Dear Jenny:

Clearly based on the outpouring of support from others in this community we are all deeply concerned about your well-being.

The feelings you have expressed are both natural and normal for someone coming to terms with news of a dramatic healthcare diagnosis and very personal life-change- and these feelings should be honored; however, once expressed it is vital to process them thoroughly. There are various ways to do this: individual counseling, group/peer support or through utilizing a help-line such as these message boards or the Alzheimer's Association's 24/7 Helpline at 1-800-272-3900 to name a few.

I was struck by two things in particular in your post. You have a "loving husband" and two children- and they are supportive of you. Whereas I can understand the desire to not want them to see you suffer and have to bear the life changes that go allow with Alzheimer's disease, I would caution you to consider the impact it would have on them to NOT be able to return to their wife/mother the care and support that you have undoubtedly provided to them. Trust me, I know what it is like to have a mother who tried several times to take her own life for reasons that were extremely valid. I am eternally grateful that she did not succeed and that I was able to share life- inspite of its frequent difficulties- with her. I imagine the same feelings are shared by your beloved family.

It was not so long ago that a person with a HIV-AIDS diagnosis considered it a death sentance as well. A friend of mine named Scot took his life in 1991 shortly after he learned that he was HIV-positive. At the time there weren't many medications yet available to arrest the progression (though he bore no physical signs of AIDS); yet within a year or two the landscape changed dramatically and today many others who were HIV-positive back then, remain alive today living full, productive lives. The advancement of science changed things dramatically. We are in a similar parallel with Alzheimer's disease today and for that reason as well I embrace hope.

I realize that these are just words, but they- like those in other postings- reflect shared wisdom gained through lives lived and a deep concern for others on this journey. Jenny, please continue to reach out and share your feelings and express your needs.

Your post suggests that you are in New Zealand. Below is information for our sister organization in your country. I hope that they along with us can offer the support you so richly deserve.

New Zealand
Alzheimers New Zealand
Level 3, Adelphi Finance House
15 Courtenay Place
PO Box 3643
Wellington
New Zealand
Tel: +64 4 381 2362
Helpline: 0800 004 001
Fax: +64 4 381 2365
Email: nationaloffice@alzheimers.org.nz
Web: www.alzheimers.org.nz

Sincerely,
David P., Administrator
Alzheimer's Association, Contact Center

Thank you all for your support. When I was 40 I got a grade 3 breast cancer. I thought I could beat it and I did. This desease has change my relationship with my husband. He has to write a list each day of thing to do. He is a wonderfrul care giver but I am not his wife anymore. I cant walk in a mall without getting lost. I walk my dog and she can bring me home.I cant drive and like many of you cant do maths or write. It took 4 years to be told that I have AD and the only drugs I am on are for my headachs which I get 3 days out of 7 days. I have done all the physcometric (cant spell) and the neurologist said drugs wont help. I lost my job because I forgot to go to meetings and when I went could'nt remeber what was said. I have help write legislation and have worked at a very high level within goverment and the privit sector. l I nearly burnt the house down the other day as I for got to check the oven. I ended up in hospital last night as I inhailed and chocked on my tablet.

To get Rualoacacob would cost around 80,000 nz dollars. But becaused I am too far gone it wont help anyway.

My friend said not to worry about this stuff as very soon I won't remember it anyway. Not sure if she is my friend.

NZ is very small oonly 4 milion people and I havent been able to find anyone else who is my age with the bug.

I have known 3 weeks and I am so far along the path. We have been intouch with the AD person here. so will see what happens. They have advised that we change doctors. hopefully the new doctor will be helpful. My specialist said go home and enjoy your life. What a stupid thing to say. It easy to write on this message board because I am faceless and you all are onthe same journey. You cant see my tears as I write.

I will be fine.
hugs to all of you out there

Jenny

Hi Jenny, thanks for joining our community. While I'm sure you could find a few people your age with AD in NZ, there are bunches here online right now. I probably started showing symptoms when I was 50, maybe younger. Now almost 54. I've known for roughly 2 years, around that I think. Or maybe one and a half.

You could say that depression is anger turned inwards. I think it's just as valid to say that anger is fear turned outwards. When we're overwhelmed, we often flip the problem around.

I'm so sorry that you've contemplated suicide, but I can't see suicide not crossing the mind of anyone who gets a devastating diagnosis like Alzheimer's. The thing to do is, when Suicide comes into your mind, is smack it hard in the face, tell it to sit down and shut up. It has nothing new for us, because it's given up. OK fine, a small part of us has given up. But there's so much more to us!!

I'll bet the person who said, "Don't worry, you'll get worse," is your friend, she just doesn't know how to be your friend right now. Have a chat or two with her, about what you need in a friend right now.

Oh Jenny,
I'm so glad to hear you are doing ok. I know about the tears, Jenny. They often flow as I read and write here.
Alan has given you some great advice, I hope you can do what he suggests.
You said you are married and have 2 children? What are their ages? I have only one daughter who turned 30. Actually, she'll be 31 in June!
Wow, I really am getting old!
Please, speak with your husband and your friends. Sometimes they don't get it at first but they will.
I hope you have great success with your new doctor.

