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.|
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Thanks Darryl. I will keep you posted.
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Kris B.: Hi, my name is Sandy. I am fairly new to this website. I was reading through some of the quotes and noticed you stating you have or had severe leg cramps. That is how my EOAD began and from there it has been downhill. I was on Aricept at first but I could not handle it at all, so my dr. switched me to Razadyne & Namenda which seem to be holding me pretty good. The leg cramps & severe headaches went away for a couple of years, but now the leg cramps are returning and keeping me up until early hours of the morning until I am so totally exhausted I guess I just crash. Nothing seems to work. I am going to a neuro dr. in May to see what he can do. It seems that things are starting all over again. Can you give me how you are handling the leg cramps? Pain meds are out for me. Thanks! Sandy |
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Hi Sandy,
I was very intersted to hear your comments about Aricept! This is Jaye, I was diagnosed late with EOAD - so had suffered a lot of tissue loss before diagnosis. I was on Aricept & Namenda for over 18 mos. My migraines were so bad for the last 30 weeks that my family suggested I try some time off Aricept to see if the headaches would end. ..But my Neurologist preferred to end the Namenda at the beginning of April. That has cut in half the number of headaches each day - but not ended them to this point.  Jaye |
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My Alz dr tells me that headaches are a part of the progression of Alz. Something about the cobwebs or tangles growing on or covering my brain (layman's terms) It seems that the Aricept according to my husband (I don't remember) caused my headaches to worsen plus other side effects so he took me off Aricept completely and began me on Razadyne then followed up with Namenda. Both of these drugs seem to be holding me right now, but my leg cramps have come back and I can tell you the pain is almost unbearable. It seems they are worst at night (of course starting at bedtime) which keeps me up until early morning hours. I go for more neuro testing next week and back to my Alz dr. in May for results. This site is great. I know I am not out there alone. I hope things get better for you. Hang in there. |
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Thanks for the explanation Sandy! Best of luck with your leg cramps! Mine have just started on rare occasions.You are so right about this site!
Jaye |
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Hi Ava, I am also new to this site. My husband was diagnosed in 2002 at age 58. He has a doctorate, worked in a university and is ordained -- it meant big changes for us, too. At first he didn't discuss it at all but now he shares the diagnosis with some friends and all of our family knows. He, too, spends a lot of time reading but that is not strange behavior for him - he always read. He is disciplined about exercise and loves to spend time with our two small poodles. We can now joke about his memory and he points out when he remembers peoples names and I can not.
It was a long road to this point and we thankfully have received excellent care through a memory center at a major university hospital. He has participated in several studies and is currently on a study medication. Because of his intelligence he makes a wonderful study subject because the doctors can measure him effectively and he feels empowered by his participation and appreciates their respect for him. We take our time seriously and are grateful that we have the time to make necessary decisions, appreciate each other, travel when we can, and realize that our lives and our time is fragile and precious. We volunteer at our animal shelter together and trust me, those dogs could care less who we are, they just appreciate that we came to give them a walk or take them to 'training'. Our lives have been greatly altered by this disease but we see it as an opportunity time that would have been spent on our careers rather than doing something new and together. Don't be afraid to laugh at yourselves and don't see the future as dim -- there has never been a better time to have this disease and it is only getting better with more research and understanding than ever before. Joy is something people can share -- there are tough days but there is laughter, too. Dammit he is not dead and we aren't about to give up our lives to this disease. We see a counselor together about once a month and he did individual counseling right after diagnosis- it helps to get the feelings sorted out. Most of all we depend on each other, I fill in information that makes him more comfortable in social settings and he is still the most interesting, thoughtful, and wonderful man I married. I hope this helps, PTC |
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Hi Darryl, Has your weather been good enough that you have been able to get out much? Our's has been cold windy rain. But it is bound to blow off sooner or later. (My sisters & I are still in our long john shirts a week after Easter, some kind of record for us all, I think, & our furnaces are still on.) You asked about potential on-line times. It seems that there is a bit of traffic on this site in late afternoon & very early evening eastern time...But that may be dinner hour if you are in central zone.  Your friend, Jaye  (Missing the warm southwest lol) |
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Ava, I was glad to see the entry about your husband. I too was diagnosed at age 58 (Sept 2003), and I'm part of a testing program at the University of Birmingham. I'm doing well, considering. I'm on Aricept & Namenda.
