Iris' story + MCI
I want to provide the long version of my story. Perhaps some members can get some knowledge from what I have been through.
I was well until I became extremely fatigued in early 1986, at the age of 36. I thought I must have been exposed to a virus, although I did not develop a fever until mid-1986. In late 1987 I noticed memory loss. I had to stop working. At that time, I thought I was experiencing burnout, because that was a common theme in those days. My diagnosis was anxiety-depression and I was started on anti-anxiety medication. I expected to return to week after a month's rest and recuperation, but I was never to return to work. For several years I had various testing and my diagnosis remained anxiety-depression.
In 1993 I was diagnosed as having systemic lupus erythematosus, which is noted for fatigue and memory loss. I responded to medication for lupus. During this time I was treated for antiphospholipid syndrome, Sjogren's syndrome, Hashimoto's disease (hypothyroidism) snd hypertension, all of which can cause fatigue and memory loss. At no time was mild cognitive impairment mentioned, I don't even know if that term was in use in those days.
In 2003, at the age of 53, I noted that I could not figure out how to prepare the paperwork for my taxes. Again I was tested, and the diagnosis was depression and lupus. By 2007 I told a new internist that I was having trouble functioning. I has to find my own neurologist, who was able to obtain a PET scan and said I was okay. In 2008, I was referred to my current neurologist, who us a researcher for the dementias. He sent me for neurocognitive testing and several deficits were noted. Then I received a diagnosis of cognitive impairment not otherwise specified. This means that the cognitive impairment is not due to the common dementias, but due to other diseases. But since depression was also included in the conclusion, he prescribed an antidepressant, which had no effect.
During this time I had begun to read the threads on this message board. I read every thread on the two patient boards, and just about every thread on the Caregiver Board. This took me about three months. A caregiver member had posted about a PWD using the stove. I joined immediately, because I had been having trouble with burning food and leaving the lit stove unattended. Two wonderful caregiver members gently advised me to stop using the stove. I credit these two members with saving my life, because they prevented me from starting a fire in my home!
The neurologist had given me a trial of Exelon patch in February, but I did not begin until May, because I thought it would be confirmation that I had Alzheimer's Disease. But when the caregivers advised me, I knew I had to do something! So I applied the patches, and within a few days, I began to notice improvement in my speech and in my memory. When I return after 30 days, I asked for the higher dose of Exelon patch, and I have been on it ever since. A geriatric doctor prescribed Namenda, which I began in July of that year, and I am now continuing with the generic version.
My neurologist continued periodic neurocognitive testing, once with the neuropsychologist, and other times by computer testing. He determined that my cognitive results were basically stable. A few years ago, he enrolled me into a clinical trial so that I could obtain an Amyvid PET scan. This scan showed no abnormal amyloid deposits in my brain, so my neurologist said that I did not have Alzheimer's Disease at that time.
This brings me up to today. I continue on Exelon patch and memantine, with a diagnosis of cognitive impairment not otherwise specified. There is more to my story which I will continue later.
Iris
Comments
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Iris I would do a search on SNAP - Suspected Non Alzheimers Pathology
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Lost, thanks for mentioning SNAP, I never heard of this. I read briefly tonight. I did not have a cerebral spinal fluid examination. I will have an appointment with my neurologist in two days, and I will ask. But I believe my deficits are due to a different cause.
Iris
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Hi Iris,
My symptoms almost mimic years with exception of:::I have rheumatoid arthritis,
Sjogrens, Hashimotos, and major depression with anxiety.
Now I have dementia, MCI. (2021). On Aricept. Just had neuro cognitive testing with neuropsychologist yesterday. Will know results in a month.
Ya’ll I am going it alone. I am 73. Estranged from my two children. They know but are not interested.
I live in an independent senior living facility.
I have approached the bank to send out checks for my bills.
I have a will, executor.
I have two pets. They will go someone I know and they know when the time comes.
I am trying to have everything taken care of.
Oh, my medication comes by mail on appropriate dates.
WHAT AM I FORGETTING??? Please help0 -
You may want to talk to a CELA (Certified Elderly Law Attorney), they perhaps can suggest someone to be hired as a fiduciary and/or conservator for you. They can help see after your finances and decisions on your care needs. Others who are more knowledgable can elaborate. Someone recently suggested this might be an option for my DB.
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I wrote this last night but somehow it didnt post.
