Assistive Technology — don’t forget to use it!

December 1, 2009 at 12:23 am (thoughts)
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It seems silly in retrospect, but one of the things that took me longest to integrate into my daily experience with Lyme disease was simple devices that would increase my mobility, strength, memory, and so on. Many of these things are inexpensive or even free, and all of them helped to reduce the impact of the symptoms I was suffering from.

Here are some top things that I made use of. Please comment on this post with your own ideas and maybe we can build up a nice list of things that anyone who is suffering from Lyme disease can draw from.

  • Oven timer: This may not be obvious, but I left the stove or oven on and forgot about it far too many times before my husband and I decided that I should always turn on a timer if I was going to be cooking. Even if it didn’t seem necessary, I could always set it to 30 minutes or an hour from now. Better to have it go off and remind me that something was on the stove than to deal with a badly burnt pot or worse.
  • Cane, with SEAT!: It took me far too long to purchase this one (perhaps out of self consciousness?). Once I decided to get one, I found a geeky solution that saved me over and over and over again — the flipstick. This cane has a built in seat that you can flip out. Once I had it, I no longer had to dread those long hallway conversations when someone is kindly asking how you feel our bringing up a work issue. Instead of leaving them ready to collapse, I would pull out my cane (if I wasn’t already using it to help me walk), and have a seat. What a difference that made!
  • Parking permit: Ok, I’m an eco-geek, I’ll admit it. I was biking to work before I got sick, and I tried to keep it up after. The exercise was a good thing, and well intentioned, but far too often I ended up in a collapse either when I arrived or before the day was out when I pushed it physically. You can only ask for a ride home as a favor so many times before you have to make a change. For me that was first busing, and then driving and paying an arm and a leg in a pay parking lot far to far from my building, and finally, far far too late, a parking permit. I asked for a disabled one and had to fight a major battle to get it, but that’s another story for another time.
  • Husband: Ok, this isn’t really an assistive technology, but it sure is a great assistance. I should generalize this to anyone you’re close to, what it’s really about is being able to say when you need help. Non-trivial, but crucial.
  • Write things down: When you have cognitive impairments, writing things down is KEY. There are many ways to go about doing this, and sticky notes, emails to self, and so on are all ways of doing this. Putting notes where you will see them at the time you need to act is a trick that has been used by individuals with a variety of cognitive impairments (e.g. early-stage Alzheimer’s patients) for years. Learn from them. At least for me, anything I had to remember to look it might as well not have been written down. Some tricks of the trade: If I needed to know something first thing in the morning, I would set up a calendar entry that would txt message my phone to alert me (since I was unlikely to check my email or the calendar on my computer during the morning rush). Late at night, if not urgent, I’d send myself an email (often using my phone, which I kept near the bed), or write it big on a piece of paper next to the bed that I’d see in the morning. Sticky notes or other things right in front of the front door where I’d bump into them on the way out of the house were a big help. If anyone ever asked something of me when I couldn’t write it down, I’d give them the responsibility of sending me an email to confirm. If that wasn’t possible, I’d interrupt the conversation right then to write it down. Anything I needed to track on an ongoing basis went into a custom, known location. For example, phone calls to take care of household stuff, problems with the insurance company, and so on are tracked in a google spreadsheet that I can easily get at from anywhere. Work stuff that I might forget goes on a sticky on my laptop keyboard or on my screen where I will have to move it to start typing at work. I’ve even been known to put something in my shoes (can’t forget that when putting them on) and in a pot (where I would see it at dinner time).
  • Rubber bands: These are incredibly versatile tools for twisting just about anything. I first discovered this years ago when I had a repetitive strain injury that left me with very weak and painful hands. Put them around a jar lid (for example) and then try twisting. It’s amazing what a difference they can make. If you need to, also use hot water to help things along.

There were a couple of things I never got that I probably should have considered. For example, a disabled driver permit from the state of PA would have allowed me to park almost anywhere when the need arose. Didn’t even think of this one until it was too late to matter, but it should have been top on my list right at the beginning. Equally high on my list is a wheelchair, at least a cheap model for moving me around in emergency situations such as some of the collapses I experienced at work. Emotionally, I never managed to work up the guts to go through with this one, I guess I didn’t need it often enough/bad enough. I’m still trying to understand why I resisted this so strongly. Perhaps the same forces that caused me to wait far longer than logic would dictate for even the assistive devices I did use affected my willingness to consider a wheelchair. Why is it that we only consider using these things when it seems we don’t have a choice?

So here’s my suggestion: this year, before the holidays, take stock. Ask yourself what would increase your mobility, energy, or other things that you care about. Remember that technology does not define you, that mobility and exercise may be separate categories of activity, that spending time and energy on the things you care about most is your goal, and that wasting energy on the rest is to be avoided. Remember that spending you on things that fulfill you is part of healing, and that quality of life not defined by your energy levels or even your pain levels but by spending time with the people and activities that make you happy. And then make or buy or ask for the things that will help you focus on being happy.

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New hope for Chronic Fatigue patients

October 12, 2009 at 9:29 am (research, thoughts)
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When you live in the nether world of questioned diagnosis, you spend a lot of time wondering if perhaps those doctors who say the problem is in your head, your lifestyle, and your diet are right. In my case, I was lucky to have a variable enough illness that I was constantly reminded that I was not the cause — as soon as I felt better I did more, no matter how short a time it lasted. I never had to think about it, plan it, or convince myself to do so, I just DID.

