Lupus Brain Fog
Understanding the Unseen Realm of Lupus Brain Fog
by Kim Nault ©
First published in The Lupus Magazine
An estimated 70-90 % of SLE patients will experience the infamous lupus brain fog. This is the most common form of central nervous system involvement in SLE and can be mild to severe, and vary from person to person. The lupus brain fog is classified as a manifestation of organic brain disease and is of one of the 19 manifestations of NP-SLE/neuropsychiatric SLE that has a broad spectrum of manifestations, including psychiatric disorders and neurological syndromes of the central, peripheral, and autonomic nervous systems. Each manifestation is vast and complicating and far outside the scope of this sole article.
Sadly, the actual field of NP-SLE is still in its infancy, there is not much research done on this vast topic and not too many doctors fully understand this form of organ involvement. Many assume that the brain fog of lupus is just some quirky annoying problem, that it is not that bad, not that serious of a problem. For more than half the patients with brain fog it will be a quirky, sometimes an annoying and even at other times a comical issue, but for others it will be very disabling. In addition, lupus brain fog notably fluctuates with and without disease activity.
I have heard many heart-wrenching stories, of patients whose very own doctors have ignored or even minimized their conditions and complaints as mere irritants. Some medical practitioners do not regard the lupus brain fog as a disabling issue that reduces their patient’s quality of life. This is unacceptable. Lastly, if such large amounts of lupus patients are living and battling with the lingering consequences of brain fog, than why isn’t someone in the research field really pounding the scientific pavement for us to pinpoint the exact cause of this and yield our patient population better treatments? We deserve better diagnostic tools and therapies in our lives while we try to climb out of the trenches of the cognitively challenged.
There are also a high number of lupus patients with the secondary Antiphospholipid Antibody Syndrome/APS/Hughes Syndrome as well as those with concurrent fibromyalgia, both who seem to encounter more obvious signs of the insidious brain fog. There are many running jokes among patients regarding the effects of the brain fog monster in their lives. While we have to admit that some of the brain fog incidents are indeed hilarious and even downright entertaining to our loved ones there yet remains the silent population within the brain fog group who are overwhelmed with the mental and emotional impairments brought on by NP-SLE.
The lupus brain fog can cause:
• Cognitive Dysfunction (impaired abstract, concentration & reasoning skills)
• Short-term Memory Loss
• Verbal Fluency Dysfunction (difficulty finding words)
• Confusion
• Impaired Recall
• Depression
• Anxiety
Patients struggle with the cognitive impairments and the ripple effects that it has on their lives. To some patients it is embarrassing, frustrating and certainly regarded as incapacitating. I recall a forum discussion where Angie Phillips (NP-SLE/APS patient-advocate, founder/ creator of Ardent Cerebrations: Musings of Lupus Survivors!), earnestly explained that for her, the disabling effects of NP-SLE have been far more devastating than that of the pain caused by SLE. That she has incurred more disability from the cognitive issues relating to CNS lupus, that she would gladly take the pain and have her mental faculties restored to the way they used to be. I too, have described to my loved ones that I have teetered on near organ failure and have accumulated physical impairments, but not to have the consistency of my cognitive sharpness and verbal fluency has rendered me more defeated than anything else I have ever faced.
A few months ago, while at my primary doctor’s office we were discussing organic brain disease and she explained that neurologists had discovered that commencing to treat stroke patients with SSRI (selective serotonin reuptake inhibitors) antidepressants immediately following stroke promoted faster neuron repair and recovery from their strokes. She surmised that if antidepressants use was benefiting recovering stroke victims than people with organic brain diseases will also benefit from using them. Before you scoff at the idea of swallowing yet another pill, you might consider having a frank discussion with your doctor about whether you may or may not benefit from taking an antidepressant.
If you have a health insurance coverage that will cover neuropsychological testing, you may consider having that done. Once the tests are completed, the psychologist will make recommendations of activities that you can do to exercise areas of your brain that are affected by the brain fog. I know some patients who do brain games to exercise their minds and keep themselves as sharp as possible. There are very good games on the internet developed by neurologists and neuropsychologists, and a small amount of time surfing the Web may provide you with a good site to frequent. Do understand that lupus brain fog will wax and wane, some days will be better than others will. Do not be hard on yourself!
Coping and Strategizing – Lupie Cognitive Survival Tips:
• Do not multi-task (it can prove dangerous)
• Do not overbook your daily schedule
• Do not over commit yourself
• Prioritize appointments/events/activities (don’t double book things on the same day)
• Determine your peak energy time of the day (schedule needs around that time)
• Reduce background noises when needing to focus
• Use only one calendar (mark doctor’s appointments in one color)
• Set timers for reminders (cellular phones and your PC have different applications)
• Note pads (one for pocketbook, one for computer desk and one for kitchen countertop)
• Keep things simple
• Learn to say “no” (we do not have to commit to every event or activity)
Do not be hard on yourself! Explain to your loved ones about your frustrations and concerns with how lupus is affecting your cognitive abilities. Some of our loved ones may even have simple suggestions to simplify things in our lives, which may foster better memory and peace of mind. Please do not try to tough things out on your own; this will not produce great results. Be willing to ask others for assistance with things. If you are a type-A control freak of a Lupie, try the Zen Lupie practice of not being a control freak! Living with a chronic illness while life whirls about us, can be at times very stressful. How often do I forget that quality of life begins right smack between my very own ears? As in life, some days will be easier than others will and when we lose our way, another veteran patient stands ready to hand feed us morsels that will lead us out of darkness and place us back on the path of inner strength and hope.
