Alzheimer’s Association Online Community
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Alzheimer’s Association Online Community |
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Message Boards Forum Index Alzheimer's or Other Dementias Under Age 65 Welcome to our online community for early-onset Alzheimer’s. Topic Closed|
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Welcome!
Welcome to our online community for early-onset Alzheimer’s. You never expected a diagnosis of Alzheimer’s, let alone at a young age. You may be thinking about how this impacts you, your family, finances, career and relationships. Participate in this forum and share your experience with others who are living with early-onset Alzheimer’s. You are not alone. A recent report, Early Onset Dementia: A National Challenge, a Future Crisis, estimates that 500,000 people in this country are living with early-onset dementia and the number is expected to grow. |
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Yes, there is a growing number of Early Onset Alzheimer's Disease. I am one of them. DX at age 50 in 2004. I follow in my mothers and brothers footsteps. The real tragedy with EOAD is that it can still take so long for a person with symptoms to get a proper diagnosis for the disease. Many Doctor's still do not believe that a person younger than 60 can have Alzheimer's Disease.
My diagnosis was based on a well documented family history of the disease and the advent of some very puzzling occurances in my private and professional life. I thought that I would see signs closer to 55 rather than age 50. It is very important for those of us who have been properly diagnsosed to speak up; and tell our stories so that we can educate others about this disease. Please if you read this, and have questions, please feel free to ask about the effects of Early Onset Alzheimer's Disease on the family and the patient. chuck Chuck Jackson, VPWiD Vocal Person with Dementia balko71@yahoo.com |
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Chuck -- I just read your post. Yes, it is important for those of us to speak up. I've been encouraging people to let media outlets know how appreciative they are for stories on EO Alzheimer's or Alzheimer's in general.
Last Week, The Today Show, ran a piece about Alzheimer's, drugs, treatment, etc. I asked all my friends to email the Today Show and thank them for their coverage. I would encourage everyone to do that as well. This Friday, October 6th, CNN Headline News is going to run a "Healthy Minute" on Alzheimer's and Early On-set. There will be four different segments throughout the month. My family was fortunate to be interviewed and they will have experts on discussing Alzheimer's in general. The last feature is on November 6th and that will discuss getting a diagnosis. The Healthy Minute will air in the 1:00 p.m. hour usually about 8 minutes after the hour. It will run every hour through the 6:00 hour on Friday. Everyone -- Please let CNN/Headline News know that their coverage is important. Kris Bakowski Athens, GA www.creatingmemories.blogspot.com |
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Kris, I am going to copy this and move it to the Caregiver forum also!
Trouble and the Grace to bear it, come in the same package. |
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Greetings,
Iam a Personal Nurse working for Humana Insurance. One of my memebers that I am currently working with lives in very Northern Wisconsin. She does not have access to a computer or support group. She is of course young, 53, and having a very tough time. Is there a support group that would allow her to join telephonically or someone willing to talk with her on the phone? She needs to connect with others going through this process. Please share with me any advice I could then share with her. Thanks you so very much for your time and help. |
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CHuck, I echo your words of speaking out as so many of us have and are continuing to do. I just completed 2 different newspaper interviews that will be running in Novemember. The first is out of New York through a major media newspaper there, this release will cover over 400 newspapers in the U.S. including Canada. The other was for a magazone and small newspaper in Oklahoma. We have to continue the fight until the battle is won.
Tracy Mobley 417-933-2030 Diagnosed age 38, now 44 tiger@centurytel.net Young Hope The Broken Road www.amazon.com Camp Building Bridges http://www.freewebs.com/campbuildingbridges08/ |
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Tracy -- I talked with that reporter from New York as well. The other CNN Headline News feature that my family and I did will be running on November 6th.
Kris B. www.creatingmemories.blogspot.com Kris Bakowski Athens, GA www.creatingmemories.blogspot.com |
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Chuck,
Do you mind sharing with me the "symptoms" you had before being diagnosed with EOAD? My mother is 58 and is in Stage 5, and I'm 40. I'm worried about myself and my sister, not to mention my children. Thanks!
