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March 22, 2005

The last few months have seen much activity in the Sultanov household. Faizul, Alexei’s father, has returned to Moscow – and of course Dace and Alexei had a wonderful farewell party for him. They can always find something to celebrate – on January 15 they even had a party to celebrate my 892-month birthday! Fortunately for me, they did not put candles on the cake. What fun!

Christmas is, of course, a time of great celebration for the Sultanovs. This year, they again participated in the Jingle Bell Marathon for arthritis; both dressed in Santa hats, with Alexei’s wheelchair festooned with lights. They also rode on a float in the annual Festival of Lights Parade in downtown Fort Worth.

Last fall, Alexei and Dace had started performing in nursing homes and doctors’ offices. Well, the pace has picked up. On Christmas Eve they returned Plaza Medical Hospital, where Alexei had spent so much time in ICU the year before, to play Christmas carols for the patients and their families. One family commented, "What a wonderful Christmas present for all who were there. It really touched all of us at a very low moment…Thank you both again for the time you took to perform for all of us there."

In January they played during a church service at Westside Unitarian Universalist Church; again to a most appreciative audience. Then, in February, they were invited to Tarrant County College, where they performed for an audience of students and faculty. Both of these audiences gave them standing ovations. Most recently, in March, they played at Harris Hospital at a support group for stroke victims.

Everywhere they perform, their music and their message touches the hearts of all who hear them. Playing publicly again brings a message of hope, both for Alexei and for those who hear him. Their message and their mantra is NEVER GIVE UP! And they live this message every day of their lives.

Donna Witten, MSPT (Master of Science in Physical Therapy), NDT (Neuro-Development Therapy), who has become a dear friend, comes to their home to work her magic with Alexei (and also with Dace). Dace continues working with Alexei daily, combining physical therapies, speech therapy, and of course practicing their music together. Swimming in the heated pool at the nearby YMCA is also a part of Alexei’s regimen.

 

This busy household also includes a variety of animals. There is Mr. Caligula, an iguana they have had for eleven years. He was small when they got him, but you should see him now! There are also four cats named Sami, Susie (15 years old), Nahal (13 years old) and Ninja (8 years old). Some of them the Sultanov's acquired, and some of the cats just adopted Dace and Alexei. And there is Fedja, the marine crab, who stowed away in a shell Dace brought back from Port Aransas three years ago. He now has his own aquarium and has grown so much he left his old shell to inhabit a new one. Added to this group is a parakeet, Jerick, who they found warming up under their van during a very cold day right before Christmas a couple of years ago. They also have an aquarium with some fresh water fish.

Dace and Alexei try to go to Galveston, on the Texas coast, every few months. Alexei’s breathing difficulties almost miraculously vanish when they are by the ocean. Dace manages to make the trips frugal and fun; they have found some inexpensive places to stay where they can fix their own meals, swim in the pool, and of course, be on the beach, swimming in the ocean if the weather cooperates.

 

The Sultanovs appreciate so very much your prayers and your loving messages of support. They make persevering in the face of adversity - physical, spiritual and financial - seem effortless. For most of us, it would be almost impossible. If you experience difficulties in your life, take a page from their book, and NEVER GIVE UP!

Beverly Archibald

 

June 3, 2004

Several months have passed since we last gave you an update on Alexei’s condition and activities.

One of the most exciting events in the Sultanov’s personal life is that they took and passed their test for U.S. citizenship in February! As Dace says, they are now “unofficial” American citizens, and are only waiting for their swearing in ceremony, which will be an occasion for a huge celebration. They are hoping that they will become citizens in time to vote in the November elections.

 

In their daily life, they do everything together, including cooking – Chef Alexei chops and dices vegetables for soups and salads, and mixes and stirs batters and frostings. This is a help to Dace, as well as being an excellent therapy for him.

Alexei’s daily therapies continue to be rigorous and demanding, both for him and his therapists. There are weekly sessions with professionals, and intensive daily routines with Dace, his “Therapist in Chief”. In addition to the various exercises at home, they go to the heated pool at the local YMCA , as well as area lakes, several times a week to swim, exercise and also to have fun.