*The best resource in your healthcare is your own doctor. The Lupus Magazine does not endorse or recommend any medication or drug company. This article is informational only and should not replace the medical care of your doctor.
Our dear friend and long time employee, Nancy Sampson, died last year of ALS (amyotrophic lateral sclerosis), also known as "Lou Gehrig's disease."
As her symptoms progressed, Nancy lost her ability to speak and move, except for slight head movements.
After several months of unsuccessfully trying to use a very expensive, speech-generating device (basically a computer with technology that tracked eye movements), Nancy and Len (her husband) were very frustrated.
When Maria and I visited, we were saddened to see her husband's frustration at not being able to communicate with his beloved wife. This frustration was amplified for everyone, because inside that still beautiful, but unresponsive body was the same vibrant and quick-witted Nancy we had always known and loved.
Len described how much hope they had placed in the high-tech speech device. Len was facing the prospects of never conversing again with his wife who was sitting right there, fully aware of everything that was going on. It now all felt hopeless.
That evening Maria had an idea.
She lettered the alphabet, numbers and some key phrases on a large 3 x 4 foot piece of 1/2 inch foam board. I ordered a bunch of laser pointers. We got a pair of Nancy's sunglasses and removed the lenses. We used electrical tape to attached two small laser pointers with switches (so they would stay on without keeping them pressed in) to Nancy's eyeglass frames. We used two laser pointers so the frames were balanced, and if a battery ran out in one laser, the other could be immediately turned on.
Because the board was placed across the room from her, all Nancy had to do was move her head ever so slightly to point out the letters. The large board enabled Nancy to speak to the whole room or to one person. It worked perfectly from the very first minute she used it.
We remember fondly when we first set it up, that in spite of her circumstances, one of her first "spellings" was to tell a joke to her husband.
Suddenly, the Nancy we all knew was back . . . chatting, teasing and cracking jokes. She could "talk" again with her beloved husband, her family and her friends.
Nancy used her board to communicate with her family for months until just hours before she left.
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The laser pointers were about $9 each. We had the foam board in our studio (a 40 x 60 inch half-inch thick foam board costs about $25). We used an old pair of Nancy's glasses. Total cost: about $45.
Her care givers had not seen anything like this before. As far as we know, this idea was not in use in this circumstance.
A recent article we read about ALS and its impact on communication with loved ones prompted us to share this.
In Nancy Sampson's memory, please share this idea with anyone you know who can use it. This idea is made available under a Creative Commons Attribution-NonCommercial-ShareAlike License.
In her memory, we call it "Nancy's VoiceBox."
We love you, Nancy!
R&M
Note 1: The decorative pattern on Nancy's VoiceBox is the Zentangle tangle, sampson, which Nancy designed.
Note 2: Please follow all instructions and cautions that come with whatever laser device you use.
Note 3: We are working with Len to design a product that folks can buy with all profits to go directly to families caring for ALS patients. Len will manage it. In the meantime, a high resolution image of Nancy's VoiceBox can be downloaded fromzentangle.com/images/voicebox.jpg
Note 4: For further information, email Nancy's husband, Len Sampson, at lsampson_1@charter.net
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Addendum:
After posting this blog, we sent a link to Mike "Mish" Shedlock, who writes a popular and insightful financial blog, "Global Economic Trend Analysis." We sent it because Mish is active in raising funds to cure ALS because he recently lost his wife to this disease. Mish shared this blog post with his readers at this link. One of his readers posted this comment:
Hello Mish
Thank you for this idea. My mother has a stroke the eliminated her ability to speech. Someone made flash cards for her, but that never worked very well. I can see that the speech board containing many options plus the ability to spell out works all in one place would have been very valuable. My mother died in early 2010, but I am motivated to pass on this information.
Johana
In other words, this is not just for people with ALS. Thank you, Mish. Thank you, Johana.
Click images for larger views.
“The Internet Said I Have 3 Years to Live”
I’ve been having a hard time writing this post about “prognosis”, or how long you might expect to live with Pulmonary Fibrosis. It’s a tough subject. After struggling for about 30 minutes, I realized two things:
Number one – my difficulty writing about prognosis is a pebble in comparison to your mountain of difficulty living with Pulmonary Fibrosis. So I’m going to stop complaining right now.
And number two – it’s difficult to write about prognosis because…. Well, because prognosis is a lie. A myth. Let me explain.