For I the Lord thy God will hold thy right hand, saying unto thee; Fear not, I will help thee. Isaiah 41:13 |
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Hello, My husband was diagnosed 6 years ago with early-onset AD. He's managed to maintain an optimistic attitude, but is sadly declining. We've used numerous modalities including the prescribed drugs, acupuncture, and many nutritional supplements, and most importantly, he maintains strong spiritual beliefs. I'm writing a book called "One Foot in Heaven: How Having a Spiritual Connection Helps Six Families Cope with Alzheimer's Disease" and I'm looking for people who are interested in contributing. I'd like to have the major religions represented, and/or spiritual practices such as meditation, yoga, etc.
If you are interested in considering this, please e-mail or call me at 303-447-8300 (I'll call you right back so you're not charged for the phone call.) I can also send you a brief outline of the book. "One Foot in Heaven" is meant to be a cathartic experience for the contributing families, and as a spiritual how-to for others trying to deal with the devasting effects of Alzheimer's. There is also the possibility of it being made into a TV special (my son is a TV producer in LA). Many thanks---and blessings, Barbra Cohn healthwriter1@gmail.com 303-447-8300 Barbra Cohn healthwriter1@gmail.com Boulder, CO |
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Nicola, Thanks for your concern for your E.O.A.D. patient. I also have E.O.A.D. and am involved in advocacyfor A.D.. I would be more than glad to speak to your patient by phone, Please e-mail me direct and we can exchange numbers or discuss the matter further. We are all in this together. Thank you Charley Schneider charley3rd@yahoo.com
Charley Schneider Charley3rd@yahoo.com St.Louis Mo. |
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Hi Nicola, my name is Tracy and I too have EOAD, I live here in the Midwest, the same as Charley, he is a great guy by the way. I would be happy to also talk to your patient. I think the more individuals she could talk to the better she may feel to know that she is not alone in this.
Here is my e-mail: tiger@todays-tech.com and if you or she will send me her number, I would be happy to talk to her as well. Tracy Mobley 417-933-2030 Diagnosed age 38, now 44 tiger@centurytel.net Young Hope The Broken Road www.amazon.com Camp Building Bridges http://www.freewebs.com/campbuildingbridges08/ |
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Hello Everyone,
Im not sure if i should be on this board, as i come from Yorkshire England. I would just like to introduce myself, my name is Debbie and i am an assistant manager of a Day Centre run by the Alzheimers Society for early onset dementia. We specialise in early onset, and have a varied range of Dementia type illnesses as well as Alzheimers. If i can be of any help to anyone re advice ect i am willing to do so. I cannot comment on your laws and policies, but may be able to help in other ways. Thankyou for taking the time to read my post. Debbie |
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Hello, I am writing for my husband as the screen bothers his epilepcy. He was dx 1.5 years ago when he was 51 his father died of it. He has been on Aricept and Namenda in the past month he has had strange dreams. So doc feels the aricept may not be working well, so changing it to another drug. Has anyone here had this problem?
flowers and cooking are my passion |
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Nae -- when I was on Aricept I had really bad dreams as well. I also had really bad cramps in my legs and feet. My doctor switched me to Exelon and Namenda and I have not had the problem. Good luck to you.
Kris B. www.creatingmemories.blogspot.com Kris Bakowski Athens, GA www.creatingmemories.blogspot.com |
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Nicola:
We also reside in northern wisconsin and I am having ome problems in finding someone for my wife to discuss her feeling with other than me. As a provider we do not always understand the feeling that our loved one is having. We live in Crandon Wisconsin. We are looking for some support for my wife as well as a support group for myself. Drop me an E and maybe we can help each other |
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diana j, love my husband,Jesus and horses too. Virginia |
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Hi everyone my name is Cheri and my mom has early-onset. She is 62 and her doctor asked us to think back to kind of see how far back it. We think it started almost 10 years first it was losing keys misplacing things. But now it is pretty bad the meds are not working. My dad works everyday and me and my sister take care of her. We have to give her a bath give her meds. She is no longer able to most everything she could. She is at the point now that me and sister say it used to be month to month then week to week then day to day but it seems like right now it is hour to hour. Every day we see her lose a little bit more of herself. I have been putting family pictures together and just to look at her hands from before her nails were done and nail polished to now not knowing what her nails are. Her hair and make-up always done to now she does not know how to do her hair and she tries make-up and we let her try. Watching her give our kids a bath to now we give her one. My heart hurts everyday knowing this is not how she wanted to live. Not knowing how much more time we have with her. Christmas was very hard for my whole family knowing this was the last one not she will die but her mind will. Well thank you very much for reading my e-mail and for giving up some of your time for me. Cheri
Best of luck, Cheri cheril1@aol.com |
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Dear Cheri: I just finished reading your tender email about your mother and the tears are still running down my face. See I am 61 and my mom is 93 and she has Alzheimers. You and your sister and dad are very loving and wonderful people. I would love to email more and learn more about how your mom is doing. If you would like that, please email me at: mazol1@yahoo.com.
