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Newly diagnosed. Hello to anyone out there :)
Skye
Posted: Sunday, September 29, 2013 11:51 AM
Joined: 9/23/2013
Posts: 1


ew EOD diagnosis..trying to figure all of this out. Hello to anyone out there
alz+
Posted: Sunday, September 29, 2013 2:29 PM
Joined: 9/12/2013
Posts: 3608


Hello to you. Lots of good comfort and advice on this forum. I was diagnosed in July 2013. Aricept helped a lot at first, but eventually even cutting back doseage it added to my anxieties so on nothing now. I see a counselor as the panic and fear can be overwhelming. 

She is very solution oriented, practical, has helped a lot! 

Come back to forums and read and post. 

Things that help me: 

walking / swimming 

massage 

learning more about how not everyone has a horrible time with this 

settling legal affairs 

counseling outside of friends and family 

animal companion 

Ativan 

MM 

reading when I can distract myself 

  

there is something here called (?) BEST PRACTICES but I for got them. 

  

I am learning to live WITH it, still cry sometimes but I want to do all I can to make this journey as meaningful and pleasant and peaceful as I can. Beyond that, faith makes it endurable. I have gone through many awful things in my life but this is a big pie in the face. Lots of grieving, but I am moving ahead. 

You will too, keep connecting to people who are helpful! 


Iris L.
Posted: Sunday, September 29, 2013 4:25 PM
Joined: 12/15/2011
Posts: 18513


Welcome to our online support group, Skye.  What's going on with you?  We aim to encourage and support you.

Many of us use Best Practices which are lifestyle habits that help us to function better and to help prolong the early stages.

--take medications as prescribed

--eat the Mediterranean diet, including many anti-oxidant fruits and vegetables, and omega 3 fats

--exercise vigorously to tolerance

--continue to stimulate your brain

--continue to socialize

Many people add other modalities that they have found to help them, such as aromatherapy.  Also get good sleep, avoid stress, and keep a positive attitude.

I have had much improvement over these past four years.  I'm on Exelon patch and Namenda and my diagnosis is cognitive impairment nos.

Keep reading the boards and post whenever you have a question or concern.

Iris L.


RDykes6555
Posted: Monday, September 30, 2013 9:23 PM
Joined: 3/21/2013
Posts: 5


Hello there! I was glad to see others like me! My EOAD is progressing to the point where I loose many hours of each day and can't even tell you what I've done! I am trying my very best to stay present, but I fins that there are days where I can't even post, ow make myself so anything else foe that matter, but sit and stare! I do cry at times for the time I am missing with my family, and the fear of knowing that the time is drawing closer where I need to have all of my legal affairs in order and may not be able to stay home alone much longer.
Iris L.
Posted: Monday, September 30, 2013 10:36 PM
Joined: 12/15/2011
Posts: 18513


Welcome to our online support group, RDykes.  It is hard, isn't it?  At lease your family seems supportive.  Take one step at a time and keep posting.

Iris L.

mish
Posted: Tuesday, October 1, 2013 4:47 AM
Joined: 6/21/2012
Posts: 439


they pretty much nailed it, I am 44 and yeah it sucks to put it midly! But we have no choice other than face it and go on the best we can with the help and support of this board, groups and your support system. This board has been a saving grace for me. Personally, I am trying to go places that I always wanted to. Basically, I am a third wheel on my parents trips. lol.

a positive attitude is key I find. Not always easy  but key.

if you need anything we are all here for you.

Namaste!

mish


DiznyDiana
Posted: Friday, October 4, 2013 7:48 PM
Joined: 8/25/2013
Posts: 11


Hi sorry for your diagnosis. I am a caregiver for my recently diagnosed husband.  As he is as normal as he was before he knew we are trying to figure out our new normal. Still lots of questions lots of unknowns.  

Always so busy with work we are now spending more time together.  Not saving for tomorrow what we can do today. Trips. Time out. That sort of stuff. We have 2 kids at home so that keeps him busy with household stuff. 

