Recovery Ideas that have helped

[Stephen]

There are things, I have found, that help aid in recovery just as there are things that slow it down. Realizing that each of us is different and what helps one person may not help another, this discussion thread is a place to share recovery ideas.

When sharing suggestions, please be as specific as possible.

If you try something and it helps, let us know. If you try it and it doesn't help, let us know that as well.

I'll share my own findings soon!

[Daniel]

Hi Stephen,
Something which I suffer ongoing issues from is a form of vertigo known as 'presyncopal lightheadedness', in which the circulation of blood to the brain causes spontaneous dizziness when certain factors occur like nervousness/uncertainty (eg crossing a road or walking through a crowd of people) and the feeling is similar to going from sober to drunk and back again in the space of about 3 seconds and is not pleasant.
As I understand it, while this symptom stems from the circulation of blood to the brain, it is also affected by damage to the inner ear so the fundamental solutions to this problem appear to be :

1. improving the heart and therefore making the circulation of blood to the brain more efficient
2. addressing inner ear concerns
3. raising self confidence

1) - I find is best helped by gradually undertaking physical rehabilitation or exercise in order to improve the condition of the heart by starting off very small with maybe a walk nearby each day until some form of machinery like an exercycle is considered and other things introduced over time.
2) - There are medications available which address inner ear issues and also blood - brain circulation. The main ingredient which I've found helps is known as 'gingko biloba', which is a natural extract which can be found in a number of medications and can improve blood circulation throughout the body.
3) - Is by far the hardest part and I believe is a result of the first two steps. I believe in order to experience success one needs to also experience failure in order to find the limit of tolerance (within reason, ie don't try running across a highway if you experience vertigo triggered by uncertainty or in any case for that matter) - regaining self confidence is finding what can and can't be done and doing everything to improve it through physical rehabilitation and possibly the use of safe medications which assist the circulation of blood to the brain.

Improvment from this is a long term committment I find, but it's potentially not an irrepairable one, and my ideas stem only from personal experience (as opposed to doctors advice).

This is an excellent topic, by the way, and before I forget there is a list of eye/balance exercises known as the 'Cawthorne-Cooksey' eye exercises, found *free* online at :

http://www/tchain.com/otoneurology/treatment/cawthorne.html

These can assist eye astigmatism issues and also balance concerns - I've been doing them twice a day for two or so years and so far doctors have gone from saying "Well, you're screwed" (essentially) to no longer being certain of their initial statement as my double vision is now gone and the shakiness only occurs when lightheadedness presents itself.

[Daniel]

Also, another thing I do is aimed at logical thinking and short term memory retention by solving Japanese sudoku puzzles - briefly described, these are 9 blocks of squares each containing 9 interior squares with each block put together to form one large set of 81 squares. Initially, the puzzle only provides 1 or 2 numbers in each block which are 1 or 2 of the numbers 1 to 9, but never 2 of the same number in a single block.
The ultimate goal is to fill in the remaining blank squares with the remaining 1-9 numbers in each of the blocks so that each block of 9 squares contains each digit of 1-9 and each line of 9 squares running both vertically and horizontally has each individual digit 1-9.
There is a free online site where these can be found but be warned, if it's started it becomes very, very, almost painfully addictive yet I've personally found it immensly helpful for my logic and memory retraining. The site address is :
http://www.puzzlechoice.com/pc/sudoku_puzzlex.html

[Daniel]

Another balance aid I use is to practice my golf swing - it sounds unusual, I know, but when a club is used the person swinging it must raise the club back over their head and swing down while trying to keep their head and eyes focused on the target and at the same time ensuring the correct shift of body weight giving the shot the optimal kinetic input accompanying the motion used by the club itself which can initially challenge the bodys tendency to overbalance and follow the swing.
I've been practicing using a device called a 'Driving Trainer' - for an image of this equipment here is a link :

http://www.pgfgolf.com/viewproduct/272/DRIVING-TRAINER--DB---04.asp...

