Posts Tagged ‘Israel’

Alzheimer’s: Color Me Black.

September 12, 2018

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Alzheimer’s: The disease that destroys childhood memories

Malka* was enjoying a peaceful cup of coffee. Lunches were made for tomorrow. The laundry was in the drier and Malka’s father had gone to bed early. She was about to reach for something to read, a rare luxury, when the bell rang. It was after eleven. Who could that be? Coffee forgotten, Malka’s heart began to flutter. She pressed the intercom button and, her voice trembling, asked who it was. The voice was hesitant,   a bit embarrassed. A neighbor was just coming home from evening prayers and…She ran to open the door and there stood the neighbor with her father, dressed in pajamas, barefoot and looking very confused.

Alzheimer’s. It colored every moment of Malka’s days. Black.  This was her father. The one who had taught her to ride a two-wheeler, cheering loudly as she wobbled down the driveway. The one who held her arm tightly, offering emotional support ‘forever’, as he walked her down the aisle toward married life.

He had always been there for her. His soothing words and practical suggestions had made all the difference. Her father. Ten feet tall and all-powerful.

Now there he stood. A pitiful, old man. Helpless.    Her tower of strength had crumbled.

Truth be told, this wasn’t the first time. He seemed to be in his own world.   He often referred to her as ‘Mommy’ and her children by the names of his siblings. He would offer to help her scrub the laundry on the washboard or shovel the coal into the furnace.

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Alzheimer’s: Can this really be my soft-spoken kindly father?!

The worst was when he shouted at her or her husband or the kids in such a mean, sarcastic way. He had never been like that. It hurt. Oh, how it hurt. She knew it was the disease, not really him. But each word was excruciatingly painful.  She tried to help him but felt so inadequate.

Malka’s case is typical. There are 130,000 cases of Alzheimer’s in Israel, many of them being cared for by  relatives. Relatives who are in desperate need of help.

As part of the goal to provide suitable responses for dementia-patient caregiving relatives, Ezer Mizion Tzipporah Fried Alzheimer Family Support Center runs support groups and workshops.

In these groups, the women have an opportunity to learn about the disease and ways of coping with it, drawing from the experience of the group facilitators and the other women in the group. The group serves as a “safe” place for engaging in discussion and bringing up the many emotional challenges that come with caring for the ill relative. At times, it is the only setting where caregivers feel secure and are able to speak openly about their struggles.

In addition, as part of the support system for caregiving relatives, music, physical fitness, art, and therapeutic gardening workshops are available, with a double goal: To provide women with a pleasurable experience and a hiatus from the draining role as caregiver for their sick relative and to offer simple, easy-to-implement tools for working with the patient at home.

Our goal?  To provide a supportive response and personal relief for women caring for a relative with dementia, empowering them as caregivers and strengthening the sense of self-worth in this excruciatingly difficult period of their lives.

 

Ezer Mizion provides services to over 660,000 of Israel’s population annually in addition to its Bone Marrow Registry which saves the lives of Jewish cancer patients the world over.

 

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When Their World Came Crashing Down

August 29, 2018

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Roni and Bar’ was written on the wedding invitations. The marriage was to take place in September. That was before. Before a leukemia sabotaged their every dream.

Roni had discovered small lesions on her face. Her neck muscles cramped, glands in her neck swelled, as did the roof of her mouth, and blue marks appeared on her legs. It didn’t look good and it was not long before the diagnosis was confirmed.

“This can’t be,” cried Bar. “Not now! Not when we were about to marry. Everything was ready. The invitations. The hall. The band. ”

“Don’t give up hope,” the doctor said. “A stem cell transplant can cure her, Bar. Your bride will be as good as new. We just need a genetic match for her. Someone of Yemenite or Moroccan extraction. But we need it fast. Within a month. if not, …”

And so the search is on. Ezer Mizion, the largest Jewish bone marrow registry in the world, has close to a million registrants.  So far no one in the registry is a match but a drive was held in Israel and over 16,000 converged upon 36 stations throughout the country. Drives are being held in California and Florida and hundreds of swab test kits are being sent out by the NY office. Labs will be working overtime to complete the testing…before it’s too late.

