P A T I E N T  E X P E R I E N C E  -  A L S

NAME:  Robert Naugle

COUNTRY:  U.S.A. 

AGE:  64

DIAGNOSIS:  ALS

REASON FOR COMING FOR TREATMENT:  Had ALS symptoms for nearly ten years. 

TREATMENT:  Umbilical Cord Stem Cell and Nerve Growth Factor Injections with Rehabilitation Therapy.

START OF TREATMENT:  October 25, 2004

BEFORE THE TREATMENT:  Speech slightly slurred, could only walk a short distance without walker, weakness in the arms.

AFTER THE TREATMENT:  Did not notice differences on his own but his friends say he is walking better. Slight increase in hand strength on both arms as tested by grip meter.

CHINA STEM CELL NEWS COMMENTS: Bob had treatment from Dr. Huang in April of 2005. After the treatment, he felt some improvements for two days but said they left after that. He attributed the loss of improvements to hitting his head. When China Stem Cell News spoke with his wife and his friend during his treatment with Beike, both of them said he had many little improvements after Dr. Huang’s treatment but he did not notice them. His friends, however, did.

PATIENT’S DIARY:

Day 1 – Tuesday Oct 25th

Arrived in Hong Kong after a long and uncomfortable flight in steerage, with poor food and mediocre service. If a patient can afford the cost, Business Class or a better airline would be a nice option for such a long flight. My wife, Annie, and I and our friend Bill were met by Grace Ng and were then brought through PRC Immigration at the Hong Kong/PRC border and taken directly to the hospital in Shenzhen.

Though a wheelchair was available, I generally used my rollator in the airports, right up to the door of the aircraft, and the airline always had it right at the aircraft door when I emerged, ready for use.

At the hospital we were shown into the room, which was spacious and pleasant, with a view of the city from the 20th floor, the VIP ward. Then they did an immediate EKG on me and then took our friend Bill to the apartment they had thoughtfully acquired for our use.

The hospital is very nice and very clean, spacious, and seems well equipped and modern. The equipment appears to be newer and/or more modern than what we saw while in Beijing, although we lacked nothing in Beijing and all worked there as it should. Also, the nurses in Beijing seemed to be more attentive and friendlier. You could not stumble, or drop something, or have any sort of mishap, no matter how minor, without one of them being almost instantly at your side helping. Still, we are impressed with all aspects of this operation and our confidence is high.

Both the hospital rooms and the apartment have individual air conditioning controls for each room, and in both cases, if there is a drawback, it is that the beds are overly firm. Feather decks are available and by placing a couple of them on the bed as a mattress it becomes tolerable, but remains very firm.

My wife and I stayed the night in the hospital; Bill stayed in the apartment.

Day 2 – Wednesday Oct 26th

This is testing day for me and they ran all sorts. Blood, urine, and stool were taken and sent to the lab, and then I had an MRI, a Nerve Conduction Test using external contacts, and x-rays of my spinal column. The tests discovered a small fracture in one of my vertebra, though for now it does not seem to be bothering me. I suspect that this is from a time when I was stretching myself over the edge of our bed at home frequently to try to reduce the curvature of my spine. I remember having some pain for a week or so after one especially strenuous stretch.

Again we spent the night in the hospital.

Meals in the hospital are taken in the coffee shop on the ground floor or can be ordered from the coffee shop as take out and eaten in the room. There is also a small supermarket next to the coffee shop and many conveniences can be had there. Both are entered from the hospital lobby.

Beike Group is doing their best to make us comfortable and trying to meet our every need. Their people are first rate; the doctors are also doing their level best to make this a successful experience. I have confidence in them.

Day 3 – Thursday Oct 27th

We started the day by having an EMG test using the needle, what I call the ‘spark plug test’. Not fun, but as with all other tests done here, it was comprehensive and complete. No shortcuts were taken.

