What would do with your life if you were to awake from a 3 year funk at age 51 after diagnosis of Parkinson's disease with impaired body but clear mind?
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It was initially devastating. Your right (dominant) hand is useless( full description on youtube: and you're plagued with PD's attendant symptom of EDS (excessive daytime sleepiness). Your mind is as sharp as ever and you're ready to re-engage with the world again but you cannot practice medical procedures. You have an MD, writing experience, extensive knowledge of the brain, particularly the wiring of the cortex, and extensive business experience. You've let things go a bit because of a transient depressive funk, but now face a world that consistently and falsely misinterprets your external appearance as a reflection of a disorganized internal state. All that said, if you honestly found yourself in this state, and you considered your life an experiment of what somene with this kind of handicap could accomplish in the world, where would you start?
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Answer:
My dad was a surgeon who developed Parkinson's in his 70's. He had suffered from some degrees of depression for much of his life (post-traumatic stress from war experiences as POW, I'd guess); and had nasty migraines, too. When I think of him, though, I think of his powerful, razor-sharp intelligence and deep integrity; his unwavering unconditional love for his family; and his ability (which I've come to find is quite rare) to feel and show and share boundless overwhelming joy and take pleasure in the simplest of human experiences. He was no longer able to talk, really, or move, but he cried tears of unabashed joy in his hospital bed, when he saw my daughter, his first and only granddaughter, for the first time, a few weeks before he passed away. And I remember the glow he would have on his face everytime he went outside on a beautiful day in winter or summer. Funny how breathing fresh air can remind you that you are alive, and how wonderful and amazing and joyful the world is. He was awesome, and I am deeply thankful to have had such a model for living life with grace, and dignity, and kindness. There was no internet then. I think the internet and technology, in general, has profoundly changed the landscape of what's possible for those of us who are born a little different from the norm or become that way - after all, we all become a little different from the norm over time, don't we? Technology and the internet, however, provides us with additional ways to communicate and express ourselves, and share our experience of the world. That's all there is to living, really, isn't it? There are several really excellent suggestions in the answers here, that are inspired and inspiring, concrete, and specific. Strikes me that you have many, many options and opportunities for happiness and satisfaction, even with the expected incredible frustrations attendant to your physical condition. Once the initial shock of diagnosis wears off, though, I'd guess that you'd be pretty good at developing workarounds and managing your life in a way to live with this condition. You're still "you"; there's just a part of you, now, that's unusual and changing. You're both less and more than you were before you had that diagnosis and started to see the visible change. And the very fact that you asked this question shows that you are a fighter, and trying to think your way through this. That's huge, all by itself. I don't think you can do much to change the way others perceive you, until they get used to it and understand that you are capable of the same, different, and perhaps even more amazing things than you were capable of before the PD began to really manifest itself. So, don't think too much about it; you can't change others, you can only work to make yourself a better, less depressed and unhappy you - and you can - others will respond to you accordingly. Hold fast to who you are; just look for other ways to express your "you". Sounds easy, no? I know - I don't mean to be flippant, but really, you learn more about yourself and others when you're tested. Here's an opportunity for you to ask yourself: " what would I think of someone who was acting and behaving like I am, right now? " And then modify your behavior or opinions, accordingly. Imagine yourself as your realistic role model, and make it so. And be patient with those who have a more difficult time with it. Doctors are highly competitive. You are clearly highly competitive, achievement-oriented. The only person that you're competitive here with, though, is yourself, and your idea of who you are and should be, and what your life is about. So, challenge yourself to raise your game, a little bit, and think differently and more broadly than before; to be the genius that you no doubt are. Challenge yourself to find another way, other than some of the ways you've learned in the past, to express it. Have you read Jill Bolte Taylor's "My Stroke of Insight?" or seen her TED talk? Good stuff. Although some of the "science" is arguable: To answer your last question, this is where I'd start if I "honestly found myself in this state": - I'd keep doing my yoga, and ramp up my practice and study with extra good teachers to try to address those areas that I've been having particular frustrations with. I'd meditate more, and try to probe that part of myself more. If I'm going to be "trapped" with myself, I would want to understand more of who and what I'm dealing with, and work on getting clarity and understanding how my brain can and can't control my body - all that self-awareness stuff. When your body is changing that much that rapidly, it helps that much more to try to have a somewhat disciplined approach to thinking and awareness, and understanding your own emotional and hormonal, chemical reactions. - I'd listen to more music, and really hear it. Music is amazing. I don't give myself enough time to really listen, now. - I'd try to do the best I could to get a handle on my financial and legal affairs, fast. - I'd do and try whatever drugs and surgeries