But, before I get to the myth of prognosis, I first need to tell you that all that stuff on the internet about a short survival time in Pulmonary Fibrosis comes from studies of patients with one specific form of Pulmonary Fibrosis called Idiopathic Pulmonary Fibrosis (abbreviated IPF). So, if you don’t have IPF, none of that stuff applies to you – your prognosis might be substantially better than the prognosis in IPF. If you haven’t been to a Pulmonary Fibrosis center (also called an ILD center) to really sort out exactly which kind of Pulmonary Fibrosis you have, then go get yourself an appointment tomorrow.Check out the Pulmonary Fibrosis Foundations website for a list of ILD centers.
Ok, if you’ve been to an ILD center and the team there said you do indeed have IPF, then we can start talking about how prognosis in IPF is just a myth. Now, I don’t mean that IPF isn’t a serious disease – it IS quite serious and people do die from Pulmonary Fibrosis. But the idea that a doctor can tell you how many months or years you have left before your die is simply ridiculous. How can they know exactly when you are going to die? That would be magic.
You are probably thinking “Well, I don't really expect my doctor to know exactly how long I am going to live – I agree that is kind of silly -- but I would like an idea of what to expect.” And I agree with you – that is very reasonable. But, giving you a single landmark in time is simply misleading. Here’s why:
Many of you have seen something like this on the internet: “Patients with IPF live about 3 to 5 years from the time of their diagnosis.” Most people interpret this to mean: “I have 3 to 5 years left before I die.” But, that’s a false interpretation. It doesn’t mean that everyone with IPF lives 3 to 5 years. It means that “on average” people with IPF live 3 to 5 years.
Are you average? No, you’re not. No one is average. Everyone is either better than the average or they are worse than the average. Saying “you have about 3 years left” is like saying that people are 5’ 7’’ tall (the average adult height in the U.S.). Kind of unhelpful and ridiculous.
There is a lot of variation in how long people live with IPF – in fact, in some studies 1 out of 5 people live more than 10 years! Some doctors now think that there may be a very long “silent” period where there is scarring (fibrosis) in the lungs without any symptoms at all – and that the “3 to 5 years” really only begins when people become quite ill – so someone diagnosed in a very early stage might remain well for many years – we don’t really know how many years – before the disease begins to progress. One study even showed that “on average” people with IPF lived 7 years if you started the clock at the time that their symptoms began (like when they first developed short of breath with activities and exercise). That means that half of those people lived more than 7 years!
There’s also a whole other level of complexity here. Doctors can look at how sick you are today and they can use that information to refine their prognosis. Some of the things that predict a better prognosis are the need for less oxygen (or none at all), having better lung function test results (tests like the “FVC” and “DLCO”), walking farther during a walking test (usually a six-minute walk test), and how much shortness of breath you have during your day-to-day activities.
On top of all of this, the studies that found the average survival was 3 years were done more than 10 to 15 years ago. Nowadays, the survival seems to be better – at least “on average.”
And none of these numbers account for people who get a lung transplant – that’s a game changer. Lung transplantation is really to only treatment for IPF that seems to prolong life – again, at least “on average”.
Let me drive the point home by showing you an example of how I talk about prognosis with my patients. Realize that this is one scenario tailored to an individual (and hypothetical) patient. I would change the range of numbers used depending on my patient’s individual characteristics.
“No one can tell you how long you are going to live. You may have read on the internet that the average survival with IPF is 3 years, but that means that half of patients with IPF actually live longer than that – some live a lot longer. But, it also means that the other half don’t even make it 3 years. Also, I don’t know if the average is really that helpful, since no one is average. I find it more helpful to think about the range of possibilities. Is it possible that you are going to live longer than 10 years? Without a lung transplant, the truth is that that does seem unlikely to me. I am worried that you will become much sicker before 10 years were up. Could you live 5 years if you don’t undergo lung transplantation? Yeah, I could see that happening, but you might be quite ill 5 years from now, and while it is possible, it is kind of a stretch. I think the most likely thing is that before 5 years are up, your disease will have already progressed to the point where you need oxygen all the time – perhaps up to 10 or 15 liters of oxygen through a face mask, you are very limited in what you can do – each day will be a struggle, and sometime in the next 5 years, your lungs are likely to fail, which is a life-threatening event. I don’t know if all of those things are going to happen in 5 years, 4 years, 3 years, 2 years or even in the next year, but based on how you are doing today, it is unlikely that any of those things are going to happen in the next 6 to 12 months. So, let’s work together on figuring out how to prevent things from getting worse, and let’s get you as healthy as possible so that when your lungs are sicker, you don’t necessarily have to be so limited by your lungs. We can look into some of the clinical trials of new treatments for IPF – maybe one will work for you. And if lung transplantation is an option, let’s start looking into that now too.”
So, don’t let ANYONE tell you that they know how long you are going to live. You are alive today. You are living with pulmonary fibrosis. Living. Treasure that.
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