At about 3PM I was taken to the operating room, where I was placed on a gurney and a large portion of my back was shaved in preparation for the treatment. Then I was transferred to the operating table and had an IV inserted in my left wrist. I was then placed on my left side in a fetal position so that my lower back was exposed the maximum and the surgeon prodded my vertebrae to loosen everything and/or to ensure that all was proper. A local anesthetic was administered by syringe and after a few minutes another syringe was utilized to draw off some spinal fluid, which was then replaced by the fetal stem cells. The entire thing took less than 30 minutes and, while not something I would pay to experience at Disney World, was not intolerably painful, either.

I was returned to my room on the gurney and transferred to my bed, where I was asked to remain unmoving for a minimum of 8 hours, preferably 12 hours. I made it through 8 without moving and then had to roll onto my side due to the backache from the mattress. My wife spoon fed me from the coffee shop take out menu and I rested well.

During my recovery time I received two bags of Nerve Growth Factor by IV.

Day 4 – Friday Oct 28th

We started this day by having an ultra sound of my abdomen, with special attention to my kidneys and bladder, since I have something approaching incontinence in that when I need to urinate it gives me minimal warning and time to find a toilet. The ultra sound discovered a small stone in my left kidney but otherwise nothing unusual.

About Noon we left the hospital and went to the apartment with Grace and with Dr Hu, the Chairman of the Beike Group, and thence to a nice lunch together at a nearby Chinese restaurant. I walked using my rollator and they made several video shots of me and us, as well as a number of digital photos to record what he saw and how I was doing.

Later my wife and I returned to the apartment, where we spent a quiet evening with Bill.

Day 5 – Saturday Oct 29th

The day was spent in the apartment reading and in quiet conversation.

Day 6 – Sunday Oct 30th

We went to a shopping district and walked a lot, while Grace and Annie and a couple ladies who were tagging along explored the various shops and malls. Lunch and supper were taken in a couple very nice restaurants which turned out to be surprisingly inexpensive, and which served superb food.

The night was once again spent at the apartment.

I think I must have overdone the walk on Friday as I am notably weaker in the legs today.

Day 7 – Monday Oct 31st

All day was spent in the apartment quietly.

Day 8 – Tuesday Nov 1st

Walked with my rollator a short block and then another and had to stop twice to rest. My legs almost buckled under me both times, and are definitely notably weaker than last week. I can no longer mount a curb without help.

Day 9 – Wednesday Nov 2d

I had thought that my fingers were perhaps becoming a bit stronger but after spending some time on the keyboard of the computer I find that there is no change from before.

A friend phoned from the States using my virtual phone card (4.9 cents/min from Texas) and gave us the news from home.

I had been scheduled to receive the 2d treatment tomorrow but Dr Hu called and explained that the stem cells are delayed so the treatment will be on Friday instead. He also came by for a visit and to explain to me that, if I wish it, he has arranged for me to have a small portable pump strapped to me and connected to a circulating system running Nerve Growth Factor into my spinal column after this next treatment and as part of it. The pump would be running for about a week. He suggested this due to the weakening of my legs. The NGF is reputed to boost the action of the stem cells, sort of a ‘turbo charger’ for them. Given the status of my legs, I’m all for it.

Day 10 – Thursday Nov 3d

Annie and I stayed home and spent the day quietly reading and resting.

Day 11 – Friday Nov 4th

I had a breathing test this morning, which showed that my breathing is somewhat substandard but adequate.

After discussing the situation with Dr Hu by phone, I have decided to forego the NGF pump due to financial considerations. It is of less than essential value and we simply cannot afford the added expense at this time. Dr Hu concurred.

The stem cells finally arrived and at about 4:45PM the team was ready to perform this week’s procedure. It was decided to allow it to be done in my hospital room this time. The procedure went off without a hitch and was completed in about 30 minutes and in fact was less strenuous on me this time as I knew what to expect and was ready for it. Afterwards I rested as I had the previous week. A couple hours later I started having to urinate frequently, and each was sizable. I went five times in about one hour, with Annie holding the urinal bottle for me each time.

Day 12 – Saturday Nov 5th

At about 3AM I awoke and needed to visit the bathroom again. When I started to walk I noticed that I was moving better than I had the previous day. Annie also noticed the difference. I felt able to walk much better and with less effort, and the morning proved that I was now able to walk further, faster, and steadier than I had prior to the 2d treatment. I walked out in the hallway and to the balcony, from which we took some photos of early morning Shenzhen, and around the nurse’s station for exercise.

