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Thanks to all of you for your candid comments about the importance of early diagnosis and the need for more supportive services after a diagnosis.
I just completed delivering another session of a program called HABIT (Healthy Action to Benefit Independence and Thinking). Persons in this program have a diagnosis of mild cognitive impairment or early stage Alzheimer's disease. Many of these participants talked about the challenge of having their memory concerns validated and receiving a clear diagnosis. Fortunately, these folks were able to get a diagnosis early and are pro-actively taking steps to compensate for their impairment and possibly slow down decline.
I feel strongly that persons are empowered when they receive an early diagnosis. They begin to understand that the changes and challenges are likely part of a disease process — not a lack of effort, motivation, or sign of weakness. An early diagnosis offers the patient and their family time to arm themselves with knowledge and take full advantage of existing strengths. And early diagnosis allows for psychiatric symptoms such as depression to be identified and treated. I don't want to imply that an early diagnosis provides individuals and families with rose colored glasses (nobody wishes for the diagnosis and the journey will not be easy), but instead it does help them with an understanding and a plan for whatever the future will bring.
If you're concerned about memory changes in yourself or a loved one, the Alzheimer's Association has a document that can be helpful to complete and take to your doctor. You can find the checklist on the Resources tab above, and a link to the Mayo Clinic memory training program.
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I have had increasing anxiety over forgetting what I came into a room for, recall of my social security #, peoples names,etc. With the exception of names I recall the data quickly after the question has been presented. My hand writing and spelling is getting worse. I just turned 62. Shoul I be concerned?
Are ther different levels to this? Someone asked me that does not have access to the internet and told her I would try and find out. If all possible let me know lpease?
How can you stop or just not feel so angry al the time? After being a caregiver for a loved done with this damned disease for many years.
I'm 53 and I am angry as hell, it isn't supposed to be like this. Yes my neuro psychologist has her hands full!!!
I was diagnosed early onset Alzheimer 2007, the decline, hitting us hard depression gets worse. But the best thins I started taking University class, just one, at time, to hope it slows the disease. Today I receive letter from Social Security Judge, declaring Alzheimrrs isn't life threatening, or disabling!
Which of us is confused?
If one goes to their doctor and finds out they have MCI (for example) doesn't that preclude getting Long Term Health coverage?
I was 54 when our Dr did the gene test, my mother had just pasted away with Alzheimer’s. He said he wanted to do some tests, I said sure. What I wasn’t ready for was when his nurse called to set up a visit in his office. That’s when the bomb dropped; the report showed I had an 80% chance of having some sign of Alzheimer’s before my 60th birthday. (What the Dr didn’t know was I was adopted). Well this changed my life. I brooded for a will trying to decide what to do. I tried to buy long term health care but the test showed up in there research and I was turned down. I up dated my Will changed a lot of my finances, to protect the wife and kids from the extreme cost of having Alzheimer’s and to beat the laws on long term care. I retired at 55 I’m keeping my grand kids after school and in the summer. We are going on vacations and having a ball. I may or may not end up with Alzheimer’s but I’m not going set around and wait for it. Were planning one year at a time, and will leave the rest up to God.
My mother was diagnosed with early stage late onset alzheimers about a year and a half ago. She is taking aricept and namenda. Her confusion has cleared up remarkably and I have seen no further signs of decline. My father is 97 and in really good health considering his age... still drives, walks the track at the local health club, but still at 97 we know he has congestive heart failure and had a stroke over ten years ago - so whe I say he is in good heath I use the term because he is so atypical from the norm at that age~ There are no adult children living in their city and I am the closest at 100 miles away. We have encouraged them to move to our town where my brother (who is a physician) also lives. I know my mother wants to move but my step father refuses. I can't blame him for not wanting to leave his familiar surroundings.
I feel strongly that we need to get them moved before its too late.... I am wondering who out there has been through this part of the journey and how you convinced a parent to move.
Selfishly, I want to be able to spend time with my mother while I still have "her" - so much left to learn from this wonderful lady!
I posted about three weeks ago. I visited with some people I used to work with and they told me that I seemed less disorganized. I attribute that to galantamine. Hurray! Thinking too much makes me SO TIRED so I guess that's a good reason for completely closing down my business. Walking up and down hills has really increased my energy level, unless I start trying to think too much. I am feeling pretty optimistic right now.