Lyme disease patients at least have the existence of a known pathogen to hold onto when they fight the external discrimination, and associated internal questioning, that characterizes their disease. For those with Myalgic Encephalomyelitis (known popularly as Chronic Fatigue Syndrome), until this week, that did not exist. On October 8th, the journal Science published an article by Lombardi et al. titled “Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome.” (also see this discussion by the author of Osler’s Web). Pamela Weintraub, in her blog Emerging Diseases reflects on the continued efforts of physicians and researchers to label diseases like Lyme disease and Myalgic Encephalomyelitis (ME) as pyschiatric illnesses. This is a form of discrimination and institutionalized myopia that has systemic negative affects on patients. It stifles research, reduces access to treatment, and forces patients who are already fighting a difficult disease to also fight for respect. Perhaps worst of all, they must devote mental and physical energy to all of this, while simultaneously fighting the internal battles necessary to keep believing in themselves despite a lack of definitive anything and constant encounters with naysayers. Read the rest of this entry »

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Assistive Technologies

May 6, 2009 at 1:28 pm (thoughts)
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Having Lyme disease is a debilitating experience, on that many of us agree. Many of us also believe passionately that it is possible to improve our lot or even cure ourselves. As a result, we often focus much of our energy on finding the right doctor, the right medication, the right path forward. I certainly have. The rest of my energy typically goes toward getting through each day and in fulfilling and finding joy in my obligations at home and at work.

What I failed to realize for far too long is that there is something else worthy of my attention that can also help me to improve, to get through each day, to manage my situation. I should have realized long ago … that there are tools for getting through tough moments, saving energy, and otherwise assisting myself through the days. Read the rest of this entry »

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Finding Support

October 14, 2008 at 6:36 pm (my story, symptoms, thoughts)
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Last night I made my first visit to the local lyme support group (you can find information about the time and location of my group by searching for the word “lyme” on this page, but note that they don’t meet in Dec/Jan/Feb, or find a support group in your area). I’m not sure why it took me so long. It took me months to find the group (I only found it thanks to the help of someone I met through my blog) and then a couple of months to be free on the night that they meet, but I think I was also apprehensive about going.

I’ve already joined a number of email lists (my favorites include Robynns_Lyme_List@yahoogroups.com (which sends out news articles on lyme disease) and <yourstate>Lyme@yahoogroups.com (this is an activist group so you should join the one that’s specific to your state). I also subscribe to the lyme disease research database news blog. There are also some online forums that don’t go straight to my inbox, and as a result I am terrible about visiting them.

So why the apprehension? I guess it’s the fact that every person I encounter seems to have a different solution, which can be overwhelming given my own uncertainty about what to do. And maybe the fact that the few people I encounter who have been cured can’t seem to explain how in a way I can use. And finally the depressing fact that so many people with lyme are facing so many difficulties, from doctors who won’t listen to them to insurance companies that won’t pay for their treatment, even assuming they know what treatment will help. If reading about people online was so depressing, how could meeting people in person be better? But after a month of feeling worse than ever, I was desparate to find people to talk to who could understand what I was going through. So I arranged for a babysitter, and headed out to the Etna support group.

I’m so glad I went. This month’s group included two women who had lyme years ago and were better, one person I know through the blog, and a mother and her two children (who both have lyme disease). The format was simple — we all told our stories (either the whole story or the last month depending on how new we were to the group) and everyone else listened and answered questions when they could. For example, I learned about a new doctor who could help with my mold exposure, and the group was able to put a name to my most recent symptom (“air hunger“) a search term which helped google answer many questions for me later that evening. It was a very late night for me, but it was worth the time and the impact of the late night.

My anxiety was not entirely misplaced. There is no question that the stories of the people around me were as complex, difficult, and frustrating as the stories I’d been reading in my email and in books. But there is a big difference between reading such a story in brief in a news article, and being able to talk to someone in person. I could ask questions. I could see the bravery and power of the people around me. Each of them was a warrior who had taken her health in her hands and fought for her rights. Some had already won, others were just starting, but instead of feeling depressed, I left the group feeling inspired.

I also left realizing (yet again) just how lucky I am. And it makes me even more angry about the situation that I and so many other patients face. I have many many resources at my disposal, from a (twice) positive western blot to excellent research skills, financial resources that allow me to visit many different doctors, an extremely supportive family and work environment, and friends who knew and recommended the doctors I am seeing. Despite all of this, it took a long time before I was diagnosed; I have often had to “prove” to a new physician that I have lyme disease; my first round of medication was stopped earlier than it should have been (or I would not still be positive now) and I struggled to find balanced information about my disease. I still struggle to find a treatment protocol that I can completely believe in. If, like many other patients with chronic lyme, my test results were less conclusive, my finances or work environment less secure, my family less supportive, or I had less information at my disposal, these problems would only multiply.

So as patients, we are engaged in a battle for our lives, as parents a battle for the lives of our children. If we fail, we are labeled with disabilities like Chronic Fatigue, MS and ALS and told to live with it. Our disability may progress, with the many obvious consequences. This not only hurts us, but also introduces costs to society (e.g. medical; taking someone out of the work force). This battle requires us to become activists; may require us to diagnose ourselves, select treatment options, and corral doctors. In a battle this serious, we’d be crazy not to join forces. We can give eachother strength, reassurance, and validation. We can share information and plans. So if you haven’t done so yet, find a support group or form one. You’re not alone.

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