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January 6th, 2019 neurological change - it IS possible

Real, lasting neurological change (a brooaad category - I mean, we're talking about your brain, nervous systems) is really hard ...

Archive for March 2015

March 26th 2015 Rehab, planning, progress

For some medical professionals, knowing what an experience is like isn't as important.  Some experiences are easier to imagine than others.  Even if they've never broken a leg, or an arm, a physical therapist (PT) has a reasonably good idea of the issues involved to help someone who's just gotten their cast off.  But some medical problems are different.  My guess is that most neurologists, and probably many therapists (such as PTs) have never had neurological problems themselves.  At least not chronic conditions.  Sick people simply cannot treat sick people.  Medical professionals may know someone - a friend or family member - but they're not living with it themselves.  And although there are definitely some common symptoms, as well as triggers, experiences are also very individual.

Parts of my life that are obviously challenging to me, or anyone living with an invisible disorder, may or may not be obvious to the professional you're working with.  For me, this means I have discussions with my therapists about what it's like for ME.  I need to try to share experiences with them.  Sometimes I talk about planning and management, and sometimes I ask questions, or they ask me questions and we work things through together.   This isn't always easy, and sometimes when I'm asked a question, I have to say "I don't know."  I know my therapists also pay close attention to me, watching me while I work.  My discussions with Dr. Glad tend to be different than with Joyce or Ann.  Joyce and Ann talk about integration, and how my therapy is impacting my life outside of my sessions.

How obvious is everything for family members and friends?  Unless you're really sick, it's often not very obvious.  Someone may have had a balance/dizziness problem that lasted a few days, even a few weeks, which would give them a taste of the experience.  That's a good thing, but it's not the same thing as the experience of living with invisible disorders; those who don't have the disorders can't know exactly what it's like, and we (the ones with the disorders) really can't expect them to.  With friends and family, it's often easier, and makes more sense, to simply say "doing (fill in the blank) is hard for me."  And a lot of times that's enough.   Expending the energy and effort, doing the mental processing required, to explain things in detail isn't necessary.  I do occasionally have explanatory discussions with Ron or my girls since they live with me.   But for the most part, by now they either know my capacity, or I'll say "I can do this," or "I can't do that," or "this is what I'm able to do regarding (fill in the blank)."

When I think about all this management, planning and rehab work, I tell myself that if I'm going to DO things, it's just part of the package for me.  It would be easier not to do anything, but then I wouldn't be making any progress.  I've mentioned my progress log, which in my case is a very basic document on my computer.  I try to note some stuff every few weeks.  Even if I don't instantly note it in my log, I also try to simply be aware of whether or not something that I do regularly, but not very often, is getting easier.  Like going to the dentist, or getting a haircut.   I think about if something as basic as whether the break I need after a particular regular activity is getting shorter, if there's been any change.


My progress log is important and meaningful to me, but it doesn't reflect my daily or weekly existence.  I have some basic structure each day and week.  Monday and Thursday mornings mean therapy.  I do something - like writing my blog - on my computer most days.  Other activities might be listening to an audio book, playing my flute a bit, listening to music, or dealing with a household task I can manage.  As I move through my day, I deal with various challenges, but I don't think every second "OK, now I'm working towards this goal, now this moves me a little closer to that one."   When progress is slow, I think that kind of thinking would make anyone crazy.  I  think, sometimes consciously, sometimes not, more in terms of management.  And then I try to step back sometimes and realize what I did that was work for me, or that was a bit easier, or less work.  And sometimes I try to just BE.  Like really hearing the notes I play, listening to the person I'm talking to, or to an audio book.


There's a lot of ways to measure progress.  I think about that when I'm trying to plan, and getting frustrated because I end up thinking about my limitations.  I find myself thinking "OK, is the benefit of this challenge worth the cost?".  Sometimes I know, sometimes I don't.  Sometimes I can control how I challenge myself, and sometimes I can't.   And if I want to do more, to add even a small extra challenge into my week, I don't think about it as an isolated piece.  Sometimes there's a piece of planning I have to share with Ron and/or the girls, rather than only thinking about it.  I try really hard to prioritize my planning, and may go back to something because processing all the planning begins to overwhelm me.