This improvement did not stay with me all day as I rapidly became tired later and was unable to maintain my gains, but with rest I felt better and I hope to have more gains tomorrow.

Later that afternoon we returned to the apartment. At about 7PM we were joined by Priscilla Song from Beijing and dined in a local Chinese restaurant before retiring.

Day 13 – Sunday Nov 6th

Went for a long walk downtown today window shopping and while out there my rollator packed in. The front wheels appear to have retracted into the tubular frame somewhat and refuse to cooperate or turn in the proper direction when asked to. I was reduced to riding in the back of a tricycle to return to the apartment and I got very tired by the efforts of the whole thing.

My improvement was felt again this morning but did not last for long. The walking tired me a lot and I will try to rest more tonight in hope that this will rejuvenate me again. The improvement was nice when I had it.

Day 14 – Monday Nov 7th

Grace came by and she and Annie took the rollator to a bike shop, where the guy fixed it in about five seconds for free. Blessed be the ways of Chinese bicycle shops. I’m ambulatory again.

Grace, Annie, Priscilla, and I went to lunch at another very nice restaurant. Afterwards Annie and Priscilla and I went to the Lowu Commercial Center, by the train station up against the Hong Kong border, where there are upwards of 1500 stalls for vendors selling everything under the sun, except of course what we are looking for. For us, Beijing was far superior for shopping, although that seems impossible on the surface of things. It should be the opposite.

But we stayed very late and the end result was that I became very tired and was almost totally unable to walk by the end of the day. The girls had to push me as I rode on the rollator.

Day 15 – Tuesday Nov 8th

Set up Skype on the computer before retiring and tested it with a phone call to the U.S. and it worked fine. Tired today. Stayed home and rested and read except for an excursion to have lunch with Lou, another ALS patient who arrived last night from the States. Grace and Lou and his friend Lee came for a visit and we all sat and talked together. Went to bed early.

Day 16 – Wednesday Nov 9th

Went to visit Lou and Lee today at the hospital. Tomorrow we will both receive a treatment. Otherwise rested most of the day.

Day 17 – Thursday Nov 10th

Returned to the hospital in the morning after a light breakfast. Learned that the procedure will be after 5PM. Therefore, since it did not interfere with my surgery schedule, we had lunch in the coffee shop and just chatted together.

Later that evening they got us organized and I had my procedure in my hospital room. Same as last week, laying on my side on my own bed. This time Annie sneaked some photos, a rarity, and Priscilla was able to stay in the room as well, a greater rarity. I don’t think the doctor liked it, but we got away with it this once. Doubt we’ll push for that again. During my procedure, the doctor had to probe four separate times with the long syringe to feed it through the vertebrae to draw out the spinal fluid. Thank goodness for anesthetic. I knew she was having problems when she told me she would be giving me additional anesthetic.

But it was finally done after 38 minutes and then she went off to do Lou. His apparently went easily. Both he and I had the frequent urination afterwards, as described last week, and it started earlier, about 45 minutes after the procedure finished. Otherwise nothing unusual to note.

Day 18 – Friday Nov 11th

Woke early and we went to the coffee shop for breakfast again. They always welcome us profusely there, as we took some digital photos of the waitresses and then had them printed in a Kodak shop locally (9 cents each) and they came out excellent, and we presented them to the girls. Now we can do no wrong, and the service is superb.

Had lunch in another fancy restaurant with Grace, and Bill and his girlfriend Jun. Second floor and no elevator, but they had an escalator which they stopped to let me get on and then restarted until we reached the top to let me off. Reversed to come down, and it went fine. Good chow, but much was unidentifiable. But tasty. Annie has learned to use chopsticks well enough to pick up individual peanuts with plastic ones, which are smooth and slippery, making them difficult to use like that.

Returned to the apartment and now we’re sitting around watching Chinese TV and just chatting. Later they called to let us know that I can have an additional treatment if I wish, on Monday. I opted for it so I have two more to go yet.