There is so much that has been taken away that I can't even talk about it. So much uncertainty that I try not to think about it. Right now we are in a new normal trying to figure out a budget and waiting on a decision from. SSDI  

Uncertainty is so knawing it eats and eats at you. At first getting diagnosed was a relief because he lost a string of 7 jobs with no reason. A six figure executive who ended his last job making 10 an hour. The diagnosis took guilt away   

Now we are in limbo as our savings are dwindling.  Our application to SS has been in since 7.14. We were called in a few weeks ago to fill out a minor claims benefit and while the lady was very compassionate she could only tell me that our claim was in Medical and that we would hear in 60 to 90 days. That's so far away. My husband feels horrible. I am very antsy. So much for fast decisions. 

After we pass this hurdle my husband talks about setting up a routine.  He is even open to attending a support group once a week.  I pray that this will be his retirement state and that it will last for years. Iris happy to read that you feel like you have gotten better.   My husband seems better now that he doesn't have the stress of work. He is a really considerate of me and positive. 


RDykes6555
Posted: Friday, October 4, 2013 8:14 PM
Joined: 3/21/2013
Posts: 5


Hello to you! Thankyou for your post, it is nice to hear someone so positive! I am also on Aricept, however they had to Increase the dis was it wasnr helping all that much. I am becoming worse and have terrible times with sleeping and night fear etc. as you mentioned. I am starting to loose the concept of time and fins it really difficult on my bad days to post or read online.  But, on the days that I can, I appreciate talking to others! I enjoy gardening, and spend most of my time tending to my plants and flowers.  Hang in there and I hope you are doing well !
RDykes6555
Posted: Friday, October 4, 2013 8:16 PM
Joined: 3/21/2013
Posts: 5


Thank you Iris, I am trying!
RDykes6555
Posted: Friday, October 4, 2013 8:29 PM
Joined: 3/21/2013
Posts: 5


Hi mush, yes it does suck! This crappy disease takes no prisoners!! Just do what you can while you can!! I would recommend that you all join the online group called Memory People on Facebook.  The founder rick phelps was also diagnosed with early onset. You can also type his name into you tube and watch a few of the video logs that he has done! I find a lot of comfort in memory people and loads of support!
RDykes6555
Posted: Friday, October 4, 2013 8:35 PM
Joined: 3/21/2013
Posts: 5


Diana, oh I feel so bad foe you and your family!! I had to do the SSDI route too which took almost 2 years!! What I eventually found out is that you have a much better chance of being approved with EOAD because they now accelerate those claims.  Just make sure you have sent them ALL medical records etc so that you can get an approval! I had a company named Allsup that helped me and they even got me an award without a hearing, because of the diagnosis. Good luck, hang in there and yes, don't put anything off until tomorrow!! I am here if you ever need to talk!
DiznyDiana
Posted: Friday, October 4, 2013 8:37 PM
Joined: 8/25/2013
Posts: 11


Loved Ricks Videos. Thanks
ilovemygrey
Posted: Saturday, October 12, 2013 2:47 PM
Joined: 1/30/2013
Posts: 66


hi RDydes,, I am not sure I am spelling that right,,, sorry if that is not right.. hope U are having a happy Saturday today. I am waiting for a Pet Scan to see if I am too getting diagnosed with EOA D too.. only time will tell.. I have not been scheduled for it yet.. I am just waiting for a phone call from my Neurologist's office from his Nurse. I hope U continue to do better! I have a 6 year old son who is adopted and now is in all Day Kindergarten .. that is good for both of Us!!LOL.. hope U have a good Sunday too.. hope to chat more later.. I am married too.. my h does not get this disease yet either.. he is a trucker and never home , only weekends.. so, if and when I get worse I will need my daughter's help more than now.. she is now 19 and a Sr in HS this year. all my other kids are grown with  families of their own.. talk later I hope.. Lisa in IN..
Myriam
Posted: Saturday, October 12, 2013 10:42 PM
Joined: 12/6/2011
Posts: 3326