The hardest rehab work is when I'm actually in a session, doing therapy.  But a couple hours a week is definitely not the whole picture.  My progress log is a tangible thing that reminds me that there is just that, progress.  But so much of what I do, whether I note it in my progress log or not, contributes to my rehab.  I don't have to be in a therapy session, I don't have to be doing any specific exercise, for it to be a part of my rehab.  That's the nature of this kind of work - it's like having a job no one pays you to do.  And the planning, management, all the processing is all part of it.  I know that this kind of brain retraining, like Traumatic Brain Injury (TBI), takes a long time - usually a few years.  So in terms of that kind of time frame, even if it doesn't always feel like it, and even though it's exhausting, I'm doing my job well.


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March 18th 2015 What I want from doctors

I've been thinking about what I've learned and experienced over the last three plus years.  I've also been thinking about the experiences of various people I know.

So here's another open letter to doctors:

"Dear Doctors -
I know someone whose initial diagnosis and treatment was finally changed to the correct one too many years later, and someone else who I think still doesn't have all the answers.  I remember after getting my diagnosis of Migraine Associated Vertigo, I e-mailed the neurologist I'd seen, trying to voice my concerns about my vision.  I just had a feeling something was wrong.  He e-mailed me back that what I'd said "wasn't meaningful."  At the time I didn't know what to think, and was struggling, so I did nothing.  But looking back, I think what he was really saying was "I don't know what's going on." 

Please don't tell me that something that is a serious problem for me "isn't meaningful."  If it's happening to me, affecting my life, it's meaningful.  Think about what it would be like if it was happening to you, and please take me seriously.  Ask me for more info if you want to, and if you don't know what's going on, how about saying "I'd recommend you go to a (fill in the blank)."  If I have a serious problem, I want to try to Do something about it.

Did you know we get conflicting info from different doctors, and it's really confusing?  I recently watched a wonderful interview Ryan Adams did back in 2012 about his Meniere's Disease.   Adams said that he'd been to the two top neurologists in the US, and gotten two different opinions.  Why would the same patient with the same story told to two reputable doctors get very different answers? I know people go to more than one doctor fairly frequently when something serious is wrong.  Personally, I'd want to make sure I'm covering all the bases, and get a confirmation of my diagnosis.  If I get a different diagnosis, what does that mean?  Why does it happen so often that we end up with different answers to the same questions?

Adams also said he was advised to cut his sodium intake drastically.  This really struck me because I'd recently listened to a well written account (Lisa Sanders, M.D., The NYT) of a woman with Postural Orthostatic Tachycardia Syndrome (POTS), in which the writer said she'd had nerve damage in her inner ear:
"In this young woman’s case, the nerves that signaled her blood vessels to contract — and send blood up to her brain — had been injured. Why this happens is not well understood, but the condition can be caused by an immune system revved up by what may be a minor infection (in this case the young woman’s cold), mistakenly attacking some of the delicate nerve fibers that control the blood vessels, and was instructed to increase her sodium." 

I know these two conditions - Meniere's and POTS - are very different, but they both involve nerve/balance issues.  I'm by no means an expert on POTS, and I get it that the sodium has something to do with low blood pressure.  But I've always been told that a high sodium intake is bad for a variety of conditions; high sodium levels have some sort of negative effect on our vestibular systems, AND the article said that this woman has ongoing problems.  So how can it make sense that one person is told to cut sodium and the other told to increase it? 

As much as I'd love to think that those of you who specialize in balance really understand how it all works in humans, I wonder how much you DO know.   There are so many different specialties; our bodies are SO complex, there's so much to know.  I know you have training and experience, but a woman once said to me "doctors know a lot, but there's a lot that doctors don't know."  I believe that's true.  I believe we all want you to know more than you do about the human body and how it works, including you.   