My neurologist ordered genetic testing and I tested positive for the APOE4 gene, which means I have an increased risk of developing Alzheimer's Disease. At the time, the report came back stating that a positive result, along with my cognutive symptoms, confirmed a diagnosis of AD. But that was not the case. My neurologist does not like to diagnose dementia unless there is imaging evidence of decline, such as small hippocampus or enlarged ventricles.
At the same time, he told me to get my blood pressure under control, because it was elevated, and hypertension can cause brain damage. In fact, in order to be eligible for cognitive rehabilitation, my diagnosis was written as anoxic brain injury. I had cognitive rehabilitation for about three months at the rehab hospital, without any improvement.
In my readings, I read that 1/3 of MCI patients will return to normal, 1/3 will remain the same, and 1/3 will progress to dementia. I don't know if these numbers are precise, but the point is that some people will get better, some will remain the same, and some will worsen. IMO, it is best to do extensive testing, in the chance that there might be a treatable cause. In my case, there were two additional illnesses that my neurologist thought might be causing or contributing to my memory loss and cognitive changes. The first was chronic fatigue syndrome, also called myalgic encephalitis or SEID (systemic exertion intolerance disease). He referred me to an infectious disease specialist, who tested me and found a specific virus but said he had no treatment other than Chinese herbs, which I took for about three months. He was a researcher in CFS, but when COVID19 came along, all CFS research was stopped.
The other disease that my neurologist considered as a cause of my memory loss and cognitive impairment was sleep apnea. I didn't believe at first, because I did not snore and I did not wake up gasping for breath. But my overnight sleep study at the hospital sleep lab showed that I had sleep apnea. Sleep apnea causes low oxygen levels in the brain and causes memory loss and cognitive changes and causes chronic fatigue. I began using CPAP to treat sleep apnea and I did notice some improvement in my memory and in my overall functioning.
When new members join, I always ask if they have been thoroughly evaluated to rule out all treatable causes of memory loss. I'm so glad my neurologist is thorough and persistent. But this almost didn't happen. At first, he told me that I could be followed by my PCP. But the PCP refused to prescribe Exelon patch and Namenda, so I returned to the neurologist. It's a good thing I that did, because he continued to test me and to offer treatment.
Iris
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Welcome dlubtitz. You are doing the right things. What I am trying to display in my story is to expand about MCI. There are a lot of moving parts, things to consider, even if it is not Alzheimer's Disease. All of the auto-immune diseases involve some degree of cognitive changes. But no one provides any help or guidance. I only got real advice after I came to these message boards.
Iris
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Iris, I'm very curious about your statement, "All of the auto-immune diseases involve some degree of cognitive changes." My personal history is that I have Ulcerative Colitis. I also have sleep apnea. I have to admit I did a lot of traveling in my early retirement years and traveling with the CPAP machine got to be a real bother, and got to the point where I stopped using it. But, but to the auto-immune diseases. I don't recall being told there would be cognitive changes related to the UC. I've had the diagnosis since about 2002. Could you tell me more about this?
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Wow, a key word search lead me to: "Background: Patients with ulcerative colitis (UC) usually display cognitive impairments, such as memory loss, attention deficits, and declining executive functions, particularly during the active stage of the disease. " I guess I have some reading to do.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6457314/#:~:text=Background%3A%20Patients%20with%20ulcerative%20colitis,active%20stage%20of%20the%20disease.
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@Iris L. Thank you so much for sharing your story here. My DH also has SLE and sleep apnea and your statement about cognitive issues in autoimmune patients being almost ignored (ie. no help or guidance) is 100% true. The VA released my DH from neurology care since they determined the source of his issues was SLE/cardiovascular and not a neurodegenerative process. Luckily he also has private insurance and they have allowed him to stay under the care of a neurologist otherwise no one would be overseeing his cognitive issues at all. This board has been very helpful to me so I can help him get the help he needs.
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I just returned from a visit with my neurologist, who does research regarding the dementias as well as being a practitioner. I asked specifically about SNAP- suspected non alzheimer's pathology. He says that is related to tauopathies and othe pathologies that are neurodegenerative. I do not have this. My problem uis related to white matter disease, which can be affiliated with cardiovascular issues or auto-immune issues. He is ordering some new blood tests which are biomarkers. I'll post the name of the tests later.
The blood tests that my neurologist ordered are: plasma nfl and P-tau217, these are new biomarkers.
