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I Have Alzheimer’s or Another Dementia
May I ask looking backwards what you now know were early signs of Alz or another dementia?
I haven't posted in this forum before though I post in the caregiver forum pretty frequently. I'm the 46, and my mom, 76 is in stage 6 of Alzheimers.
I'm sure like many other family members with loved ones stricken with this disease (or another dementia) I am worried I will get this disease as well.
I am having memory problems and sometimes I feel like there is a blank moments in my brain, for example, when someone asks me a question, I kind of panic because it's like I literally can't think in that moment, not that I can't remember a name or place, but I actually can't think is the best way to describe it. I usually recover but it worries me. I forget names often (though have all of my life really) and struggle pretty frequently to pull the right word out of my brain, which frustrates me greatly. I also find it harder to read than I use to.
My doctor (GP) thinks it's stress related. She could be right, the last two years of my life have been the most stressful of my life and I don't sleep enough, but I'm worried and I think I should go for a brain scan of some kind.
Anyway, I know you are all dealing with this and I'm truly sorry. If anyone of you are willing to share, (and I totally understand if you dont), I'm wondering if you noticed things happening with the way you think or other signs that now make sense since your diagnosis.
Again, I pray for all of us effected by this disease and for the cure that I hope will be announced any day. I wish you all well.
Thank you for your thoughtful inquiry, Maggs. My memory loss journey has been long. In the beginning I developed amnesia--my mind went blank about things that I knew I should know, which were the knowledge of my profession. My knowledge base vanished, seemingly overnight. I had no problems with ADLs. That was in 1987.Fast forward to 2003. I could not figure out how to do my taxes, which I had always done before. I could not figure out what to do with the figures--what did they mean? I couldn't figure them out. The startling thing was, I couldn't figure out what to do next. This was an example of executive function impairment, although I did not know that at the time, because I had never heard of executive functions.Fast forward to 2007. I went to my internist and told him I was having trouble functioning. He was CLUELESS, and asked me about hobbies. He had no idea how to approach me. I was having trouble with my speech (couldn't remember words) amd my speech was slow. I may have been having more problems because other people began to treat me harshly, for some unknown reason.I self-referred to a neurologist in 2007, who told me I was fine. In 2008 I got a referral to a dementia specialist, who initially reassured me that nothing was unusual, until the results of my neurocognitive studies came back from the neuropsychologist with severe deficits for my intellectual and educational level. My diagnosis was cognitive impairment nos (not otherwise specified) and depression. There are several gaps in the story because it has been a long journey with many medical investigations and diagnoses, many of which impact my cognition, including lupus, Hashimoto's thryoiditis, anti-cardiolipin syndrome, anemia, hypertension, diabetes and sleep apnea. My diagnosis is not dementia or Alzheimer's (yet) even though I am on Exelon patch and Namenda and responding positively. (Thank God!) I follow Best Practices and keep praying that my progress will continue to improve. I am doing well, although I am still symptomatic. I am not cured. I am stable and functioning independently. That is my goal, independent living.
To answer your question, things happened to me that were memory/cognitively related, but the doctors were not aware of it in those years when they first began happening. There was no diagnosis of MCI at that time. Even if there had been, what could they have done? There was no Exelon patch or Namenda until a few years ago.My saving grace has been finding the neurologist that I found and coming to this board and learning from the members here what is going on with me. I learned to put the pieces of my cognitive history together right here on this board. It wasn't easy. I'm still learning.I have Alzheimer's disease in my family. I don't know what my future will bring. I try not to dwell on the fears of the future, but I think only of a bright future for my old age, as bright as old age can be. I don't want to be a burden but to be independent and care for myself. I want to be a blessing to others. That's what I hope for.Scattered memory lapses is not a symptom of Alzhiemer's disease, but of many things, of which stress, which can be also termed "overload" is a huge component. Check out all medical conditions that can cause memory loss and check out your medications. Improve your health habits, including eating, exercise, and getting enough restful sleep. Read the 10 Warning Signs of Alzheimer's on the main web page alz.org. Make whatever financial and legal preparations you would need in case the worst happens. You don't know if you will develop AD and no one can tell you, even if someone tries to predict for you. I have learned that we must all respect the life we have today and make the most of each day because the next day is not promised to any of us.This is the day the Lord has made. I will rejoice and be glad in it.Iris L.
Iris, All I can say is wow, thank you, thank you, thank you, for taking the time to write out that thoughtful and informative reply. You sound very wise to me and I am going to take your advice. I don't always eat right, I all but never excercise, and I deprive myself of sleep often. I'm 46, time to grow up. Thank you for sharing your experience and I will begin following the best practices.
I wish you well and good health.
Thanks Iris! Wise words.
Maggs, AD runs in my family, so when I was driving home from work one day 4 years ago and came to a 4 way stop near my home and didn't recognize where I was, I immediately saw my doctor. After a lengthy battery of tests, no sign of AD was detected. For the next 4 months, occasionally I would find myself not recognizing where I was driving on otherwise familiar roads. Then one day I attended a family gathering. As I was getting ready to leave and put my hand on the doorknob, I found that I didn't know where I was.
