Tikkun Olam

...CRPS, or Complex Regional Pain Syndrome, formerly known as RSD-Reflex Sympathetic Dystrophy.  Amazingly, there was a brief, unscientific report about this condition on the news in New York.  I say "amazingly," because it is not well-known and so far there is no cure, let alone an understanding of this mysterious disease.  Neuroscientists need to continue to research the causes to find a cure. 

As many of you, dear readers, know--my youngest child, my daughter of 24 years, developed RSD/CRPS in her 22nd year, from an accident.  She was hit by a car in her left knee as a pedestrian, crossing the lane at her security guard job.  The accident itself was minor, thank G-d, but instead of healing she became worse and worse.  First, she developed RSD ( we had never heard the term before and knew nothing about it) in her left leg, where the original injury had occured.  Later it spread to her right leg, and as a result she is now in a wheelchair.  At twenty-four. Although there is research being done to determine the causes of RSD, also called today CRPS: Complex Regional Pain Syndrome, the definitive causes are yet unknown, and to date, there is no known cure. My daughter has a blog, My Personal Battle with RSD , which she began as a therapeutic tool to channel the despair and frustration she felt since developing this condition.  Although she is st...

Not continuing yesterday's post yet, because a short time ago my daughter posted photos of herself speaking at the Federation event in San Diego.  Remember, the JDC (who funds Federations) paid for her trip to the States to speak at their Board in New York to be an advocate for disability awareness and accessibility.  When I saw these pictures, I knew I had to share them with my readers. Her long, three-month trip to the States is drawing to a close. Thank G-d, she was with us here at home for the entire month of November, and then on and off with us in Florida for our family Bar-Mitzvah.  Where did the time go?  She returns to Israel this week, back to her little Tel-Aviv apartment, hopefully not waterlogged from last week's storm.  Back to fighting for good health care, for doctors willing to help her and give her new therapies, for her Kupah   (HMO) to pay for those therapies, for her lawsuit to finally be settled (who knows how long it will take), f...

My daughter, known to you as Rambo, has a debilitating disease.  She developed this disease as a complication of a car accident, hit in her left leg by a poor--and typical, I might add--Israeli driver.  She has RSD/CRPS (Reflex Sympathetic Dystrophy, or Complex Regional Pain Syndrome), a neuropathic condition for which there is yet no known cure.  RSD is a chronic pain condition: she is in constant pain, which she tries to control by taking daily medications. In addition to her other meds she is also on a transdermal Fentanyl patch which she places on her arm and changes every three days. Our daughter generally is not able to eat much, as there are gastronomic side effects to her disease.  She never knows what each day will bring: often, she is nauseous for no apparent reason (the reason is RSD), and without having eaten anything, she will vomit up stomach bile. Marijuana would probably help my daughter control her pain. Marijuana could give her energy, and appe...

I began writing this on November 4th, but it became a draft which I never finished.  My daughter has been here already since November 1st, and she's 'hit the ground running'- figuratively speaking, of course.  More like she's hit the ground rolling, in her wheelchair--going from speaking engagement to VIP receptions to meeting with her former Junior High School principal to talk about old times and set up a day to speak to the students, to doctors, to 3 MRIs and one CT scan in the ER.  In between that we've had dozens of friends for Shabbat meals, people coming in and out visiting and a friend, colleague and professional masseuse giving her two massages already (on her back, not her legs) and hopefully one or two more before we leave for our grandson's bar mitzvah in Florida.  I am posting this because I wanted you to see what a disabled person might have to go through, in a situation where there is no ADA--Americans with Disabilities Act . After a flight fro...

It is almost the end of November and I haven't written since November 1st.  My daughter, known to some as Rambo, after having been stranded by Hurricane Sandy in New York at her cousin's place which lost power (despite the fact that they were beyond the evacuation zones and the danger zones: beyond Zone C), was finally able to get a flight, 4 days later (-as her flight had been cancelled like so many others) and has been here, at her parents' home, for 2 weeks now. We have been so busy and my schedule has turned upside down, running to doctors, ER, pharmacy, taking her to events where she is speaking to and meeting people important to her cause, the promotion of awareness of and research into RSD/CRPS, in addition to having friends over for Shabbat meals and friends and acquaintences dropping in to visit; and as a result my going to bed late, I have not had the energy nor time to write. Operation Pillar of Defense has changed this.  It is enough--enough of rockets raini...

This is for all the disabled people out there, and also for those with debilitating diseases . So you say you 'can't dance?'  It took me a minute to see that the male dancer is...well, watch the video.  Then, watch the next two videos. And don't ever again say "I can't."