Please, let us know how things go.

If you have the time, please tell me about New Zealand too.

Hello Jenny! It is great to hear that you are safe. I started a new discussion just for you in the "Alzheimer's under 65" forum. There were a lot of people worried about you girl!

Wow, Jenny, you beat breast cancer! Not too long ago a diagnosis of any cancer meant get your affairs in order. Now cancer is cured in many cases. David P mentioned HIV/AIDS, which meant a slow, wasting away and death just a short time ago. Now people are living with AIDS. The same for lupus, which I have. Lupus has gone from being terminal to chronic.

All of us are going through major changes in all aspects of our lives. We're here for each other. We understand what you're going through abecause we're going through the same things. You don't have to hold back because we understand. Please stay with us, Jenny. We'll see you again on the "under 65" board.

Iris L.

To ALL the Newbies,
Hello and Welcome to the AD Message Boards, "Alzheimer's under 65" forum. I am sorry for what brings you here but I am very glad you've found us.

If any of you has any immediate concerns/problems please call our AD Helpline @ 800-272-3900. There are professionals there 24/7 to assist you.

This is the welcome site. Please, read on. Feel free to add on to a current thread or start a new one by pressing the purple box at the top of the page "Start a new discussion."

This is a great place to vent feelings, gather information and get a lot of support from some terrific people.

You are NOT alone. We are here for you.

Hi Jenny, hope to hear from you soon!

Hey Iris, this is A J. I'll try to be on Chat Room 3 April 28, 2009 at 6:00 p.m. your time. Hope to talk with you then.

Hi AJ
I was wondering how to get into a chat room. Can you help me. It is 1.40am nz time so I don't know what time it is your time.
Hugs Jenny

hi Jenny, just go back one page and look at the top. click on chat. selsct room that has visiters and then you can chat

Hey Jenny, good to hear from you! To get on the Chat Room, just do as Laura said. I would love to correspond with you. My E-mail is aj@eamil.toast.net, please send me an E-mail, you know you can't have too many friends Jenny.

OH, you ask what my time zone is, I am on Central Time, I live in Oklahoma in the U.S.

HOpe to hear from you soon!

Love ya

Jenny, you posted your message at 1:40 a.m., it was 8:40 a.m. my time. Hope that helps you with the time difference.

Dear Jenny, AJ, and others:
5 pm Wednesday in Los Angeles

12 noon Thursday in Auckland NZ

7 pm Wednesday in Oklahoma

Let's meet in chat room 4.
I'll be there at 5 pm Wednesday
AJ, come at 7pm Wednesday
Jenny, come at noon on Thursday

That's enough planning for now!

Iris L.

Hi to All the Newbies,

Welcome to our AD Message Boards the "Alzheimer's under 65" forum. I am sorry for what brings you here but I am very glad you've found us.

This is a great place to gather info., vent feelings and get a lot of great support from some really terrific people.

If you have any immediate concerns, please call our AD Helpline @ 800-272-3900. There is someone there 24/7 to assist you.

Also, please contact your local chapter of the AD Assn. They have lots of information and can help you.

Welcome, to OUR FAMILY.

You are NOT alone.

We are here for YOU.

Please, come here often and tell us who you are and how you are doing.

wow, i havent a clue what to say. i have known for some time things were not right. i noticed alot of thing happening that i couldnt remeber, be right in mid sentance and have to ask"what was we talking about". as my user name says i am a dj for a radio station. i feel like hiding under my desk. When i miss the quuee or be talking on a live mic (live on the air) and forget what i was saying. i just want to run away. sorry i get side tracked easy. i turned 47 may 25 and then today my doctor told me the news that changed my life in seconds. me and my doctor just sit there both of us crying. she said that it was stage 4. whatever that means. i didnt hear much after that. i just feel numb on the outside and fear, anger, sad, denial, i wonder what i did to bad that god is so angery with me.
Im div'ed and medialy retired from the air force now (heartatck). I used to be able to write reports in detail with no notes just me and my brain.. I was a OSI Agent, i worked naco's for 13 years. I was able to recall almost every detail of a conv and now i cant remeber where i parked my car.

I dont understand any of this. what the doctor said to how this chat works. its very hard for me to find my way around it. im not real sure im in the right place.

I have a roomate she is a wonderful person, so kind and helpful. i read almost all the post's here and im not sure what to think. i have to say and i hope i dont offend anyone. it is very frighting stuff. i am not sure i want or can put my friend thur all that. i have had to call her on the cell phone becuase i got lost drving to pick up her son from school.. 5 min trip turned into a hour long trip and only found my way home when a police officer stoped to see what was wrong. that was one of the worse minutes of my life. to be siting along side a country road crying like a child telling a police officer i was lost.

im sorry i turned a simple msg into a book. i sure would like to chat with some one that help me understand what has and will happen. i think i will be having some very diffaclt dessions ahead and a little input would be great. thank you for leting me vent.

