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.
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
June 3, 2004
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.
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.
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!
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
||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.
The photo paintings
are created by Barbara Barrett firstname.lastname@example.org
September 16, 2003
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
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!
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.
Dace continues to say, “Miracles do happen!”
March 1, Alexei again entered the hospital suffering from a raging
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
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.
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
Dace, at last, had a couch on which to sleep, although she
still did not leave the premises.
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
Dace is, of course, his private nurse and roommate.
The present plan is for them to remain at HealthSouth for six
weeks of therapy.
with the Sultanov’s is always an uplifting experience.
Dace is unfailingly cheerful and positive, and seeing
Alexei’s progress is a real gift.
continue to send your prayers and loving support to this wonderful,
talented man and his family.
20 May 2002
Dear Fans and Friends of Alexei
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
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
Best wishes to you all,
Dr. Edward L. Kramer
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
God bless you all.
- Edward L. KRAMER, D.O.
- 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
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
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.
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.
- Medical Director, Brain
Injury Services Baylor Institute for Rehabilitation Dallas, Texas
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
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
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
Medical update by
- Edward L. KRAMER, D.O.
- 4916 Camp Bowie Blvd./Suite 108
- Fort Worth TX 76107
Sultanov was hospitalized on February 26, 2001, for treatement of a
subdural hematoma and related stroke.
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.
is currently listed in serous but stable condition at the Osteopathic
Medical Center of Texas in Fort Worth.
support fund has been established on his behalf. Contributions may be sent
Sultanov Benefit Fund, Landmark Bank, 6000 Harris Parkway. Fort Worth, TX
nb : 111915657
nb : 36001154
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