Google voice – I’ve been working with google who is developing a device that can understand my voice (usually only the kids can understand me).  They’ve made something that (once trained) does a good job of correctly understanding my voice.  In one mode it simply prints out what I’m saying, giving me a mobile closed captioning device that can accompany me wherever I go.  They also have hooks so I can use google assistant, share captions, and control home automation.

When I was in rehab a social worker suggested that my husband seize opportunities to get out more.  That excellent idea stays with me now, 8 years after my stroke.  I encourage my husband to enjoy life though I miss him terribly when he is away. When he does this it recharges him and ultimately helps me too.  The truth is that when we married he did not sign up for this. Our traditional Jewish ceremony did not include the admonition “ for better or worse.” My husband said this was implied.

In doing this I find that everything helps a bit.  Gabapentin ( Neurontin) works best for me. I usually take it in combination with Cymbalta. Right before my periods my pain flares up to the point where I have trouble distracting myself. I dub this “ PMS pain,” and have found that adding ibuprofen helps.

I have tried acupuncture which can ease pain for a few days and, since I live in a state where medical marijuana is legal, I have tried this too and it helps.  Marijuana has two active ingredients …CBD, a muscle relaxant, and THC, the one that causes users to get stoned. I have found that the CBD- only chocolates have enough impurities in them to get me stoned.  It took me some time to find a source that I felt comfortable using in front of my children. A hybrid of both ingredients works best for me.

The 1-10 scale, the use of which asks you to evaluate the level of your pain, is a pet peeve of mine. To me, if the pain is intense and I ask myself how much I am hating life at the moment, I decide to treat myself to something delicious.  Today it is cheesecake.

I have tried a number of Eastern, Western and Alternative therapies.  I have a strong Western bias and while it has been many years since my stroke, I am still making progress.  I went from not eating at all by mouth to eating food ground in a blender to eating soft solids. I can’t always see day to day progress, but Angela, who sees me less frequently, points it out to me.  What has worked best for me is traditional therapies:  PT, OT, Speech and exercise. I am always on the look out for new ideas.

 

NEW:  COVID-19 UPDATE:  To reduce any possible damage to my lungs, I went back from smoking to edibles to deal with pain.  To try again to find the compound that I conjecture is in marijuana, and may help with brain injury (see below), I’ve been looking into tinctures, which have a sublingual (under the tongue) mode of absorption.

To answer my own question, I’ve been having some luck lately with smoking marijuana.  Why smoke?  Two reasons.  First, when you eat, the compound must reach you by first going through the stomach, and then a bunch of organs, most noticeably the liver, in a process known as first-pass metabolism.  Smoking bypasses all this by letting the compounds get into the blood directly through the lungs.  Second, you have more choice of strains  with smoking.  Modern strains overproduce either THC or CBD.  To try other compounds you need to start with an original strain.  I called around and was given  OG KUSH.  It seemed to do the trick for me.  And with only 3-6 puffs a day, I figured my lung cancer risk was minimal.  I didn’t get results right away.  It took a few months to see the initial results.  I’m continuing on it so hopefully more to say soon!  The results are only modest so far, but that’s better than I had before which was zero. zilch, nada.

For pain, see my comments in Dealing with pain

The Goal of this site is to provide a safe place for positive discussions on issues that come up with people with brain injuries.

Who are we?  Diana is a PhD scientist who was working part-time at a government facility when she had her injury.  Now she is home full time, and now her kids help take care of her!  Dina suffered a brain bleed (technically a type of stroke) caused from an unusual condition called an AVM.  It is similar to an aneurysm, in that it is a birth defect, but this one is a defect in the blood vessels.  This one was quite dramatic when it happened, because Diana was on the East coast visiting friends for New Years at the time, so she did her rehab there, then flew to her home in California.  She has had multiple brain surgeries, and additional surgeries to deal with secondary issues resulting from this injury.

Angela is a yoga instructor at Stanford, who has numerous private clients who have balance issues resulting from brain injuries, and who’ve “graduated” from outpatient therapy.  She uses a mix of yoga, PT and OT personalized to the capabilities of her clients, at their private homes.  She also oversees their home programs.  She meets regularly with Stanford OTs, and PTs, to discuss needs of her clients.  Diana also considers Angela her life coach.