I just read my daughter's RSD Blog, and although I had spoken to her about the 4th of July barbeque right after it was held at her Tel-Aviv apartment, and knew what had ensued, I was very moved by what she wrote about it, and decided to post it in it's entirety here.  This is my daughter, in a wheelchair for a year with a so-far incurable nerve disease called RSD/CRPS (Reflex Sympathetic Dystrophy, or Complex Regional Pain Syndrome), whose life changed in an instant due to a relatively minor car accident from "normal," to disabled, at the age of twenty-three. Please visit her blog, My Personal Battle with RSD .  Here is her 4th of July post. Perfection, Bliss, and a `whole’ lot of Soul… This past 4 th of July, I bore witness to the most beautiful and pure thing anyone could ever possibly view.  Some people might say that that is a bit extreme of a statement. These people are right. It is incredibly extreme. But, it is true. Imagine seeing a s...

The Times of Israel has published an article about a new reality show depicting capable, intelligent women who are succeeding in their lives--and they are in wheelchairs!  My daughter, still with CRPS and in her wheelchair, has the strength of character to succeed in her life as well.  Read on... Women in wheelchairs push boundaries in real life and on TV In a trend of reality television, ‘Push Girls’ stands out for its non-sensational depiction of women who can’t walk but are also gorgeous, athletic and ambitious By Naomi Pfefferman June 11, 2012, 10:26 am The cast of 'Push Girls,' a new reality series. (photo credit: Sundance Channel) LOS ANGELES (Jewish Journal/JTA) — Mia Schaikewitz parked her shiny black Mitsubishi Eclipse in front of her graphic design office in Pasadena, California, looking glamorous in her ...

My daughter Rambo is a special person.  Well, all my kids are special.  But she has developed a quality that has been drawing perfect strangers to help her, and bringing out the best in these strangers.  Let me explain: she is twenty-three years old, and suddenly, for almost a year now, she finds herself in a wheelchair, in constant pain, and unable to support her own weight--or any weight whatsoever--on her feet and legs, thus unable to stand up, and of course, walk. She has been on her own since age 15, when she left for Israel after one year of high school here on her own, without her family, through a program called Na'aleh .  At the completion of three more years of high school in Israel and in two different schools, she was one of the few students on the program who stayed and stuck it through: most of the teenagers went back to the States and to their families.  She went on, after graduating, to enlist in the Israeli army (the IDF, or Israel Defense F...

My daughter as you know has RSD/CRPS in both legs, and is in a wheelchair.  She is not , however, considering a Ketamine coma, and neither am I.  She does want to try a Ketamine infusion, but the doctors she has seen are refusing to do it.  They keep saying she needs to 'force herself to work through the pain.'  How much do they really understand about this disease? We will try to find out if it is possible to do this treatment (the infusion) after we get there next week.  Here is a video of a girl with extremely severe RSD/CRPS who decided to undergo the Ketamine coma treatment.  It is frightening to watch.  Please pray for my daughter...

November is CRPS/RSD Awareness month.  From my daughter's RSD Awareness Facebook page (please visit, be a fan, spread the word!):   Someone I Love Has Complex Regional Pain Syndrome (CRPS) aka Reflex Sympathetic Dystrophy (RSD) ... November is Complex Regional Pain Syndrome (CRPS) aka Reflex Sympathetic Dystrophy (RSD) Awareness Month... Complex Regional Pain Syndrome (CRPS) aka Reflex Sympathetic Dystrophy (RSD) is a chronic pain syndrome characterized by severe and relentless pain that affects between 200,000 and 1.2 million Americans & over 5 million worldwide. CRPS was first documented in the United States during the Civil War. It was named Causalgia due to the intense burning pain suffered by soldiers long after the pain from the healed wound should have diminished. The name has changed many times over the years, but, regrettably there is still no cure. Nor, is there an effect treatment for all patients with the condition. Here is a reproduction of o...

Haven't written for a while about my daughter and her ongoing disease, CRPS (formerly called by its first acronym, RSD), so it's about time.  If you've read my older posts on this subject, you will remember that she was admitted at the beginning of August to a private hospital in Tel-Aviv called Re'ut (in English meaning "friendship"), a rehab hospital.  She received various therapies there, including physical and occupational, for her painful, non-functioning legs. These included mirror imaging therapies, Graded Motor Imagery and others. At one point, when she heard that the hospital couldn't have her be an inpatient indefinitely, she told her physical therapist to give her crutches--that she would force herself to stand up and walk, through the pain.  Her therapist said she was totally not ready for crutches, but she found her a special walker (I wrote about this in a previous post ) which would support 85-90% of her body weight, and my daughter used...