A current favorite is hippo therapy, which involves riding, not a hippopotamus, but a horse! This is excellent for improving his balance and coordination.

One of the medical advancements that shows tremendous promise for people with some neurological disorders is stem cell research. This cutting edge technology involves harvesting undifferentiated stem cells, and then injecting them into the patient, where they in turn may differentiate to become dedicated cells to take up the function of those cells which have been damaged. It sounds incredible to those of us not in the medical profession, but Dr. Kramer assures us that this may be a real possibility for Alexei someday. Of course, the medical reaserch is expensive and your continued financial support helps to make it possible.

In conjunction with all of this, the unfailingly positive attitude of both of the Sultanovs is a driving force in Alexei’s road to recovery. It is a joy to be around such affirmative energy.

Besides the physical therapies, they also find time to have fun, attending operas, fairs, the zoo, and many other local events. One of this past year’s highlights was their participation in the Jingle Bell Marathon, in support of The Arthritis Foundation. Both Alexei and Dace wore Santa hats, and the wheels of Alexei’s chair were decorated with colored Christmas lights. It was quite a sight!

Another highlight was the Christmas Concert which Alexei and Dace presented in their home for their family and friends. Along with classical selections that featured Alexei playing the melody and Dace playing the accompaniment, they played familiar carols for their guests to sing-a-long. My personal favorite was their playing of Schubert’s Ave Maria, with Alexei accompanying Dace as she played her cello.

Many people had suggested to Dace that she play her cello for Alexei, and she vowed that she would never play again until he could accompany her. When this finally happened, it was a wonderful and emotional event for all of us.

There have been two other recent concerts in their home, one at Easter and another in May to celebrate the 60th birthday of Faizul, Alexei’s father. Again, Dace played some selections on her cello, and Alexei accompanied her on their new “Yamaha portable grand piano” – which Dace calls their "magic piano". Alexei’s right hand continues to become stronger and better coordinated, and he is now able to balance sitting on the piano bench without support.

Another joy of the “magic piano” is that it can play selections with varying tempos and rhythms. One of Alexei’s favorite activities is playing jazz CDs by Ella Fitzgerald and other greats, while he jams on the piano along with them.

 

Future musical activities include plans to play in various nursing homes. Alexei feels strongly that he is a living example of what people can do to overcome adversity, and he wants to encourage others to work hard to rise above their “limitations”.

As always, your loving support of Alexei and Dace is tremendously appreciated.

Beverly Archibald 

May 2004

 

The photo paintings are created by Barbara Barrett   white_chapel@msn.com

 

September 16, 2003

 Alexei continues to make progress toward his recovery.  As I write this on September 16, he and Dace and Dace’s mother, Benita, are vacationing at Port Aransas on the Texas Coast for a week.  They are having a great time!  They arrived in a huge thunderstorm, which was pretty awesome from what they say.  Their rooms are on the fourth floor facing the gulf, and they have a balcony with a wonderful view of the water where they eat most of their meals.   LATER:  It is now September 26, and the wanderers are back home in Fort Worth.  They had a fabulous time down on the coast, – swimming daily in both a fresh water pool and the ocean – Dace said that Alexei had a great time in the water!  And they took long treks down the beach – with Alexei really enjoying his new Monster Chair – with huge balloon tires like a monster truck.  With it, he is able to navigate in the sand as well as on harder ground.  It is a wonderful invention! 

In August, Alexei celebrated his 34th birthday – with a little detour to the hospital due to a bout with aspirational pneumonia.  Although he was only there for two days, friends came and celebrated with him with birthday cake and lots of other goodies.  The only thing missing was the candles – not a good thing to have in hospitals!  But he celebrated again at home with another birthday cake with candles this time, all 34 of them! 

 Therapies continue with horseback and mobilization therapy – his ribs and pelvis were out of alignment which caused a great deal of pain – and these therapies as well as the many exercises he does at home are helping to correct this condition.

 

 As Dace continues to say, “Miracles do happen!”