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I would like everyone to know that I will continue to fight for this devastating disease to get the funding and to spread the word so this disease is more recognized and there is more help for people with this horrible disease. I have not posted for a while, my husband passed away this last tuesday, from Picks or advanced Alzheimers determined by a PET and MRI Scan done in August,06.
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Dear Candy S.: I am so sorry for your loss. This is a terible desease and it takes its toll on everyone. If you don't mind, please tell me what "Picks" is. I have never heard of that before. Elaine S.
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I am so very sorry for your loss. My husband has EOSA and I am sorry for the death that occured before you lost him too. Nae
flowers and cooking are my passion |
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Picks disease is a dementia that I tell people is a sister of Alzheimers only it seems to attack younger people and is very aggressive. With my husband, it was like he had ADHD, he was very hyper, he would hoard things, would not like to get cleaned up, didn't care about your feelings at all anymore, couldn't get him to be motivated to do anything in life anymore, and he became mute. My husband was still walking, and was continent when he passed away. He didn't get lost or wander away from the house. What took my husband it that he brainstem was affected, because Picks attacks the frontal and temporal lobes of the brain, but his moved down into the brainstem area and at the end he had also developed Bells Palsy, where one side of his face drooped. As I have researched and have been in the Yahoo Picks' chat room I think my husband started behavioral signs about three years ago, like depression and obsessive compulsive behaviors. At first with Picks he acted like it was OCD, then depression and a year ago he couldn't remember on his job if he ordered stuff or not so he had to leave work. Picks seems to affect people under sixty but in the chat room there is alot of older people who have it also. I recommended that if anyone wanted to make a donation at the funeral home to make it to the Alzheimer's Association because this organization know alot about all the stages and how to get help for us.
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To Candy S., Thanks for the info on Picks. Since I had never heard of it before your email helped. Elaine S., Las Vegas
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I was diagnosed with early-onset Alzheimer's in Sept 2003 and was immediately placed on disability (thank goodness I'd signed up for long-term disability!). I've been taking Aricept & Namenda with excellent results, as far as my mind goes. However, I've had a lot of tummy problems (Diarrhea) that I assume is from Aricept since my diagnosing doc was concerned about it at that time. I've since moved, and I plan on asking my current neurologist if there are new meds that are as good as Aricept that wouldn't upset my tummy so much. Otherwise, I'll stay on Aricept!!!
Does anyone know of any of the new drugs that work as well as Aricept? I'd love hearing from you. As far as being an "early-onset" person, my memory seems to be better than my family & close friends at the moment, (chuckle) thanks these wonderful meds. However, I have problems with "functional ability" ... i.e., my former-excellent organizational skills have gone to pot, and I have problems staying motivated as well as getting overwhelmed very easily when things start to pile up ... not to mention wanting to stay at home rather than face the "world" (especially since I've moved to a new town). Are there any others of you out there who are having the same problems and can offer suggestions? I'd like to offer a suggestion to those of you w/Early-Onset Alzies ... go dancing!! I was a big fan of dancing (It was my major hobby ... ballroom, country-western, swing, etc.) before I starting having Alzie problems and got out of it for awhile when I started having the typical depression that goes along with it. I've just gotten back into it, and I'm so glad!! My doc is happy too because apparently dancing is the best exercise for us Alzies. Also, keep your mind active with other activities such as cross-word puzzles, computer games, meetings w/friends such as Toastmasters (to spread the word about having Alzie's detected EARLY!!!), etc. And -- last, but not least, be sure to eat healthy foods!!! Thanks ... and the best of luck to all of you early-onset Alzies! I'm an Early-Onset Alzie -- diagnosed Sept 2003 and doing extremely well on Aricept and Namenda. Also take Glycopyrrol for the tummy problems that Aricept causes. I'd love to correspond w/anyone who is an early-onset Alzie and experiences "Aricept dreams" (nightmares), getting easily overwhelmed, wondering "what's next" ... You can write to me privately at maryleehardt@comcast.net if you'd like. |
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My mom who is 91 has Alzheimer's. How does one know, if or when, early onset begins. Thanks to anyoe who would lke to answer. I am 61 and have had some tests done. Thanks, Elaine S.