I also try to look at life with optimism, and I've often thanked God for giving me Alzheimer's and not some other more devastating (immediate) disease. I volunteer with the Alzie Association and try to help the best I can. I also give presentations w/the Alzie Association staff from time to time to emphasize the importance of having friends, family, and co-workers diagnosed early, etc. I would love to continue corresponding with you (and/or your hubby) since we don't have a support group for early Alzies here. Please feel free to write anytime you'd like. The best of luck and lots of prayers for your hubby ... and you, as his caregiver!! 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:
Welcome to this formum. My husband (52) was diagnosed recently with EOAD. At first I was in shock and very depressed. I now look at how blessed I am to have such a wonderful husband and my goal is to enjoy every day I have with him. We have become active in the Alz. Association in Georgia. I will be on the steering comittee for the memory walk this year, and we have "gone public" telling others about the disease. The local newspaper will be publishing a short article about my husband today. |
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Hi Jaye, Some sun here but not very warm. Had a couple of warm days two weeks ago and now I want the warm days back. Been off the web due to problems with ISP. I miss the contact here after just a few days. I still find it difficult to leave home sometime. I know Mary was right about depression. Now that I have computer service I will check out the chat line agin. Darryl Darryl White darryl-w@hotmail.com |
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Hi Jaye,
Some sun here but not very warm. Had a couple of warm days two weeks ago and now I want the warm days back. Been off the web due to problems with ISP. I miss the contact here after just a few days. I still find it difficult to leave home sometime. I know Mary was right about depression. Now that I have computer service I will check out the chat line agin. Darryl Hi Darryl, We are still chilly too & looking for sun. Is the Alz chat line on this board different than this? (On some boards, "chat" is a different board. ) Glad you are on line again!Depression is a daily struggle. Did you say what you are taking for it? I am on Effexor. Its one of the things I loved about the great author Kurt Vonnegut, who we just lost. He battled depression every day!for over 50 years. "And so it goes." On a different topic, I know we hear from Mary is a frequent correspondent but wish we would hear more often from the other folks with dementia. Like Chuck, Charley & Tracey. They are more a bit more active on the other on line dementia groups. Also, they travel a good deal speaking & advocating for AD.But I see they haven't posted here in months.  Hopefully they will soon!Have you seen the new AA activist program & bought a purple shirt yet, Daryl? I'm waiting for my Disabilty check to buy mine.lol! The shirt is cheery at least! :-) Hang in there! Jaye |
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My daughter found this site and I think it is great that people with early onset have a place to talk. I have been looking for someone to talk to that has early onset for about a year. I am 56 and was diagnosed in 2003. I was a RN that worked with geriatic patients for over 30 years. I worked with many Alzheimers patients over the last 30 years. I have a wonderful MD that has me on Aricept, Namenda and other meds to treat depression, diabetes and my heart. He is a specialist in Monroe, LA and well respected. He treats the whole person, because he says it all has to be working right for the brain to work its best. My mother and her dad had Alzheimer, plus my dad's side has Alzheimers. I try to stay busy. I just did an article in the local paper on early onset alz. this week. They did a good job. Glad there are people out there to talk to now. YEA!!!!!!!!!!!!