Beverly Archibald 

April 19, 2003

On March 1, Alexei again entered the hospital suffering from a raging infection.  After going to the ER at one hospital, and being transferred by ambulance to another hospital, he had yet another surgery.  The spinal fluid had become infected, making it necessary to remove all foreign objects (the shunt and Baclofen pump) from his body.  He spent a little over three weeks in Neurological ICU (during which time Dace never left the hospital – sleeping on the floor of the waiting room).  The care Alexei received was excellent; the nursing staff as well as the other patients’ families became part of a warm, caring support system for Dace, Faizul (Alexei’s father) and Alexei.  A new shunt was implanted, but at present there is no Baclofen pump – and the spasticity (which the pump was supposed to control) has not increased much.  This will now be controlled by oral medications.

After three weeks in ICU, Alexei was moved to a private room in the hospital, where he began to have physical therapy and start on his road to recovery.  Dace, at last, had a couch on which to sleep, although she still did not leave the premises.

The next step came on April 8, when Alexei was transferred to HealthSouth, an excellent rehabilitation facility.  After a little over a week, he is starting to be able to eat on his own, as well as learning to walk again.  The therapies are intensive and continuous – and the therapists are very competent, caring individuals.  Both Alexei and the therapists are working very hard toward his recovery.  Dace is, of course, his private nurse and roommate.  The present plan is for them to remain at HealthSouth for six weeks of therapy. 

Visiting with the Sultanov’s is always an uplifting experience.  Dace is unfailingly cheerful and positive, and seeing Alexei’s progress is a real gift.   

Please continue to send your prayers and loving support to this wonderful, talented man and his family.

Beverly Archibald

20 May 2002

Dear Fans and Friends of Alexei Sultanov:

 
Alexei continues receiving physical, occupational and speech therapy, but until now his progress has been quite limited because of frequent and painful muscle spasms that prevent him from being able to stand comfortably without support or move without assistance. His vision was also affected by the strokes and he cannot, therefore, move his eyes in a normal manner or see as clearly as he did before his illness.
 
Two month ago, he received a ventriculoperitoneal shunt (a tube connecting the open spaces within the brain to the abdominal cavity).
This was done to treat a condition called communicating hydrocephalus (abnormal build-up of water pressure in the head). Thankfully, the shunt appears to be working satisfactorily at this time.
 
Alexei will also require a Baclofen pump, which is a device designed to release special muscle relaxing medicine into his spinal canal to help control his painful spasms and the rigidity in his left arm and leg as well as his neck and back. Once he has gotten his Baclofen pump, we hope he will be more comfortable and be more able to walk and perform activities of daily living.
 
I must say, speaking now as Alexei's close friend as well as his neurologist, I afraid that the process of recovery for him is going to be very long one indeed.
 
Alexei, Dace and both of their families are so very grateful to you as always for your prayers, your kind words of encouragement, and your generous support. It is what helps to make all this bearable.
 
Best wishes to you all,
 
  
Dr. Edward L. Kramer  
 

July 22, 2001

As you may know, Alexei has returned home from the hospital to continue on his long road to recovery. His many cats and pet Iguana, Caligula, were all happy to see him come home to them after so long a time away. But not nearly so happy as his wife, Dace.

Alexei continues to make slow, gradual progress. A surgery to correct a tight left Achilles tendon has helped restore a greater range of motion to his leg, resulting in some improvement in his ability to walk. A series of special muscle relaxing injections have also helped to decrease facial spasms that had been impairing his ability to speak, and he is now able to speak more clearly and with greater comfort. He has a good appetite and continues eating well. He works hard in therapy, which he receives daily for his speech, hand coordination and strength. He has also been getting swimming therapy, which he finds very enjoyable. Dace, her mother, Benita, and Alexei's father, Faizul, plan to remain in Fort Worth for the foreseeable future to continue helping with Alexei's care.

It is a very hard struggle that they all face. But, as always, they extend their best wishes to Alexei's fans and friends, and wish to thank everyone from the bottoms of their hearts for your many kind expressions of love and support. It means so much to them at such a difficult time.