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Elaine, you should go to the Alzheimer's Association website (www.alz.org) and look at the symptoms. When I was diagnosed, it was because I was in a job as admin assistant that required me to be on the very tippy-top of my toes, and it was my boss who insisted I go to a doc to see what was happening to me. At first, I didn't believe her (I was making phone calls, asking the same questions over & over & driving folks nutso, plus my speech was starting to slow and I was having difficulty finding the correct words. At home, I was finding it increasingly difficult to get ready for work on time ... it was taking longer & longer & I started getting to work late. I also was having problems keeping things organized.).
Anyway -- check out the warning signs and also have regular checkups with your docs. They will do the base-line Alzheimer's testing if you’d ask them to (so you’ll know for future reference if you’re exhibiting signs of Alzheimer’s), I'm sure. If you start exhibiting signs, they'll probably do neuro-psychological testing (paper & oral testing), possibly an MRI or Doppler, or whatever tests deemed appropriate. The final test for me that confirmed the neurologist’s diagnosis was the PET scan, and insurance now covers those, thank goodness (even Medicare!). I recommend that if you have an Alzheimer's Association nearby, you get in touch with them. They will have a vast amount of resource material available to you, as well as support groups for you as caregiver for your Mom. They will probably also have instructional meetings, like our local "brown bag" lunches, where they bring in speakers to cover various subjects related to Alzheimers/Dementia, caregiving, etc. Please check out the Alz Assoc website (or the phone book) to find the closest office to you. If nothing else, there is always a toll-free number you can call at any time, day or night! Good luck, Elaine. Mary Lee ... an early-onset Alzie (and thankful to have been diagnosed early!) I'm an Early-Onset Alzie -- diagnosed Sept 2003 and doing extremely well on Aricept and Namenda. Also take Glycopyrrol for the tummy problems that Aricept causes. I'd love to correspond w/anyone who is an early-onset Alzie and experiences "Aricept dreams" (nightmares), getting easily overwhelmed, wondering "what's next" ... You can write to me privately at maryleehardt@comcast.net if you'd like. |
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To Mary Lee, Thanks a Bunch---Elaine S.
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My husband has been exhibiting some disturbing symptoms lately. He is in his sixties. His mother died from Alzheimer's and his father had some form of mental illness. I am not a stranger to the disease myself, as my dad died of it in 2005. Does anyone have any suggestions as to how to get my husband to go to a neurologist? He distrusts all doctors and meds. The whole family agrees that he needs to see someone soon and take advantage of whatever meds are available. Any suggestions would be appreciated.
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Hello Sheila Carol, my husband is 69 yrs old (Central New Jersey)and he showed disturbing signs two years ago but blatantly refused seeing a neurologist until this past September he passed out in our kithen and was taken to the hospital by ambulance. The hospital completed a CT Scan and it showed he had an "old" mini-stroke in the front lobal portion of his brain. He was in ICU and treated for dehydration and taken off a water pill he had been using for a year or so due to swollen feet. As he now progresses through life he exhibits all symptoms attributed to Alzheimers. He will only see our primary physician whom he trusts. His Primary has him on Aricept 10 mg daily. It has helped to some degree; but the mini-stroke took away his ability to express himself in full sentences. He can read the newspaper daily and he reads printed word to me but he cannot select his own words. He gets occasional irritation because of this inability, I suppose, knows fully of this loss and something is continuing to happen to him. I am all he has, so I cannot leave his side to go anywhere alone! I have relinquished my needs to take care of his needs.