This is basically a stick which is inserted into the ground with a plastic arm attached perpendicular to the stick in the ground with a golf ball at the end. When it is hit, the ball goes no where but you get to feel whether or not it is correctly struck as it revolves around the stick in the ground.
The helpfullness this presents is training the bodys internal compass, the vestibular nerve which causes vertigo issues in the brain itself, to tolerate unusual motion of the body and to also learn to keep focused on a point when the rest of the body is in motion - the implications being useful for something like looking left or right when crossing a road, for instance - I believe this helps such things as this.
The plastic putting cup listed on the same site is something which I have also been using daily for over a year now, though I'm fortunate enough to have a mechanical one which shoots the ball back (well, lazy actually) but nonetheless the principle is the same - correct body motion while keeping fixed on a target.
To show how this has helped me, when I first began using the swing trainer device I'd often swing and hit the ground underneath or overbalance and risk falling over. As my brain compensated for the demanding motion I began to increasingly hit the target and also I found that my frequency of presyncopal lightheadedness decreased with it where now it is virtually a bad memory.

Supplementary to this point I've also found that monitoring my frequency of dizziness/lightheadedness when I go on my daily half hour walk has yielded a much raised self confidence - where I began suffering an average 3 attacks when I crossed roads or over stepping stones at a percentage chance of 300% or so chance of happening (ie I averaged 3 attacks), now I have about a 27% chance of it happening once today - and I believe knowing the mathmatical chance has aided in regaining the self confidence I've repossessed.

[Elizabeth]

Great things, Daniel. Thanks for sharing them with us. I think stressing that rehab./physical activities should be approached slowly was valuable indeed.

[Daniel]

Well, my sister, who works as a physiotherapist and helped *immeasurably* in convincing me to get off my behind and give a hoot about getting better mentioned that she's treated many people with brain injury and seen the flip side in those who perhaps sell themselves a little short by not trying enough and she told me, later confirmed by a doctor other than the negative one I had at the hospital, that the human brain is the most adaptive part of the body and, while an injury of this type involves the brain and therefor is more often than not more apparent in speaking to an individual than someone who's broken, say, an arm, the human brain is perhaps the most capable part of the human body to repair itself - encephalitis is a virally induced swelling in the most complex part of the human body and a part which is capable of learning. If serious damage is caused to a bone it simply may never be the same again, or even of use if tendon damage and nerve damage occurs, yet the brain can take such nerve damage it has and, provided its owner is keen on retraining it to work, it can begin to repair where most other parts of the body simply would not.
I spent the first two years of recovery largely incapable of pronouncing words which begin with the letter 'r', like for instance 'race', or 'rag', but in my shower at home I have a two year old bottle of shampoo which, while finished, is how I begin my day, everyday, by reading aloud the information on the back and now pronouncing the letter 'r' is largely no problem as with about 90% of the wording (I still have problems with the phrase diazolidinyl urea which is an ingredient) but the moral of the story is straight forward enough : USE IT OR LOSE IT. Consequent to realizing the truth behind this apt phrase I try to use everything I can in order to improve and so far in terms of the depth of recovery the sky really seems to be the limit and it's often only when life doesn't seem so great that progress seems slow, so I try to forget about that stuff and get rehab done first and foremost - I see it kind of like being a mechanic for my own body and tweaking things here and there with newfound rehab techniques - I think positivity creates progress and it's only by constantly asking if something new should be tried or added to anything else which helps that progress is made.

[Daniel]

Y'know, I read my verbal diahorrea which I've scrawled above - I outline things like exercise with cardiovascular concentration, doing mind puzzles like sudoku (just discovered the application here, by the way - love it, thanks), taking blood circulatory medications, doing eye and balance exercises, studying...whatever else, and I now see that the apparent key to improving from encephalitis is *not* so much what you may specifically do in order to improve yourself, but more how you stick to doing them and the tenacity with which you approach a given task.

