行为识别 运动员辅助训练_卫生技术和辅助研究员

行为识别 运动员辅助训练

Or how health tech made living alone with a debilitating illness a little less terrible

或者，医疗技术如何使患有令人衰弱的疾病的孤独生活变得不太可怕

Two years had passed since the throbbing pain in my ankle appeared after a casual foggy jog in Golden Gate Park.

自从金门公园(Golden Gate Park)一场迷​​雾迷雾般的慢跑之后，脚踝跳动的疼痛出现以来已经过去了两年。

I finally found out what was wrong with me. Well, besides the obvious.

我终于发现我出了什么问题。 好吧，除了显而易见的事情。

I had a rare pain disease called CRPS.

我患有一种称为CRPS的罕见疼痛疾病。

What was initially diagnosed as a straight-forward achilles heel injury by a well-intentioned doctor revealed itself to be anything but.

最初由一位好主意的医生诊断为跟腱直接受伤，但事实并非如此。

The pain wasn’t going to heal by itself. It wasn’t all in my head. There were treatments available for CRPS, but it was going to be a long road to recovery. The disease’s unbearable, unending discomfort is tragically famous for driving many to suicide.

痛苦不会自己治愈。 这不是我的全部。 有针对CRPS的治疗方法，但要康复要走很长的路。 这种疾病令人难以忍受的不舒服感以驱使许多人自杀而悲惨地闻名。

When the pain started, I was living alone, having recently ended a relationship and moved to an elusively affordable studio in San Francisco’s Inner Sunset neighborhood. I relished the opportunity to sing show tunes loudly to myself and decorate every square inch to my particular design aesthetic.

痛苦开始时，我独自一人住，最近刚结束一段恋爱关系，搬到了旧金山Inner Sunset街区一个难以捉摸的负担得起的工作室。 我很高兴有机会向自己大声演唱音乐，并按照自己的设计美学装饰每平方英寸。

It was the start of an exciting new chapter, I thought, drunk with freedom.

我认为这是激动人心的新篇章的开始，我沉醉于自由。

It turned out to be the start of a chapter, anyhow.

无论如何，它原来是本章的开始。

Soon after that ill-fated run, I found myself unable to do basic tasks: visiting the laundromat, shopping for groceries, hopping on the light rail train to work… anything where two working feet comes in handy.

命运多run的奔跑之后不久，我发现自己无法完成基本任务：去自助洗衣店，买杂货，跳上轻轨火车上班……只要两个工作脚都派上用场。

I wish I could say I immediately reached out to a support network that jumped in to help me accomplish these insurmountable activities. But the reality is that I was raised to be fiercely independent. Asking for help was hard.

我希望我可以说我立即联系了一个支持网络，以帮助我完成这些不可逾越的活动。 但是现实是，我从小就非常独立。 寻求帮助很难。

Not to mention I was living 3,000 miles from my East Coast family, and my local friends all had demanding, full-time jobs and/or young children to chase after. Similarly, the neighbors in my building were still new faces of whom I didn’t feel comfortable asking favors.

更不用说我住在我的东海岸家庭3,000英里之外，我所有的当地朋友都要求苛刻的全职工作和/或年幼的孩子来追逐。 同样，我建筑物中的邻居仍然是新面Kong，我不愿意向他们求情。

There were two things I had going for me, though: a disposable income and a smartphone.

不过，我有两件事要去：可支配收入和智能手机。

As the days passed, I started to outsource my needs to strangers and doctors who I could pay through various apps. I became a connoisseur of what my previous able-bodied person might have referred to as “lazy woman’s apps.”

随着时间的流逝，我开始将自己的需求外包给陌生人和医生，我可以通过各种应用程序付费。 我对以前的健全人士可能称为“懒女人的应用程序”的工作感到满意。

Suddenly they weren’t for lazy people. They were critical lifelines, a way to keep my head above water while my pain got worse and worse without respite.

突然之间，他们不适合懒惰的人。 它们是至关重要的生命线，是让我的头保持不动的一种方式，而我的痛苦越来越严重而又没有喘息的机会。

And so, I would like to share with you the platforms that kept me afloat while living on my own with a mobility disorder in San Francisco:

因此，我想与大家分享让我在旧金山因行动不便而独自生活的同时维持生活的平台：

ZocDoc

ZocDoc

You may be thinking, “Allison, you just told us it took two years to get diagnosed. Clearly the doctors you saw were useless…right?”

您可能会想，“艾莉森，您刚刚告诉我们，诊断需要两年时间。 显然，您看到的医生没用……对吧？

Yes and no. The truth is when you have a rare condition it’s a numbers game. Often you have to see 19 specialists before you meet specialist number 20 who is going to correctly assess the situation.