This has taken me four months to adjust to. It is the most difficult task I have ever been asked to do, God willing, I will keep up the strength to go forward, God Bless you and Good Luck in your undertakings, Jan Richards, jctnj333@aol.com New Jersey |
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Sheila,
Pls tell your husband about the symptoms I was exhibiting (see earlier posting) and let him know that with the help of the wonderful meds the researchers have found, I'm doing so very, very well now and am so very, very thankful that my boss made me go to a doc. As you'll see from a posting after yours, somebody else's husband's fainted, and tests showed an old mini-stroke ... and it's possible that if he'd gone to a neurologist before he fainted that he could've prevented his current state of health. You and/or your husband are welcome to write to me personally so we can discuss this further. If you’d like, I will give you my phone num so we can talk “ear to ear.” I've been working as a volunteer w/the Alzheimer's Association locally, making speeches when I can to let people see how "normal" I am at this point (even 3 years after my diagnosis!) and to also BEG those in the audience to urge family, friends, and co-workers to see their primary care physician at a minimum ... and to also get to a neurologist (usually need referral from your primary care physician) for the appropriate testing. At lot of primary care physicians are not up to date on Alzheimer's symptoms, etc., so you should INSIST on getting a referral to a GOOD neurologist for you OWN well-being, even if the primary care doc isn't sure whether it's Alzheimer's, some kind of other problem like bleeding in the brain, a stroke, etc. We have to take care of ourselves (and our loved ones) for our/their future health, and to ignore the signs is not a wise idea. Taking action NOW will make the future a lot less stressful ... on the individual as well as the family and close friends. NOTE: Again, as mentioned in my previous posting, I urge anyone who is a caregiver for someone w/Alzheimer's or any other dementia ... as well as someone who has Alzheimer's in the family and is concerned for him/herself ... to go to the Alzheimer's Association website (www.alz.org) and to find your local chapter. If there is one close to you, please take advantage of support groups, informational meetings, advice from the trained staff, etc. If there isn't one close to you, you can still call a toll-free number to speak with an individual who can answer questions you might have. There's a wealth of information on the website itself, by the way. Please take time to peruse it! A fellow Alzie Mary Lee maryleehardt@comcast.net I'm an Early-Onset Alzie -- diagnosed Sept 2003 and doing extremely well on Aricept and Namenda. Also take Glycopyrrol for the tummy problems that Aricept causes. I'd love to correspond w/anyone who is an early-onset Alzie and experiences "Aricept dreams" (nightmares), getting easily overwhelmed, wondering "what's next" ... You can write to me privately at maryleehardt@comcast.net if you'd like. |
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Jan,
Another med that is often taken in conjunction with Aricept (and some of the others) is Namenda. Please ask your neurologist if that is appropriate for your husband's situation. As I mentioned in other postings, please look up the Alzie Assoc website (www.alz.org) to see if you can find a local chapter. Please attend a support group for caregivers if there's one in your area. If there isn't, perhaps you can start one of your own, with the assistance of the nearest chapter. Again, if nothing else, call the toll-free num to talk with someone on the association's staff. My best to you & your husband. A fellow Alzie Mary Lee I'm an Early-Onset Alzie -- diagnosed Sept 2003 and doing extremely well on Aricept and Namenda. Also take Glycopyrrol for the tummy problems that Aricept causes. I'd love to correspond w/anyone who is an early-onset Alzie and experiences "Aricept dreams" (nightmares), getting easily overwhelmed, wondering "what's next" ... You can write to me privately at maryleehardt@comcast.net if you'd like. |
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I have an appointment with my neurologist in the morning. I am scared to death. He has had me on Exelon Namenda and Genedon for the last 2 months. I have shown a little improvement but I still get very angry. I feel so sorry for my wife.
