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Younger-Onset AD or Other Dementia
husband diagnosed at 59, siymptoms began at 57 he is now 60
Here is the website for the Alzheimer's Assn chapters in your state. If you haven't contacted the one closest to you, please do. They may be able to give you information on the services and placements possibilities in your community. You will have to cut and paste the link. Something seems to have changed on this Alz Connected b/c it's become difficult to post links you can click on.
God bless you and your husband!
Welcome, mitidai. I'm sorry you and your husband have been affected by dementia. Are you working with an elder attorney? They know the most about preparing for Medicaid, preserving assets, and preparing for a life with dementia.You can find an elder attorney at this site:
www.naela.org You can find a certified elder attorney at this site:
www.nelf.org Please read the sections in the main web page, alz.org, re: finances and planning for the future. Also visit the Spouse/Partner board and read the advice given from those members re: their preparations for their futures.Post your introduction and many will respond and support you. There is a wonderful supportive group over there and they are facing the same issues as you.Iris L.
Thank you for sharing your thoughts. I too was diagnosed early at age 44. I am grateful for everyone's comments. I am new to ALZ.org I'm lonely and I feel lost.
Welcome to the Message Boards. I'm sorry to hear about your husband's diagnosis. Is he being treated with medications for dementia or AD?
Is he being seen by a neurologist who specializes in dementia/AD care?
I was diagnosed @53. I am now 58 and doing fairly well. I use an Exelon patch and Namenda and Cerefolin NAC along with mood stabilizers. I have also participated in two drug studies. The first failed. The second one I am still currently in the 2nd part of this study and doing ok.
Good Luck. We are here.
You may want to post on the Spouses Forum.
Please, let us know how both of you are doing.
Peace and Hope,
Thank You for your reply. My husband is seeing a Neurologist. He had a petscan that showed that he had severe ALD. When I look back he has had symptoms for about 4 years. He has changed very much the last year. He uses different words when he talks about things. It is effecting his language. The Neurologist has put him on Aricept. We have an appointment next week and he said that he is going to try something else. Not sure what the name of it is. I hope something works because he seems to be getting worse fast. He can't follow simple directions any more. I have to try to give him a little bit of direction at a time. I am not sure what stage he is in. I am a very organized person and am having a hard time dealing with not knowing where he is and how long we have. I understand everyone is different but he seems to be going fast. He is only 51 and I am 53. I hope and pray that the meds help slow down the process. If anyone can suggest any meds that they have been on and has worked, please let me know. We may do clinical trials but not yet. What do you think of the clinical trials? Are they worth it? I am self employed and cannot take off work because I would loss my business. I am the sole provider for my family. Thanks for listening to me ramble on. You have a positive attitude and that is wonderful. My husband doesn't even understand what ALD is? The doctor tried to explain but he didn't understand. I don't want to say too much and get him upset. He tells me that he will look it up online and never does. Best of luck to you.
Hi, neciebombom. Please do come talk with us on the Spouse/Partner Caregiver forum. It's the second forum on the list:
Meds: Aricept is a cholinesterase inhibitor. There are two other drugs that belong to that category, Razadyne/galantamine and Exelon. They are similar, but there are still differences in efficacy and/or side effects, so if your husband isn't doing well on the Aricept, ask to have him switched. See:
Namenda belongs in a different category. Many patients do better on a combination of a cholinesterase inhibitor and Namenda than on either one alone, so the neuro may be thinking of adding that.
Axona is a prescription-only medical food. Many of our loved ones -- including my husband -- have responded well to that, too. Start off slowly and ramp your way up to a full dose, though, and give it after a full meal heavy in protein and healthy, unsaturated fats. Otherwise, it can cause cramping, nausea, diarrhea, etc.
I'm a big fan of clinical trials. There are many promising new drugs coming down the pipeline, and a clinical trial is usually the only way to get access to them years before the general public does. Of course, you won't know if a given drug is going to work for your husband ... but heck, that's true even for the drugs that are FDA approved.
I looked for clinical trials that were Phase III (so I had some inkling about safety and efficacy); that had as high a chance as possible that we'd get the "real thing", rather than placebo; and that were going to go into an "open label" phase after the double-blind, placebo-controlled phase -- and, preferably, would do so in 3 or 6 months, rather than, say, a year or two.
Oh -- the members of this forum who have EOAD have a truly unusual degree of self-awareness.
Most Alzheimer's patients have "anosognosia", a symptom that blocks them from realizing there is anything wrong with them. And because they truly don't think there's anything wrong, well, there's no reason to read up on it. I'd keep on the way you have been ... answer any questions he might ask, but avoid saying anything that might upset him.
My husband "knew" he'd been diagnosed (with late-onset AD), and read up on it, but figured he was still very early stage and wouldn't ever get very bad. I used "the A word" freely in front of him, since it didn't seem to bother him.
He did sometimes realize there was something wrong by the time he was late stage 6. Every once in a blue moon, he'd ask why his brain felt funny, or why he was having trouble thinking. I'd explain that he was sick, but the doctor had prescribed medicine to help him. He accepted that, and seemed reassured that the doc and I were on top of things.
Randy, do please come talk with us on the Spouse/Partner Caregiver forum. We can offer suggestions on how to get your wife the medical care she needs (really, you mustn't just let that slide!), and how to get help for her. It does sound like she shouldn't be left alone for extended periods of time ... and you may have difficulty finding a Day Care for someone so young.