DJ Sarg

Hi! I too was diagnosed and shocked! Although Alzheimer's runs in my family. I know what you mean by getting lost, not remembering conversations, what you were talking about and mostly, crying......

Everyone on these threads are here for you, we've all been there in our own ways, but yet, they're very much alike. So, we all can relate.

There are two books you need to look for: The Alzheimer's Action Plan", by Doctors: P Murali Doraiswamy, MD and Lisa P Gwyther, MSW. This book has been very educational for me. The next book will be "Still Alice" by her granddaughter, Lisa Genova. I promise you, it will be so surreal, emotionally moving, but mostly, you'll be able to relate to what Alice goes through. She sounds much like you, an intelligent woman who has all going for her.

Expect to go thru grieving, anger and numbness!
I promise one thing it will never change. You will have days of acceptance, denial and anger. You will start looking at yourself from within and wonder what to do next.

Again, read these threads, these people are friends and family who are all experiencing the same thing, Alzheimer's. Young or old, it doesn't discriminate.

Thank god for spell check. Now if I could get my punctuation correct! Anyways, if you don't have a GPS system, you might want to think about getting one. I've been completely dumbfounded on roads I have driven for years. I have and do very easily get lost. If it wasn't for my GPS, I'd probably wouldn't find my way home!

Try to feel better about the new you. You'll find out what works best for you. I do hope you have a support system, family. Thank god for family. You will find many blessings that others can & will do for you, I did!

We'll talk with you soon
M

thank you so much Mary for your help. i live with a friend and her son (just roomates) i have no family to speak of. But they are like family to me. i woke uo today and just sit there woundering what today would be like. i hate not being ib contol, now im anything but in contol. I feel kind of helpless in this. Yesterday i was so moody.. cry on minute and smiling the next. i have a great love for music. it is all i have now after i retired, i dont want to lose that. the doctor said i should start a log where i can say what is on my mind how i feel about special times and ppl with photes if possible. i dont understand why but i will. someone here told me it would be a great thing for me and my family. who would want to read something like that. no matter i will. wow here i go again trying to say a few things and turn it in to a darn book. sorry if this is to long please tell me so i know the rules on that. Bless you all! Rock On!

Dear DJ Sarg,
Hello and Welcome to the AD Message Boards. I'm sorry for what brings you here but I am very glad you've found us.
If you need someone to talk with someone immediately, please call the AD Helpline @ 800-272-3900. There are professionals there 24/7 to assist you.
I'm so sorry for your diagnosis but I'm glad you have a room mate to share time and speak with.

You may want to call your local AD Assn for help and support.

I love Music too. In fact, I started a thread called "let's talk about Music." Please, go there and add your thoughts.

We are here for you. I know it is very frightening, maddening to be diagnosed with Alzheimer's disease but you are NOT alone.

Please, come here often to vent feelings and get a lot of support from some really terrific people.

If you want, you can "Start a New Thread" by going to the top of this screen and hitting the purple box called "Start a New discussion" and enter a title and start posting or asking questions.

Hang in there~!

thank you Lisa your very kind. I dont know why but i had a GREAT day. I woke at 3am and hit the floor running and still going strong. I would say i didnt think about all this but that would be a lie. I fell today when i had a sizour. Not to bad just cut my head (no bigy its empty anyhow) Thats kind of a inside joke at the station, lol. I retired from the Air Force, i was a OSI agent (its a fed agent but for the department of the Air Force)grrrrrrrrrrrr i cant remember what i was going to say. i hate that! Okies me and Jenn went for a very long walk, went to a outdoor movie at the park . It was real fun and free, lol (i love free). Sorry i still cant remeber what i was going to say. so i'll close and just wish you all well. Take Care and Stay Safe.

Dear DJSarg,
I'm so sorry to hear about your seizure! Are you on meds for it? Do you remember to take your meds? I reason I ask is because many of us (including myself) have forgotten to take our meds!
We have had to have a back-up or reminder system to help us! Do you have someone or something to remind you to take your meds??? This is VERY important, especially for safety reasons!

I'm very glad to hear you had a GREAT day! That's wonderful news.

Please, keep in touch. Let us know how you are doing!

Good Morning Everyone. Hope everyone is well today. When it rains it pours doesnt.i just cant read anymore about this stuff. The more i read the more i just want to give up and im just getting started.

I dj for a radio station, saturday that i always do a 3 hour set. I love music its all i have left anymore. I think im about to lose that to. I was doing my set yesterday and yet again im on a live mic (talking on the air) and i 4 got what i was talking about. I wanted to run away from it all. Then i left my mic open for over 5 mins and didnt know. You know people can be very cruel some times. i seen it but it was to late. Of cource the lights started flashing, the phone was ringing. ppl were making requests i got so darn confused i just sit there, just sat there lost in my own little world. Bottom line is the station owner has taken me off the sch now. I guess i cant blain her my count droped ppl just tuned in to a diff station.