是的，没有。 事实是，当您遇到罕见情况时，这就是一场数字游戏。 通常，在遇到20位专家之前，您将需要看19位专家，他们会正确评估情况。

ZocDoc connected me with some of the city’s best doctors. Rather than blindly picking a name from a Google search, I could look at detailed past reviews, and focus on perspectives of people who had similar problems.

ZocDoc将我与该市一些最好的医生联系在一起。 我不会盲目地从Google搜索中选择一个名字，而是可以查看过去的详细评论，并着眼于遇到类似问题的人的观点。

Most importantly, in the middle of the night during a pain flare, I could schedule an appointment to see a doctor the next morning.

最重要的是，在深夜爆发性疼痛的时候，我可以安排第二天早上去看医生。

Oh and did I mention you can filter by in-network practices? No more calling office after office to find someone who takes your insurance. I’ve saved hours of research by using ZocDoc.

哦，我是否提到您可以通过网络内实践进行过滤？ 不再需要接一个办公室接一个电话来找人接您的保险。 通过使用ZocDoc，我节省了研究时间。

OneMedical

一医

After my positive experience with on-demand healthcare via ZocDoc, signing up for OneMedical was an easy sell.

在通过ZocDoc获得按需医疗保健方面的积极经验后，注册OneMedical很容易。

To me, OneMedical is what other medical platforms only dream of being. Unlike MyChart (sorry Epic), the care team actually reads your messages and responds quickly.

对我来说，OneMedical是其他医疗平台唯一梦dream以求的东西。 与MyChart(对不起的Epic)不同，护理团队实际上会阅读您的消息并Swift做出响应。

It was still early days of OneMedical, and membership was often (not incorrectly) viewed as a luxury service. But the service quickly pays for itself when you have a chronic condition. I even managed to negotiate a discounted price when I was between jobs.

仍然是OneMedical的早期，会员资格(通常会被错误地视为奢侈品)(并非错误地)。 但是，如果您患有慢性病，该服务很快就会收回成本。 在工作之间，我什至设法协商了折扣价。

Essentially you subscribe to a network of doctors and nurses. Like any medical practice, some of the practitioners were hit and miss, but for the large part the ones I saw were thoughtful, thorough, patient, and collaborative problem solvers.

本质上，您订阅了医生和护士网络。 像任何医学实践一样，一些从业者很受打击，但是我所见到的大多数人都是有思想，透彻，耐心和协作解决问题的人。

I cannot emphasize how meaningful it was to have attentive care during intense pain flare ups. Especially when other city doctors had been quick to dismiss my pain and irresponsibly encouraged me to “push through it.” (Fun fact, this actually worsens CRPS).

我不能强调在剧烈疼痛发作期间进行细心的护理是多么有意义。 尤其是当其他城市医生Swift消除了我的痛苦并以不负责任的方式鼓励我“克服痛苦”时。 (有趣的是，这实际上会使CRPS恶化)。

As a OneMedical member you’re also paying for access to a digital platform where you can access your medical records, ask your doc follow up questions, request referrals, and even make free video calls with nurses outside of office hours (a service I took advantage of multiple occasions before heading to the ER!).

作为OneMedical会员，您还需要付费访问数字平台，在该平台上您可以访问病历，询问医生跟进问题，请求转介，甚至在办公时间以外与护士进行免费视频通话(我采取的一项服务前往ER之前有多次机会的优势！)。

When my illness became so severe (wheelchair level) that I had to fly to the East Coast to stay with family, I was able to stay in touch with my OneMedical doctor remotely over messages and video calls.

当我的病变得如此严重(轮椅级别)，以至于我不得不飞往东海岸与家人同住时，我能够通过消息和视频通话与我的OneMedical医生保持远程联系。

Author’s note : pre-pandemic spring 2020, telehealth calls were rare among my doctors. Since then it has been truly exciting to see this practice take off, and provide invaluable healthcare access to those with limited mobility and/or compromised immune systems.

作者注：2020年Spring大流行前，远程医疗电话在我的医生中很少见。 从那时起，看到这种实践脱颖而出，并为行动不便和/或免疫系统受损的人们提供了宝贵的医疗保健机会，真是令人兴奋。

While OneMedical’s advertised central offering is primary medical care, as my condition worsened my doctor connected me to top specialists in the area, even ordering specific tests so I would be armed with data going in.

