Posts filed under 'ataxia'
Admission Conditions: Pancy complaints of vague words and unstable gait for 6 years. Nystagmus (+); Dystagmus present; finger to nose test (+), heel-knee-shin test (+). Unable to stand with feet together and eyes either open or closed; Tandem gait is impaired; Hypotonia of four limbs; Berg scores:41
Admission Diagnosis: Spinocerebellar Ataxia
In-hospital Conditions: Pancy has accepted four times Stem Cells transplantations altogether. One time Stem cells transplantations via IV (Aug 29 2008) and three times via Lumber puncture (Sep 3 2008; Sep 8 2008; Sep 12 2008) were completed and physiotherapy treatments were performed. Now, the patient can speak words much clearer and fluenter than before. finger to nose test expressed more accurate than before. Nystagmus (-), heel-knee-shin test(-).Pancy can control balance much better on walking.Berg Scores:47
Pancy mentioned that she has experienced cold feeling of all toes for nearly 8 years. We ordered ultrasound for the arteries of both lower limbs which showed a angiosclerosis changes. After ST treatment, the condition improved a lot.
Related Lab tests were done completely. The results of Triglycerides, Cholestorol, HDL and LDL are all in normal range. The WBC account and Bacteria account were abruptly high in Urine test for 3 consistent tests. It was considered Asympomatic Bacteriuria since Pancy had no any symptoms.
Affiliated medical treatment: Physiotherapy
Pathology Result: N/A
Discharge Diagnosis: 1 Spinocerebellar Ataxia
2 Asympomatic Bacteriuria
3 Angiosclerosis of Both lower limbs
Treatment outcomes: Much Improvement
Discharge Advices: 1 Keep physiotherapy rehabilitation
2 Continue the ST treatment in 6 months.
October 3rd, 2008
We are scheduled to head home on Monday Morning 9-15–we will in the airports or on the plane for 25 plus hours. Lucy met us at the airport on August 26 and will take us to the airport on September 15.
September 14th, 2008
Pansy, Jamie, Spencer, and I walked down to Restaurant Row Saturday night for supper–We had Lucy to write in chinese what we wanted to order. Spencer seems to rub his eyes a lot–I guess the stem cells are doing their thing. Lucy ( translator ) asks us if we would like to join her and Jack ( translator ) for supper Sunday evening 9-14 at her grandmother’s home here in Qingdao. Lucy speaks perfect english–she graduates from the University here in Qingdao on September 19.
September 14th, 2008
Pansy will not get off the plane and go dancing as she had planned–but her quality of life has improved. She has the correct colored toes, better circulation in her feet and legs. She says her hips feel lighter–she can roll out of bed now. She is still very dizzy–she has had this condition for a number of years–this makes waking very tough. Her writing has improved–her vision has improved–she does not have the jerky eye movements. She can feel her lips–the facial nerve was repaired by the stem cells. Her speech has improved. She does not need a straw when drinking–she can drink from a cup and not cough–the coughing seems to be almost completed cured. Dr. Bing says the stem cells will be hard at work for the next 60 to 70 days and that they will be on the job for up to 6 months, so more changes might be on the way. There needs to be a lot more research on stem cells lines
September 14th, 2008
Pansy’s treatment went fine on Friday–she said she felt hot all over her body.
September 14th, 2008
Last night ( 9-11 ) we went to dinner with 14 other people from the 8th floor. We went to a 5 star hotel restaurant about 5 miles away by taxi. The people attending were: Jamie and Spencer ( optic nerve ) from Wisconsin, Katrina and Brandon (optic nerve ) from Colorado Springs, Lisa, Rious, and Baby ( optic nerve ) from South Africa, Daryn, Tonya, and Robert (spinal cord injury ) from New Zealand, Joe and John (SCA) from Tampa, Tanya and Dave (spinal cord injury ) from Boston. Spencer and Brandon can now see after the stem cell treatments.
A new patient arrived yesterday Allen ( ALS–motor neurons ) from Ireland.
They had to call in extra help today ( 9-12 ) since there was problem on Wednesday with the air transportation–it seems that most everyone is to receive stem cell treatments today including Pansy.
We have received two packages of moon cakes–one from Lily and one from Dr. Bing–plus there was a moon cake party this afternoon here on the 8th floor. The moon cakes are different favors: pineapple, dates, apple, chocolate and etc.–the flavor is written in chinese on top of the moon cake.