Sue Lost love can never be found! "Live Simply, Love Generously, Care Deeply, Speak Kindly, Leave the rest to God." |
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Sue, I'm so glad that you found our "people with early onset" community! You got double jeopardy if you had it in both sides of your family.I only inherited it maternally but am the 3rd generation. I am 60 now but was diagnosed 2 1/2 years ago after MRI's taken back thru '99 showed "significant tissue atrophy" in the brain & were ignored or explained away. I love the sound of your doctor! He sounds wonderful! I wish my neurologist or internist were as responsive. Could it be the difference in pace in LA vs PA - here the Drs seem all overbooked & in a hurry & taking calls during the 15 mins that is allocated to you lol. I have moved back to PA to be close to my son & family from Dallas - actually Mesquite (I had just returned from working in Reno when I got obviously incapacitated.)And I miss the pace of my last 7 yrs in the south & the west...not to mention the weather lol ...Were you effected by Katrina?If you don't mind my asking, Does being a nurse & knowing everything so intimately about what is coming make it easier or harder for you? It seemed to make it harder for my mom, but it was hard to tell whether that was just her personality. Quite honestly I focus on living each day as richly as I can. And my years of meditation are paying off in peace. I loved that you are writing - & wrote an article on living with early onset for your paper.It's important for people to know that we are not all elderly! The last thing that I wrote was an article for the Summer 2006 Greater PA Chapter Newsletter for the AA on my time at the Public Policy Forum in Washington that June, with a pic of my daughter & I in front of the Washington Monument. I am so glad you are here, Sue! You will here from the rest of us, I know! Jaye |
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Sue: Hi, My name is Sandy. I am 57 and have EOAD. I was diagnosed about 2/1/2 yrs ago. I could not tolerate Aricept so I am taking Razadyne & Namenda. It is good to hear that you are out there writing articles for paper and staying involved. I try to focus on helping other people and keep my mind (?) off myself. I can no longer drive so my husband (he is still employed) has hired a caregiver for me a couple of days a week to get me out of the house. When she is not taking me to dr's appointments, we try to visit someone we know that is shut-in or under hospice care and give them a little ray of sunshine. I hope you like this site and let us hear back from you as to how you are doing? Sandy |
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TB, I forgot to mention how many time your words have helped me as I begin the journey to remember that loving my husband is more important that the petty things that have changed in "my" life because of it. He has truly been an amazing husband and father and been my protector,leader,gave me a sense of safety and completely loved and so much more. His faithfulness to our family has been outstanding. So wanted to tell you your struggles have not been wasted for at least one person and I imagine many more. Words
do not express my gratefulness . But Thank-you anyway. Diana diana j, love my husband,Jesus and horses too. Virginia |
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There were a number of posts on this site with the subject "you are not alone". I hope they are still on the site. There is some comfort in knowing that others with the disease are here to provide mutual support. Some many things change with EOAD. An unwanted early retirement was just one the events that came with an overwhelming sense of loss. We must cherish the things that we can still hold and enjoy. It's great that your daughter is there for you. I enjoy the support our Online Community provides so please write again.
Darryl Darryl White darryl-w@hotmail.com |
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Jaye,
Thanks for your kind words. Being a nurse has made it harder because I know what my family will be facing in the future. I am not worried about me, it is them that concerns me. I did not write the article for the paper I was in the article about early onset Alzheimers. I have to talk to some of you in the chat room for dementia patients. I have already talked to some in chat room 1. I too try to look for the postive things in life and not the negative. Hope you have a blessed night. sewinmom Sue Lost love can never be found! "Live Simply, Love Generously, Care Deeply, Speak Kindly, Leave the rest to God." |
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Dear PTC, This is my first time participating in any kind of an online chat. I hope I am doing this correctly. I feel a need to be connected to others that are dealing with AD. My husband was diagnosed about three years ago but was definitely suffering from this disease at least three years before that. What caught my attention about your message was your comment that your husband was the "same wonderful man you married." My husband is totally opposite of the wonderful man that I married almost forty years ago. He was generous, kind, patient, happy, and nurturing. Now he is the opposite of this. He is suspicious, stingy, mean, sad, even abusive in word and deed. Did you go through anything like this? Would counseling help this? I miss the man I married and want to see that man again. |