Meet Roni. Share her pain.

“Someone will match. I’m sure of it! It has to happen!” Bar is optimistic and hoping to print new wedding invitations soon.

Each new registrant will be tested. The cost of each test is $50. Each registrant will remain on the database for decades, ready to save the life of any cancer patient in communities around the globe.

Moving Forward: Conquering Mental Illness

August 29, 2018

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Mental illness can be cured.

Mental illness, as the name implies, is an illness. And, again, as the name implies, it can be cured. But, unlike strep throat, a mental health patient harbors fears of facing the cure and rejoining the world. His rehabilitation can be greatly delayed due to his inability to take those frightening steps.

Ezer Mizion’s Mental Health Program, with its versatile services, includes an annual retreat. The much anticipated retreat creates an atmosphere that can enable that which cannot take place in a standard client/patient setting. The retreat has the potential to empower the patient, connect him to normative experiences, create encounters with a broad group of equals as well as to recharge batteries for the continued process of rehabilitation and provide a hiatus for the rest of the family who is invited to join.

The retreat takes place once a year with full hotel accommodations. Activities include trips, swimming, boating, entertainment/performances, jeeping, workshops and skits. The patients are encouraged to participate in the planning of the retreat, a rehabilitation tool in itself.

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Leading the congregation in prayer: a giant leap forward in combating his mental illness

The informal social interaction that comes about in this safe, accepting environment can have far-reaching effects. At the retreat, the participants experience routine life alongside their special activities. There are daily prayers with the retreat leader. A few days after the retreat, the social worker got a call from the father of one of the participants. In a tremulous voice, he shared with us that his son had gone to daven (pray) in shul (synagogue) and had stepped up to the amud (lectern) to lead the Minchah (afternoon services) as chazzan (cantor). The elated father could not believe that his son, who was so withdrawn, had found the gumption to lead the congregation in prayers. “How did it happen?” he asked the social worker. “Your son served as chazzan (cantor) for Minchah at the retreat,” the social worker answered simply.

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Working at the Rehabilitative Kitchen – a giant leap forward in conquering mental illness

Devorah* who receives coaching services at home to promote her household functioning was doing fine in running her home. The professional staff felt she was ready to begin to join the workforce obtaining a job at Ezer Mizion’s rehab kitchen. She would be fully supported by a staff mentor, working in a controlled environment but her fears did not allow her to take the step.    At the retreat, she met other women like her, raising children as she was and, nevertheless, going out to work at the Mental Health Division’s rehabilitative kitchen. A normative conversation with women like her accomplished what thousands of words from the coach and the professional staff hadn’t. Needless to say, today she works at a bakery and her rehabilitation process has taken a giant step forward.

Ezer Mizion’s Mental Health Division provides many services including individual coaching in the client’s home to improve personal functioning, mentoring in the public expanse to enhance client’s interpersonal interactions.

Rehabilitation is enhanced by a range of occupational rehabilitation services, in keeping with the client’s functional level, with the goal of sharpening occupational skills. Included is mentoring in the open job market. Musicians can take advantage of the rehabilitation program for musicians, geared to enhancing their occupational skills while professionalizing their skills in diverse musical subjects.

Group social activities, including a variety of clubs and rehabilitative activities are available with the overall goal of improving social skills.

The division is constantly growing to provide both rehabilitation for its clients and support for family members in this frightening nightmare that has taken over their lives.

Ezer Mizion provides services to over 660,000 of Israel’s population annually in addition to its Bone Marrow Registry which saves the lives of Jewish cancer patients the world over.

CP Can’t Stop Me!

July 25, 2018

Menachem Weiss, a “special” teen, reports on an angle of life that he alone can talk about

Shalom dear readers!

Remember me? I’m the one with CP – the one who doesn’t let the CP stop me from having fun. Well, not always but I try. There are a lot of things I can’t do in a wheelchair but Ezer Mizion has taught me that there are a lot of things I can do. And I try to take advantage of every one.