These treatments are better for stroke, diabetic foot and brain damage victims than PALS because ALS will come back after a short period of time where the other diseases can be treated and stay gone for a long time. I am the very first foreign patient and the procedure in general is very experimental yet, so there was never a guarantee, but I admit to being a bit disappointed so far with my own results. The Chinese patients they have treated seem to have had good results. When I was treated in Beijing, I also had improvements and then lost them after hitting my head. I hope it is not a trend.

Day 19 – Saturday Nov 12th

This morning we had the usual very quiet and restful day.

Day 20 – Sunday Nov 13th

Went to the hospital to visit Lou, the other ALS patient.

A quiet night. I went to bed early again. Felt nice.

Can’t be sure but I think I am better able to rise out of seats and chairs now than a few days ago. Time will tell.

Day 21 – Monday Nov 14th

I got established in another room and at about 6:45PM they started on me for my fourth time. Apparently, they had a difficult time again and the head of the department, Dr Yang, took over from the usual surgeon, whom I had had no complaints with at all. But Dr Yang got it done in jig time and was through. Thank goodness!

Had the usual urinary flow but Annie kept up with it and all went well. Slept until 3:30AM and then rolled out and joined Annie on the sofa, which is more comfortable than the bed in which I was laying.

Prior to going to sleep, Annie fed me my usual fried rice.

Day 22 – Tuesday Nov 15th

Had a blood test before breakfast and later got copies of most of my tests and lab reports. I’ll take them to the VA in Dallas.

No other detectable improvements yet.

Early to bed tonight.

Day 23 – Wednesday Nov 16

Spent the day quietly at the apartment.

Day 24 – Thursday Nov 17

Last injection today. It went swimmingly. Started at 4:05PM and was done by 4:21PM, even with the doctor having to go round up her staff when she made much faster progress than expected. Last time it was difficult, but this time it went OK on first try and she was done very quickly.

Day 25 – Friday Nov 18

Slept well and woke early. It seems like I have some minor improvement with walking unassisted, but I am leery of predicting that as the improvements have not lasted more than a morning to date. We’ll see as time passes. However, Annie has remarked several times that I have lost wrinkles, which was a predicted side effect. I personally cannot see any difference, but she is far more attuned to that sort of thing.

Finished up at the hospital and said goodbye to the staff and made a brief last minute shopping run to LCC, then returned to the apartment, where we stayed.

Day 26 – Saturday Nov 19

Slept late, and then the Beike people came for a visit and to shoot videos of me. Later we went to the hospital and visited other ALS patients, and then went back to the apt and packed and made ready to fly tomorrow.

Day 27 – Sunday Nov 20th

Goodbye Shenzhen! Flew out on time and arrived home in the night after the usual infinitely long flight. I miss Shenzhen and the noodles already. We’re all stiff and sore from sitting in the cramped seats for about 20 hours total, but we’ll survive. And it’s so nice to be in my own bed again!

Day 28 – Monday the 21st

Resumed my daily exercise routine this morning and found that I am horribly out of shape from being away for the past weeks. It’s going to be a bear to get back in shape.

Day 29 – Tuesday Nov 22d

I do not feel any improvement but my friends tell me that I am walking better. I hope they are not simply humoring me. It was predicted that I would find improvements later, after I’d finished the treatments. Sure hope that’s correct.

Day 30 – Wednesday Nov 23d

I was advised in an email that the third ALS patient, Steve, had problems with his back during the procedure and they ended up giving him his stem cells via an IV. And that he had some sizeable improvements! I cheer for him. I hope he finds some really big improvements. And who knows? Maybe the IV is the way to go.

Day 31 – Thursday Nov 24th

Thanksgiving Day today. It appears that with my exercise program I can pull myself back to at least where I was a month ago, if not better. If I don’t eat too much. Time will tell. But it sure is a bear to keep at after all the days sitting around!

Day 32 – Friday Nov 25th

Nothing to report today.

Day 33 – Saturday Nov 26th

Still nothing further to report.