I want to add my welcome to you, RDykes. I've found this to be a very supportive and informative site.
KayeK
Posted: Monday, June 2, 2014 1:41 PM
Joined: 6/1/2014
Posts: 52


Hi I just joined here yesterday and I think so far this is a very informative and helpful site. Its nice to be able to talk to people who are experiencing some of the same things you are experiencing. Its such a shock when you are first diagnosed. I always hoped and prayed I wouldnt have this dreaded disease as I watched my mothers mom go thru this . Then my mom was diagnosed when she was 51 she is now 67 she has good days and bad but i notice her memory is deteroirating more now. I was diagnosed with this in April of this year but knew there was something wrong way before then. It got worse after I had a mild stroke in July of 2013. My children are grown but my baby just turned 18 and is in college locally so she is till at home and she helps me  alot she is my right hand. If you ever wanna chat I will be checking on her everyday. I am also on facebook. You are more than welcome to contact me on there Im from south carolina

 


Myriam
Posted: Tuesday, June 3, 2014 1:20 AM
Joined: 12/6/2011
Posts: 3326


kayeK, I think I responded about this on another thread. Because it appears you have a genetic form of Alzheimer's, please consider contacting the DIAN study (Dominantly Inherited Alzheimer's Network). You will spend 2 and a half days of testing (full physical examination, PET scan, cognitive testing, DNA testing, etc.). They will pay for your travel expenses, hotel, food, etc. 
alz+
Posted: Tuesday, June 3, 2014 9:08 AM
Joined: 9/12/2013
Posts: 3608


Myriam wrote:
kayeK, I think I responded about this on another thread. Because it appears you have a genetic form of Alzheimer's, please consider contacting the DIAN study (Dominantly Inherited Alzheimer's Network). You will spend 2 and a half days of testing (full physical examination, PET scan, cognitive testing, DNA testing, etc.). They will pay for your travel expenses, hotel, food, etc.  

wow! how did this information come to be delivered on a message board? I have been waiting to be put into new research group as the one I was in before diagnosis closed and the doctor said the ones replacing him would "love to work" with me post diagnosis.

I am going to look into this. THANK YOU for finding these things and helping all of us so often!



Myriam
Posted: Tuesday, June 3, 2014 11:33 AM
Joined: 12/6/2011
Posts: 3326


alz+, apologies, but I forgot your story. Do you have a genetic form of AD, e.g. your mother or father having dementia? Here's the website where you can get info and contact information: 


http://www.dian-info.org/ 


bjrj
Posted: Thursday, September 11, 2014 1:49 PM
Joined: 7/17/2014
Posts: 14


Watching  my Partner learn to accept this was a life lesson.  First couple months it was very hard on him.   With Alzheimer's  meds and anti anxiety meds. He has found a comfortable  place.    Hope it helps
alz+
Posted: Thursday, September 11, 2014 10:21 PM
Joined: 9/12/2013
Posts: 3608


Myriam my Dad and his Mom had ALZ.

 

When people newly diagnosed post here it brings back the memories of those first months.

 

Each of us will change in our own way in our own time but when I came to the boards Iris pointed out STRESS makes memory 50% worse. Lack of sleep takes away more. After reading that I set about doing all I could to eliminate that weird anxiety - the traveler in foreign land effect and put myself to sleep.

 

The regular meds did not work for me, I had side effects so went to Medical Marijuana, juicing every day with coconut oil and using aromatherapy. Once the anxiety was reduced (also went to counselor and was given Zoloft for depression and Ativan which I use in panic situations). Once I found what helped me calm down my life improved. I am better off today than a year ago.

 

When you are diagnosed it seems like all down hill but many people on these boards are doing really good for a long time.