Towards the New Year, Rosh Hashana 5772, I would like to recap my daughter's situation and extent the hope that she will continue to improve in her efforts to combat this terrible disease of RSD/CRPS with the goal of complete ambulation and personal, pain-free independence. Some time ago she took it upon herself to force herself to walk using a special walker, on which she places about 85% of her body weight by leaning her arms on the armrests, similar to this one: She is still unable to place most of her weight on her legs, as she is doing this through her pain.  Finally, however, the doctors listened to her and took her off most of the medications and narcotics she was on previously, which did nothing to help her, but only drugged her up so much that she would almost literally fall asleep into her soup, so to speak--the list was interminable: Elatrol, Clonazepam, Gabapentin, Oxycontin, Cymbalta, and later Lyrica instead of Gabapentin, and Valium and Percosets. They are go...

I'm going through Writer's Blog, er, Block.  Have been thinking that since Sept. 6th, I haven't posted a thing.  And things are happening.  Bad Things . And Good Things .  First, the bad--at least, it doesn't bode well for Israel and the free world--that the so-called "Palestinians" are appealing to the U. N. for statehood , G-d help us.  And whom do they choose as their honored spokesman? This peace-loving individual, seen in full here on Palestinian Media Watch  (hat tip, Yael ): Mother of 4 terrorist murderers chosen by the PA to launch statehood campaign by Itamar Marcus and Nan Jacques Zilberdik The Palestinian Authority chose the mother of 4 terrorist murderers, one of whom killed seven Israeli civilians and attempted to killed twelve others, as the person to launch their statehood campaign with the UN. In a widely publicized event, the PA had Latifa Abu Hmeid lead the procession to the UN offices in Ramallah and to hand over a letter for...

I needed to compose at least one more post in the month of August.  The reason August needed to have at least one more post, is that otherwise, it would not be much better than July, which (gasp) had only one--count 'em-- one post.  My worst posting-month ever.  I think.  They say (-no idea who 'they' are) that bloggers blog because they have no "real" lives, but rather, that they live vicariously through their blogs, in a "virtual" world.  When I first found out about my daughter's illness and became super-obsessed with her situation and her subsequent treatments and therapies, I suddenly had a "life." Terrible way to go, but be it as it may, there it was.  I suddenly found myself, in the "real," physical world, with a vengence.  There was no time and certainly not enough energy to put my thoughts down on paper, er, Word Document.  Surrounded by a daughter in a wheelchair who needed care and companionship, and two rambu...

I am a jumble of mixed emotions right now.  Today is my last full day in Israel.  I am typing this from my daughter's laptop, sitting next to her on her wheelchair while she is in bed, after sleeping off two extra Percosets she received after almost falling off her wheelchair between it and her bed this morning.  It is so hard for me to grasp that I won't be seeing her for a very long time, let alone not seeing my two sons and their wives, and my little grandchildren.  My oldest grandson, all of two years and nine months, realized in his little toddler way that his Savta was leaving.  I had spoken to him about that I'd be flying in an airplane far, far away (in a galaxy...), back to my home, and we would talk to and see each other on the computer's camera, the way we did before I came.  But then, he didn't really know who Savta was, as he had never seen me before.  Now, I had practically lived with them for two months, so he now knows who Savta is....

Actually, I am leaving in two weeks, so it's about week number 7 or so.  Got a lot accomplished, haven't traveled anywhere, including to visit relatives, but have traveled to various medical centers, pharmacies, clinics, by various interesting means, such as ambulances and wheelchair accessible vans.  Oh yes, and today I visited a Home for the Disabled in Gilo.  Some fun. My update is that my daughter was finally given a medical board by the national insurance, and was granted 100% disability for six months, retroactive to the end of April, which means it ends in October.  Then, she will have to go before another medical board, but whereas the first one was an Orthopedic one, this next one will be a psychiatric and neurological one.  Also, she was accepted into full hospitalization at the Re'ut Medical Center in Tel-Aviv, where they have expert medical care for RSD/CRPS patients.  The treatments are very difficult: there is not much pain reduction (none of...

Basically I have no time to post.  I am now sitting here at the table in my older son's pinat ochel near Yavneh.  I had been supposed to be sleeping at friends, in a yishuv south of Jerusalem, and tremping to my younger son's apartment in the same yishuv, but in actuality I was staying over at my son's (with most of my luggage at my friend's) every night for the last two weeks.  It is too much for him, having me there in addition to his disabled sister.  I have stuff that I brought with me, to my son's--not my two big suitcases but an overnight, laptop case, and bags of, just stuff . It's too much for him in his tiny apartment.  Caring for his sister is emotionally exhausting, and his wife is a true tzadeket, silently putting up with a disabled person and her mother basically taking over their lives. We are trying to figure out how to get my daughter to a hospital in Tel-Aviv which also specializes in RSD.  Unfortunately it is a private Medical Center, ...