September 13th, 2008
Two people left today, Charles from Québec and Jarrack from Belfast. There was an air transport problem today with the stem cells arrival–the people scheduled to receive injections today will be rescheduled for Friday. Pansy said she could feel her calf muscle for the first time in years. The doctors are very pleased with her success. In fact they are saying that she has had made more improvement quicker than the other ataxia patients. She says that is due to her positive attitude.
Sunday ( 9-14 ) is special day in China–it’s the mid-autumn festival. It is a full moon. The people share moon cakes with family and friends. There is an ancient fairy tale: a beautiful lady, named chang’er, lives in the palace on the moon only with a white rabbit. She is lonely and unhappy because she deserted her husband on the earth, so she can fly to the heaven. But the so-called dreaming life is not that enjoyable at expense of abandoning her lover.
September 10th, 2008
Spencer the 2 years blind boy from Wisconsin can now see for the first time this morning ( 9-9-08 ) –the stem cells repaired the optic nerve to his brain.
Pansy can see better today–she can read the writing on t-shirts with ease–her eyes do not have the quivering movements. She can feel her face and lips–she has not been able to feel her lips in about 20 years since the shunt was implanted in her ear at the Shea Clinic in Memphis and they cut the nerve during the procedure. Her balance improves each day–she is walking without any assistance device. She does not need a straw when drinking–the coughing condition that she has had for at least 10 years seems to have been cured. She is walking with ease–again the stem cells are doing their thing.
The spinal injection procedure takes about 20-30 minutes–that is the length of time that they are wheeled up stairs in their own bed to the procedure room and back to their room. As I understand it they roll into a fetal position–the doctor makes a small puncture in the spinal cord almost opposite the navel. They draw out a small amount of fluid and reinject the same amount of stem cells and then those little fellows go work–they go the location that needs help–a number of tests are completed on the fluid that is removed.
The electric wave therapy is completed by having a small devices ( 2″ x 2″ ) strapped to below and above the knee–the wires are connected to a machine with a control dial that will increase or decrease the amount of electric wave needed to stimulate the nerves or energize the muscle. You can see the muscles move when they crank up the current.
Jason does the acupuncture–this therapy was learned by Jason from family members–for the blind children the needles are placed in the fore head above the eyes. Pansy’s needles are placed on the wrist area, elbow, ankle, knee, and thigh area. For people with a spinal cord injury Jason puts around 12 or 13 needles down each side of the back bone. I don’t know what those needles are suppose to do. I declined Jason’s offer for a free acupuncture session.
We went to supper tonight with Jason, Jessica, (translator ) Charles (broke his back falling from a ladder that fell sideways from a roof like Tommy Brown) and Danielle from Québec City, Charles ( back problems ) and Tonya from Boston
September 10th, 2008
Pansy will receive a spinal injection today ( 9-8 ) around 2PM and also receive a spinal injection on Friday. She will attend physical therapy M-T-W-T-F and receive acupuncture and electric wave therapy Tuesday, Wednesday, and Thursday. Again she has to lay flat on her back for 6 hours without food or water–some way this prevents her from having a severe headache after the spinal. Last week 24-36 hours after her spinal injection she had severe pain in her hips and thighs–in fact the gentleman next door to her who has SCA-1 also had the same type of pain. A 55 year gentleman who has spinal cerebellar ataxia arrived yesterday from Tampa.
September 8th, 2008
The Hospital is new–built 2 years ago–when I look out the window here on the 8TH floor I can count 16 of the high rise cranes–there are more cranes in Dubai, but there is lot of building going on here. They are building a multi big Mall across the street from the hospital. The room we have is quite large with 2 beds, couch, micro wave, small refrigerator, water cooler, desk and chair and the usual hospital attachments–the bathroom is equipped for roll in wheelchair–they have the usual electronic equipment–telephone, cable TV, internet hook up. They do not furnish meals for patients–You can order meals delivered from outside or the caretaker can fix them. They insist that each patient have a caretaker with them to assist with what ever is needed. They furnish the first 2 rolls of toilet paper and 2 thin towels. We have air condition–everything is clean as a pin. There are generally 5 or 6 doctors when they make their morning rounds. There is one doctor on duty at night for the 8th and 9th floors which is the VIP unit for foreign patients.
September 7th, 2008
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