 

Please keep the faith a bit, new help is just around the corner. Until some major break through reduce your anxiety, fear is a creepy state to be in and there is a lot of stuff to help with that.

 

I feel heartbroken for those of you so young. Still, there is help now and more to come, stay with life and be open to better days.


Mimi S.
Posted: Friday, September 12, 2014 8:30 AM
Joined: 11/29/2011
Posts: 7027


For newly diagnosed, a book worth ordering is: Living Your Best With Early-stage Alzheimer's by Lisa Snyder.

 

That and Best Practices, outlined by Iris.


For those who have problems with Aricept. Before you give up the drug because most who take it feel it helps, take it at a different  time of day. For  GI symptoms, I went on a lactose free diet.


Myriam
Posted: Sunday, September 14, 2014 2:54 PM
Joined: 12/6/2011
Posts: 3326


Mimi, last month I had an appointment with my neurologist. I asked her if I should try taking Aricept again (I had terrible GI problems with it when it was first prescribed 5 years ago). She told me that the Exelon Patch is more effective than Aricept.  

 

Here's an excerpt from an article explaining the difference: 

 

Aricept and Razadyne only inhibit AChE, while Exelon targets butyrylcholinesterase (BuChE) as well as AChE. Razadyne also modulates nicotinic receptors. Researchers don’t yet know the full impact that these differences may have, when it comes to the individual patient. 

 

Here's the link: http://www.alzcompend.info/?p=244 

  


Brooke Marie Mae
Posted: Saturday, October 18, 2014 7:39 AM
Joined: 10/18/2014
Posts: 32


hi,  has anyone considered the right to die movement.  I am cconsidering this option before it gets too bad.

Brooke Marie Mae


Iris L.
Posted: Saturday, October 18, 2014 6:56 PM
Joined: 12/15/2011
Posts: 18513


Welcome to our online support group, Brooke.  

 

Most of us are busy living our lives.  We follow Best Practices to help ourselves function better and to prolong the early stages.  The main thing is to make sure any possible risk factors have been addressed by a thorough medical evaluation because there are many dementia mimics.

Can you make a new thread and post some information about yourself?  We want to get to know you.
 

 

Iris L. 


Brooke Marie Mae
Posted: Sunday, October 19, 2014 10:03 PM
Joined: 10/18/2014
Posts: 32


I was diagnosed in August with early onset dementia.  In spite of all the research I have done there are few answers that I want to know especially - how many good years do I have?  One, two, less, more?  I am really struggling in this area.  It makes it so scary.  Have you been able to come to terms with the unknown?
Brooke Marie Mae
Posted: Sunday, October 19, 2014 10:26 PM
Joined: 10/18/2014
Posts: 32


Hi Iris,

I am 60 years old.  I have been and still am a very active person, both physically and to a somewhat lesser degree mentally.  My diagnosis of early onset dementia (alzheimers) was made as a result of a ct scan.  No one can seem to answer the question of how many good or even reasonably good years do I have left.  I am doing everything I can to stay active and healthy but it seems like this disease has its own course that it follows in spite of what a person does.  I am so afraid of being mentally incapacitated.  There is no dignity in becoming less than human and dying as basically a vegetable.  I'm not sure I'm brave enough to walk through this challenge.  

I have read a lot of these postings and read the positive statements made by many people.   I just can't see myself walking down this road to the end.


Myriam
Posted: Sunday, October 19, 2014 11:49 PM
Joined: 12/6/2011
Posts: 3326


Brooke, I was diagnosed 5 years ago and continue to stay in the early stage, I believe because I follow Best Practices. You will find lots of references on this board to Best Practices, which includes: 

-Eating a Mediterranean diet (lots of vegetable, little meat/fish, cooking with olive oil) 

-Strenuous exercise 

-Staying socially active 

-Exercising your brain, but don't stress out 

-Taking meds a directed 

 


Iris L.
Posted: Monday, October 20, 2014 2:32 AM
Joined: 12/15/2011
Posts: 18513


Brooke, I had what would have been called MCI (mild cognitive impairment) if that term had been in existence in 1987.  That was 27 years ago.  The neurologist still does not call this Alzheimer's or even dementia, even though I am have been on the dementia meds for 5 years.