I just started the long road of this and wow i just lost the thing i loved the most. I just dont feel anything just feel like given up already. I will miss my sunday sets with my Guss (DJ^Tony), that was the best sets i loved. Not to blow my own horn but our three hour set on sunday was the most poplural sets of the whole week and the funest.

One of the dj's i trained and setup is also a nurse. I cant belive what she sugested yesterday, i think i just meet the new dr death. Just when you think you know some one wow. Well heck looks like i will get to see all my fav news shows today.

Oh sorry i have to shair this. A band that was just tryn to get a break when i started playing thier music tryn to help them out called me yesterday told me they were sending me thier newest CD (not released to anyone yet). They will be playing at the White House today on the west lawn. It killed me when Paul asked me to come to DC and see the show, and i had to say no. What a honor that would have been. Take Care And Stay Safe. The Sarg

Dear DJSarg,
I'm so sorry for your losses! Unfortunately, you are not alone in your losses. We've ALL been there. I know that doesn't make you feel better but just wanted to let you know you are NOT alone.

I'm not sure what you were saying about your nurse DJ friend but I'm sorry for that too.

Hang in there.

We are here for you.

Hiya everyone. Hope all is well with everyone today. I started to write things down about my life and thoughts aech day. Its not easy i see. This is going to be very hard, there are just some things i dont want to remeber but i just try to remeber that it isnt all about me its about my friends and what family i have. Who know maybe one day it might help some one though a day known they are not alone, others have been there before them.


Is there anyone who has time to help me or tell me how to make a space online to let others come is how things are going? I dont know the name it is called but Lisa i think it was yours i went to read. Anyhow if anyone would like to help me get it started i think i can work on it.

P.S. The band that asked me to the White House to see them play sent me a live feed both video and audio. The station played it live on the air. That was so very special for me. I remember when they 1st started out, no one had ever heard of them, i was lucky and they found out station online and sent me s demo of them. I wasnt to crazy about thier music i thought they wouldnt go anywhere with that type of music. They are extrmly deadactited to the right to freedom all over the world so some of thier music is banned in a few contries for that reason. But anyhow i stated playing one or two of thier tunes on the air a few times a week. People started to ask who are those guys and i sent out the music to other dj's and now look at them. They made it all the way to the white House. Im not with the band just some one who was able to see them grow up to what they are today. So it was a very special thing for them to do just for me.

I have to go now im posta wake Jenn up when i get up from now on. I left the other day to take a walk and ended up on the hwy walking to see my gram i just knew gram would know how to fix everything. I got about maybe 10 miles down the hwy before Jenn called the cell and ask where i was. I dont remeber alot of it but jenn told me i said i was going to see my gram. The only problem with that is Gram died years ago. You sure couldnt have make me believe that on that day.

Well if anyone is willing and has time to please help me start a web page on line that i can i think its call blog hick i dont know. my email addy is djsarg@yahoo.com btw my name is Mike. Take Care and Stay Safe. Much love, sarg

Hi'
This is my first post. I am 52 years old and a little freaked out by what I have read about EOAD. My dad had EOAD. Is it fair to say my risk is 50/50? Some internet sites say the vast majority of EOAD is eFAD with the known genetic components (PSEN1,2,APP, etc) others say only a very small percent are genetic with the majority of EOAD being sporadic. What is the current thinking on this? How can their be so much disparity in thought? My father was a little older than me when he developed Alzheimer's. He died in 1978 at 64 years old. He was from Switzerland and I don't know much about his family. I know his mother died at 68 years old in a mental hospital in 1949. I was told she was psychotic rather then suffering from dementia.

My father never had an autopsy, but he could not have had vascular dementia. From what I read, they have a shuffling walk. My dad wondered but never shuffled.

Also, what is the current scientific thinking on new treatments for AD in clinical trials? Is it assumed that they will be helpful for EOAD, or is this a very different version of AD that is caused by something else?

Hi Jeff, welcome, and thanks for joining in the discussion! I just turned 54 this week, and I've been diagnosed about 2 years.

Lots of great questions, but as you're learning, no easy answers. Early Onset, I gather, is about 50% genetics, and 50% not inherited. Arguments can be made that perhaps our genes give us the potential to develop AD, but that environmental circumstances & personal choices can slow or speed up the AD development. The PSEN1 gene means early Alzheimer's for all who have it, and it's passed on to half of one's children.

As for your grandmom not having AD because she had psychosis, that may not be correct. Lots of us develop some degree of hallucinations, including me. It just depends on what the disease wants to eat, and everyone is different.

Also, it's possible for someone to have vascular dementia and not shuffle. True that it's a likely thing, but it isn't inevitable.

Isn't this frustrating? Perhaps at this point you just want to know what the deal is, no more shooting the breeze. Not gonna happen, not from anyone who knows what they're talking about.

New medicines are, so far, a big disappointment. There are serious problems with using mice, as they don't naturally develop AD. Regarding medications and type of AD, I haven't noticed that it matters. It appears to be important to differentiate AD from Frontal Lobe illness, as medicines affect them differently.