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Dear Thelma,
PTC is blessed to have such a warm relationship with her husband as it sounds from her wonderful writing. It makes me envious. I just wanted to share with you that I understand about the personality of some, as my husband too has lost ability to be empathetic to me. He is quite selfish as a child might be. Things do center around him. He is quite clingy, and suspicious if I am gone more than he wants. I have to grocery shop in town and don't go every other day, so when I do it can easily be a 3=4 hour event. Too often he wants to go, and it slows me down greatly. I end up so anxious to get home because he gets tired and cranky that I leave out something I needed to do while in town. If I manage to get to do errands alone *(yeah!) and I am gone an hour, he will be leaving messages on my voicemail, and when I get home he will be yelling at me that I was gone all day. I can point out the time I left, and that it is only an hour later and he will insist I was gone 3 hours. I had wondered too about counselling earlier on, and I'd have to say it would only help if your loved one is in early, early stage. My husband professed to understand things in the beginning, but reached a point where he wouldn't even remember what we discussed, and how we agreed to handle our issues, and "tools" we were given to settle conflict. It would feel so good to have that counsel, feeling things were understood and that we could work on minimizing the conflict resulting from his forgetfulness and demanding nature.....only to have it reverse before we even reached home. Once upon a time I was a spoiled wife in that he'd bend over backward for me. Now he is pretty dependent on me to make him secure, and take care of him. Its a tough spot we are in, and though it sounds cliche' to say but we have to try to accept that it is the disease doing this to them, and to our relationships. |
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I am so glad to be able to discuss Early Onset Alz. My husband who soon will be 63 was diagnosed about four yrs. ago. He had his own Structural Engineering Firm with over 25 employees here in San Diego. He was the smartest person I knew. It is so painful to watch him decline. He also realizes how he is failing and is having difficulty with depression. Every day, however, is a little different.
I was fortunate to get away for four days which I needed so badly. We have great support from family and friends. I am so frightened about what is in our future. I am so happy that we have an Early Onset group here in San Diego with the Alz. Assoc. We have about 8 couples active. Kevin is the oldest. I find that patience is the most difficult for me. Having Kevin retire early and have such a disabilitating disease at the same time has been tough. I would have never known if it weren't for our group that he was eligible for social security disability. Every little bit helps. My husband has done a wonderful job of planning financial for our retirement. He is very upset knowing the money will be going for his care since we never got long term care. I look forward to any helpful hints from you. Linda Lyons Caregiver for Early Onset husband linlyons@san.rr.com |
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Linda,
Please be sure to get info from your Alzie Assoc for caregivers ... there's lots of stuff out there that will help you as well as your sweet hubby. When I have a chance, I'll pull up some info from my old computer from when I was doing volunteer work for the Alzie Assoc here, stuff I'd typed up and would possibly help you. In the meantime, be sure to look thru ALL the stuff on the website for the Alzie Associ (www.alz.org) because there's lots of good stuff there, for both the patient and the caregivers. I'm glad you have lots of support. Please feel to write to my "separately" from the message board, anytime you'd like. I'd be happy to keep in touch with you!! 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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I was diagnosed with AD over 10 yrs.ago,but this past year I decided I was still doing too well to have AD.I was retested & have Vascular Dementia.I still have a large voice in my care........
SnowyLynne |
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Lynne, Your message certainly gives me hope! My sister has long insisted that my mother had vascular dementia & only later developed the plaques of AD...and she did everything guaranteed to worsen the condition, bless her! So I'd like to think I have more years ahead of me in this phase. ...And I am so glad to hear that you continue to be a partner in your care. That is essential! Thanks for sharing your news! Your friend, Jaye |
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Hello, I'm 47 and I have full disability. I'm having problems finding help. Even my best friends think I've some how been able to overcome the EOAD. I found out about three years ago. They don't understand every thing I do to hide it, When I make phone calls I wright every thing down before I call. I was a clerk for th county. I went to college. It's hardest on my children, girl 24 boy 22 when I forget things a mother shouldn't forget. My husban is indeferant on the outside. days like today all I can do is cry. He left this morning and I forgot where he is. he will be gone a week for back surgery. I'll need help to care for me. I can handel this.help me god I can handel this.