When you DO have info, I wonder if you don't share everything, give us the full picture because you don't want to scare us.  The thing is, you don't want to say "you can improve, but this condition is also about management, not about being cured."  But if a patient has cancer, you don't say "it's OK, you'll be fine, and get on with your life."  You give your patient odds for different treatment options.  Why shouldn't patients with some chronic conditions get the same kind of honesty?  Don't you think you owe it to your patients to discuss therapy options, diet, etc.?  I'd need time to process everything, but I'd still rather know.

I don't want to be told my life will soon return to normal if in fact that's not the case; the disappointment is awful.  It's also infuriating and insulting that you think that giving me or anyone rising expectations is better than something more realistic.  I want you to communicate with each other and educate yourselves so that you can say "there's these courses of treatment, and here's what to expect.  This is the general thinking."  I know you can't predict the future, and everyone is different, but have a conversation with me about the spectrum of experiences that patients have.  When I got sick, no one discussed limitations, there was just something about "avoidance of triggers."   You don't have to be a psychologist to be able to understand the impact of that diagnosis.  Again, if you were in my shoes, what would you want to hear?

I've said this before, but it's worth repeating - telling a patient "I don't know, but here's my recommendation so that you can get some answers," would be wonderful.  None of you can know everything, so recognize that reality.  I won't fault you for not knowing, I'll fault you for not acknowledging it.  I suspect that there are still a lot of disorders/conditions that you are still trying to understand.  That's why we get diagnoses that didn't even exist a few decades ago.  I get that, I understand that as learning and research continues, symptoms can be wrapped together in a package that gets a name, a diagnostic label, and that helps in coming up with treatment plans.  But along the way, be honest with us.  Haven't any of YOU ever been patients?  Just because you're doctors doesn't mean you never have medical problems.  So think about how you want to be treated, think about what you would want YOUR medical journey to feel like."

I'm well aware that there are good doctors out there - I've experienced good doctors myself.  I've learned that people who have serious health problems are the ones who experience what's good, but also what's really wrong with our health care system.  We need change in our medical system and one way to get that is for patients like myself to speak up, and talk about what we need from doctors.   The doctor-patient relationship is crucial.  Being a doctor is a big responsibility, and working WITH patients since we are the experts on what we're experiencing is really important.


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March 11th 2015 My emotional balancing act

If someone had told me in March of 2010 that in five years I'd be dealing with invisible neurological disorders, I'm really not sure what my reaction would have been.  And yet here I am.  A good friend of mine is now working full time.  My daughters are growing up.  Under "normal" circumstances I'd have been thinking about what I would do with myself, planning or putting plans into action.  Before I got sick I was giving private flute lessons.  I haven't figured out yet if it's realistic for me to picture myself doing that again someday.  I do hope to play with other musicians again, but I still need to make a lot of progress before that's a reality for me.  When I saw my GP recently for my annual checkup, she asked me what my goals were, and I thought how they're the same as they've been since I started therapy - keep working on making progress. 

Sometimes the fact that my life did not go according to plan hits hard.  I feel like I am constantly making choices, only not the kind I thought I'd be making.  Like when I think about a family Bar Mitzvah celebration coming up, and have to make the choice of what I participate in.  I'm going to attend the service, but not the party.  I hate that.  I hate that I have to miss out on the part when family connects.  It just sucks, and there's really no way around it.  I also know that I have to admit to myself how I feel because otherwise I'm shutting down feelings, and that's not healthy.  I gave a lot of thought to going to the party, but in the end I realize that when I have to think about something THAT much, when there's that much to deal with, it's just not going to work.  My challenges, simply put, limit me, and as much as I want to hold onto a positive attitude, sometimes it's really difficult.