虽然OneMedical宣传的核心服务是初级医疗服务，但由于我的病情恶化，我的医生将我联系到该地区的顶级专家，甚至订购了特定的测试，因此我将获得输入的数据。

Thanks to this doctor, I met pain management and rheumatology experts I otherwise wouldn’t have known to consult.

多亏了这位医生，我才遇到了疼痛管理和风湿病专家，否则我将不愿咨询他们。

After these appointments, I would regroup with my OneMedical doctor so we could map out what we learned, and what questions we still had to answer. For example, my autoimmune markers were only sometimes abnormal — what might that indicate? How might my low bone density contribute to my pain, if at all? Was the swelling in my ankle linked to other sensitivities, such as arthritic joints? As I later learned, yes, these were classic symptoms of CRPS.

这些任命之后，我将与我的OneMedical医生重组，以便我们可以规划出我们学到的知识以及我们仍然需要回答哪些问题。 例如，我的自身免疫标记有时只是异常的-这可能表明什么？ 低骨密度怎么可能导致我的疼痛？ 我的脚踝肿胀是否与关节炎等其他敏感因素有关？ 后来我知道，是的，这是CRPS的经典症状。

By using OneMedical as a tool to investigate my illness, I now had a clear track record of tests and doctor notes. This record was critical for my final pain management doctor to eventually correctly diagnose me.

通过使用OneMedical作为调查我的疾病的工具，我现在有了明确的测试记录和医生记录。 该记录对于我最终的疼痛管理医生最终正确诊断我至关重要。

Alto Pharmacy

奥拓药房

Did I mention the perils of standing in a store with foot pain? At the depths of my illness, the concept was unfathomable.

我是否提到在脚痛的商店中站立的危险？ 在我病深的时候，这个概念是深不可测的。

Enter Alto. One of my doctors recommended the online pharmacy after prescribing a new medication.

输入中音。 我的一位医生在开了新药后推荐了在线药房。

At the time I was skeptical. Another iPhone app service to sign up for? No thanks. I’d rather wrangle my knee scooter down to Walgreens. When that option proved untenable, I caved and downloaded the app.

当时我很怀疑。 可以注册另一个iPhone应用程序服务吗？ 不用了，谢谢。 我宁愿把我的膝盖踏板车扭向沃尔格林斯。 当该选项被证明是站不住脚的时，我陷了下来并下载了该应用程序。

I was soon delighted to discover each (free!) delivery came with a little caramel inside (my favorite candy!). Choosing a same-day delivery time and receiving text updates also meant avoiding the headache of stolen city packages.

很快，我很高兴地发现每次送货(免费！)内都带有一点焦糖(我最喜欢的糖果！)。 选择当天交货时间并接收文本更新还意味着避免被盗城市包裹的麻烦。

To top it off, whenever there was a change to my medication, Alto did the work of updating my prescription through an efficient, real-time messaging system. No more waiting on hold with pharmacy staff! I will miss those sweet jams, though.

最重要的是，每当我的药物发生变化时，Alto都会通过高效的实时消息传递系统来更新我的处方。 不再等待药房人员的等待！ 我会想念那些甜果酱的。

These days the idea of standing in line at the pharmacy astonishes me. An archaic activity of the past, I hope, for bodies of all abilities.

如今，在药店排队的想法令我惊讶。 我希望，对于所有能力的身体，过去的过时活动都是如此。

TaskRabbit

任务兔子

I am immensely grateful to the folks at TaskRabbit who screen and hire skilled workers.

我非常感谢TaskRabbit的人员筛选和雇用熟练工人。

At the beginning of living on my own, there were a number of household things I needed help with. Before getting sick, I called upon TaskRabbits to assist with electrical installations, moving heavy furniture, picking up a Craigslist purchase, and even delivering a package across the Bay Bridge to Berkeley. The fees were reasonable, and similarly to ZocDoc, each worker had a review history with specialities listed.

在我一个人生活的初期，我需要帮助许多家庭事务。 在生病之前，我打电话给TaskRabbits协助进行电气安装，搬运沉重的家具，购买Craigslist的商品，甚至跨海湾大桥运送包裹到伯克利。 费用是合理的，并且与ZocDoc相似，每个工人都有一个列出了专门知识的审查历史记录。

Living alone with an illness, hiring help for weekly tasks became invaluable. My body no longer allowed me to haul bags to the laundromat. Cleaning the apartment in any meaningful way was out of the question when I couldn’t stand. Same with carrying large packages upstairs, dropping off recyclables at the city dump, or transporting heavy plants.