Keep asking questions, keep telling us about yourself, and it'll get better. Nothing is as frightening as the unknown.

Hi all

I truly believe, we must get the National Alzheimer's Association to help us be more vocal on a state and national level. A few weeks ago (?), we were all talking about getting an Alz representative, a celebrity.

These days, I have made specific changes in my life. Some, life altering, others are changes to prepare myself for my demise. No, I no longer keep a journal. My journal is here on these boards. My energies are low right now. Again, I'm not sleeping. I'm sundowning more. My vocabulary is shot. And I shake like I'm Katherine Hepburn (I truly loved her as an actress)! I have more difficulties going up stairs as opposed to down. I run myself ragged going back and forth to different rooms, only to find myself doing it again becuase, I can't remember why I went in there to begin with.

I have a new neurologist who tells me that Calazapan (for the shakes) is bad for my brain. Also so are anti-depressants. If there so bad, why was I put on them?

I really used to enjoy cottage cheese. Cheese of any sort, in general. Now, I can't even taste it! I've gained over 40 lbs., due to depression, frustration and mostly, because the people who run our country won't listen. I don't want to die! I want to see my grandchildren grow up. I want to see my daughter graduate from college. I want "peace".
I want a damn cure for this monster! I want to be cognizant when Christmas in the future(s) are here.

We all hurt. We all love. Most importantly, and unfortunately, we're all alike.

Everybody try to sleep well. Eat, nourish your bodies and keep on using your brain along with your fingers for these threads. We must prolong our bodies/voice to get positive action for our children and their children. But, right now, for us.

Mary

Mary, I so loved your comments about cheese, that "now I can't even taste that!" I so know that feeling. It's like, we absorb all this horrible information about our disease, we figure out what's coming and how we can fight it, but then it's the little things that get us. I've lost like 90% of my sense of smell, which is supposedly why I can't taste very much. Except sweets, of course!

I hate the way I am during what I'm calling sundowning, I hate that mean, demented fool. So far, my vocabulary is hanging around, but I am having far more problems with spelling. My Mac is way too busy pointing out my errors!

What's your other disorder? I have a general problem with most of my nervous system, a fairly pervasive peripheral neuropathy. I hate going downstairs more, how about that?

So, you're like Katherine Hepburn? Not bad company. What was her condition, do you know?

Thanks Alan. Do you think that you have EOAD or eFAD? Did you have a parent with EOAD?

I just wonder how often this is sporadic and how often it is familial (ie, autosomal dominant).

Jeff, it's harder than you would think to know my family history. Between early deaths and emotional feuds and how little is known about my ancestors before my grandparents' age, it's really hard to know.

I've found that knowing my exact diagnosis doesn't matter to anyone but me, and I'm caring a lot less. Doctors have very few medications to try, and those meds generally help very little anyway. I.e., diagnosis has little to do with treatment.

I'd want genetic testing if I were younger and thinking about having kids. Otherwise, it really doesn't matter that much, other than curiosity. Or do you have a need I haven't thought of? Not that there's anything wrong with wanting to know!

This hits home. I had a friend around the same time in the same situation. He was HIV+ at a time when the shame of having the virus was starting to fade but a treatment was now quite there. Then Dr. David Ho invented the drug coctail that raised many people from their death beds like Lazareth. He missed the cocktail by months before he took his life.

quote:

Originally posted by David P.:
Dear Jenny:

Clearly based on the outpouring of support from others in this community we are all deeply concerned about your well-being.

The feelings you have expressed are both natural and normal for someone coming to terms with news of a dramatic healthcare diagnosis and very personal life-change- and these feelings should be honored; however, once expressed it is vital to process them thoroughly. There are various ways to do this: individual counseling, group/peer support or through utilizing a help-line such as these message boards or the Alzheimer's Association's 24/7 Helpline at 1-800-272-3900 to name a few.

I was struck by two things in particular in your post. You have a "loving husband" and two children- and they are supportive of you. Whereas I can understand the desire to not want them to see you suffer and have to bear the life changes that go allow with Alzheimer's disease, I would caution you to consider the impact it would have on them to NOT be able to return to their wife/mother the care and support that you have undoubtedly provided to them. Trust me, I know what it is like to have a mother who tried several times to take her own life for reasons that were extremely valid. I am eternally grateful that she did not succeed and that I was able to share life- inspite of its frequent difficulties- with her. I imagine the same feelings are shared by your beloved family.

It was not so long ago that a person with a HIV-AIDS diagnosis considered it a death sentance as well. A friend of mine named Scot took his life in 1991 shortly after he learned that he was HIV-positive. At the time there weren't many medications yet available to arrest the progression (though he bore no physical signs of AIDS); yet within a year or two the landscape changed dramatically and today many others who were HIV-positive back then, remain alive today living full, productive lives. The advancement of science changed things dramatically. We are in a similar parallel with Alzheimer's disease today and for that reason as well I embrace hope.