or whatnot I could, reasonably. As you, I'd imagine I'd be supersmart at this; even though doctors shouldn't treat themselves, and I'd defer ultimately to someone who was knoweldgeable, I think I'd have a super-advantage at thinking through my experience of this disease, and adding to the extant knowledge about it. Just documenting the experience - in whatever form; photos, videos, written, verbal - is making a huge contribution. Even a photo a day...interesting stuff. - I'd try to take more classes on http://www.coursera.org and listen to every TED talk known to man (oops, I already do that! ;-) But I would try to find like-minded people to share and communicate with. About all kinds of things - like-minded because they've got PD, or because they're interested in the same things I'm interested in. - I'd try to do the best I could to make sure my family is dealing with it. Caregivers have a huge, difficult job, and don't always get the care THEY need to be able to give you the care YOU need. I'd try to make sure they did yoga, as often as possible, for starters. ;-) - I'd be grateful to breathe fresh air, everyday, and that I can still communicate, whether through the help of technology or not. - I'd set up a plan and make a list of things to do to get to the goals (maybe some of the kinds of things mentioned in the other answers) that I'd like to achieve this week. And I'd find a friend/mentor/family member/coach/colleague to keep me on track and moving forward. Just like I try to do now. (to varying degrees of success).
Marie Stein at Quora Visit the source
Other answers
Although I do not know the specifics of your case, I can give some general suggestions which you may find helpful. Number one. physical exercise is the single most important thing that you will do to help your brain grow and develop. As you may know physical exercise increases BDNF. BDNF is essential for the integration of new neurons and synaptogenesis. Without it, they die. Every day, weight lifting, aerobic and stretching. Yoga would be a good idea. It helps with flexibility and balance. Don't judge yourself, just start doing it and allow progress to occur. Number two Learning also is vital, memorize something. Challenge your body and mind every day. Number three The other side is parasympathetic strength. Learn to relax, breathe deeply, focus the mind. Test yourself by checking BP and HR, relaxing on purpose and checking again. Keep trying until you can lower HR at least 20/min and BP 15mm Hg. This may take 3-6 months of daily practice to learn. At first the results may be paradoxical, don't give up. If you have read about PD, you know that there is an autonomic component. Take the intentional relaxation training seriously. Number four Psychopharmacology - Get the best MedsPerson available It is not just about dopamine, you will need serotonergic and noradrenergic enhancement as well. See a movement disorder specialist, preferably one trained by either some one trained by Fahn at Columbia, Jankovic at Baylor or at the Mayo clinic. Consider taking supplements, Possibly Folic Acid, Omega 3,6,9 and very large doses of CoQ-10 (1200mg BID) Deep brain stimulation can be helpful. Before considering this option, careful review of literature on post-operative executive function impairment would be prudent The above is not medical advice. Please discuss any changes your doctor and follow appropriate instructions.
Rustin Berlow
You've amassed an extraordinary number of skills. Most people allow themselves to be one trick ponies. Congrats on that. The physical appearance parts are putting people off because they are out of the norm. If you deal with the public, that surprise will happen again and again, each time reminding you of your disability. Bummer. Some will even reject you because they are afraid. It's too hard to pretend things were as they were. All it will do is depress you. You say you have business skills so it's time to market yourself in a way which is enticing and revenue producing. The physical hands-on approach is a forgone era in your life now, so looking forward is assessing what turns you on, to a new fascination. Curiosity and figuring out puzzles is what keeps life interesting. You have amassed a wealth of knowledge by now and want to put it to work helping others. Think of yourself like an athlete who has some time left, but then blew out their knee. What to do? Some go into such a funk they kill themselves. Sometimes slowly with A&D. Others become pitch men, some announcers, some coaches and some salesmen. You cannot have gotten to where you are without a ton of research abilities. On top of that, you have practical hands-on experience which makes it not theory. The new area going up is centralized info. That's for rural doctors to help them with procedures they were not trained in. They need info now in real-time. In essence, they are your remote eyes and hands. Skype type formats are being used to guide people in those procedures. Another area is some kind of data mining or research for medical procedures or legal ones. Malpractice is also a big area but you have to be familiar with proper procedures. So is the insurance identification gate keepers. I myself have been trying to get a medical animation project going for helping people use their minds ability in accelerating healing. All these are about letting go of the previous paradigm you had with the sanctions and restrictions it seemed to impose. You get to think "Outside the box" now and find new ways to express yourself with a different set of restrictions. I have counseled a Number of physicians and nurses who lost their ability to do what they had trained for in the way they thought they always would. Physical, psychological or legal issues prevented that. Once they let go of the framework imposed on them from before, a whole other possibility presented itself. You still have a lot of fire in your box. Don't let it go out before you find the next track to take. There are many you haven't thought of yet. Pretend it is a job someone else gave you and you're doing research as if it's for them. People still need you. Good luck.