CS, perhaps your cognitive issues are mild. I have attended many support groups and attended many conferences for patients with autoimmune diseases and talked with a lot of rheumatologists. All the patients complained of memory troubles and "brain fog". But I never met anyone who is as afflicted as I am, certainly no one who is using Exelon patch and memantine. At one time my rheumatologist told me, "people with lupus can't do anything!"
Belle, I am going to write more about the lack of attention to the cognitive issues of people who do not have Alzheimer's Disease. I'm glad your DH does have a neurologist who is attending to him. Is he on any medication?
Iris
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Iris, I think I'm more in tune to any 'glitches' per my brother's diagnosis. Reading what you posted, and some of the support, there's no doubt that with UC (a subset of IBD), I have an elevated risk. But numbers can be funny. One study showed I would be at 5 times greater risk for AD than the general population…but the numbers sited were around 1 pct for the healthy control group, and around 5 pct for those in the study with UC. Part of me wants to put a call in to the GI to see if he monitors his patients for this, but the other part says, even at 5 times greater risk, it's still 95% likelihood of not having AD. Is it prudent to ask for an MMSE? I'm not sure how to use this information.
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CS, I doubt if the gastro doc monitors cognition. Most doctors don't. If they do notice an issue, they would say it is just part of the disease. You are making me get ahead in my story. I am trying to point out that there are many possible causes for memory loss and mild cognitive changes.
My memory loss made it impossible for me to perform at my profession. You are retired, did you have to retire because you could no longer keep up? An MMSE is a screening test once you notice a problem. Alz.org has a checklist of 10 Warning Signs of Alzheimer's, you can look at that. Personally, I would not ask for a screening test until there are problems in one's life. In the meantime, check medications for cognitive side effects, they are a significant cause. Read the Beers List of medications. I have more to say about my story.
Iris
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Thanks. There were many factors that led to my retirement decision. It wasn't that I couldn't keep up. I have a strong work ethic, and being away from my desk so much to deal with the UC symptoms weighed on me. I had a very long commute,… and I figured out I could afford it (yay!). It just was no longer worth the frustrations of the work enviroment. I'll check out the 10 warning signs etc. Thanks again for your input, even though it interferred with your pacing.
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No worries, CS. I want to convey how much I tried to get to the bottom of my symptoms and why I was having so much difficulty in just living my life. People on the outside were of no help. Several professionals told me that I was asking for too much. A PCP told me, "there's nothing you can do about it, so why worry?" My friends didn't want to hear me talk about my memory loss and how I was having difficulty. I was alone, except for the members of the message boards who were very supportive and knowledgeable.
A problem that patients can run into is the variety of diagnoses for the same group of signs and symptoms. After I began Exelon patch and Namenda, I sought a second opinion at an Alzheimer's Disease Research Center. This neurologist diagnosed me as having depression, and declared that the Exelon patch and Namenda would not help me. She said she had seen it many times. But by the time I consulted her, those two medications were helping me quite a lot. So I discounted her opinion.
This university had a geriatric clinic, so I signed on. I visited a nice geriatrician, but he did two disturbing things. Since I had been complaining of chronic fatigue, he told me to drink two cups of coffee every morning. This is not a treatment for chronic fatigue. He did not inquire about my sleep quality, so he never knew about the sleep apnea.
The other disturbing thing was he said to me, "you have got to accept that you have dementia!" I tell caregivers all the time not to confront their PWDs so directly with their diagnosis, it is triggering. That statement threw me into a deep depression. I wasn't depressed before, but I became depressed. I was 59 years old and all I could think of was that I was going to die soon. But, that was not the case for me or for people who actually do have dementia. Dementias can be present for many years.
What got me out of the deep depression were two things. I kept posting and interacting with the members here, who gave me strength and motivation. I also read a lot about people with terminal illnesses, what were their wishes? They were not afraid. For the most part, they wanted to spend time with their loved ones, and they wanted to continue their usual lives, they were not interested in heroic measures. I took this to heart.
After about nine long months, I made some crucial decisions and I came out of the deep depression. I call these my three nots and a will.
- If I have dementia, I will not go out like a victim, meaning I will do what I need to do for myself.
- I will not become a burden to my family or friends.
- I will not sit in a corner and wait to die, I will live my life.
I will do whatever it takes to maintain my independence for as long as I can.