I recently went to the high school theatrical production of Once Upon a Mattress.  Yes, I'm glad I went, but I hate that it's still hard to do something like that.  And I was exhausted by the end of it.  I wanted to attend a Sunday School meeting the next morning, but the thought of going anywhere (other than a walk later that day) made me realize it wasn't in the cards for me.  So I didn't go.  The hardest moment for me is not when I decide I can't do something, though I definitely don't like that part.  It's when I tell somebody, because once someone else knows my decision I really have to own it, and it's hard.  So I have to sit, and feel the sadness and frustration.  It hangs over me like a gray cloud, making me irritable and angry.  And I have to just let myself be that way for a while, before I can move on. 

I realize I'm still alive, and in some ways healthy.  I'm not battling cancer, there are some things in my body that work well - my heart, my lungs, even some things about my nervous system.  But there's that nagging "but" about my health.  I wrote recently about feeling like I repeat myself in my writing, but that there is a purpose to the repetition.  I need to repeat in order to raise awareness, so that people begin to understand.  Actually, I feel like I repeat myself in my own thought process.  Telling myself to look at the positive, telling myself not to get hung up on the negative, trying to give my brain something to focus on so that I don't, when I am doing nothing, go down the wrong road of thought - the negative, anxious, crappy road.   It's a constant balancing act (pardon the pun) of not denying the lousy stuff, but not getting stuck in all of that either, and not holding onto my bad moods.

I think about my balancing act a lot.  And about when I want to try to push a bit.  Pushing, challenging myself can be scary, but then I think about how I'll feel if I don't try.  For example, I'm not going to the Bar Mitzvah party, but I'm hoping to be up to going to a brunch (held in a house the next day) for out of town guests, that the host graciously invited me to attend.  Thirty people is still a lot for me, but I can wrap my head around this as a possible challenge as opposed to a party attended by 180 people.  And then I think, OK, here I go again... thinking about how to find the good vs. the suckish aspects of my life.... I don't know if it's human nature to go back and forth like an emotional yo-yo, but I suspect it's common for people dealing with daily challenges.  I think the yo-yo thing makes sense for me; some days, some moments have less challenges, less times when I'm reminded of my limitations, and some are really the opposite.  So I have to repeat to myself that I can't stay stuck in a cruddy moment.  And that I need to use the difficulties, my challenges, to motivate me, to fuel my determination.

Sometimes someone might feel like giving up, but I'm more often amazed and impressed with peoples' tenacity.   There are incredible stories of people struggling, yet somehow managing to survive in horrible circumstances.  Even when people are sick with something fatal, they try to squeeze every last bit of life, of joy, out of their existence that they can.  I think fundamentally it's human nature not to give up.  So when I hit the repeat button, trying to buoy myself up, I say to myself "OK, but did you think even two years ago that you'd be writing a blog that someone who knows where would read?  And like?"  Of course the answer is no.  And I'm incredibly grateful that my words are reaching people.  It doesn't take away my times of sadness and frustration but it's important to keep in my mind.  And maybe I'll decide I want to write about something else as well, who knows? Writing works for me, but if you can't or don't want to write, I encourage everyone to find something else.  Get suggestions from people on (or off) line, do some brainstorming, because you can't just focus on your messed up plans.



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March 4th 2015 Speaking up for myself

I've thought about the question "how do I want to be treated?" many times.  But it occurred to me that that's actually an easy question to answer:  I want to be treated like myself, like the individual I am.  I don't want people to see me come into a room and think "oh, there's Tamar, and she's got all these problems."  I want it to be "oh hi Tamar, nice to see you."  The real question to ask myself is:

When do I need to speak up, what do I need?

The answer to this question can vary a lot from one person to another, one situation to another.  People with visible problems, for example wheelchairs, or casts on body parts deal with very different scenarios regarding help and self advocacy.  Personally, learning to advocate for myself is a process, a learning experience.  For me right now, there are four things that tend to come up regarding outings (which is when issues come up the most):

1) Transportation
2) Food
3) Taking a break
4) Seating

I should, and want to be the one, to make choices and decisions about what works for me.  Some may disagree with this, but I think in order to have a measure of independence, a lot of it is up to me.  This is the reality of having a disorder that isn't visible, AND that's difficult for others to "get".  Some outings I end up not participating in, some I participate in and rely on my coping skills (which I'm constantly learning), and sometimes I have to speak up.    I might discuss something with my therapists, but in the end, I have to decide.  It would be nice if people knew what I needed, but I've come to realize that for me that's not realistic.  People are not mind readers, and I am the one living with my disorders.  My vision disorder is somewhat unusual, and I'm the one with a restricted diet, so I have to speak up about what I need, for what does or doesn't work for me.  