患病独自生活，为每周工作寻求帮助非常宝贵。 我的身体不再允许我将行李拖到自助洗衣店。 当我无法忍受时，以任何有意义的方式打扫公寓是不可能的。 就像在楼上搬运大包裹，在城市垃圾场放下可回收物品或运输重植物一样。

Though friends sometimes filled in (thank you!), I didn’t want to become a burden. I was acutely aware of the delicate balance of favors in friendships, and feared exhausting their generosity.

尽管有时朋友会填补(谢谢！)，但我不想成为负担。 我敏锐地意识到友情之间微妙的平衡，并担心精疲力竭。

I’ll never forget the skilled TaskRabbits whose help enabled me to live independently. Several shared they regularly helped others who had physical limitations.

我永远不会忘记熟练的TaskRabbits，他们的帮助使我能够独立生活。 有几个人分享他们定期帮助其他身体有障碍的人。

Most of all, I never felt judged or “othered” by TaskRabbits for outsourcing activities I was used to doing myself. Activities that, internally, I felt I should have been able to do. And that meant the world.

最重要的是，我从未感到TaskRabbits对我习惯于自己做的外包活动有任何评判或“厌烦”。 在内部，我觉得我应该能够做的活动。 那就是世界。

Uber Assist

优步助手

Many weeks, the pain was so unbearable I didn’t leave my apartment.

许多星期以来，这种痛苦实在难以忍受，我没有离开我的公寓。

On better days, I either managed to crawl down my apartment stairs, or used a knee crutch you may have seen in infomercials to perilously hop down my backyard stairs to the basement (note: They do not work on San Francisco hills. Repeat: they do not work on hills!).

上更好的日子，我要么设法爬了我的公寓楼梯，或使用膝拐杖，你可以在电视购物节目已经看到危险地跳了我的后院楼梯到地下室(注：他们没有在旧金山的山丘工作重复：他们不要在山上工作！ )。

Once in the basement, I would transition to my second knee scooter. From here, I could just barely yank open the garage door and wheel myself the sidewalk. Then I would throw myself into a Lyft or Uber, and plea with the driver to please see if the knee scooter would fit in the back trunk.

一旦进入地下室，我将过渡到我的第二辆膝盖滑板车。 从这里，我几乎只想拉开车库的门，然后在人行道上开车。 然后，我将自己扔进Lyft或Uber，与驾驶员讨好，请看看膝盖踏板车是否适合后备箱。

It was quite the spectacle.

这真是奇观。

About 25% of the time, this effort failed. Either the driver wasn’t willing to help (it was “too much work”), or their car simply didn’t have room for a walking device. To mitigate this, I often called the driver as soon as they were assigned to my request to explain my situation. Still, drivers I called couldn’t always accommodate my gear, or would mutter complaints, turning my face red with guilt for asking help.

大约25％的时间，此工作失败了。 要么驾驶员不愿意提供帮助(这是“太多的工作”)，要么他们的汽车根本没有空间容纳步行装置。 为了减轻这种情况，我经常在分配给我的请求后立即打电话给驾驶员，以解释我的情况。 尽管如此，我打电话给的驾驶员并不能总是容纳我的装备，或者会抱怨，使我因寻求帮助而感到内red。

My second pain year, Uber Assist launched in San Francisco. For a few more bucks, I could get matched with a driver who had opted-in to helping folks needing a bit of an extra hand. No more feeling like I was asking the impossible!

我第二次痛苦的一年，Uber Assist在旧金山成立。 多花几美元，我就可以和一位选择帮助一名需要额外帮助的人相匹配。 不再有我在问不可能的感觉了！

The Uber Assist drivers I met often had a disability story of their own. One driver shared he had spent a year paralyzed from the waist down, and now that he had recovered, he was inspired to help those with unique mobility needs. Another driver already owned a van equipped for wheelchairs, and was especially patient as I took my time hobbling in.

我遇到的Uber Assist司机经常有自己的残疾经历。 一位司机分享了他从腰部到腰部瘫痪了一年的时间，现在他已经康复了，他得到了启发，可以帮助那些有特殊行动需求的人。 另一位司机已经拥有一辆装有轮椅的面包车，当我花时间钻研时，尤其耐心。

Maybe I lucked out, but these drivers didn’t grill me about “what was wrong with me” (a question invariably asked when I ventured out into public — for which I didn’t even know the answer while seeking a diagnosis!).

也许我很幸运，但是这些司机并没有让我为“我怎么了”(当我冒险公开露面时总是问这个问题-在寻求诊断时我什至不知道答案！)。

Uber Assist drivers didn’t demand I explain my pain “reason,” they didn’t ask “how much longer” until I could walk again, they didn’t need to tell me “but you don’t look sick.” I was just another rider going from Point A to Point B.