Day 34 – Sunday Nov 27th

I continue to make very modest progress in walking and moving, in proportion to the amount of exercise I inflict upon myself. My time on a treadmill before being ready to drop increases each day, as does the number of repetitions I can do on a weight machine.

Recent news from Shenzhen indicates that the third foreign ALS patient, a man named Steve, who was mentioned above, has had significant improvement since beginning the treatments. He is getting stem cells via IV rather than into the spinal column, and it seems to be working well for him. He has also found that the head of the rehabilitation department is excellent and he is getting acupuncture, traction and massage. Prior to his arrival in Shenzhen, he never knew that he had four herniated discs in his back. This is the first time he has not had pain in his back for 10 years and can touch his toes. He is also getting nerve growth factor shots every day – sometimes twice a day.

Steve was pretty much paralyzed in his right arm and hand, and had high blood pressure. Now he can hold his arm up for longer periods of time and is starting to be able to hold things in his bad hand for the first time in about a year, and his blood pressure has dropped to normal. He had muscle twitching, too, a common thing with ALS, and since beginning the treatments, although he still has some in his arms, his legs are almost completely quiet. Part of the reason they think he has the twitching in his arms is because they have been injecting the growth factor in there and so they are going to start injecting it into his hip. He is pretty encouraged and I am hoping he can move his hand well by the time he leaves.

Tuesday - January 17th (Almost two months after treatment)

The exercise program continues and is getting a little better each day, although it is still a bear at times. I manage a minimum of 30 minutes on the treadmill, although mostly at a slow speed (1.0 MPH), and do about 150 pulls on the BowFlex-type workout machine. Hand squeezes, using a spring, in each session come to about 40 or so for the right hand and half that for the left, and I try to remember to do several sessions each day. Could do a lot more of these but they seem to get forgotten easily. My limbs and muscles are still very weak, but at least I seem to be able to maintain what I have and can even detect slight but temporary improvements at times, all due to the exercise, I'm sure.

I recently found that the dexterity in my fingers seems to be returning somewhat, as I can now button and unbutton shirts in the early morning, whereas until recently that was impossible unless the buttons and holes were large. This is not from exercise; it has to be from the stem cells. Normally I cannot do such things until my hands and fingers have time to warm up and become more flexible, later in the day. This is a distinct improvement. I expect that with the return of warm weather later in the year that this will improve further.

Do to a fall last April where I hit my head hard on a concrete floor, I have totally lost my sense of smell. Prior to that I had problems with irritations in my throat due to smells like smoke or dust or unseen particulates. Now, no problem and I breathe normally. Other PALS have indicated that the smell and irritation problem is associated with the disease, so I consider the loss of smell to be fortunate.

Others also have complained of cramps in the larynx. I had those and for me they became dangerous, to the point where I required forceful mouth-to-mouth from my wife for a couple minutes to stay conscious. The events were sporadic and totally unpredictable. I have since had a tracheostomy to ensure that air is available to my lungs in the event that this happens when she is not around. I keep it capped most of the time but it is available when needed and reassuring.

If I lay on my back or recline, I have problems with mucus in my throat. In order to have a quiet rest, I must lay on my side. Even in a recliner, I must sit up or find a way to sleep with my head turned to the side to prevent a buildup of mucus. I take antihistamines to help alleviate this but they do not do a complete job, and I must be careful how I position myself to rest. This, also, seems to be a common problem with ALS.

1 March 2006 - I have very little change since last time I sent an update. The only events have been my two stupid falls wherein I hurt my arm the first time (falling on the treadmill) and then hurting my side and ribs when I fell the second time, when I fell onto a hard piece of furniture. Both falls kept me off the exercise machines a few days and thereby took a toll in my condition, but I am recovering from them now just fine and beginning to get back up to speed.

Otherwise not a lot of change, good or bad. I continue to have the small improvements I got earlier in dexterity and stamina in my fingers, but no further improvements, and if anything my ability to walk seems to have gone somewhat downhill - probably due to being off the machine because of my falls - as I now require more assistance from others, but I still get around OK with my rollator.