Mike Leary
Regardless of any treatments you could pursue to help your condition and your ability to function, you are rare among many people with disabilities in that you have the credentials to participate in other parts of your chosen field. Research is a particularly rewarding way to use a medical degree when you are not able to practice clinically, and academia is a great place for qualified, motivated people with disabilities: the benefits are usually really good, you are surrounded by generally smart, open-minded folks, and in medical research, there's a broad understanding of physical challenges and that these do not usually affect the mind or intelligence. Pretty much the ideal spot to work if you have a physical disability. In order to get into research, you should consider updating your skills and gaining an academic posting. You can try teaching at a medical school, and then from there seeking a clinical professorship. Once you have a clinical or tenure-track position, you can seek out research grants. In order to do this you need to have a clear, interesting research area with a demonstrated need. Most often this research would be in your area of clinical specialization. Related areas of work in research that don't require faculty positions include clinical trials supervising and research management (ie ethics boards and the like). Another area of work you could get into is public health - with some retraining you could be a medical officer of health or a public health officer, tracking disease outbreaks, health protection, etc. Most of the docs I know in this area did a residency in public health, or an MPH, which for physicians is a one-year program available in person or by distance education at most medical schools. You should not forget how vital your experience as a patient and your clinical practice is to educating the next generation of physicians - so give some thought to becoming a medical school instructor or curriculum developer. Continuing Medical Education is an area of ongoing need, so if you find you have an interest and the writing/content development talent, you may be able to work with a journal or membership group (like your state college of physicians) to certify, accredit or develop CME courses. Along the same lines, physicians are often hired as consultants or on salary by professional associations, sports teams, insurance companies, etc. to do physicals or review charts or cases. There are all kinds of options in this field and the key is to know what you are good at and what you are still capable of. Physicals allow ongoing patient interaction but don't put patients at risk. You may also find that your experience may make you valuable as a medico-legal expert. My understanding in this area is that all you have to do is be experienced in one clinical area, keep up your activity and membership in your certifying body, and then hang your shingle out and make sure lawyers doing personal injury or malpractice claims in that area are aware of your expertise. PRicing yourself is also a vital part of the equation, but some basic research based on other medico-legal experts should give you an idea of how to price yourself attractively. The other advantage to this position is that it is more flexible, which may help you accommodate the daytime symptoms of your condition. Your funk is understandable. But I agree with other responders that the way to do this is to look forward concentrating on what you CAN do, and the advantages you bring. I can attest that research, and public health work in particular are great places for someone with a physical disability to find fulfilling, intellectually challenging work that still contributes to the public good. Best of luck!
Jocelyn Tomkinson
I got it when I was about 50. Was completely crippled at one point. Could no dress myself etc. Found a good doctor . Start taking pills. Every 4 hours and bunch of vitamins in the morning. Eventually in few months start getting better. Start doing some physical exercise. Started getting some muscles etc. Started practicing a lot of Spanish. Now I am doing some weights and gym every day. My muscles came back. Seriously. Feels like about 85-90% back. Very confident. At one point lost a lot of work but it is all coming back. I know it is just first round. But at least I know I can probably manage it. Do as much physical exercise as possible. Everyday. Everyday. Everyday. Don't miss one. I never take elevator down. Stairs only. Even it is 22 floors. PS. My doctor told me interesting thing. You have to learn as much as possible NEW physical activities. New exercises etc. Don't do the same things. It is like prevention against PD. PLEASE READ THIS ARTICLE. http://pakwired.com/9-brain-tricks-build-motivation/
Anonymous
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