The next business day, I called my doctor and told him I knew I had AD. He told me the only other option I had was DNA testing. Turned out I have the Presenilin 1 gene.
I was fortunate to catch it early. Apparently, the sooner the diagnosis and prescribing of memory meds, the longer the MCI stage lasts before dementia.
Thanks for starting this post, it has been most insightful. We believe my Mom has Alzheimer's and her Mom had it too. We are currently fighting my mom to get tested.
I worry for both me and my brother as we both have similar memory issues, just like my Mom did when we were kids..
With the genetic testing available, I have decided I want to know sooner rather than later. I don't want my loved ones fighting tooth an nail to get to the Dr.
Thanks for your insight. Since my Grandmother had Alzheimers and we suspect my Mom has it. Because it runs in my family, I have always contemplated whether I would want to know or not, but the more I read on the message boards and the ALZ site, in general, I think it is better to know.
I just turned 59. I met with an Alz specialist about a year ago. The first thing he told me was that I would have to decrease my stress or it would kill me.
My signs of Alz were:
Forgetfulness, lack of interest in activities I previously enjoyed, such as working with children who were wards of the Court, reading, writing and going out with friends for lunch and such.
I developed memory problems, seemingly out of the blue, and worsening over time. Many days, it seemed like I could hardly remember anything.
I became quite depressed. (Understatement!) I cried a lot. I stopped meeting with friends.
The situation in my home got worse and worse. My son was perpetually angry, my husband annoyed at my lack of my participation in house work, grocery shopping, etc.
And then my son committed suicide March 8th of this year.
As you might imagine, living with a 23 year old, depressed son might be a bit difficult. (Huge understatement!) Living with the aftermath of his suicide is MUCH harder.
However.... as the days went by there was a change. I still cry every single day, but since he died I have become able to think more clearly, to interact with friends, to go for walks, learn how to knit, experiment with new recipes, read books, etc. The book thing was huge! I have been a bookworm ever since I was a young child, and only recently realized how much I had missed reading.
I'm seeing improvement almost every day.
My son realized that both he and I were under a huge amount of stress. I believe that reason he killed himself was to spare me. That is a hard thing to bear, but it is softened a bit by his choice of sparing me rather than himself.
I don't get the blues. I get the opposite. I feel nothing. Apathy. Ennui. I don't feel bad, I just don't want to do anything. I have lost my interest in things.
I used to binge eat, but thanks to Mish and her challenge, I've been keeping to an eating plan and no longer bingeing, for the most part. I was sorely tempted today, but I resisted.
It's not that I don't have things to do--I have many things to do, I just let each day slip away without doing anything, then that day is gone forever. The other interest I have is in playing games on the computer, for hours. I know this is a foothold onto an addiction.
I also feel very anxious. Suprisingly, neither the psychiatriasts nor the psychologists figured this out. I won't go back to them, they wasted my time. But I need help. I don't know what I'm going to do.Iris L.
My advice to those who not only worry about getting a dementia and have experienced some symptoms, please, demand a referral to a good memory clinic or a university/major medical center that has a dementia department.
A simple 5 minute mini-menta or the 20 minute Ottowa is not sufficient, especially if you are of higher than normal intelligence, or if your dementia is not AD.
There is a book i'd advise all who worry to obtain from a library: The Alzheimer's Action Plan by Doraiswamy and Gwyther of Duke. There are many causes of dementia like symptoms, including depression, that the through tests should pick up. Symptoms could sometimes disappear with a B 12 shot or Vitamin D3.
And as Iris also wrote: do get involved with Best Practices.
And then with the combination of meds and Best Practices, we sometimes are so long in Early Stage that some people begin telling s we were misdiagnosed. Hah!
Hi Myriam. Yes, I know that hole well, and, like you, I expect it to be there for a VERY long time.
Iris, oh how I wish that my symptoms were due to depression. I was hoping that was the case, as I was, and still am, very depressed. I did see a neurologist - exactly twice. The first time he did a few tests and said "yes, you definitely have the disease, and put me on the Exelon patch. I saw him once more for about half and hour tops, and never heard from him again.
I would be thrilled to find out he was wrong, but I am not counting on it.
IThe first time he did a few tests and said "yes, you definitely have the disease, and put me on the Exelon patch.
Struggling, did you have the six-hour neurocognitive testing done by a neuropsychologist? This is a most important part of the evaluation of dementia.I'm not trying to give you false hope. Even though one diagnosis has been given, signs and symptoms may indicate otherwise as time goes on. We have to wait and see what develops.In my case, Exelon patch has helped my memory and speech, and I also thinks it acts an an antidepressant. I say this because if I miss a dose or two, I fall into a depression.Iris L.
Look at what you have written:
*I FEEL NOTHING -
*I HAVE LOST MY INTEREST IN THINGS
*I DON'T WANT TO DO ANYTHING.*
If my recollection is accurate (big IF there....) you are a retired physician, yes?
If so you already know FOR SURE that these symptoms need addressing, pronto!
Please take action. Talk to someone! You don't need me to tell you that you are on a slippery slope to the unknown.