I wouldn't have made these decisions without what I learned from the members here. Now, the majority of PWDs have anosognosia, and are unable to participate much, if at all, in their own care. But the members who posted here were aware, and shared great strategies and plans for living with dementia. I learned from them and I am forever grateful!
Iris
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What was so hard for me: All of my life I had looked forward to my future. To being promoted in school, to graduating from college and from medical school, to becoming a pediatrician, to entering military service, to working with patients, to getting married and having a family, to learning the word of God. Then, all of a sudden, I had no future. Even with lupus there was hope. But the members here gave me hope. I knew there was no cure for Alzheimer's Disease, but I was told that there are things to do to help with the journey. Basically the best care is the treatment. For me this meant being serious about Best Practices, which were described as improving functioning and prolonging the early stages. Over the years, I found this to be true.
I had to change my perspective. I had to develop a philosophy to get me through each day. I began to think of myself as a Pioneer in the dementia world. Everything that I was learning to do to take care of myself was new to me, so I was a Pioneer at this time of my life. Some members objected to my use of the term Dementia Pioneer because I did not actually have dementia. But for the first few years, I did think I had some form of dementia because I had so much trouble functioning. Eventually my functioning in daily activities began to improve, based on certain steps I was taking. And after a few years, after several unchanged cognitive tests and an Amyvid PET scan, I learned that I did not have Alzheimer's Disease. My neurologist informed yesterday me that the PET scan results are good for only five to ten years.
Iris
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My New Life
My old life is over, but I have a new life as a Memory Loss Pioneer. This is what keeps me going. This is my new identity, even though I keep it hidden from the public. Some members have reported that they were well received when they disclosed their dementia diagnoses, but I received nothing but negativity.
My new life involves following Best Practices and other strategies that have I learned, mostly from the members here. I found little help in the outside world. My diagnosis of cognitive impairment not otherwise specified is somewhat nebulous, and no one knows what to do for this. Even MCI is nebulous. My new way of life involves learning to live in the present, not to pine for the past nor to pine for lost future dreams. I am happy in a new way. Happiness is not having what I want, but wanting what I have. I try to avoid a roller-coaster life, a Groundhog Day life is my goal, interspersed with Moments of Joy.
For several years I was doing fairly well, considering. But in late 2019 I noticed a change, but I thought I had been overexerting myself. But Covid came along. I feel different, but it has nothing to do with Covid. In the earlier years I had a lot of difficulty with my short term memory; now my short term memory is fairly stable, but my long term memory is fading. Details of my past are fading. My neurologist has mentioned something new, white matter disease. But I am okay! I am staying on my journey! I am a Pioneer!
This is my story. What I can remember of it.
Iris
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Thank you for sharing your story. "Happiness is not having what I want, but wanting what I have." That resonates with me.
Thank you for all the l knowledge and support you bring to this forum...and a great attitude.
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Thank you for the continuation of your story. DH's MRI's for the last 5 years or so mention Small Vessel Ischemic Disease. Not sure if that is similar to what your MRI showed?
Also you asked if he was on any meds for his cognitive issues and the answer is no. Several years ago his neurologist offered Donepezil and he didn't want to take it. He has another neuropsych test scheduled for August. Not sure if he will reconsider meds but I don't think he will.
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Thank you for reading my story, CS.
Belle, I believe that is the same condition. I had some hyperintensities on MRI. Look up leukoairiosis.
As far as the medication goes, with these psychoactive medications, the response is individualized. No one can predict how any one patient will respond. I liken the memory meds to eyeglasses. Without my eyeglasses, I cannot see, everything is blurred, and I cannot function in the real world. But with my eyeglasses, I become functional. Eyeglasses do not cure my visual deficit, but do enable me to function. This is how I regard my memory meds, they do not cure anything, but they do enable me to function in real life. I encourage all PWDs to try the memory meds and see what response they get.
I was afraid to begin using Exelon patch because I thought it was confirmation that I had Alzheimer's Disease. But I had a scary moment when I left food burning on the stove unattended, again, and I knew I had to do something. So I took a chance on the Exelon, which I had been given about three months prior. Lo and behold, I had a good response within a few days.
They also may work to enable the PWD to remain at home in the community for a longer period of time, delaying placement into a facility.
Note: I believe the memory meds are best if begun in the early stages. I don't think they are useful in PWDs who have hallucinations or delusions. They are to help memory.
Iris
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great idea! Thank you
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You're welcome. Just passing on advice I had received.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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