I realize that these are just words, but they- like those in other postings- reflect shared wisdom gained through lives lived and a deep concern for others on this journey. Jenny, please continue to reach out and share your feelings and express your needs.

Your post suggests that you are in New Zealand. Below is information for our sister organization in your country. I hope that they along with us can offer the support you so richly deserve.

New Zealand
Alzheimers New Zealand
Level 3, Adelphi Finance House
15 Courtenay Place
PO Box 3643
Wellington
New Zealand
Tel: +64 4 381 2362
Helpline: 0800 004 001
Fax: +64 4 381 2365
Email: nationaloffice@alzheimers.org.nz
Web: www.alzheimers.org.nz

Sincerely,
David P., Administrator
Alzheimer's Association, Contact Center

It might be a good idea to have a board for people with EOAD that are involved in clinical trials. They could relate their experiences. It would take a little of the fear out of me to see some hope in science. I find myself looking for a silver lining in case I get what my father and perhaps his mother had. My dad's mother lived to 68 years old, so she was kind of between LOAD and EOAD.

There is Dimebon, Rembr, and Bapi by Elan.

Dear Jeff in Seattle,
Hello and Welcome to the AD Message Boards. This is a great place to vent feelings, gather info., and get a lot of support from some really terrific people.
You may want to contact your local AD Assn for help/guidance. Go to the bottom of this page and click on "Chapters." That will get you to your local Assn.
You should probably "Start a New Thread" about your questions. Go to the top of this page. In the purple box click on "Start a New Discussion", label your topic and start typing!!

Again, welcome.

Please, come here often as you want or need to. We are here. You are NOT alone.

Mary,
You sound really down! I know you've had to make some difficult choices and move. I know this disease is an emotional roller coaster. I'm sorry you're having more problems.

How can I help??

Do you like/trust this new neurologist? Does he/she specialize in AD/Dementia??
What about seeing a therapist??

Please, let me know if I can help!!

Thinking of you!!!!!!

Lisa

There's soo much in the air. I try to stay upbeat, but too many changes at once. At times, i can "go wit the flow" other times I feel "completely out of place"

So far I like the new Neuro. He works out of Duke hospital also, so, I guess that says something?

Anyways, enough about me. How are you holding up? Are you over the bronchitis yet? Are you getting relief in caring for your mom? It's important that you have "you" time also!

I read your blog. I enjoyed it. You have poured your heart and soul into each word. It's very much felt as a reader!

I'm still sundowning. Frankly, I thought I was doing better. But, the monster makes the decisions when we're down!

I wish we all could physically meet someplace. It would be nice to connect with the "family" on these threads and know that we don't have to hide our blunders. That we're all accepted as is.

Lisa, I'm still trying, or at least on the good days. I'll tell you one thing, my mind thinks of words to say, but, my fingers type something else?

Luv to you
M

Hi to All,

Welcome to the AD Message Boards "Alzheimer's Under 65" forum!
I am sorry for what brings you here but I'm very glad you've found us.

This is a great place to gather information, ask questions, vent feelings and get a lot of support from some really terrific people.

If you need immediate assistance, please call the 24/7 AD Helpline @ 800-272-3900.

Welcome to OUR family. You are NOT alone. We are here!!

hi ya lisa been awhile.. been a little busy here. i went campimg and f ishing with by bests friend ever lol he is my guss, inside joke. we used to have a 3 hour set on a radio station.any how went camping all in one peice, came back in a police car. with a broken right arm, torn musl in right leg, no movement on leftside. but i did get a few nice bass, woohooo and they were great. i went from a friend in thir rv played cards and headed back to my camp site. i got lost ended up by the damn on the ground. just brused a little and brone right arm. that was the first night. the second night got up in the night was cold, i couldent get the camp fire going so i thought i could warm up in the car. that was the 1st mistake. (i didnt have a car). i went looking for it. stop at a house to get help. i guess the dogs ran after me. (most of this i dont rember between the peple around, ie police . thats what happened. so when they did find me a basserby seen me sittind alond side the road. i had walked from the camp to the next city over. about 8 miles. no id, no phome list nothen. there was a good move on at the er. im sorry if i dont laugh i just cry again. ok they find my friend and tha t on is over now. on the way home, cut our trrip shourt. i wanted to go to the farmers martit. yep off i go to see my gram again (s he passed years ago). they found me yet again, not s o well this time on the ground, had been robed and had a stroke. ok the end. i guess all that realy matters is i am still here! went to the doctor today. asked for some kind of cna or something to come here. lol. ok to have a nurse come here my part would be more the get a week in funds. so a home, omg hold on. nothing f or me to pa y till day 30. then 130.00 a day for me to pay. so so on.. i just cant prosses this all. i guess it would be cheeper to get me a nice box and look for a place to camp. i serv my counry in the air force and now look is this realy how we are repaid? what happened to all the mony i paid to hope i would some day be there if something happed. i lose my fath a little more everyday i sit here wounding what is next.

i so want to thank the hot line she was so there so kind i felt like i had just made a friend. i wish i could rememer her name. i rememer she was in indpls. not just one time today but to times. i had no way to remeber the numbers or write it down, no left arm movement, broken right arm, she not only looked up the number and conected to them. YOU ROCK HOTLINE (that a good thing, lol i used to dj. but i sure ty all.

i'll just try to keep on keeping on. u cant live in the pass you cant say in the samewda so why worry about them, the furture is whats i call the big pitchur, it never go in the passed never right here and right now (put the passed in the passed. i mean that in a good way i hope ya all understand what i was tryn to say.

sorry i ramble on somewtime, and omg this took 4ever to type. but it was worth seond.

signed DJ^Sarg rock on !