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Cindy, Bless Your Heart! You can handle this but you may need to be able to call on friends or family at the spur of the moment. I am so sorry I was diagnosed in 2002, I was only 38, I am also now 43 and stage 2. I understand how you feel and wish I could offer more than just words of understanding. If you need to talk to someone please feel free to give me a call, I live in Southwest Missouri 417-345-1709 of e-mail me personally tiger@todays-tech.com 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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Cindy, I also am in stage 2. Add my name to Tracy's if you like.  We can put together a support network while your husband is away. Tracy is fantastic. :-)Write me at jayesbliss@Gmail.com for my phone. I am 60 now (but I like to think of myself as a fairly "with it" 60)lol & my brain tissue atrophy started in my 40's. Take care of yourself!Be at peace! |
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Hello, this is my first post, but yesterday they confirmed my husband, who is 58 years old, has dementia/Alzheimer's. Even though we have been noticing changes it was still difficult to hear this. I have several questions: they put him on the usual drugs of Aricept and Namenda. I would be interested in hearing from anyone that is on a different regime or knows of different meds/vitamins that are proving helpful.
My next question is in regards to getting on disability. I've visited the SS web site but has anyone on this site have experience or any advice that can help me. I would be very appreciative of any advice any of you can render as I am panicking and can't see beyond tomorrow. Thank You. Janet Janet5 j5forde5@charter.net |
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Janet:
I'm sorry to hear about your husband. My husband age 53 was diagoned this past January. My husband has been on both Aricept & Namenda. He feels that the drugs have helped his confusion. My husband did have a problem with syncope in May where his heart stopped. He was in intensive care and at first they wanted to put in a pace maker. Thank God another doctor saw him and told us a pace maker would not stop this from happening, and this is not life threating. Syncope occurs in about 2% of patients taking Namenda. The drugs have outweighed the risks. Most people have gotten disability from S.S. My husband's brother age 49 with E.O.A.D. has been turned down twice and is waiting for a trial date. We will be appling this month. I suggest that you get all documents together. A laywer friend of mine suggested that we get a neurophsyic elevation on my husband which we did. My friend said it is better to have YOUR doctor evaluate him than SS. I know what you are going through is overwelming. It was for me last fall. I have faith that a cure will occur within the next few years. It may not save my husband but I pray my kids will not have to worry about it. Enjoy him now and live every day to the fullest. You may want to post on the caregivers formum since it is the most read site. Let me know if I can help you in any way, Trish |
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Janet5 j5forde5@charter.net |
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Trish, Thank you for responding to my post. We have been battling this for two years, but no doctor wanted to label him with Alzheimer's/dementia at his age. Now they had no choice as he is failing all the test. He has had two neuro-psych test one two years ago and one few weeks ago and they finally diagnosed him officially. Really strange, but right after reading your post to me, he told me he thought earlier he was going to pass out, got all sweaty and just took it easy for 1/2hr; he has only been on the drugs a few days but he doesn't seem to feel too great on them, but will continue and see how it goes.
