pocket and plan to have as many test as needed to put together the best picture for my personal files as I can do. I plan to have various types of test every 6 months just for my personal files. When I get to the point I cannot remember to have these test my wife has a complete care plan we have put together and will continue to build our file for our children.  

I was diagnosed via various test, genetic test, signs, symptoms, MRI, PET, CT Scans, Blood work, and a complete mental health screening. Which I would say took 4 to 5 hours and was very interesting / comical at times. 

I am glad so many people here are searching for answers and attempting to figure things out for themselves. When I first posted I was unsure as well and decided it was time for me to jump 100% in so I would know and could make the proper plans that are needed for the rest of my life. With the help of a great friend and my best friend my wife I feel I have a excellent plan laid out. 

Even though like earlier today I was having a meltdown within my own head and very frustrated. I personally need to vent at times without anyone knowing who I am and so I can be completely honest with my feelings. That was what started this thread this morning just needing to vent.

 I have actually shared more than I ever said I would allow my self to share on this board. I am one of the few people in the world that doesn't have a facebook account, or participate in any type of social media. 

I say the above to simply say I don't know exactly what this journey I am on will take me on or where it may take me. It is a journey that I had hoped and prayed I would never face but I am. I don't know how fast I will progress and I don't know what may come from all my testing. I just know that I am doing it for me and my family. 

At times I may share things on this board simply to share them, not debate or anything else just to simply share what is in my journey. Hoping that if one thing I share helps someone else then it was worth sharing. 

Thanks to all who read my long winded post and I pray anyone who reads it understands that I wish that no one would ever face the changes I am facing daily, weekly, monthly etc. in their lives. 

I will say once again "Live as if today is your last and Love like there is no Tomorrow." 

Enjoy your journey and seek to find what brings you peace.

 


Iris L.
Posted: Monday, December 9, 2019 5:38 PM
Joined: 12/15/2011
Posts: 16239


4D, you say you were diagnosed but you don't say what you were diagnosed with.  If you are a physician , so was I in my working life.

Iris L.


4D
Posted: Monday, December 9, 2019 6:42 PM
Joined: 9/22/2019
Posts: 13


Iris, Good evening No I did not say did I. I guess I forgot LOL. 

Until I get further genetic test back we went with Common Alzheimer Disease. Since I am really 3.5 months into testing and diagnosis that seemed to be the best way to go. Now if my other genetic testing shows different we will make a change if needed. 

As far as professional life I never went on and got my MD. I started on the street as a EMT and progressed from there. I completed enough school and should have went on. I said to my sister a few days ago I wish I had went on and got my MD since I spent time getting 4 degrees.

 I have worked in all types of jobs in emergency medicine. I have worked some of the worst disasters the US has ever seen, performing patient care and as admin.

During Hurricane Katrina we setup a clinic that went in right after the storm and saw over 1000 patients in 96 hours. 

I have worked all types of emergency settings doing all types pf procedures, I have been an instructor preceptor. Being a instructor was always one of my favorite things. I loved teaching ACLS, PALS, Advance Trauma Life support, Pediatric Advanced Life support, and advanced airway and iv placement. I always had a great time doing classes with Cardiologist, ER doctors and Internist. It always amazed me how nervous they got when it was time to do hands on testing and the mega codes. Heck I had worked along side them a lot of times in the heat of the moment and they always did great. But during testing it was different and got so nervous. We always had great laughs together in testing sites and had something to rib each other about later on or during lunch breaks. 

I spent part of my time in school specializing as a Paralegal with an advanced degree in medical law. This covered all kind of topics from CMS audits, organ donation, death an dying, living wills, implied consent, mental health rights, I will stop there. It was very interesting. I only need 3 more credits in Law to have my masters in Medical Legal Law. I never wanted to practice law but with one of my businesses I needed to make sure I covered myself and could work direct with my staff attorneys.    

Again I have rambled sharing. I hope you have a great night.

 


Iris L.
Posted: Monday, December 9, 2019 8:57 PM
Joined: 12/15/2011
Posts: 16239


4D, genetic testing does not give you a diagnosis, but will help confirm a diagnosis.  I am positive for APOe4 but I do not have Alzheimer's Disease.  Did you undergo neurocognitive testing? 

 You don't mention how you are functioning on a daily basis.  How are your IADLs?  You have had an eventful career; if you have a bucket list of travel or anything else, may I suggest that you do it now, while you can.  

Iris L.


4D
Posted: Tuesday, December 10, 2019 6:30 AM
Joined: 9/22/2019
Posts: 13


  Did you undergo neurocognitive testing? 

Good morning. Yes I underwent neurocognitive testing. 

 My mornings and evenings are tough. I have ups and downs and go to work very little. Most of the time only doing business via email. Simply saying I keep it simple or generalized. 

Will not be on the board for a while. We are going to our vacation home for a while. We have limited internet service there. It is in the middle of no where and is nice quiet place. Plan on spending a lot of time there coming up. 

Hope you have a great day.


Michael Ellenbogen
Posted: Tuesday, December 10, 2019 8:24 AM
Joined: 11/30/2011
Posts: 2730


That is the way to do it enjoy. When you come back please reach out to me privately. Not sure if you are interested in advocating for this cause but I believe you are the right kind of person for it. I am hanging my shoes soon. 


JudithM
Posted: Wednesday, December 11, 2019 6:18 PM
Joined: 12/10/2019
Posts: 2


I'm so glad for you that you have this outlet to express your thots and feelings.  I have a husband who was diagnosed with eo alz 6 months ago.  He was a truck driver and can no longer drive.  I've also been a nurse for almost 30 years like your wife.  We are just getting our new finances in order and plan on traveling like we were going to do in our retirement which has come early now.  Thank God my husband is content, which has always been his personality anyway.  For me, it's hard to have so much free time when I like being busy and productive (I cut my hours way back so he doesn't have to be alone and stuck in the house all day).  Going to the YMCA has been a life saver as it keeps us moving and in a positive friendly atmosphere.  We look forward to getting out of MN for much of the winter and being able to get outside! I can't dwell on the future as we have no idea what it holds.  I'm working on just trying to enjoy the NOW.  I hope you and your wife will too.