When I listened to music prior to falling ill, for instance, all I heard were a collection of notes forming one block of rhythmical sound with some personal message which a drunk or stoned artist thought up when he or she was in a less than desirable state - but now, I still enjoy the same stuff, but I try to hear what the musician is trying to say and thinking not on how cool the tune is alone, but also how the message I interrpret is relevant to the way I see things also.

I think the relevance of mentioning this is that this take on music is something I've acquired post infection and, like before, whenever I picked up my studies or considered going for a walk - I did so only because it seemed absolutely necessary at that moment in time, not because it was a good opportunity to do something worthwhile and get it out of the way early, providing the most personal gain achievable.

This is the point I'm getting at as a result of this : PROCRASTINATION is truly the thief of time, as they say, but in our cases, I reckon it's stealing health.
Therefore, the single most underlying and critical recovery idea and advancement which I have obtained since 2005 when I fell sick has been the ability to prioritize tasks and to stick to those tasks which have been allocated such priority :
I don't, for instance, decide to go to the gym after watching a tv show, I tape it and reward going to the gym through watching what was taped : I don't get half an hour of Playstation time (recovering gaming addict) until I've done my study and I can't swing the golf club on the back lawn until I've been for my daily half hour walk.

This prioritization of responsibility has become such an integral part of my life now that I haven't sat around with the PS2 in weeks, just a few minutes here and there, my dizziness is today (Feb 22, 2009) at 76 days since the last time I suffered a serious bought of presyncopal lightheadedness, on Friday I completed my 547th gym visit and planned out a new chapter of my novel I'm writing while also setting out new Chinese vocabulary to learn after 2 hours of study beforehand.

My point is *not* to be boastful in mentioning this, but to instead stress that all the above has helped achieve the improvment I've been blessed with and allowed - these tasks would have previously been done at one or two a day prior to encephalitis before slacking off, but now there's simply no time to do anything but improve and thank god as I do that on Tuesday, fail or succeed, I have a voluntary job to attend - the payoff for having meticulously stuck to my routine and chosen not to slacken off, but to prioritize time in order to fit in all which needs to be achieved in order to conquer encephalitis.

Essentially, the underlying point I add is PRIORITIZING time and knowing that waking each day is not a chance to find an excuse to do anything but what should be done, but instead an opportunity to continue climbing your way to the summitt of what is an enormous physical mountain to climb, stopping only now and then to take a breath and enjoy life when the days climbing is done - that's what's important, I reckon.

[Daniel]

I suppose, to clarify the above, knowing what you can achieve on any given day before reaching your limits - whether that's a comparatively big step for some like standing up might unfortunately be, walking out the door to get the mail from the mailbox, or taking the first busride into town after 2 or so years of dependency on others - I think the best way to do this is to guage where your minimum level of achievement is : what you can *honestly* say that the maximum challenging task which can be attempted is (I don't know anyone else in recovery in person, so I'll unfortunately need to use myself as an example) : when I used two crutches after coming off the chair, walking to the letterbox, at the end of our old, 30 or so metre long stoney driveway and back was *exhausting* and caused dizziness, which was both frightening and painful/uncomfortable.
Over the following month I got used to it and even dropped down to using one crutch. At this point I walked the block and felt like I had started again - then there was the gym which followed using home equipment (which was like walking the driveway instead of the block - home equipment v gym usage, that is) - doing half an hour of study on top.
The study climbed quickest, and now it's at about 3 hours/day over a 6 day period, but the bottom line is simple :

Perseverance pays off - find the achievable limit and extend it only when it feels possible

From being driven to the gym and a 5 minute walk around the block, I moved to taking the bus first with, then without mobility aids (a crutch), and the walk grew from 5 minutes to 10,20 then 30.

Recovery, to me at least, is all about meticulously gauging where your limitations are and what can and cannot be achieved at your highest level of performance with optimal success.