I am anticipating an AD dignosis. These meds have put weight on me and make me sick most of the time.4 hours after taking them I get the strangest feeling. Does it get any better? I am wondering if the benefit is worth continuing with the drugs. It is funny, I can use the computer but most days I could not tell you where or what I had for lunch. Lou lou h. |
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Lou,
I can understand you how must feel. However, be sure to tell the doc EVERYTHING you feel from morning to night, as well as WHEN you take each med. It could be that a combination of something is causing problems. Yes, I had a problem with anger, too. I have to work at controlling it because I realized what was triggering it ... however, sometimes the anger is just there. It may be that you need an anti-depressant as well; I take one (Lexapro), and it helps. One good sign is that you at least KNOW you're angry. (at least you can apologize to your wife this way ... chuckle ... we all have to laugh sometime, you know!) This disease is a meany, for sure, but the meds can help as long as you are sure to work w/the doc on what works & what doesn't. Don't EVER hesitate to call his/her office after a while if you're responding in a way that doesn't seem right. Don't wait until your next appointment, especially if it's a month or longer before then. Good luck to you, Lou. I'll be thinking about you Tuesday. MLH I'm an Early-Onset Alzie -- diagnosed Sept 2003 and doing extremely well on Aricept and Namenda. Also take Glycopyrrol for the tummy problems that Aricept causes. I'd love to correspond w/anyone who is an early-onset Alzie and experiences "Aricept dreams" (nightmares), getting easily overwhelmed, wondering "what's next" ... You can write to me privately at maryleehardt@comcast.net if you'd like. |
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To anyone. My husband has been diagnosed with EOAD. He is 57 years old. He was a physician for 25 years. He lost his practice due to this. He is a brilliant and wonderful man. He avoids all mental activities now, except reading. He is unable, or unwilling to do puzzles, or work math problems or even ready his bible like he used to. He seems to have no emotions. I know that he has to be angry at the loss. Any suggestions? He is taking both Aricept and Namenda as well as cymbalta and wellbutrin also a blood pressure med. I am just lost for how our new life should be.
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Ava,
I'm sorry to hear about your husband's diagnosis. I was diagnosed in September 2003 w/EOAD. I'm now 61 years old. I take Aricept & Namenda, and it has improved my mind tremendously! (not cured ... but a temporary fix) Whenever I tell somebody that I have EOAD, they're totally shocked because the meds are working so well for my mind. (I have other problems, such as disorganization, becoming easily overwhelmed, depression ... common for Alzie's Disease ... but people don't "see" that when I'm out & about.) Please tell your hubby to work with his doc on his depression meds. (It takes a while for them to kick in, so he needs to be patient.) He may also be having problems with sleeping, and if that's the case, he should tell the doc so he can get meds to help him sleep. My doc was concerned about me keeping my mind active because I was immediately put on disability when I was diagnosed. He made me promise to keep active ... and to exercise (walking, dancing, etc.) as much as possible, as well as eat properly. I play a lot of games on the Internet, I read, and I have gone back to ballroom dancing -- which "they" say is one of the best exercises for the mind! You could also look at the www.alz.org website to get ideas. Look to see if there's a local Alzheimer's Association chapter near you. If so, perhaps they can assist you. If not, call the toll-free number & somebody can help on the phone and will be able to mail brochures & other info to you. Good luck, Ava! Write to me "personally & off-line" if you'd like. maryleehardt@comcast.net I'm an Early-Onset Alzie -- diagnosed Sept 2003 and doing extremely well on Aricept and Namenda. Also take Glycopyrrol for the tummy problems that Aricept causes. I'd love to correspond w/anyone who is an early-onset Alzie and experiences "Aricept dreams" (nightmares), getting easily overwhelmed, wondering "what's next" ... You can write to me privately at maryleehardt@comcast.net if you'd like. |
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Ava:
My husband also had EOAD. He lost his job as a project manager last year. Since that time he has been working on our rental properties installing a new kitchen, remodeling bathrooms etc.. It takes him longer than it use to but it has given him something he can do for now. He plans on doing odd jobs when he finishes this project. He told me that if he had to sit around with nothing to do that he would deteriate faster. My husband also excercises several times a week. May I suggest going for walks together, traveling, and socializing with others. Enjoy your life together now. |
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You are not alone. Two years ago I took sick leave from work after my diagnosis of depression. The meds were not effective. My doctors recommened cognative testing. My employer requried testing before they would allow me to return to work. After the testing was completed my employer informed me tha I was "not able to perform the duties" of my job. I was shocked. I had my 61 birthday two days ago and I am the youngest active member of my AD support group. I was glad to learn of this EOAD community and wecolme the give and take of support.