To Pat, My doctor also encouraged mental exercise. I'm doing Karuro puzzles, which might be in your newspaper. If not, go to www.krazydad.com/puzzles I also took up piano again (combines brain and physical coordination) as well as daily walking. Life is sure different not working... but it's good to not be exhausted.
62 yr and praying for many more years - Kathy
I was diagnosed in March 2010 with Dementia with Lewy Bodies at Mayo Clinic in Rochester, MN. I am doing very well with Aricept and Mestinon, exercise, aqua therapy, walking, reading and researching about my condition and preparing for my future when I am no longer to make decisions on my own. Actually, I am now better than I have been for 5 years. My driver's license was taken away, but I have since retested and have gotten it back. A question I have for anyone to respond to is.....what's all this talk about some special kind of water AZ patients should drink? I'd be very interested in knowing what it is as I have accepted my condition and am doing everything possible to slow the progression. Any adivce would be appreciated. BTW, I am 66 years old.
I'm "just" 62 and have just been diagnosed with early Alzheimer's d/o. I realized I was having trouble with my memory but chalked it up to stress, as I have been in excellent health. Well, stress was part of it, but not all of it. I have a PhD and am making plans to reduce the stress (and workload) and and also take lots of notes to compensate for my memory problems. (If I can get things on paper, at least I can read them to remind myself!-at least now) Fortunately we live near a university with a large neuroscience dept, and the doctor (who specializes in dementia) has been very thorough and helpful. No hesitation to order MRI and PET as well as neuropsych eval. He recommended certain kinds of memory "exercises" and activities based on research in slowing the progression of AD. (I'll personally continue doing Kakuro puzzles which I just discovered, brush up on the piano, and start walking the hills in our neighborhood.) He's also started me on galantamine and is adding one medication to it. (Can you believe I forgot its name, but my husband wrote it down.) I am not stopping work yet, but am decreasing it!
My mother had dementia for many years, but we called it "atypical" as it did not seem to fit any particular kind as she had had surgery to remove a growth in her brain. That may have been combined with Alzheimer's. I sure don't want to end up like that. Guess I'll just have to trust God.
My sister is 50 and 3 years ago she was diagnosed with early-onset alzheimers , is this rare at this age? She is obsessed with what the time is and the days of the week and neither is making any sense to her, indeed she has problems with anything numerical. She cannot work any longer nor drive a car. She stares into space and cannot hold a conversation. She is reluctant to wash and refuses to wash her hair. Sometimes she walks her dog 5 times a day as she has forgotten she has done it. She is becoming very stroppy. She has lost interest in everything and has little concerntration. She is on 10g aricept daily , what is the maximum doseage please? Also are these typical signs of mild oo moderate disease i.e. stage 1 or stage 2.
Lois, I read your comment and applaud your efforts to educate others about your diagnosis while so many healthcare professionals refuse to. You have accepted your diagnosis and for many that is the first step that needs to happen. You have armed yourself with knowledge about what is the latest data known. There has recently been studies that have identified two proteins in the cerebral spinal fluid that are hoped to be early markers for the diagnosis. If this proves to be true then earlier diagnosis might be made and further research based on these genetic markers could be done. Family members are sometimes the hardest to convince that something is happening to the person they love. I witnessed how my mother-in-law's diagnosis fractured her family. My sister-in-law could not accept that her mother was slowly slipping away yet did not make an effort to come to see her more often. When her mother didn't recognize her any more she stopped coming to see her. Each person deals differently with stress in their lives. Some accept the challenge and do everything they can to meet it face on. Others refuse to accept the inevitable and ignore the obvious - almost like if I don't see it - it isn't happening. The loss at the end is therefore all the more devastating. None of us knows how many days we have on this earth, some have many and some have few. Our job is to do the best with what we're given and you, Lois, are definitely making the best of what life has given you.
My wife is losing her memory rapidly.
1. Kaiser insists on memory tests and anxiety medications. How do I get Kaiser to perform for diagnosis of Alzheimer's?
I am told there is no such diagnosis.
2. My wife developed jerks and shakes while she sleeps. I cannot stay in bed with her.
Is this a common Alzheimer's effect?