Today, there are no more crutches, there is no more double vision, study and rehab are at about 8 hours/day - all because I followed the rule of adding where possible but doing it slowly.

To me, a rehab idea is a great thing, but how you choose to view it : with logic and meticulous execution, or panic and depression, is the telling difference between whether success or failure is achieved.
In the end, I suggest that the best aid is finding what keeps you content and motivated to do anything is crucial : if you feel motivated then *nothing* will stop you finding more tangeable methodology towards improving.

[Daniel]

I've written so much in this thread that even when I skim read the sea of opinionatedness which is my verbal diahorrea sprawled out in linguistic form across this thread for all to see, I can't tell if I've mentioned a critical note about avoiding dizziness which I've learned, so bear with me :

- How you breathe when you do anything which habitually causes lightheadedness to occur is the difference between it occurring and not :

In my limited understanding, when we exhale and inhale, the circulation of blood to the brain is altered so, for instance, if an intense emotion like fear is experienced, then the elevated heartrate will cause this circulation to occur differently and therefore if incorrect breathing is performed then the perpensity to get dizzy or lightheaded is increased.
The bottom line is trying not to get overly excited or nervous about something, and the tolerance in regards to not becoming lightheaded when trying, for instance, to cross a road, stems in my experience from training, trial and error resulting in higher self confidence with better breathing techniques.

Using the example of crossing a problematic road, for instance, I think is skipping to the end without first exploring the correct preparation :
* Cardivascular fitness results in better blood circulation through improved fitness and heartrate, aswel as lessening body mass resulting in less required circulation
* Doing the eye excercises (Cawthorne-Cooksey) which I noted and gave an online link address to will lessen any degree of eye astigmatism (potentially - it did for me, anyway) and provide less uncertainty and fear in the attempt
* I find the time of day makes a difference also - in 2007, if I walked before 1pm then generally I was doomed to become lightheaded. In 2008 it was 11am, and now it seems to be 10am - I think morning lethargy and wariness is exascerbated through this kind of illness, reversed only with rehab and adaptation
* * * Correct breathing - getting back to the road analogy for a minute : standing at the roads edge and getting ready to cross feeling uncertain with a perpensity to become lightheaded, is the result of feeling incapable of achieving the task : the eye excercises/physical exercises and so forth empower a return of this feeling of being capable and a knowledge or at least suspicion that on that occasion crossing will be fine.

So, as you stand at the edge of the footpath, ready to cross the road - it's midday, so not too early, you've recently gotten some exercise so are feeling more energetic, did the eye excercises prior to leaving the house, perhaps took some gingko biloba intensive medications to improve your blood circulation, and now consider stepping off and crossing the street, firstly checking for traffic and then *exhaling* (but not too hard) as you begin - it may take a few tries to work, but *trust me* - I haven't had a full blown dizzy spell for 76 days from today after spending about two years doing the above suggestions - the improvment was swift to begin, but it took a long time to go from beginning to improve, to nearly fixed as it feels now like.

Dizziness and presyncopal lightheadedness *are* reversable, you just gotta keep finding new things to try and do to fix the problem and *not* stop doing them, but note the progress over time instead.

[tobecome]

Using a dayplanner so as not to forget appointments. This one is crucial for me.. Last week i missed two appointments.
Cranial sacral massage..this has been very beneficial I would say emotionally, physically and spiritually...balance is key.
Exercising..swimming and walking and biking are my favorite. All help with my balance too.
Eating healthy..especially smaller meals throughout day.
vitamin b supplements for survivors and caretakers..anyone dealing with stress
omega III..and flax seed oil ,drinking plenty of water
journalling
taking epsom salt baths with a few drops of essential oils Lavender my favorite.
wearing perfume..gives me a 'pick me up' * light clean scents ie..classic bannana republic cologne

[Daniel]