My disability insurance prevents me from any employment and I am often on the internet to keep my mind active. I often have no desire to leave home. Darryl White darryl-w@hotmail.com |
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Hi all, I was on Aricept & Namenda for over a year. I went into a migraine cycle at the start of Sept.( 6 to 8 migraines every 24 hours) and
am now on week 29. After trying everything else, my neurologist brought me off Namenda on April 1 - and the migraines seem to be lessening in intensity. Jaye |
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So glad we have this board for Early Onset!]
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Jaye,
I personally (but I'm not a doc!) highly recommend you stay on Namenda in combination with Aricept. I've been on the combination for over three years now, and the results have been amazing! People don't realize I have EOAD when they meet me out & about!! I've even had docs doubt my diagnosis until they saw the results of my PET scan from three years ago, etc. There are many great meds out there for migraines, and perhaps that's what you should shoot for. Work with your doc on what's best. (beware of Topomax, tho ...) Good luck to you!!! A "fellow" EOAD ... Mary Lee I'm an Early-Onset Alzie -- diagnosed Sept 2003 and doing extremely well on Aricept and Namenda. Also take Glycopyrrol for the tummy problems that Aricept causes. I'd love to correspond w/anyone who is an early-onset Alzie and experiences "Aricept dreams" (nightmares), getting easily overwhelmed, wondering "what's next" ... You can write to me privately at maryleehardt@comcast.net if you'd like. |
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AMEN! To all EOADs ... let's "keep in touch" with each other by sharing what works & what doesn't & all that stuff. We need each other because there are so few of us who were lucky enough to be diagnosed early and can take meds to help us live relatively normal lives for now.
God gless all of you!! Mary Lee
I'm an Early-Onset Alzie -- diagnosed Sept 2003 and doing extremely well on Aricept and Namenda. Also take Glycopyrrol for the tummy problems that Aricept causes. I'd love to correspond w/anyone who is an early-onset Alzie and experiences "Aricept dreams" (nightmares), getting easily overwhelmed, wondering "what's next" ... You can write to me privately at maryleehardt@comcast.net if you'd like. |
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Darryl,
I understand the problems with not wanting to leave home. However, that is a depression problem that can possibly be resolved with the help of meds. Please talk to you doc asap (even your primary care doc can help, if you have a good one ... don't necessarily have to go to your neurologist.)!! Also, do you like dancing, or have you tried? They say that's an excellent exercise of the mind (and body, obviously), and if you are so inclined, it's a lot more fun than just walking & all that stuff. Try finding books you enjoy. Also, find games you can play on the computer ... not necessarily THROUGH the internet, but software you can purchase at Staples, etc. Those are fun and keep your mind active ... even if you get frustrated 'cuz you can't win like you wanna' (not necessarily a factor of Alzies, but just a fact of life with such games ... chuckle, chortle, tee hee!). Perhaps you can do volunteer work somewhere ... I volunteer at the local Alzheimer's Association myself. It helps me because not only do I stay busy, but I'm continually learning about my disease and what I need to do to be prepared for the "future." Something else I do is work go to the Alzheimer's research department in Birmingham, AL once a year to take their Alzie tests. They actually pay me a little bit ($25)(It's nice to RECEIVE money sometimes!) and it helps with their research to see how our Alzie's disease progresses year after year. As a result, my survivors will be able to ship my body, free of charge, to their research dept upon my death. Another way to aid the Alzie researchers. Perhaps you can find such a Alzie research dept near you. I know news of this disease is devastating, but think of it this way if you can -- God could've given you something worse, like Parkinson's or cancer or something like that. At least this disease is not as "noticeable" in its early stage, especially if the wonderful meds we take help us out. For me, people can't believe I even have it (after being diagnosed 3 years ago) because Aricept & Namenda have made a world of difference for my mind. I have a better memory right now than my family & friends!! I have other problems, such as disorganization, depression, getting overwhelmed easily, etc., but at least people can't "see" that. I hope this helps you, Darryl. Please write to me if you want to correspond "privately," if you'd like to "talk" via email. Your EOAD pal, maryleehardt@comcast.net I'm an Early-Onset Alzie -- diagnosed Sept 2003 and doing extremely well on Aricept and Namenda. Also take Glycopyrrol for the tummy problems that Aricept causes. I'd love to correspond w/anyone who is an early-onset Alzie and experiences "Aricept dreams" (nightmares), getting easily overwhelmed, wondering "what's next" ... You can write to me privately at maryleehardt@comcast.net if you'd like. |
