Alzheimer’s Association Online Community
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Alzheimer’s Association Online Community |
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Message Boards Forum Index Alzheimer's 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 57 year old early onset alzheimer's person |
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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 57 year old early onset alzheimer's person |
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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. |
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