Dear DJ Sarg,

Wow, what a nightmare! I'm so sorry for all that has happened to you. Aren't you entitled to VA benefits???
I'm glad you were able to speak with someone on the AD Helpline. They are great!!

DJ, have you called your local AD Assn yet? Perhaps they can help you?! Go to the bottom of this page and click on "Chapters" to find your local AD Assn!

I'm glad to hear you're doing OK but it sounds like you need some serious help! Do you have any friends that can help you get some help??? Please, try to contact your AD Assn. ASAP!! And, what about your VA benefits???? Perhaps your friends can help you make phone calls and do the necessary paperwork!!

Sorry to hear about all these terrible things. DJ, are you currently on any medications for AD??

PLEASE, write back and let me know how you are doing!

Hang in there!!

ty for the reply lisa. i still have a room mate but im starting to question her honesty and the reason she stays here. i dont know if its the alz or just the way it is with her. she has never hurt me but some times she (alot of time), i feel like she hates me. i hate being belittled by her. i hate it when i ask her to move , she tells me to leave but i lease the house and pay the bills. she telling me no one will take me i have to meay problems. i so hate being treat with so much disrespect. even her own son tells her she should treat me like that. i called the hot line yesterday and that so sweet and caring lady looked up the adult and childern protection people and connected me. it rang but i hung up. i mean what would i do if they did come to check things out and not help. that would make it all worse here.

i dont know anymore, im damned if i do and damned if i dont. lol its a no win deal i guess. no ome said like would be fair! yes i do gt va benies but it is in indy im not. its a chore to get to the doctor here no way i could go there all the time. i been there before didnt much care about that place. ppl in the halls laying there just waiting. i tried to get home care from the va waited for ever after filing the paper work only to sent tons more papers to fill out and then wait for ever. i hate this all but ya got to do what ya have to do.

i been calling the va and sending emails but no returned calls or anserd emails. there is a bright side to this all, hey im still here alive and kicking. i'll chrck back later hope all is well with you all. ya keep on keeping on, rock on the sarg

Dear DJ,

Please, call Adult Protection Services Now! They will help you get rid of this room mate and help you get your VA benefits! You need a social worker who knows about all this stuff!

Do you have any other friends that can help??

What about your Local Alzheimer's Assn?? Have you called them??

Hang in there. You have a great attitude!

We're here for you.

ty lisa all ty all. im afraid to call them..if they dont do anything it will only be worse and if she leaves i have to help at all

no worries i will be back.. i may be down but im sure as h*&% ant out!!!! hey im the sarg right lol much love sarg rock on

Dear DJ Sarg,

Please, start a new discussion by going to the top of this page and click on "Start a new discussion." There are many people out there that may be able to help you.

Have you tried your local AD Assn yet? You can locate your local chapter by going to the bottom of this page and click on "Chapters." What about "The council on Aging?"

Please, get some help! I'm worried about you!

lisa i tired to open a new dis over aover i dont understand how to do it. could u maybe tell me step by step.. im sorry i tried. rock on djsarg

Hey dj,

I'm sorry you had problems.

Go to the top of this page.

There is a purple box that says "Start a New Discussion."

Click on that box.

It will be a drop down box so click on that.

Then, the first box is where you type in what you want to talk about or ask questions about (like a title page). Type in your Title there.

Then go below that. It is a larger box/square where you get start typing about whatever you want to say.

Then click on "Post now".

Hope this helps.

Good Luck.

Hi Dsarg/Lisa and all

I've been reading the posts here.

Dsarg, I can tell you from experience what it is like to be mistreated. I am currently living with my brother and sis n law. My husband was leaving me alone up to 14 hrs a day and up to 4x's per week! I would forget to read my notes to take my pm pills or just eat through out the day! That's another story!

He was telling others that I would be dead within 3 years! Also, he was liquidating my checking and savings accounts, so that he could "control" all spending. He once told me that he would "give me a $400 "allowance" (never transpired) "until" my disability kicked in. He told my children that they "had to attend vacation" this year because, I wouldn't remember them by next year!

While living at home with my husband, I was at the stage of "shaking" like Katherine Hepburn, stammering over my words (and that was if I could "find them"), sundowning at least 3-4x's per week and staying up until I'd go down again. This I found was from pure exhaustion, and stress! It's bad enough that my brain's internal clock is breaking down to have the above added to it!