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Hi,Darryl! I am 60 and also on disability & unable to work after an active career. I have also been displaced to from the West to be close to relatives, so I empathize geatly with your feelings of loneliness. Do appreciate your support group though, Darryl ! I can get NO interest at all in getting one going locally & have been asking for 18 mos. I have probably made a pest of myself from the local office to the state help line in Pittsburg & gotten nowhere. PA has no interest in it in my area - though there are a dozen or more groups for caregivers in my county. Your friend, J. |
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Ava, At least your husband is reading! That is one thing. I loved reading my whole life, as did my mother & both of us - had avoiding reading as our 1st symptoms. Also, in addition to dealing with his condition, he may be dealing with some mourning for his old life. I see a therapist twice a month (now since I live independently without a caregiver I do so to have an independent observer give me feedback on how I am doing cognitively & emotionally as much as anything.) But I discovered that many of my friends in the online dementia groups who were functioning well for several years after early onset diagnoses also had therapists. Also, even for late onset, the Administration realized (I learned on one of my dementia on line boards) that having a therapist was having a significant enough impact on keeping people out of care facilities that they recently began reimbursing thru medicare for claims for therapist bills. Though the govt hasn't advertised that fact. You just have to know to claim it. All of which, Ava, is a lengthy way of saying people did not, in the past, associate those of us with AD with therapy or counseling necessarily. But we have heavy issues to deal with & often do better when we can discuss them someone skilled that we don't fear to burden. Those that close up like my mom often seem to deteriorate faster. So I have tried to stay open.....So that's thought. Hope it helps. Good luck to you both! Jaye  |
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Also, in addition to dealing with his condition, he may be dealing with some mourning for his old life. I see a therapist twice a month (now since I live independently without a caregiver I do so to have an independent observer give me feedback on how I am doing cognitively & emotionally as much as anything.) But I discovered that many of my friends in the online dementia groups who were functioning well for several years after early onset diagnoses also had therapists.
Also, even for late onset, the Administration realized (I learned on one of my dementia on line boards) that having a therapist was having a significant enough impact on keeping people out of care facilities that they recently began reimbursing thru medicare for claims for therapist bills. Though the govt hasn't advertised that fact. You just have to know to claim it. All of which, Ava, is a lengthy way of saying people did not, in the past, associate those of us with AD with therapy or counseling necessarily. But we have heavy issues to deal with & often do better when we can discuss them someone skilled that we don't fear to burden. Those that close up like my mom often seem to deteriorate faster. So I have tried to stay open.....So that's thought. Hope it helps. Good luck to you both! Jaye [/QUOTE]Thanks Jaye, the response from you and others here has been supportive and I hope to continue with this forum and via email Darryl Darryl White darryl-w@hotmail.com |
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Thanks Mary Lee for your support. I find some comfort with the reponse from you and Jayne. I still have a lot to learn about the correct way to post here. I hope to continue with this online community with mutual care and support for a long time to come.
Darryl-W Darryl White darryl-w@hotmail.com |
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Darryl White darryl-w@hotmail.com |
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I am still learning about this online community. My notifcation was off. I clicked to turn them on. Is that correct? Are there a regular times for eoad in chat? What a good time for anyone?
darryl-w@hotmail.com Darryl White darryl-w@hotmail.com |
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Hi I am actually wanting information. My mom has been showing signs of what I think may be early onset Alzheimer's. Her father died from the disease. She doesn't remember conversations that we've had and they are only a couple of hours apart. She tries to tell me I am the one with the problem. I will tell her we have already had the conversation and she swears she doesn't remember it. What should I do?
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I sorry to hear about your mother. Scheduled an appointment for your mother with her doctor and go with her to the appointment. You may have already do so, it is important to get a medical diagnoses. Check the alz site for a state or local chapter affiliate with the alz association. There are support groups for family members, care givers and those with the disease. You are not alone. send me a message and let let me know how you are doing. Take care of youself. Darryl Darryl White darryl-w@hotmail.com |
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