I don't see myself as someone defined by my medical conditions, my disorders are not who I am, but I do recognize that my medical challenges have a real impact on my life.  I think one of the best ways to counteract stigma is to ask for what you need, and do what you need to do, as long as you're appropriate.  We all want to be independent; I definitely have a very strong streak of independence, and I want to do as much as possible on my own.  An obvious example for me is driving.  I can't get into a car and go wherever I want to go.  But I can plan with a family member, or order a taxi, to get someplace.  I use a variety of hi tech stuff to give me access to the written word.   So acknowledging my limitations and getting help actually makes me the opposite of helpless.  I have to remind myself of this sometimes.

When I think about doing an outing, depending on what the outing is and where I'll be, I may need to think about where I can take a break if needed.  Sometimes I can figure this out on my own, and sometimes I need to talk to someone.  An example of when I need to speak up is attending a high school theatrical production, because where I sit is important.  For the occasional times when a meal is involved, I find out who to talk to about my dietary restrictions.  If I'm in a social situation, I might sit down when others are standing, and not behave as if it's an issue.  When I attend adult education offered by my congregations' Sunday School, I like that Rabbi Adam always offers me any written material he's prepared.  I take the handout, put it under something so that I'm not constantly staring at it, and occasionally look at it.    

I have to advocate for myself at home as well.  In addition to noise, movement can be difficult for me, so I might ask one of my daughters to stop pacing the room while talking with me.  Following them with my eyes gets difficult, or looking elsewhere and then back at them, so I ask them to please stand still.  I'll ask Ron while we're sitting and talking, to stop moving his leg.  Sometimes Leena or Cara want me to do something or look at something, and we have to plan when it will happen.  We may also have to plan a bit how we'll do it.  I've given explanations to Ron or the girls sometimes about a request I make, and sometimes I talk things over with them.  It's a work in progress with them to understand my particular needs, even as I figure things out.

I always hope that some people will make the effort to try to understand, but one of the most important things people can do is recognize when they don't really "get" it.  Presuming you understand something when in fact you don't usually leads to problems, and if you admit you don't, then there's room to learn.  It's frustrating to have disorders that are hard to explain, and hard for others to understand.  I'd rather have problems that are at least easier to explain, and understand, but I don't.  I hope over time, as I continue to write, and continue to advocate for myself in various situations as I slowly make progress, that I'll get better at explaining. 

I'm grateful that for the most part my family is accepting, and doesn't complain, occasionally asking questions to try to understand.  I'm also glad to belong to the Kol Hadash community where I can still participate in some things.  Whether at home or out, special requests or accommodations need to be met with compassion, whether the reason for the request is understood or not.  Sometimes politely asking the reason is OK, though I feel the person being asked is not obligated to answer if it makes them uncomfortable.  Being comfortable talking about whatever you're dealing with varies from one person to another, one situation to another. 

As I go through my journey, I think about those I interact with.  To me there are what I think of as degrees of understanding, from those I live with, to those who know me to varying degrees, to just anyone I interact with.  When I'm with someone who has some understanding of my limitations, it's nice if they remember something from a previous situation, and "get" it.    I also fully recognize that no matter what, there are going to be challenges that come up, and I will deal with some better than others.  Figuring out how to advocate for myself will always be a work in progress.  But I need to keep doing it because if I took away the times when I speak up, and everything I try to do, then I'd really be in trouble.  Ultimately, I want to be able to do things, be with people and be myself.  






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