I got "confused" about a street I was driving on (once), he told my neurologist about it and she wanted me to "quit driving". He took my keys and told me he called the insurance company and had me "dropped" from our policy. When I brought this up with my Primary doctor, he blurted out "no, no, I had her put on a part-time driving policy". I called the insurance company, I was told that "nothing had changed on our policy" I was still considered a "driver" on it!

My brother and sis n law have been absolutely the best "angels" sent to me, It's just unbelievable! They're taking me to the Florida Keys, Key West for vacation (2-weeks)! I personally have never been, but, having lived in California for some 20+ years, I look forward to it....I LOVE THE BEACH!

Don't let anybody take advantage of you. My health is better. I no longer stammer. Yes, I still can not "find my words!" Instead of relying on somebody to "remind me" to take my meds, I have set an alarm on my cell phone for 6pm, this indicates that it's meds time!

I have done a turn about! I'm learning my way around here in VA (no GPA system, but, honestly, I have used it from time to time)! I no longer shake like "Katherine Hepburn." But the best news is, I can continue to talk with my children and grandchildren!

First & utmost on my list! FAMILY! I can't live without them! They're my "living" angels!

Kick your "roommate" to the street and, like Lisa stated, get help with social services and the Alzheimer's Association. YOU ARE BEING MISTREATED!

I was diagnosed with the "monster", Aug 29, 2008 at age 49. I am now age 50! I strongly and wholeheartedly believe in the cause against this damn disease! I, like all of us have lost independence. Reading is gone. Maintaining my finances are "out". I can no longer balance a checking account, let alone, understand the denominations of money! But, here's a secret, use a debit card, no money to count in giving and receiving!

Lisa, I'm glad to hear you're doing better! I've experienced "problems" with the Alz Assoc, here in VA. I can not drive 1.5 hrs to "meetings." I'm out of jurisdiction where I live. I am trying to get a group organized here at LOW, but, can't seem to get the editor of the newsletter to get back to me. I understand there are several others that live here also, suffer with the "monster." So, once I get back from FL, I am going to the Fredericksburg location, to get some kind of help to get this up and moving, here, locally. Just think.......a "Memory Cafe" right here!

I went to school with country writer and singer, Kathy Mattea. I understand she will be back home for a concert. She's a strong advocate against "mountaintop removal." West Virginia is "coal country." Anyways, a friend was able to get backstage tickets and she's going to remind Kathy about me. She's going to see what Kathy can do to get me on the Oprah Show! I'm LOL, hysterically. If this happens, and Lisa, you can contest to this...I have a mouth and am NOT AFRAID TO USE IT! So, wish me luck!

Hang in there Dsarg. I can't tell you it's going to get any better, but, at least you'll have one "pain" out of your hair! God knows, the "monster" doesn't discreminate, nor does it care. But, you should!

M

Ty M and Lisa,im working hard on finding some options. The Doctor sent a nurse out yesterday, help is coming soom i hope so any way. WoooHoooo Lisa ty i got that dis open now YOU ALL ROCK! May Be Down But Never OUT!

its all good alan, some times a find that special place i can talk without the fear of my care giver reading my question or what i was looking for help with. she has been reading my posts anyhow which has started even more problems now so i will have to find a new safe place anyhow.

now my compur is locked with a pass word i dont know and a very limited user account on her computer anyhow.

you guys will be missed, i think lisa can fill you in. take care and stay safe.

rock on,

quote:

you guys will be missed, i think lisa can fill you in. take care and stay safe.

DJ? Lisa?? What's going on?

Lisa

What is going on with Alan? Please, email me. I'm very worried and concerned. He's been a "logical rock" for me. I hope all is well with he and his wife.....

He stated in his other post that you would fill us in. FILL US IN PLEASE!!!!!!!
M

Mary, it's ok to ask me, y'know? Your sensitivity is spooky, I actually am in the midst of a whopper of a chest cold, can't lie down to sleep, cough so hard sometimes I worry I'll bring up a piece of lung. Saw my PCP yesterday, regular check-up, he gave me a prescription that isn't strong enough to overwhelm my cough monster yet.

I generally don't talk about my precious wife's issues. I feel protective of her, and wish I could magically make it all better. She's like most cancer patients at this stage: All the big stuff, the surgery and the chemo & radiation treatments. Her current treatment is so easy, she forgets that she's in it. Anyway, cancer patients tend to hit a slump right about now, when the months of harsh chemo and radiation are over, no more multiple doctor visits a week. Now, it's quiet, and the fears start to tiptoe in. Is it really gone? Or, will a future scan find it's rebounded straight into Stage 4, and she's a goner? Stuff like that. She was getting burned so badly - her underarm was charred black and peeling - that they cut her radiation off a week earlier than planned. What if that would have made a critical difference?

So, you see, I haven't been such a logical rock lately. I'm deeply sorry that I've worried you. Mainly I'm just tired and aching, and coughing my lungs out.

Thanks for worrying, you are truly a big-hearted, compassionate woman.