(Part 3) Best books about nervous system diseases according to redditors
We found 254 Reddit comments discussing the best books about nervous system diseases. We ranked the 68 resulting products by number of redditors who mentioned them. Here are the products ranked 41-60. You can also go back to the previous section.
This book helped my family in the day to day care and to explain what's going on in a way that made sense. It doesn't get easier. I'm so sorry I hope your family is ok.
Case by case...
HNF founder Allison Moore (http://www.hnf-cure.org) was in her late 20s and prepping for a marathon, when she was hospitalized and treated for a tumor in her leg. The meds exarcebated her CMT.
Chris Wodke, a triathlete with CMT, is in her 50s and still competing. Running for my Life, Winning for CMT
Bernadette Scarduzzio has a faster progression, but she is a dynamo that has dedicated her life to CMT awareness. http://www.bernadettecmtmovie.com/
These two books:
https://www.amazon.com/Learning-Speak-Alzheimers-Groundbreaking-Approach/dp/0618485171
https://www.amazon.com/36-Hour-Day-sixth-Alzheimer-Dementias/dp/1421422239
My uncle died. He was my grandmother's primary caretaker. He did not want to stress us out so he did not tell us how bad she was. My Dad and I were completely blindsided. Her doctor told me to read The 36-Hour Day. I cannot even express how helpful this book was to us.
Dementia is cruel and hard and heartbreaking. Good luck to you.
An article I've dug up to re-post a few times regarding persecutor alters, and a theory about why the exist, and how to interact with them. Note: the article has explicit examples of persecutor alters. It's aimed at therapists, but it's easy to transfer to you interacting with your own system.
It's a bit of a weird thought, but I would also recommend reading some traumatic brain injury literature. The tips they have for people with suddenly much shorter attention spans and memory issues are can be re-worked and transferred to make an external communication system, and can help you make external coping tips. A lot of DID literature I read focuses on system cohesion, survival, the controversy, and so on. Traumatic brain injury literature will cover how to reorganize your life physically when you're not "there" for most of it. (With tips such as calendars, medication sorters, and so on.) I ended up reading this one.
Thank You. You might want to add David Zid's book "delay the disease" to your wish list. ;) link
Hi-40 year old w moderate ataxic quad cp here:
If you don't get all those terms 100% ok!!
Ataxic is a type of cp, quad just means all four limbs have some degree impairment, moderate is just how I feel my condition falls on the spectrum of cp. Terms are not important to me as someone who grew up w cp. Everyone also says something different in terms of what type I have, terms are always changing and mild/moderate/severe-that's becoming outdated and it's so subjective.. Now they're switching to gross motor function scale-I think 1 to 4. To all that as an adult w what I say is moderate cp-I say, whatever..
First: you need to be asking/advocating how to get started in early intervention. Your early intervention provider(s) will really help guide you through it!! Getting into early intervention is top priority!!!
Second: they are really starting to treat early childhood cp w stem cells! So I'd ask about that if it were my baby. A While ago about a trial in the states recruiting young kids w cp..) Trial was done at Duke; it's no longer active on NIH's website, so it's probably done or at least past the recruiting stage..
BUT: here's the email from last trial: [email protected]
Third: here are some resources that you may find helpful if you are just starting to feel your way through cp.
Below are some links that may be helpful. Know it will be OK, take each day or issue as it comes and your little guy will be amazing!!
*Cerebral Palsy: A Complete Guide for Caregiving (A Johns Hopkins Press Health Book)
https://www.amazon.com/Cerebral-Palsy-Complete-Caregiving-Hopkins/dp/1421422166/ref=sr_1_1?keywords=Cerebral+Palsy%3A+A+Complete+Guide+for+Caregiving+%28A+Johns+Hopkins+Press+Health+Book%29&qid=1566892940&s=gateway&sr=8-1
* Reaching for the Stars:
http://reachingforthestars.org/
*Karen Pape:
http://www.karenpapemd.com
*American Academy for Cerebral Palsy & Developmental Medicine (AACPDM)
http://www.aacpdm.org/
*Intensive Suit Therapy
https://oxfordrecoverycenter.com/suit-therapy/
*Wrightslaw Special education and advocacy
http://wrightslaw.com/
*Alternative Therapies for CP
http://cpcare.org/treatments/alternative/
(if you want to try stuff in addition. Some things you may feel might be worth looking into, others you may feel won't help or don't sound credible.
Don't get to over whelmed, you do not have to do everything all at once. The period after diagnosis is hard enough-if you feel it's best to stick to early intervention, that's enough. Never feel you have to have your kiddo in 20 different therapies or you're failing as a parent-not so!! Do whatever works for you!)