I've started the SS application (can do it online) and have an appointment this week. Wish me luck as I do have two years worth of doctors appointments, etc. Hope it helps. I just don't know what I will do once he can't be left alone. I'm 50 so I have lots of years left to work. I guess I cross that bridge when I come to it, but the future sure is hazy. Thanks for replying. I will go on the caregivers forum also. Janet Janet5 j5forde5@charter.net |
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Janet,
I was diagnosed at 58 w/EOAD. I've just turned 62. I'm taking Aricept & Namenda, & it has done a world of wonder for me! Some people can't believe I am an right now because my memory is so good. Of course, I have other symptoms they can't "see" ... ... ... In case your hubby (or any of you EOADs out there are reading this!!) has tummy problems as a result of taking Aricept (normal side effect), I was just given a med by an Alzheimer's research doc in June & it has helped a lot!!! It's called Glycopyrrol, and I take a 1 mg. tablet at night when I take Aricept. I'm also allowed to take one more 12 hrs later, during the day, if my tummy is upset (diahhrea). It sure has helped on days I still have an upset tummy, but it's fewer & fewer days now!!!!! Also, when you're getting ready to sign up for Disability, here are some things I've learned, both from my experience & a friend of mine: 1. Be sure all the docs involved (especially primary care, neurologist, psychiatrist / psychologist)specify that your hubby is UNABLE TO WORK AT ALL ANYMORE!! My docs didn't specifically say that in my file the first time around, & I got denied. However, the lawyer involved the second time around (was a different one, thank goodness ... and obviously better) said to be sure to have the docs include that in the file because the Soc. Sec. Admin. will ask the docs for a copy of their files. 2. A friend of mine who was accepted for disability with the first application went through the social security office itself. The rep there filled out the application online and made sure she had the correct documentation, etc. I think that's what helped her be accepted so quickly! 3. If your hubby has had a PET scan, be SURE to include the results of the PET scan ... that is the most definitive diagnosis at this point. 4. If you have to go to a hearing because your application is turned down first time around, be sure to take ALL documents with you. My file had some document missing when the judge got it, and I thank goodness had it with me. (It was the paper from work that said I was starting disability through them on a certain date.) To any of you who are trying to get a diagnosis for a problem that you think might be Alzheimer's, ask your doc to have a PET scan done. Insurance ... even Medicare ... will pay for it now. Also, look thoroughly at the Alzheimer's Association website for all kinds of helpful info -- both for the Alzie patient and the caregiver! (including the type of legal docs to get ready NOW before the Alzie patient can't take care of things too well.) Good luck to you & your hubby, Janet. If you ever want to write to me privately, please feel free to do so. 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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Mary Lee, Thank you for all the helpful information. We have had numerous tests, two neuro-psych tests, MRA's, catscans, but didn't have a PET scan. I wonder if I should ask the doctor to do one? Thanks again for taking the time and giving some hope. They have just started my husband on both those drugs, he seems a bit irritable but the neurologist was awful and didn't sound like there was a bit of hope; you give a much brighter picture, Thank you.. J
Janet5 j5forde5@charter.net |
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Thanks Mary for the information. I was debating on if we should apply in person or online.
Janet I forgot to mention that in addition to the AD meds my husband also take 2000 mg of vitiam E and fish oil tablets. My BIL's neuroligist suggested both of the above. He also runs - so far this year he has ran 500 miles. Exercise is great for the brian. Do not give up. There are many hopefull drugs in phase II & III. I'm still praying for a cure and trying to keep my husband healthy until a one is found. You may want to check out a clinical trial in your area. They are listed on "NIH.com" |
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Hello everyone, I was diagnosed with EO Alzheimer's earlier this year. I am 49. My birthday is on Thanksgiving! I have a lot to be thankful for. I am very grateful that God blessed me with a great doc. She started me on Aricept right away and set my husband and me down for a “little chat”. She explained that my condition is not a death sentence. I should take care of all the important stuff and then live a great life. I know that is really putting what she said simply but that is what I got out of the conversation. So my plan at the moment is to see our lawyer get all necessary forms in order and then I want to travel and see some different places. This is a wonderful form and I have gotten a lot of good information. Keep up the good work.
Natalie Character is forged in the smallest of struggles. Then, when the big challenges come, we’re ready. Natalie |
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This is my first visit and I have mixed emotions reading some of the posts -- sadness that there are so many cases of early onset, but I'm also bolstered that my wife and I are not alone. She is 56 with moderate stage AD. She first showed the symptoms about six years ago. She is taking Aricept and Namenda, though as billed neither is reversing or stopping the progression. I've taken early retirement (I'm 59) to be her sole caregiver. I don't have questions at the moment (I'm sure there will be hundreds down the road), but I would like to say thanks for allowing us to feel there is support.
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Natalie, I'm happy for you that you have such a good doc ... that can make all the difference in the world. It sounds like you're taking the right steps with your legal matters and then traveling! Good for you.