Laurel: Thanks for your kind words and your suggestion. I don't try to point out shortcomings. I know I worded that wrong in my comment. However, when she says things like "What makes you think I haven't taken my meds?" I will show her the medication box is still full from the last day, for example. When she says "What makes you think I have memory problems?", then I answer her and reflect on things to answer her questions. We used to call her Aricept and Namenda "brain power pills", but, our Internist suggested being point blank and use the word Dementia. I don't say to her "You have Alzheimers" but I now use the word Dementia. I tell her that the medication will help slow down the progression of this disease and that its an illness just as hypertension or heart disease. She is simply the type of individual that has ALWAYS thought herself one ring up higher on the ladder than anyone else. She has always put HER wants and needs ahead of everyone else. This is just the type of lady she is. She will do good things for her friends, but, she expects something in return. Very sad to be that type of person, which I why I mentioned the 3x weekly church attendance because one would think a practicing christian would not be so self-absorbed. Maybe its the difficult childhood she experienced and now she is on the other end of the spectrum. But, the disease has exacerbated her self indulgence. I thank you for suggesting rereading comments on this
Brenda, your mother sounds like my husband. I used to point out his shortcomings, but just to convince him to go to a doctor. He finally went to a doctor for another reason, got diagnosed and is on Aricept. Now that he is on medication, I no longer point out his failings, but instead make excuses for them just as he does. I also mention that I am forgetful also. As long as he is taking his meds, I never mention that he has a problem. Since what you have been doing doesn't work, but only angers your mother, I would recommend that you change your tactics and try reassuring her. The most help I have received has been from these blogs. I went back and read every one of them and took notes. Scattered among the blogs are some wonderful guidelines and helps from those who have gone through the experience.
I am so impressed with those of you who have the AD diagnosis and are willing to talk about it. My mom was diagnosed last October. She takes 2 meds for this condition. She is in complete denial, thinks I am "convincing" all the doctors. I am a licensed Social Worker in Michigan, her only child and our only daughter lives in Ann Arbor. My husband, our daughter and family are very close. However, my mom has ALWAYS been self-centered, negative toward others and demanding. This has exacerbated with the diagnosis. But, her not willing to accept this is extremely difficult. She has a pacemaker and denies having heart problems also. I set up her meds weekly, and keep taps on her. But, she lies to me about life issues, denies she has any problems and when I point out some of the shortcomings (to "convince" her), she is even more hostile. Yet, she claims to be such a christian and attends church 3x weekly. I am at my wits end on how to deal with this. We love our Internist, but, she just says "There is no changing an 82year old woman". All my Social Work skills and what I used to tell families in my Alzheimer Association support groups goes out the window dealing with my own mother!
Angela, what you're about to read will come as no surprise: I agree with everything you wrote. I just wish that local branches of The Alzheimer's Association around the country would be more pro-active in reaching out to those diagnosed with early onset or in early stages to help them through the process of accepting, internalizing, and dealing with that early prognosis! I think THAT is the most crucial period of time in the life of a person diagnosed with AD ... and in the life of an AD spouse. THAT is the time when their worlds are turned upside down and very important decisions for the future need to be made. Whereas I recognize and applaud The Alzheimer's Association for providing activity based programs for those with moderate to severe stages of AD, and programs and respite care for stressed out caregivers for those in moderate to severe stages, The Alzheimer's Association is simply not fulfilling its mission when it devotes such scant resources to those who are in the earliest stages. Ironic, too, because THAT is, in my opinion, where the greatest need is! But that's just my opinion!!
My dad fears "IT" (Alzheimer's--he won't even say the word) as a death sentance, since he saw several wonderful friends waste away with it. For 3 years, he's had MCI, but recently his neurologist implied that he has now actually slipped into early Alzheimer's. Only I caught it; my mom didn't understand or is in denial. Do I press the doctor to tell them directly at our next appointment, or are they better off as they are?
Hi Carole and others, I seem to be lost somehow...I responded to a letter from you, I think, and now can't find any of the letters I was reading before. Is there more than one place where people post comments?
IN what ways should on change the diet and the drinking water of someone with early AD? Lois talked about this and I would love to have this information. Thanks.
Just to continue. I believe that it is important for all family members to attend any discussion on the affected member's diagnosis. Otherwise those who are not part of the process will not fully understand the potential issues and ensure the safety and well being of the person with the diagnosis. We will now make sure all are in attendance and participate in the discussions to ensure we are understanding the issues and concerns of the patient. This information that is available on the internet has proved very valuable.