*Wonderful blog about growing up with/having cp; If you root around it covers a lot of topics:
A lot of experiences mirror my own, some contrast my experiences. Nonetheless, it gives lots of information/perspective.
https://toniasays.blogspot.com/2017/08/parenting-kids-with-disabilities-what.html
It sounds like misophonia. The last paragraph of this site has some suggestions such as cognitive behavioural therapy, as well as some other resources: https://misophoniainstitute.org/what-is-misophonia/
Haven't read this book, but perhaps it may be helpful to you: https://www.amazon.com/Understanding-Overcoming-Misophonia-2nd-Conditioned/dp/1548328693
Best of luck! Hopefully having a specific term to research is helpful. Looks like you're not alone. :)
I'm so sorry you (and I) are going through this. I'm an adult, and I have it in my knee as well. I also don't have the allodynia (the pain when touching the skin). This is just a random list, but here are things that people in my local CRPS group have said that's helped them, and what's helped me:
My Grandfather bought this, had it delivered to his old house (next door to us - new neighbours gave handed it over) by mistake and had no idea what it was when I showed it to him. I immediately purchased this.
I thought that the book "Overcoming Dyslexia for Dummies" was a little inappropriate.
"But in the history of our society there has never been an “epidemic” of any developmental or genetic disorder—it is scientifically impossible. So what is this mysterious affliction known as “autism,” and how can we stop it? Dr. Goldberg and his colleagues illustrate why autism cannot be genetic, but is a symptom of a treatable neurological disease that attacks the brain’s immune system."
https://www.amazon.com/Myth-Autism-Misunderstood-Epidemic-Destroying/dp/1628737174/ref=sr_1_1?ie=UTF8&qid=1520818040&sr=8-1&keywords=myth+of+autism
And don't sweat it- I came from a completely unrelated undergrad program and was soooo nervous about the same exact thing. Turns out, it really didn't matter at all :)
I read this before last season and got a helmet... with good audio of course.
My grandmother has moderate Dementia, and possibly Alzheimers coupled with that. She lives alone, after 5 failed marriages and we see here every day, and she has a visiting nurse come to her house every day. It helps her to have some social interaction as often as possible. I am a teenager, but highly involved in the situation as my dad is often out of town on business and my mother is shepherding my sister to and fro private school, along with her job as well. It is difficult to deal with the situation at times, but one of the best ways we find, as a family, is to talk openly, honestly, and often about the situation. Some light-hearted humor at his/her expense when they aren't around helps us stay sane (maybe we're terrible people, but we really do give our full effort to help her whenever possible).
There is a book about Dimentia and related ailments called "The 36-Hour Day"; it is extremely helpful in understanding why they may act a certain way, and also how to help them in those situations.
tl;dr: My gramma has Dimentia, possibly Alzheimer's, and we take excellent care of her. Read the book linked into the comment for help.
Thanks for the reply.
I guess the difference in our opinions arises from this point that you made:
> yes but what entity is EXPERIENCING that consciousness?
I am not sure how you can invoke an additional entity, beyond the physical brain and neural connections, and have it still reside within the natural world (as opposed to some supernatural interpretation). If this entity you speak of is NOT beyond the physical, the all of your points become moot--I am who I am because of the physical continuum of my brain. I am 'me' and not Genghis Khan, because of the physical body that is thinking and speaking those words. I can't be anyone else but 'me', because 'me' is intrinsically tied to this physical body ('I' or 'me' is an illusion created by that physical body). I am not arguing that this entity does not not exist (or can't exist), but rather that its existence is not necessary to explain what we call consciousness.
Hypothetically, if the arrangement of physical matter that makes up a consciousness was somehow replicated in another body, even in conjunction with the memories of that other body, a whole can of worms is opened with relation to identity, if we assert that identity is a real thing. Another mind-fuck occurs when the corpus callosum is cut in a patient's brain. When this is done, the two sides of the brain cannot communicate and two centers of 'consciousness' become apparent (I highly urge you to read up on this, if you're not already familiar with it--very cool stuff). Have you cloned an identity by cutting a cord? What if once consciousness (one side of the brain), again hypothetically, could be replaced (via matter manipulation) with another person's? What then? In my opinion these types of questions are pointless to consider, since 'consciousness' and 'identity' are merely labels applied to illusions created by a physical brain. When we step outside the norm (the norm within which these illusions became to be) as in these examples, the concept of 'identity' and 'consciousness' fall apart and become useless. But, again, I think that it is OK because they were just labels in the first place.
> you still wouldn't want to die
This is instinct, not at all tied to or related to identity.
I hope the following sums up my position on the issue:
I think that, given our current understanding of the brain*, ideas such consciousness and identity are illusions. We ARE that computer that is drawing experience out of an inanimate object. The only thing holding back a computer (or a rock, for that matter) from being anything more than an inanimate object is the necessary brain tissue (or some simulation of such). There is no entity 'behind the eyes', that is just an illusion.
* For a fascinating read, see "The Accidental Mind".
Now, to address some of your other points:
> Let's not label matters currently outside of empiricism as 'matters of faith'
The word currently in your statement is crucial. If this was your original meaning, then I retract my statement calling it faith. What is important here from my perspective (considering my position stated above), is that the entity you have invoked is unnecessary and unsupported by evidence--much like a god, which is why I initially labeled it as faith. If we discover that the physical brain cannot account for that entity (in other words, it can't be an illusion), then it will be worth consideration.