Be sure to check out all the great info in the Alzheimer's Association website. Also, see if there's a local chapter near you. If so, perhaps you can volunteer (That's what I did, and it's really helped me understand everything better.). If nothing else, get to know the association staff and check on informational meetings and support groups. God bless you. Keep in touch with us, especially if you have questions you think we can help you find answers to. Another 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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Jim, I'm sorry to hear about your wife. Keep in mind that while you THINK Aricept and Namenda aren't reversing or stopping the progression, you really don't know what would be happening to her if she were NOT on those meds. One research doc told me he's known Alzies who have stopped the meds for some reason or another and when they went back on them, never got back to where were before stopping them. I thank God often for the research folks who have come up with those two meds -- miracle meds, as far as I'm concerned!!
Please be sure to check out all the great info the Alzheimer's Association website (www.alz.org). There's even good info to help caregivers take care of themselves while caring for their loved ones. Also, check to see if there's a local chapter of the association close to you. If so, try to go to their support group sessions & other informational meetings, as well as checking out info they would have available for you in their office. Good luck to both of you. We're all here for you. If you ever want to write to me personally, please feel free to do so (SAME GOES FOR ANYBODY ELSE, BY THE WAY!). Another EAOD ... Mary Lee Hardt 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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A big THANK YOU to everyone who is participating in this site. It is so-o-o very good to "hear" your voices! I have been diagnosed with dementia (probably vascular in nature). I have just turned 59 and have been retired for three years, since I began having mini-strokes. For 34 years I was an elementary school teacher of grades 2 through 6. I was a well respected teacher and leader of my school. And now, THIS. Just like many of you, the organizational skills I once possessed have left me. I get frustrated and tire easily. My focus ability and short term memory have improved since I began the Aricept. Some of you mentioned having bad dreams. Since being on Aricept, my nights are like all night movies. I wake up tired from all the activity. THey are so vivid and full of color. When I awake, I can remember much that went on. At first, it scared me. Now I know it must be a side effect of the medication. I'm not sure I want to stop the Aricept because I have seen such improvement. I can actually almost follow a recipe now, where before it was impossible. I have some difficulty driving unless I do it every day. I put the car into gear and wait for the car to move by itself... Eventually I remember to step on the gas pedal... ANd almost every movement I make in the car is thought of ahead of time to make sure I am following all the correct steps... Quite a weird feeling for someone who was so capable just four years ago.
I look forward to staying within this loop and sharing more of my thoughts and concerns with you all. Leah |
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Leah: I'm am so impressed with you. My husband who they dx in May with Fronto temperal lobe dementia most likely Alzheimers, is in such denial and will not even speak or believe it. He calls it a memory problem. I don't think this is good, but I guess he can't face it. He is 58 years old and lost his job in May also. He basically just home and takes care of the lawn and takes the dog on long walks. I'm not sure what to do with him as he is just wasting what time he has. He still drives also locally but it scares me. Any ideas or things you feel other people can do to help, I would be interested in hearing them. Thanks for sharing your story and much luck. Janet
Janet5 j5forde5@charter.net |
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Hello, not sure if I should have introduced myself here or not - anyway here I am. I've been on EOAD med - Reminyl 12mg twice a day, for the past almost 5 years. Not really sure if this is what I actually have or not. Was diagnosed and I was given tablets!! Anyway, I thought I would join up here to see whether I can be enlightened or not. Hope I can contribute some things to all of you too! I am still in India at present, been here for a while now - almost 6 years on and off, and now looking forward to returning to the West if I can get done what I need to get done first.
Giving dignity and respect to a man simply because he is a man...also includes our children |
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I haven't checked in here in a while, I like the chat line at alz.org because of daily activity at set time. I go on line to discuss other issues at yahoo! 360 and I read the blogs.