Oh, I couldn't agree more about the day planner - I've had one for each year since 2006 after 2005 (initial year of illness) was like every hour felt like the morning after a whopping night out on the grog in that I felt as I did *and* I had little recollection of prior events - ironically, right now I firmly recall lying on my bed and looking at the setting sun illuminate the curtains and having completely no idea if it was coming or going and if it was tea time or breakfast - the planner is like having someone with you to remind you of what's happened throughout the day, and as my noting became less trivial fact intensive (eg noting that someone rang after lunch or I ate cereal at breakfast) and dwell on more important things to me (eg new Chinese vocab learned that day) - it evolved into marker points on the page, surrounded by small, squared tick boxes (I still use this method today) :

For example, I note if I've been on my walk on any day and if I had any dizziness/lightheadedness during it - whether I took a bus or not and more importantly how much cash I have left on my buscard, whether I've been to the gym that day or not, done eye exercises and so on and so on : each box has a reminder activity of something to be done that day, so I can see it, know it needs to be completed or is done and no longer needs doing.
I believe this has had serious, positive implications upon my ability to remember things and get into good habits without forgetting and rushing things at the end of the day or repeating doing anything.

The diary is *so* critical to me personally that I attribute a great deal of my recovery to it : I always know if something has been done or not, if I have enough cash to catch the bus, aswell as small things like something I see on tv which I wanna buy.

The bottom line is that the dayplanner = less stress and more order of thought, and somewhere to jot something down before you forget it : in time you adapt, become more proficient, and it's just something which is a good idea as opposed to a necessity.

May I ask you, Tish : what are the benefits of omega III? What does it do for you?

[tobecome]

I think it helps with my memory. I feel better when i take it consistently.
I have found that not all vitamins are made similarly. I can take a different bvitamin supplement and not have same effect. The quality of company is a crucial element.
tish

[Daniel]

Correct me if I'm wrong, but I was under the impression that the omega III supplement is extracted from fish oils (possibly, that rings a bell as I write it) - and therefore is useful in stimulating brain activity, much with the same effect, I imagine, as gingko biloba extract does - though it stimulates the circulation of bloodflow to the brain itself and is perhaps therefore more designed for physical function, whereas omega III again, in my extremely vague knowledge (I'm more or less drawing upon stuff I've read or heard), omega III is possibly some sort of stimulant which assists mental function in terms of thinking processes and clarity : I imagine that if one were to take omega III in conjunction with gingko biloba intensive medications - provided there're no adverse risks in doing so, you'd have yourself a souped up magical mixture of neurological and physical fotitude.

On a more serious note : I imagine that with your taking the omega III, and I assume you've been doing so for a while now, your body has perhaps adapted to expecting its benefits, hence your first sentence ("I feel better when...") - that's not a bad thing, incidentally, it's a great reason to keep taking it as it obviously is working well for you.

I agree that surrounding oneself with company which demands a higher concentration aswell as asking for conversational participation is a must : how does one just simply conjure up a renewed ability to converse when it's been affected by brain injury if no one else challenges the sufferer to practice social interactivity? This brings me to a question I ask you :

Have you always been into socializing throughout your recovery or have you had to relearn how to participate in public again and, if so, what did you do in order to relearn the confidence and ability to do so (I get the impression you're a somewhat proactive lady) - how did you take the step past doubting yourself and your ability to do anything and get out there and do it when *so* many people see someone with a brain injury and belittle them with how they choose to treat them (eg as a simpleton)?

I guess the bottom line is, how do you relearn to regain self confidence? To me, this is the holy grail of encephalitis recovery, self confidence = slower heartrate = less dizziness/lightheadedness = greater physical control and comfort = normality
I feel much more confident than I did a year ago but the question still remains whenever I prepare to take a bus, 'will I faint as I get on? What are all these people thinking as I do so? I hope I don't see any teenagers" and so on and so on - can you identify with any of this?