One doctor tried to get me to admit to having dementia.  I fell into a deep depression.  I then decided I was not going to go out like a victim!  I would fight this with everything I've got!  So I got serious with Best Practices, and here I am today!
 


 

No one knows when our time will be up.   Life is full of surprises.  I made a study of the desires of people with terminal illnesses.  What I discovered surprised me.  The terminally ill wanted to spend their remaining time with their loved ones, and they wanted to keep living the lives they had been living. 


 

In real life I discovered this to be true.  I lost my ex-husband last month. He had surgery and expected to recover after his hospitalization.  He was with his family and was in good spirits until he lapsed into a coma.  I posted about this in the "what I learned from my ex-husband's recent passing"  thread. 


 

I focus on the present, and think about the legacy I want to leave behind.  I made up my mind that I would focus on remaining independent for as long as I could, and to live with dignity. 

 

 

The point is, we must all keep living our lives.  Don't give up.  Don't become morose.  Live life until the very end.  This is what I'm going to do. 



 

Don't believe anyone who tells you that you have a certain life expectancy.  No one knows for sure. Take care of yourself, and prepare yourself.  Live the best life you can.  That's all any of us can do. 


 

I have challenges.  I draw on my faith.  I refuse to be defeated! 


 

I draw strength from my fellow members.  Without them, I would be nowhere. 


 

There is treatment that can help us live better.  Make use of that.  Make any changes in your life you need to in order to live better.  Think about the Serenity Prayer.  This is your life.  Live it! 

 

It's not about what faces us, but how we respond to what faces us.  This is how we live our lives.  I truly believe this. 


 

There is hope for us, Brooke.  We can still life a fulfilling life.  Our lives will be different.  And we can meet that challenge.

Iris L.
 


 


 


 



 


Brooke Marie Mae
Posted: Monday, October 20, 2014 5:26 AM
Joined: 10/18/2014
Posts: 32


Iris,

I don't have the luxury of having a MCI diagnosis.  Most areas of my brain show physical signs of shrinkage.  I don't know what that means in terms of longevity.   Meanwhile, I'm not laying down in defeat.  I exercise 2 hours a day, eat healthy, keep my brain active, etc.  I am also on aricept.

To add to the mix I am already onmeds for depression, anxiety and borderline personality disorder.  

 

Meanwhile I am struggling with deprssion and anxiety.  I see my Dr. tomorrow so maybeshe can help with that.  

I am certainly not considering suicide at this point in time.  It is just something I am considering when I start to lose too many of my functions.  


alz+
Posted: Monday, October 20, 2014 6:52 AM
Joined: 9/12/2013
Posts: 3608


 

One goes through the PANIC STAGE. Over the months our thoughts and Lives go along a path of fear/horror or courage/hope. 

 

If your meds are not working as well as before you might need a change. The psychiatrist I saw for many years changed my meds once diagnosed with ALZ and we could see many of my mental health (illness) references were really the result of anxiety from brain malfunction due to dementia. Turns out many medications used for treatment of "mental illness" cause bad reactions in ALZ patients.

  

I found an article from Skunk Farm Research in Oregon on the benefits of cannabis for Alzheimer's. 

  

I live in a legal state although the opening of dispensaries are blocked. If you choose courage and hope towards your future you might look into Medical Marijuana to help with your anxiety...and find you are doing better for a long time. 

  

http://www.thctotalhealthcare.com/the-endocannabinoid-system-a-putative-role-in-neurodegenerative-diseases/ 

  

I found cannabis helped a lot but did not know why until information exploded on web. My husband and I joined a Compassion Club after I got my card and they encouraged growing your own plants. No way I could have done that but we did finally get access to fresh leaves, buds and now oils. 