There has been some talk about the possibility of a benefit concert to help the Sultanovs, but no specific plans have been made as yet. We promise to keep you informed of any such developments, and to keep you regularly updated on Alexei's medical condition.

God bless you all.

Edward L. KRAMER, D.O.
Neurologist
4916 Camp Bowie Blvd./Suite 108 
Fort Worth TX 76107

May 9, 2001

Alexei Sultanov continues to recover from his brain injury at Baylor Institute for Rehabilitation in Dallas, Texas. Over the past several weeks, he has shown marked improvement in his level of alertness and overall endurance. He continues to have difficulty moving his left arm, trunk, and leg due to hemi paresis (weakness) and spasticity (stiffness). He has undergone injections of botulinum toxin into the muscles of the left forearm and lower left leg to treat the spasticity with some improvement noted. He is also on medication orally for the spasticity, zanaflex, which is gradually being increased.  He is currently being evaluated by an orthopedic surgeon for possible lengthening of his left achilles tendon to help him in his ambulation. Alexei continues to focus on increasing his abilities to speak with clarity and good volume/ breath support.

Alexei now is taking all of his nutrition orally and his feeding tube into the abdomen has been removed and the stoma is closed. He particularly enjoys "health shakes" made by his family with fresh vegetables and fruits. With his family's assistance, he surprised and delighted his team of therapists, doctors, and nurses by preparing for them a wonderful meal of lamb, rice pilaf and flavourful vegetables. It was terrific!

Alexei has begun aquatic therapy in the pool at Baylor Institute for Rehabilitation. This is a particular joy for him. He also found the piano on the fourth floor of the hospital and with his right hand, astounded the staff with his incredible talent.

Alexei with the support of his devoted wife and father continues to work diligently in speech therapy, physical therapy, and occupational therapy. He is very motivated and shows his characteristic impeccable work ethic.

Mary Carlile, M.D.
Medical Director, Brain Injury Services Baylor Institute for Rehabilitation Dallas, Texas  

March 25, 2001

Mr. Alexei Sultanov has continued to make steady improvement from his brain surgery and strokes which occurred on February 26th and 27th, 2001. He is now listed in good condition and was determined to be sufficiently improved this past week to permit transfer to the Baylor University Neurological Rehabilitation Hospital in Dallas, Texas.  

It is anticipated that he will remain there for intensive rehabilitation for a period of six weeks to three months. After that, it is anticipated that he will return home to begin outpatient rehabilitation for several for months. Obviously, this year's concert schedule has been indefinitely suspended.

Throughout his ordeal, his wife Dace has been almost constantly at Alexei's side. The prayers and well-wishes of friends and fans continue to pour in from around the world, and are greatly appreciated by Alexei and Dace, who will need all the support possible during these very difficult times.

Those wishing to make financial contributions to the Alexei Sultanov Benefit Fund may do so at the address listed below. (
Alexei Sultanov Benefit Fund, Landmark Bank, 6000 Harris Parkway. Fort Worth, TX 76132 - Routing nb  : 111915657 - Account nb  : 36001154 )



Mr. Sultanov's continued progress will be periodically updated at this website.

Medical update by 

Edward L. KRAMER, D.O.
Neurologist
4916 Camp Bowie Blvd./Suite 108 
Fort Worth TX 76107

March 8, 2001

Alexei Sultanov was hospitalized on February 26, 2001, for treatement of a subdural hematoma and related stroke.

Mr. Sultanov, who is thirty – one years old underwent an emergency craniotomy on the night of February 26th to evecuate a blood clot on the brain. A recurrent hemorrhage necessitated a repeat surgery the following morning.

He is currently listed in serous but stable condition at the Osteopathic Medical Center of Texas in Fort Worth.

A support fund has been established on his behalf. Contributions may be sent to 

Alexei Sultanov Benefit Fund, Landmark Bank, 6000 Harris Parkway. Fort Worth, TX 76132

Routing nb  : 111915657

Account nb  : 36001154

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Last update : 23 mai 2004