For the past few years I have not attended the Ezer Mizion retreat because I had an opportunity to be taken to Switzerland instead. I always had a blast at the retreats but, after all, Switzerland…This year, Switzerland is not going to work out but I wasn’t shy at all to call Ezer Mizion. It’s like a family and I knew I’d get a big welcome back.

Like always, I was worried who my counselor will be. Having the right person is so important. I need help with everything. And besides, no counselor can help me if he can’t understand me. My speech is not so great.  Well, great news! My cousin, Motty, will be one of the counselors and I’m going to ask that he be assigned to me. We get along great.  He understands me when I try to talk and he knows just what I need and how to manage everything. . So, I already registered and made up with my friend, Gavriel, that we’d be in the same session and in the same room. I hope everything will work out for the best and we’ll enjoy ourselves as we did in the past.

I’m really looking forward to it. I remember one year, we went to the ocean. I had never seen the ocean, never in my life, and the counselor was able to get the wheelchair all the way up to the waves. I could feel them! Wow! That was really something. One year we had a magician as entertainment who did some really cute tricks.  One of the days began with a performance about a king who searched for happiness. It gave us a lot of food for thought in a fun way. After lunch, we went out and there, outside, was an authentic Bedouin encampment. They even brought a real camel and walked him around all the time. They gave out drums and big darboukas and we tapped along energetically, together with the Bedouins. Leave it up to Ezer Mizion. What will they think of next?!  We also had a band and I danced, sort of. It was fantastic! We ended the day with slow songs, songs of yearning and prayer.

I had a fantastic counselor that year, Yehoshua, who looked after me with all his heart and never forgot to give me occasional chocolates so I would have a sweet, happy time.

I always start off with fears about any new counselor – whether he’ll understand me and know how to help me –  all kinds of nonsense and in the end, every counselor is great and I forget about it all and enjoy myself. But what can I do – I can’t overcome my worrywart habit. But this year, I’ll probably have Motty so I can skip my usual nervous session. I’ll let you know how it all works out.

Until next time,

Menachem Weiss

 

The “X” Days

July 11, 2018

It’s heartbreaking. Every mother jokes about the first day of school being the beginning of her vacation.  Our kids, as much as we love them, are a handful and many a mother will be drained, trying to keep up with their needs during the relatively unstructured summer months.

But then there are the others. The parents who truly cannot handle even one hour without the unbearable tension that accompanies life with a special child. As chaotic as a period of unstructured days may be, the parent of an average child cannot imagine marking her calendar with x’s on the days that he will be home.  One father of a special child did just that upon the realization and dread of the block of unstructured days coming up. Unfortunately, he is one of many.

Not to be able to relax for a moment. To be constantly dealing with the possibility of uncontrolled anger. To be unable to plan for even the next hour. To ache for your other children who ask nothing more than to be able to play a game in peace or perhaps read a few pages of a favorite book. To feel helpless, hopeless.

 Dear Ezer Mizion,

My wife and I have a special needs son, he is 14 years old and suffers from VEOS (very early onset schizophrenia) which manifests itself as SZ and PDD and ADHD.

He is, of course, being medicated and he dorms and schools in XXXXXX.

This year we await the long holidays with trepidation, 8 out of 9 weeks our son Yehuda is going to be home, through the long summer vacation and Holiday periods of Tishrei. (See attached calendar.) Without a suitable structure and framework we fear that we will not be able to entertain and provide for our son’s needs and those of the rest of the family.
If you have any program that may be suitable for our son, please inform us at your earliest convenience and direct me to the correct person to speak to.

Gratefully yours,

It is this need that Ezer Mizion seeks to address with its myriad of summer camp programs geared for varied requirements, its respite programs and its afternoon activity clubs. The programs help to alleviate pressure of physical demands and emotional strain experienced both by parents of a special needs child and his siblings. These beleaguered parents never stop expressing their gratitude.

My son is a 28-year-old boy with special needs. He partakes of many of Ezer Mizion’s programs including its summer camp and its simchas beis hash’oeva. These two events are literally his oxygen supply.