> Logic is what persuades us that there is no God or that we are not living in the Matrix, not science or empiricism.
I find this interesting. How has logic convinced you that there is no god, or that we are not in a Matrix-like environment? I don't consider these possibilities seriously due to the lack of any reason to. I certainly would never utter the words "there is no god", since that is just as much a fallacy as saying "there is a god". I don't consider myself agnostic, however, because I don't even consider the question of god's existence seriously. The same follows with the Matrix construct. We could be in a simulation. There is no way to know whether we are or not from within. The problem that arises when seriously considering this is that there is no reason to consider it in the first place. If you do consider it seriously (as opposed to a fun thought experiment), then what if that simulation is part of another simulation. What if that simulation was created by god? What if that god was created by some higher order simulation. What if it all was created by something we can't even conceive? Ad infinitum... The invocation of such entities add nothing to our understanding of the universe and existence, given that the case where they do exist is indistinguishable from the case where they do not exist. Therefore what good are they to us to seriously consider? This has nothing to do with logic or science. If their existence is distinguishable, then this is in the realm of science and can be handled as such. But I digress...
> Consciousness is a word, a label. But it points to something that actually exists.
To reiterate, I don't think it actually exists, but is simple the inevitable result of an incredibly complex physical brain, which has evolved and been selected for due to the social advantages of such. The personal identity called 'you' is an illusion.
> I think, therefore I am.
This was said by Descartes, who went on to use it as a basis to prove the existence of god. That being said, he is still one of my favorite philosophers for this simple, yet undeniably true statement. However, I think you are misinterpreting it, at least in the context of consciousness. "I think, therefore I am" only means that something must exists. If 'I' am here thinking, then the concept of 'I' must be created by something. In the context of our debate, something must be creating the illusion of 'I'. This could be our physical brains, a computer simulation, etc.--whatever it is, however, it must exist. That is all this statement means.
> You can't test for conscious minds, even remotely.
This, again, is only true if you assume a 'conscious mind' is more than the sum of its parts. If not, then we certainly could 'test' for consciousness, given the appropriate technology. First we would need to define what it means to be conscious (another heap debate), in terms of neural activity and physical state.
> An advanced CPU - so often compared to the brain and its synapse and modularity - is NOT a consciousness. There is nothing 'experiencing' what a computer or robot is 'sensing' or 'thinking' - no matter how advanced it's sensors or programs were.
Here, you are stating that a CPU is not a consciousness. However, you've never defined what exactly a consciousness is. How do you know an advanced CPU is not conscious? How do you know that an advanced CPU could not 'experience' in the same way we do, provided it has the appropriate components and code to replicate our brains behavior accurately enough? Please define consciousness before claiming that something has or does not have 'it'. If your response is along the lines of "we don't understand it well enough to define", then you cannot make these inclusive or exclusive statements. You're also assuming that something has to be experiencing the 'sensing' or 'thinking'. What if 'sensing' and 'thinking' in a coherent manner is all that consciousness really is? I would argue that a computer is much like an intermediate 'consciousness' along the evolutionary line between a plant and a human. IBM has claimed that they have successfully simulated a cat's brain. Is a cat conscious? Assuming their claim is accurate, and that a robo-cat could be created and controlled via this simulation to behave indistinguishably from a real cat, is the robo-cat conscious? IBM is planning on simulating a human brain next. If this simulation is indistinguishable from a real human (à la the Turing test), what then have you to say in regards to consciousness?
> Again, it comes back to the same thing you said -- if a computer were capable of a conscious mind -- at what point does it 'gain' such a phenomena...
This is due to the vagueness in the definition of 'conscious', another heap problem, and can be summarily dismissed with the understanding that 'consciousness' is an illusion, created by brain matter. Adding code/components, at what point does it fit the definition of 'consciousness'? To reiterate, I feel that this can be simply explained with a realization that 'consciousness' is a label we apply to a higher functioning brain, specifically the illusion created by such a brain, and is not a real tangible thing.
> There is no evolutionary incentive - or really, anything in the universe - that necessitates a conscious mind -- but maybe that is a byproduct product of our advanced brain (there is no disincentive for a conscious mind either). Like a bellybutton - there is no need for it, but it's a by-product, and it's not harmful, so it's there.
Ack! I really hope you'd like to take back these statements. There certainly is a benefit of a conscious mind, when considering social aspects of organisms. In fact, the 'illusion' of identity was likely a result of the evolutionary 'force' of social interaction (the you are 'you', I am 'me' distinction in a social species). This evolutionary step (not a single step, of course) is arguable what has vaulted our species to domination over the rest of nature. Also, a belly button is absolutely necessary--it was the passage through which you were fed in the womb!
The rest of what you said I approached at the start of this wall-of-text, since it most likely identifies our difference in opinion.
* Edit for clarity and URL oops
The book the movie was based on is Awakenings. I indicated the other book in the comments, but I'll link it again for you, it's called Asleep.
Reminds me of a book about Encephalitis lethargica Alseep The epidemic that occurred during and after the pandemic flu of 1918. J.P. Morgan's wife died from it. Interesting read.