Uber Assist司机并没有要求我解释我的痛苦“原因”，他们没有问“有多长时间”，直到我再次走路时，他们并不需要告诉我“但你看起来并不生病”。 我只是从A点到B点的另一个骑手。

Not having to explain myself was a welcome relief.

不必解释自己是一种可喜的缓解。

Present day

今天

After failing numerous other treatments and spending 10 months wheelchair-bound, I made the scary decision to have a DRG stimulator implanted in my lower right back this past June. The device connects to a bundle of nerves outside the spine to intercept pain signals from the CRPS affected limb(s) to enable mobility. It is considered a last-resort option, used in advanced cases when nothing else has worked.

在经历了许多其他治疗失败并花了10个月坐轮椅的时间后，我做出了一个可怕的决定，今年6月，我在右下角植入了DRG刺激器。 该设备连接到脊柱外侧的一束神经，以拦截来自受CRPS感染的肢体的疼痛信号，从而实现活动性。 它被认为是最后一种选择，在其他情况下均无效的高级情况下使用。

And I’m excited to share the stimulator is actually working! It comes with its own bluetooth-enabled iPhone app to adjust the strength. I am officially a Bionic Lady.

我很高兴分享刺激器的实际作用！ 它带有自己的蓝牙iPhone应用程序来调整强度。 我正式是一位仿生女士。

Since the surgery I have been learning how to walk again. I am starting to stand again for short bursts, and walk across the room. But 10 months is a lot of muscle loss, and every few weeks I will overdo it. Twice already I have gone back to wearing a CAM boot and using a knee scooter.

自从手术以来，我一直在学习如何走路。 我将再次站起来短暂休息一下，然后走过整个房间。 但是10个月是很多肌肉的损失，每隔几周我就会过度消耗。 我已经两次回到穿着CAM靴子和使用膝盖滑板车了。

The stimulator isn’t a cure. I don’t know what my new limitations are. I don’t know what other treatments I may need.

刺激物不是治愈方法。 我不知道我的新限制是什么。 我不知道我可能还需要其他什么治疗方法。

I see a future where I am more-abled than before. Yet it’s a future where I live in both worlds: before and after illness.

我看到一个比以前更能干的未来。 然而，这是我生活在两个世界上的未来：生病前后。

Is CRPS a temporary disability, as my friend asked, or will I always have it to some extent? I honestly can’t say.

正如我的朋友所问，CRPS是暂时性的残疾，还是我会一直处于某种程度？ 老实说，我不能说。

But I will say that I have a newfound appreciation for tech services that supported my journey. I want to contribute to the landscape of tech services that make it easier for those with physical differences.

但是我要说的是，我对支持我的旅程的技术服务有了新的认识。 我想为技术服务的发展做出贡献，以使那些有身体差异的人更容易获得服务。

I know what it’s like to have your independence taken away overnight. I know the guilt of needing extra help.

我知道一夜之间失去您的独立感是什么。 我知道需要额外帮助的罪恶感。

I also know the transformative power of tech. I know the world of difference it can make to have assistance doing chores, getting prescriptions, and leaving the house.

我也知道科技的变革力量。 我知道，在做家务，开处方和离开家的过程中获得帮助可能会带来很大的变化。

I want to help build these tools. To support independent living, to make living with limitations a little less terrible.

我想帮助构建这些工具。 为了支持独立生活，使有限制的生活变得不那么可怕。

In UX research, we talk (a big talk) about empathy for the user. User-centered design means understanding users’ needs, motivations, goals, barriers, and workflows. Which is great! But even if we interview 100 folks about what it’s like to not walk for weeks on end — we won’t ever know what that reality looks like without experiencing it first-hand.

在UX研究中，我们谈论(大谈)关于用户的同理心。 以用户为中心的设计意味着了解用户的需求，动机，目标，障碍和工作流程。 太好了！ 但是，即使我们采访了100个人，连续数周不走路是什么样的感觉-如果不亲身经历，我们永远不会知道现实的样子。

I hope to leverage what I’ve learned as a stepping stone for empathetic experience design in health tech. While I wouldn’t wish this disorder on anyone, I wouldn’t give up the perspective it’s given me. And that too, makes living with CRPS a little less terrible. ️☀️

我希望利用我学到的知识作为卫生技术中移情体验设计的垫脚石。 尽管我不希望这种疾病困扰任何人，但我不会放弃它给我的观点。 而且，这也使得使用CRPS的生活变得不那么困难了。 ☀

翻译自: https://medium.com/@allisonvleach/health-tech-and-the-ux-researcher-fe20519d304c

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