When he walks through the streets of Jerusalem, young men stop him, smile and greet him warmly. They remember him from the “Retreat.” Therefore, there is no way in the world that we could have passed this up and not registered him. Just as a person can’t go without oxygen, so, it simply was not possible for him not to attend the Ezer Mizion camp. And now that he has been accepted and his registration sponsored, I, too, can let the worry melt away from my heart, breathe a sigh of relief, and say with joy filling my heart –Thank You!

The View from Both Ends

July 4, 2018

helping handssIt feels good to give. Seeing the joy on another person’s face because of something that you did is an experience that cannot be defined. I know about that. I joined Ezer Mizion’s Linked to Life awhile back. L2L is  WhatsApp group that can be called for rides, deliveries of vital supplies and a zillion other requests by people who are dealing with serious illness. I’ve given rides to many people. Sometimes it’s a young mother counting the seconds until she can be back at the bedside of her baby who is fighting for his life at the hospital. She had planned to go by bus – even though she is beyond exhausted – until someone mentioned that she should try calling Linked to Life. In a few minutes, I appear at her doorstep, ready to give her door-to-door service. The utter joy on her face is the ‘gas’ that keeps me going even though, shortly before the request call came in, I was ready to fall into bed myself. Then there was the time I answered a call to pick up a vital blood sample from the airport and bring it to a doctor. “I’ve got a ten-year-old child waiting at the hospital. This little tube of blood can save her life,” the doctor thanked me. I’m sure I don’t have to explain to you that those words made me feel seven feet tall.

 

But now I want to tell you about another ride to Tel HaShomer Hospital. This time I wasn’t the driver. This time I was the drivee.  A family member was ill and all of us rallied to take shifts. But normal responsibilities did not disappear. A full workday remained. Homework with kids etc. You all know the routine. And on top of it all, the trip to the hospital via a couple of buses. Suddenly a precious Ezer Mizion volunteer appears. For him, too, it is the end/beginning/middle of a work day, but, with a big smile, he takes you to the hospital and back. Just like I never fully realized what I was doing, he cannot even imagine what a huge chessed he is doing with this “simple” ride.

I greet my relative and take care of his needs until he is ready for a nap. Then I wander around the hospital ward and notice a mother looking very frightened. When I ask her how I can help out, she explains that there is a special medication that she’d left at home. Quickly, I ‘flip to my other hat’. I send a message to the Linked to Life coordinator: Who can deliver a medicine from Bnei Brak to the hospital? Almost instantly, someone responds to fill her need.

The happiness, the emotion, and the blessings that burst forth from that mother’s heart the moment the medicine arrived!

I meet here the wonderful Ezer Mizion volunteers who come to give out coffee, cake, and hot food to family members during the long, hard waiting time. When I ask them how they got here and how they are getting home, they answer proudly – “With the Linked to Life volunteers.”

Dear fellow Linked to Life members, you are an important and critical part of this remarkable chessed chain of Ezer Mizion.   At moments like these, I am prouder than ever to be a member of this holy group. In the hope and prayer that all of us should always be on the giving end – only.

Want to join Linked to Life? No matter where on the planet you live, you will be welcomed.

SMS 011 972 52 580 8936

 

Nightmare: the Common Denominator

June 27, 2018

pr special sunIt’s 1:30 on a long summer Friday afternoon. There are twelve vehicles parked in the parking lot of Park Enav in Modi’in.  The doors open and fifty-eight (!) children burst out of the cars ready for an afternoon of fun. Who are they?

Each one has a different story but the common denominator is that each one is living through a nightmare that no child should ever know. One has lost a parent to cancer, another is battling cancer himself and a third came home one day to find that his mother had gone on a simple shopping trip never to come home again due to a terror attack. (more…)

Thank You from Italy

May 16, 2018

map of ItalyDear Sirs,

My name is Annalisa T. I am writing from Italy to thank with all my heart the Israeli donor who will try to save the life of my husband Mr Luca B: he will receive a bone marrow transplant between the end of April and the beginning of May at the hospital of Santa Chiara in Pisa, Italy. He is fighting, since May 2017, against a LLA (Leukemia).