My husband too has early on-set. It is hard to say when he actually began with the dementia. He was having symptoms while in the Navy. His doctors diagnosed him with adult on set ADD, stress, anxiety and just the aging process. After getting out, we went to two different neurologists. One stated that he definietly did not have any form of dementia (that was her specialty) and was not having seizures. One stated she thougth he was having seizures, but could not get one recorded on his routine EEG's. Finally, we went to Johns Hopkins who diagnosed him immediatley with seizures. After spending almost an week in the hosptial and having three neuroligists testing him, it was concluded that he has Hippocampus Sclerosis Syndrome. They thougth his dementia was non-progressing. Last Spring I think he may have had a break through seizure. Then in Oct. he barely missed a head on collusion (both cars hit each other by the front light on the drivers' side). I took his license away, told the judge that I had, took him off our insurance policy and sold my car to our son. He was then dx in Nov. with having progressed and now Early Onset Mild to Moderate Alzheimer's. This has been going on now since 2002 or 2003. He is only 60.
I had hoped we would have had a wonderful life together, but I guess the good Lord had other plans for us. I have only been going on this site for 2 weeks, but I feel so much support. I am very grateful. I hope we can all get through this together.
Lesley Jean looking forward to hearing from your husband
Our situations sound quite similar, except it is my father, not my spouse the one who was recently diagnosed with EOAD. He was diagnosed in Sept. 2012 at 54. He is still working, driving, etc with few problems but I have noticed a slight progression. I too worry about today, tomorrow, the next day, 3 years from now, 5 years from now, etc. Just wanted to let you know that you're not alone. We(my mother and I) don't speak to him about the disease. I think it's better that way.
KJJ and Essbee, you'll probably get more responses if you post your question in the Caregivers board, but to give you my perspective, younger onset AD runs in my family. I was working full time as an attorney when I first notice symptoms. Fortunately, or unfortunately, I told my director once I had a diagnosis. Though I had no problems at work, was respected by judges and was president of the bar association, my director told me he had to let me go. I knew that was not true. I knew I could have fought it, but after considering my options, I decided to go on disability. I have no regrets. Love being retired and enjoying every bit of the time I have left, and receive a great deal of satisfaction as an advocate for a cure.
It is amazing how many people, myself included, define ourselves by what we do, instead of by who we are.
My sister was recently diagnosed with either EOAD or Frontotemporal Dementia, they're not sure which. She is 53 yrs. old. She periodically has phantom smells. These are very bad, noxious smells that are very upsetting to her. Has anyone heard of this or experienced it? Also wondering if there's anything that can be done about it.
Yes, people with Alzheimer's and other disorders can experience problems with smell. Here is a document describing smell disorders:
Welcome, irembudunoglu. You have come to the right place for information and support. We often have international members. I'm sorry your mom is dealing with dementia. Do your best to be understanding of her and to make her life easier.Here is a link to newcomer information:
http://www.alzconnected.org/discussion.aspx?g=posts&t=2147499795 There is a feature of dementia that causes a patient not to be aware of her disease. It is called anogosnosia. There is an article about it in the newcomer information.
http://alzonline.phhp.ufl.edu/en/reading/Anosognosia.pdf There is a board where you will find more members caring for their parents. If you go back to the main board, click on the Caregiver's board. When you do, feel free to begin your own thead by clicking on the green tab, "Add Topic". You can introduce yourself to the other members and tell more about what's going on with you and your mom.Keep reading and keep posting.Iris L.
My husband was diagnosed at 55 - just 2 years ago. I have read a lot just to try and understand. best comparison I found - we have fallen down the rabbit hole. (Alice in Wonderland) Trying to work (I am 53) and have a life and still respect and love him are tough. It is minute by minute sometimes - he knows I will never leave him no matter what, but he will need to go into a home someday as I work. I have developed close girlfriends to vent with - one a nurse and one with a similar situation as ours. It helps to vent. I pray and journal and cry for help from God. Nothing can explain this crazy disease that robs us of the ones we love. (My in-laws both have it too) It is not our spouse who is standing there yelling and accusing us of whatever. It is this horrible disease that takes over and controls them. We need to pray for each other often. Some days we just lose it!
Hello, this is my first visit and our story is so similar to everyone elses. My husband was diagnosed in 2010 at the age of 60 but he was fired from his job for 37 years in 2005. We still have not recovered from the financial damage. When we first where told what was wrong I kept waking up thinking I was having a bad dream but after months and months I finally had to except things. my husban acts like he has accepted it and does not want to discuss it? Just like so many others I had to start becoming proactive and get things in order, dr's - financial advisors- elder attorney = disability and so on and so on. I did so much in one year that I became so overwhelmed I almost had a breakdown. It's been 4 yrs now and my husband is doing ok but lately he is not seeing himself in the mirror and keeps telling me there is someone watching him. He still can dress and take care of personal needs with some help. I try hard to focus on the positive things and not what is lost. I have an agency that stays with him during the day so that I may continue to work but it is very expensive and I am scared thinking about the future and how I will handle everything as my husband keeps getting worst.
There is a book titled Learning to Speak Alzheimer"s and it has helped me alot. Does anyone know of any other books that may be of help. This site has also helped me to realize we are in this together. Take Care and God Bless
There are lots of books out there but one that helped me was "The Alzheimer's Action Plan". I have Early Onset Alzheimer's and it helped my wife and I understand all the things we needed to do to prepare for the future and live with the disease. It is a really good book.
Another one I found useful was "Alzheimer's Early Stages". Not sure what stage your husband is in but this was useful for me. I still review it when I'm having trouble in a particular area like communicating or decision making. It also has sections on care giving and care for yourself.
If you are looking for something positive to help your spirit, I wrote a devotional book called "God Still Remembers Me" that has devotions for every day of the year organized around weekly topics of interest to Alzheimer's patients. I've received lots of good feedback on it so far. It is something your husband could read as well if he is interested since the devotions are short and easily understood since I wrote them that way.
These books can be found on Amazon.com or BarnesandNoble.com.
God Bless, Paul