  

When I joined boards I was reeling and already had suffered a life time of anxiety. Understanding the toxicity of anxiety chemistry (what our bodies produce when we are in a FEAR STATE) I saw reducing fear as my first goal in living my best life. I used simple marijuana daily for that. It gave me time to get my feet on the ground. 

 

You can read posts on web about using cannabis or on these message boards.  

  

People panic given any difficult diagnosis. It might be normal but it was killing me. For those who think MM is a "druggie thing" there are lots of pharmaceuticals to choose from. I have always had a low tolerance for pharmaceuticals and love plant therapies. We are free to choose what works best for us.

  

Those first months after a diagnosis of ALZ sets your course, but even then you can change course if you find that more helpful. The longer you live the more likely you will live to benefit from new treatments or contribute to finding a cure. 

  

I understand. I also think it helpful to remember (!!!) you will have bad days and probably think "OH I lost more abilities!" only to find a couple days later you are doing really well again. Those bad days are not unusual. 

  

When we know we will be kept comfortable we can relax. What more is there for any living being?  



Iris L.
Posted: Monday, October 20, 2014 12:24 PM
Joined: 12/15/2011
Posts: 18513


Brooke, I had a huge problem with constant anxiety.  One of our emeritus members, Alan in Colorado, who was himself a psychologist dealing with AD, used to remind us that anxiety reduces our cognition by HALF.   

 

I knew that the amount of anxiety I was experiencing was interfering with my cognition.  Consultation with professionals, such as psychologist, psychiatrist and social worker was useless because they had nothing beneficial for me.  I finally cured the anxiety on my own.   

 

I cured the anxiety by reading about anxiety and panic on the internet, and doing the exercises suggested by those professionals, and through faith.  The members here helped me through my bad periods.  Right now, I can say I have no anxiety.  I can't say anxiety is gone for good, but I'm feeling pretty good right now.

Iris L.
 


Iris L.
Posted: Monday, October 20, 2014 2:02 PM
Joined: 12/15/2011
Posts: 18513


Brooke, a book that can help you is "An Essential Guide: Living Your Best with Early-Stage Alzheimer's by Lisa Snyder, MSW, LCSW. Look for it at the library.


Iris L.




jvanb
Posted: Tuesday, October 21, 2014 6:54 AM
Joined: 5/26/2014
Posts: 23


Hi Alz+

I really appreciate all of your info about mm.  I have a rhuematologist friend.  She is from another country that really touts natural medicine, and she is limited in what she prescribes here but has shared with me her faith in mm.  She has suggested it to me as a possibility for nerve pain resulting from two neck injuries/surgeries.  I am now really considering it to help with aggitation/anxiety that might result if this is truly a neurodegenerative disorder.  I have been on tons of man-made medications for my entire life and though I truly believe in thier effectiveness, I think there is something to be said for things that are more naturaly healing.  Hard for me when everyone around me is a strong believer in traditional medicine.  

Anyway I think that I am going to visit the local clinic - which is in the nicest town around and does not seem to be associated with those ghetto dispensaries (though I personally understand they aren't all bad).

thanks again for the info


alz+
Posted: Tuesday, October 21, 2014 11:35 PM
Joined: 9/12/2013
Posts: 3608


Ivanb

 

good luck. Let us know what they suggest. Go low and slow!

 

Best to have someone with you when start using MM for actual medicine as you want to find the dose that eliminates or soothes the problem without knocking you into the end zone.

 

I have started coconut oil but after buying 2 jugs of virgin organic cold pressed from Costco I read up on it and find no science behind it. Still giving it a couple weeks.

 

The science behind Cannabis began at least 3000 years ago when it was a fundamental Chinese herbal medicine.

 

I am still writing because of it's help and it is studied all over the world. Good luck to you. I don't want you to suffer needlessly.

 

love and courage