Could you help me, please, to get in touch with this beautiful person? We don’t know the name, but we only know that he/she is in Israel. I really would like to talk or hug him/her. Possibly inviting him/her to come and visit us in Italy.

If it is not possible, please, forward this email to him or her.

I would be very grateful to you in this desperate research.

Thank you with all my heart and all my love from Italy to you and Israel,

Annalisa T

Wife of Patient Luca B

BOLOGNA, Italy

people helping people around globe
Lives of cancer patients saved in Jewish communities around the globe

When Annalisa and Luca were told the shocking news, they were devastated. Leukemia! Their worst fears! Family members were tested to determine if one was a DNA match but, one after the other, the answer was no. No. No. No.  Their world turned black. A bone marrow transplant could cure him but if family members did not match genetically, then who would? And even if there is some stranger somewhere in the world who does, how can they find him? And why would he be interested in inconveniencing himself for the sake of a man whom he never met? The Jewish community in Italy is small. Other places like the US and Israel have much larger communities but Annalisa and Luca had no contacts in those countries. The chances of curing Luca seemed infinitesimal. Logically, they were correct. But logic has no place when it comes to saving a life.

A tiny flutter of hope. They were told of Ezer Mizion, a Bone Marrow Registry in Israel, the largest Jewish registry in the world, with close to a million people registered, people whose only purpose in registering is to save a life of another Jew, anywhere in the world.  They were told that Ezer Mizion had an extremely high per capita rate of registrants, much more than other countries.They were told of the many success stories, thousands of people whose lives had been saved. And then one day…they were told: Yes! We have a match!

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New registrants to be genetically tested to remain on stand-by to save a life

The donor was contacted by Ezer Mizion. It never occurred to him to refuse. True, he would have to put is personal schedule on hold for a short while. But to save a life?! What’s the question! Ezer Mizion did all it could to make things easier for the donor and soon it was ‘all systems ready to go’.

Yes, Luca and Annalisa were right. Logically his chances were small.   A matching donor was not easy to find.  He lived an ocean away. He didn’t know them personally. In the normal course of events, it would take a miracle to find him. But that’s what Ezer Mizion is all about. Miracles. A caring chessed organization.  Where statistics have no place.

Celebration?

May 9, 2018

tfillinA young mother in Rechasim is battling cancer but that doesn’t stop the date of her son’s Bar Mitzvah from coming closer and closer. What the family had looked forward to for years promises to be a day of despair. Celebration? How does one celebrate when…when…? And so the days on the calendar rolled on and the Bar Mitzvah was scheduled for a Sunday in mid-April. Bar Mitzvah? One hundred people were invited but there was no joy. Both finances and mood precluded ordering any amenities including food! A bleak celebration indeed.

Is this what the boy would remember when he looks back at his Bar Mitzvah? The plans, if we can call them that, were set until Ezer Mizion’s Linked to Life came into the picture. It was only days till the Bar Mitzvah when the Rechasim and Haifa Linked to Life directors heard about the situation. With a network of hundreds, they weren’t worried. Sweet tables, festively decorated, would add a gala aura to the event. A boy is about to take on the responsibilities of a Jewish man. Happiness will permeate the drab hall. Smiles will abound. Song will burst forth.

The Rechasim and Haifa Linked to Life networks were contacted and responses poured in. The directors were not surprised.   “We knew they would! They’re people of compassion!”

Nirit: I’ll prepare two trays of petit fours.

Estie: One round cake and maybe one cut cake, depending how much I get done.

Avraham: A gigantic elaborate Bar Mitzvah cake in the shape of a Sefer Torah. I need to know the boy’s name.

Nirit: My daughter will also make a tray of Jello cups.

Devorah, Haifa: I’ll prepare two cakes, b’ezrat Hashem

Oshrat: I’ll prepare a tray.

Breuer family: Individual mousse cups.

Sara: A cake.

Rachel: A three-layer cake.

Brachie, Haifa: I’ll prepare two chocolate pies, b’ezrat Hashem.

Brachie, Haifa: And my co-worker, Chanie, will prepare 20 cups of mousse, b’ezrat Hashem

Haifa: I’ll bring a bowl with candies, like marshmallows and sour sticks, etc. nicely arranged.