Darryl White darryl-w@hotmail.com |
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Hi I am a journalist from the Uk and my family has been touched by Alzheimers. My NATIONAL UNION OF JOURNALISTS NUMBER is NUJ 937 491. I specialise in real life stories and have been asked to do a story - "24 hours that change my life - I have been diagnosed with alzheimers or dementia in my 30's or early 40's" The person needs to be a female as it is for a womans magazine and be aged between 30-45 years of age and to have been diagnosed in the last 5 years...ie earlier than normal. I would interview them via phone, we'd need some pictures of them and possibly send a photographer plus We always pay an interview fee because everyone's time is valuable. I am hoping there is someone out there who will participate in my story and be interviewed. My phone is 07747 825 884 or outside Uk +44 7747 825 884 You can email me at alleynews@hotmail.com HELP ME EDUCATE OTHERS Love Alley alley einstein |
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Indigal, welcome from another one in the same boat.
(I am taking aricept & have been diagnosed 2 years.)Glad to see your message. You may want to take Darryl's advice about the chat line at Alz. org, if you want "real time" interaction at specific times of day....if you haven't already. :-) Alley, the best of luck on finding someone to tell their story about early diagnosis! Jaye |
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Hi. I've been doing research and came across this group. I'm positive I have early onset Alzheimer's, but my dr doesn't believe me. I'm 51. Alzheimer's runs in the family (my mom passed last Nov), but no one has been diagnosed before age 65. I feel like I'm losing my mind! No one understands what I'm going through. My family constantly yells at me for repeating myself or continually forgetting. I get confused easily, and while I don't usually forget words, I can't seem to express what I mean. I was an avid reader, but don't read anymore - I can't remember the characters. At work, I've managed to keep it light and joke about it. Everyone's always laughing about my frantic searches for the pen I'm holding in my other hand... I need help, but my dr chalks it up to stress, etc. What can I do???
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Dear Schrenkc:
You sound like my husband. He was a few years older and started complaining of the same symptoms, it wasn't until this year (some 4years later) that we finally got a diagnosis. You have to go see a neurologist and ask for a neuro-psych test. Our neurologist said my husband has fronto tempro-lobe dementia, it is a dementia that strikes people under the age of 65 years old. My husband has been declining rapidly this past year, losing his job and we had his driving abilities tested and he failed and lost his license. I think not knowing is worse than knowing and perhaps you might have something else that is more treatable, but I would suggest starting with a neurologist. Good Luck. Janet Janet5 j5forde5@charter.net |
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Dear Schrenkc - I know exactly what you are going through! It took over a year for me to get doctors to believe me that there was something going on with me other than simple memory difficulties from "aging" - I was only 53. Finally, after writing a heartfelt letter to a wonderful neurologist who really read it and saw the word "MY BRAIN IS BETRAYING ME" and "my intuition is telling me there is something very wrong," did he take me seriously.
I am now, after serveral different medicine trials, back on Aricept. This has worked wonders for me. Now at 55, I can, for the most part function normally. I still have difficulty at times remembering words, things I have to do or names for objects. But I can read and function more normally. What I'm saying is there is such a thing as early onset something- even if they don't want to call it AD. My son still has difficulty and sometimes others do to. As long as you get treatment that helps you to function better and lets you know you are NOT GOING CRAZY cause you are not. Trust me, you are not. hope this helps. |
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MaryCecilia,
I'm glad you're on Aricept! What wonders it works! Also ask your doc about taking Namenda in conjunction with Aricept. I take 10 mg. of Namenda in the morning and 10 mg. in the evening, when I take Aricept. Also -- in case you (or anyone else reading this) have tummy problems that you think may be caused by Aricept ... my doc put me on Glycopyrrol (1 mg) that I take at night w/Aricept. Best of luck to you. Mary Lee A "fellow" early-onset Alzie 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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Mary Lee
Thanks for responding. What does Namenda do? does it work on the muscle cramps? I already take medicine for GERD so I've not had any stomach troubles so far. |
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Namenda is an Alzheimer's med, like Aricept. The neurologist who initially prescribed it for me said it works very well with Aricept to keep Alzheimer's "at bay" ... especially for those of us with early/mid-stage Alzheimer's -- keeps us from getting worse quickly, etc.
Happy New Year!! 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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