I just wanted to say that my sister & I had noticed some signs in my Mom. She is 86 yrs old and was becoming very repetitive when we were in conversation. She also was forgetting to go to events or forgetting invites to dinner, parties, etc. She also was very negative and seemed depressed. My sister and I took her to the Memory Clinic in Whitby, Ontario. She was very nervous but I attended with her. There were 2 3-hour sessions and then a feedback session with my sister & I. They indicated that she had MCI also known as early Alzheimers. My mom who had been very independent up until now had now lost her licence as the diagnosis had to be reported by the doctor. The first month of her diagnosis she became very distraught and depressed. The doctors including her personal physician suggested that she consider moving into assisted living while she could still make the decision. This put her even further in distress as she has her own home. Two weeks ago we took her to the doctor to see if she needed something to help her sleep. They gave her an antidepressant and she has improved considerably. She has even mentioned that perhaps we should start looking for a place for her where assisted living is available. She should be able to go to one where she has her own private apt but meals and meds are provided until she needs fully assisted care. Some of the family (5 siblings) think she is fine. The next appt at the memory clinic all 5 siblings will attend.
It is so important to know the signs early. We saw a lot of signs in Pat, but didn't fully understand what it was, until she injured herself. Alzheimer's has changed my life. I have never been around someone with AD before. While it can be sad and stressful at times, i wouldn't change a thing.
I have early inset and I can agree 1000% that many of us are empowered. Lou
I somehow missed your earlier sharing. can you again share the early signs and symptoms so we can learn from you and share with others for early diagnoses. You seem to be a jewel in this chain of communication, educating and encouraging so many. You will leave a legacy. Let us hope and pray we see you on NBC's Today show SMUCKER'S 100 year old birthdays someday. working all together and sharing, we will someday reach that goal for many.
You are an inspiration and have so much courage. i hope we can continue to share your journey as thing get better , heal, or progress. I am curious about the change of water you drink.
How is it changed?
I am a nurse who have several people, family and friends who ask me about alzheimers and I choose to research it to implement early diagnosis and the best interventions to suggest and educate others, as well as my husband and myself.
It concerns me that Drs. are so reluctant to order a PET scan, one of the miracles of diagnoses in our lifetime. Many praises for your Dr.
The best to you in your journey.
Thank you for leaving a legacy of wisdom behind as you may have to move on someday. We pray that you overcome the odds and move forward!!!!
THANK YOU LOIS FOR SHARING WHAT I WANTED TO SAY. YOU SAID IT ELOQUENTLY. IT IS HARD TO SHARE WITH THOSE WHO ARE NOT 'IN THE EXPERIENCE' AND I, TOO, LIVE WITH OPTIMISM....NOT DENIAL, BUT OPTIMISM. RECENTLY I SHARED WITH OUR CHURCH FAMILY SO THEY WOULD UNDERSTAND THAT I DID NOT HAVE BAD MANNERS BUT A CONDITION TREATED WITH MEDICATION. THIS PROMPTED ONE PERSON TO SEEK DIAGNOSIS FOR HERSELF. WHAT A BLESSING. I THANK GOD DAILY FOR MY HUSBAND, MY FAMILY AND MY DOCTOR. AGAIN, THANK YOU LOIS.
Thank you so much for these comments. I knew I had signs and symptoms of AD for at least 2 years, and with a strong family history of it, could there be any doubt? Yet, I often thought I worried without reason and had anxiety. I finally asked my doctor for a PET Scan which said, "mild to mod. AD."
While I don't want the disease, I've been very relieved to have the dx. Maybe it just validates what I knew to be true. I'm a changed person now. I do what my drs. say. I research everything about it. I changed my diet and the water I drink. My creativity is better than before. Sure there are bad days, but I focus on the good and make the most of each one. I love life, and I made a decision not to consider myself a victim. I'm trying to prepare my daughters for when I need more help--they still don't get it, but I try. I still write professionally and edit other writers' work--one year after getting the diagnosis and three years after knowing within myself that I had the symptoms. I do enjoy the surprise when people declare they can't tell I have AD. Even my doctor says I'm not progressing negatively the way his other patients do. And he's known me for 15 yrs. and saw my mother through the disease.
I'm not so naive as to think I can go on like this for too much longer, but I'm going to fight it as much as I can. Perhaps the things I do are overkill, but I'm determined to continue on with them.
There's no way I can win except to live every day to its fullest.
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