Haifa: I’ll bring rum balls, a round cake, and a big rectangular cake.

Chanie, Haifa: Peanut butter pie and a special drink with small cups.

Sharvit, Haifa: Bli neder, I’ll bring chocolate “salami” rolls with all different toppings: coconut, sprinkles, and so on

Levana, Haifa: I’ll bring 10 bottles of soft drink and some bottles of mineral water. They should just be well and the place should be imbued with joy!

Osnat: Ten bottles of soft drink.

Adina Tivon: I would like to set up the sweet table with pretty tablecloths, napkins, and disposable dishes and flatware. If you’re agreeable to this, please let me know the exact place and time.

Haifa: What other possibilities are there. Give us ideas!

Sharvit, Haifa: Maybe a fruit platter, cut up nicely.

Haifa: I’ll bring a fruit platter.

Haifa: I’ll prepare three cakes, iy”H.

Vaknin, LTL Haifa: 10 bottles of soft drink.

The leaders were overjoyed and Heaven smiled, so very proud of those who know how to give!

 

 

 

When the Phone Beeps…

April 18, 2018

people helping people around globeMazel tov’s were resounding in room after room as newborns arrived to the joy of their families. But one room was quiet. A new baby was born but something was wrong. It seemed to be a heart defect. The doctors conferred.   Top Israeli pediatric cardiologists were called in for consultations. The defect was a rare one and none of the specialists had any experience with it. A solution had to be found soon. Rabbi Shimon Rogoway, Director of Ezer Mizion’s Medical Referral Department, was brought into the picture. “Yes, I do know of a doctor who has experience in this type of defect but he’s in Boston. We need to get Meir Quinn involved.” Meir Quinn is the Director of Ezer Mizion’s Linked to Life, a WhatsApp group that networks to produce emergency rides to the hospital, get vital meds from here to there etc. etc. Linked to Life has members in almost every Jewish community on the planet.  In moments, a posting went out: Urgent! Need to get medical disc from Haifa to Boston for consultation. Phones beeped and responses came in. Sara from Haifa picked up the disc and delivered to Naftali who was traveling to Bnei Brak. Naftali passed it to Shmuel in Bnei Brak who delivered it to Ronnie who was flying to Boston. Leah picked it up from Ronnie and within hours delivered the precious disc to the doctor.  Soon cautious mazel tov’s will be heard in the infant’s room as a course for treatment is set up. As this tiny human being matures to adulthood he will never be aware of how many people around the globe rushed to his aid, each one playing his part in saving the life of a fellow Jew. 

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Meir Quinn, director of Ezer Mizion’s Linked to Life

Ezer Mizion, whose logo incorporates the words: “Choosing Life” and whose  prime division, its Bone Marrow Registry,  has been saving lives since 1998, is always happy to cooperate with other organizations in facilitating a life-saving procedure.

We were grateful for the opportunity to do so when a call came in to the New York office from Renewal, a non-profit dedicated to assisting people suffering from various forms of kidney disease. A patient was desperately in need of a kidney transplant. A potential donor had been located in Ashdod but further testing was needed before the transplant could take place. Blood samples had to be drawn and delivered within 24 hours to the lab in New York. Various entities in Israel had been contacted but none were able to do so even though full payment for expedited service was offered. That is when the anxious call came from Renewal to the Ezer Mizion NY office. Can we help?

With Ezer Mizion’s Linked2Life program already in place, helping was simple. Even the 24-hour framework was a challenge but not insurmountable.  Ezer Mizion’s  “Linked to Life” knows how to get things done, with the help of the volunteers’ huge hearts, even in cases where financial and bureaucratic ‘bumps on the road’ abound.

Ezer Mizion’s International Bone Marrow Donor Registry provided the specialized blood tubes and complex paperwork for international transport. A volunteer, a nurse by profession, responded to the first request to draw the blood in Ashdod right after Shabbos was over. A second volunteer made a special trip to Ben Gurion Airport to deliver the test tubes to a third volunteer, who took them to New York. Within less than 24 hours, another international Linked to Life campaign was crowned with success.