Talk to someone on the boards, it doesn't have to be me. Just talk to someone, okay?
Thank you all for sharing such personal information. I'm deeply sorry for your losses. This forum has truly been a blessing to me. From your responses, I think I need to get tested.
I wish you all good health.
Welcome, Jeanette. What you need to do is visit a Memory Disorders clinic and be worked up by a neurologist who regularly diagnoses the dementias. Memory problems can be due to many medical causes, such as hormonal or nutritional problems. In many cases memory problems can be reversed by treating medical causes. The main web page alz.org has a section on diagnosis which will show you the steps to be taken.http://www.alz.org/alzheimers_disease_diagnosis.asp Another thing that may help you is checking the 10 warning signs. Some memory glitches are normal, some are not. This will tell you the difference:
http://www.alz.org/alzheimers_disease_know_the_10_signs.asp :Please come back and let us know how you are doing. Feel free to begin your own thread, by clicking on the "Add Post" green tab on the upper right on the main Younger Onset AD page.Contacting the Alzheimer's Association is a good idea, as Mimi advised.Iris L.
Here is the website for the Alz Assn chapter where you live:
Mimi and Iris have given you great advice. Please locate a neurologist or neuropsychologist who specializes in diagnosis of Alzheimer's/dementia. Your chapter may have a list of doctors or diagnostic centers they recommend.
You are so young and my prayer is that your symptoms are the result of something treatable and curable.
1. How did you first react when you were told that you had Alzheimer's
I only found out I had ALZ after my initial attack which took away my short term memory. I can't remember my reaction! I was not familiar with ALZ and so was lost in a learning curve for quite awhile. I spent close to a year recovering from that initial attack. It took that long to feel that I was near my normal lifestyle.
2. Have you noticed any differences in your daily routines?
I haven't really had any daily routines since contracting this disease. My doctor gave his diagnosis to my wife who is my primary/only caretaker. We came home and started living with it. I have been retired for several years and was never a person of "habit"; very undisciplined but responsible. Was a manager in the computer industry; I purchased, installed and maintained up to maybe 100 PC's. I'm vague there because I was employed by a corporation but worked primarily with subsidiaries.
3. Do you have a daily hobby you do or at least think about it when you too busy to do that certain hobby?
My principle hobby is computing, It was also my career for 30 years and continues to be a hobby.
4.How have you learned to cope with the idea of having this disease?
I'm still in the early stage of the disease and my life really goes on as it always did.
5. Have you noticed any memory loss?
Definitely, in the short-term range.
6. Around what age were you diagnosed?
7. Do you have anyone who takes care of you 24-7?
8. Have you ever thought of putting yourself in a nursing home?
No! We know that ultimately I will totally lose my mind and now know who I am. I won't recognize my wife or son. We have discussed what to do at that time and my choice is to let my wife make that decision. It will be a very difficult time for her and I want her to make that decision based on the situation at the moment. Whatever she decides is fine with me. I will be basically brain dead at that time and should have no voice in that decision. I love my wife and trust her to do the right thing.
9. How many medications do you take to help with this disease?
I take two, the primary is Namenda.
10. Are these medications affordable or non-affordable for your income?
I don't know! My wife handles all the family business. We have medical insurance.
Age: 78 and still clear minded and able to think for myself.
I am dreading the time when I lose control of my mind. That will place a huge burden on my wife and it is my wish that she finds a way to get clear of the responsibility as much as possible. My thoughts are that at that time I will be so far gone that I won't know or care what happens. I must place myself entirely in her caring and loving hands.
No! We know that ultimately I will totally lose my mind and now know who I am. I won't recognize my wife or son.
Jereo, we are all learning as we go along. I truly believe that the condition of dementia will be different in the future, because so many of us are learning about the unknown early, and taking steps to deal with whatever confronts us. Dealing with fear is a huge part of this.Another member posted about books for patients. I listed several in that thread. Here is a link to that thread:http://www.alzconnected.org/discussion.aspx?g=posts&t=2147501798Remember, books are only part of the answer. We have to learn from each other and come to our own awareness of what will guide us.I also like what alz+ said at the bottom of this thread:
Like John50 above, I have very little problems with my memory. Mine is all executive functioning issues and the atrophy is in the frontal lobes.
I had to retire early from my administrative secretarial job because of the confusion in my head. I was sure I had a brain tumor. A year after retirement, I finally went to see my doctor when I couldn't figure out how to put my denture back in my mouth.
The CAT scan showed abnormal shrinkage of the frontal lobes, and I was given a diagnosis of alzheimers. Further testing pointed to possibly FTD.
So, whatever they call it....I'm still doing great, as long as I don't try to do too much at once. Slow is good!
This was really helpful to me, too. I also went to a Neurologist that told me I am fine. I didn't know I could escalate it.
It's probably a good idea for me to see a Neurologist that specializes in this. Thank you for letting us know that is an option. Although I am kind of scared to find out. I would, in some ways, pretend that it doesn't exist.
Incidentally, this is my first time using this forum. If I had severe memory loss, it would not be easy to write posts. I have to say this is the hardest forum to navigate that I have ever used. What's with that?