Summary:
Adrian Hands came to Delhi, India, after researching many stem cell centers and after undertaking many difficult prior steps and a hazardous journey.
Now he has had two months of stem cell treatment and can report great progress. He is off the ventilator, though still on the bipap. He is able to breathe unassisted for upto three and a half hours. He is now able to stand for up to ten minutes with assistive devices, and able to work with his right hand for eight hours without reporting fatigue.
In these two months Adrian had daily intramuscular injections and IV infusion of human embryonic stem cells (from a line of cells reproduced from a single rejected embryo discarded by a fertility treatment). Some of the injections were "deep spinal muscle" injections closer to the back bone. Adrian had two "procedures" involving epidurals to deposit stem cells near the spinal column, both in May.
May 25th was also day one of Adrian's new life. The three to six months he was told he would survive without a ventilator ended May 24.
He can potentially have another series of stem cell treatments as early as August. We are thinking of continuing on here to fully participate in these treatments, though it poses many new challenges and difficult decisions.
The staff and leadership at the clinic is phenomenal and professional, showing excellent analytical strength and limitless compassion and treating all with kindness and dignity. There are no words to express our appreciation for all their support and encouragement, and for the greatest gift of prolonging life for Adrian.
We think Adrian will continue to improve, and be all right in a few years. We definitely now know he will survive. Since he is going to live, Adrian strongly desires to bring back the functional capabilities that will make his life more productive and enjoyable. Adrian has had excellent progress, and we will be continuing the stem cell therapies in India.
Below is a timeline (extending a little beyond the time at Nu Tech, followed by journal excerpts.
TIMELINE:
| Feb-Mar 2005 | Adrian's symptoms identified as possible ALS |
2005 – 2009 Jan 12, 2008 | Tried a GREAT MANY potential solutions Biked 200km brevet in Florida |
Nov 24, 2009 | Clinic visit; bad news – choose tracheostomy or 3 – 6 months life expectancy |
| Dec 26, 2009 | Decide to explore stem cell therapy at Nu Tech; Spoke with Dr. Geeta Shroff; she recommended tracheostomy before travel to India |
| Jan 10-17, 2010 | Explored Mexico options; decided on Delhi, scheduled tracheostomy |
| Jan 24 | Adrian admitted to Duke Med for Tracheostomy and Ventilator |
| Feb 1 | After one week of struggle, breathing ok on ventilator |
| Feb 3 | Adrian speaking and swallowing normally |
| Feb 8 | Adrian is mobile with the ventilator, we go to World Peace Prayer |
| Feb 16 | Adrian is back in the hospital – pneumonia not gone |
| Feb 17 | Stable; Heart catheterization shows no damage to heart despite heart attack evidence; "Do you see anything, Bob?" |
| Feb 24 | Home again; preparing to travel |
| Mar 3-4 | Travel to Delhi |
| Mar 8 | Patient Meeting, and meeting with Dr. Shroff; have to be free of infections to start stem cell therapy |
| Mar 9 - 25 | Antibiotics and lab tests: TLC 13, 14, 16,000! |
| Mar 26 | Bronchoscopy and bronchial lavage; TLC 19,800!! |
| Mar 29 | Considered going into hospital for strong antibiotics; TLC decreased to11,500!!! |
| Mar 31 | TLC 8000!!!!! |
| Apr 1 | Started stem cell treatment; saw immediate changes |
| First week | Changing positions causes secretions to plug lungs; desaturation; suctioning |
| First week | Stronger grip; no clammy skin, change in expression |
| Second week | Work on breathing without ventilator; Apr 18 Adrian is off ventilator in the daytime |
| April 19 – 21 | Worked on nighttime breathing on bipap rather than vent; two nights successful; one night required three hours of vent, then he was off vent at night |
| April 22 | Adrian to try standing; instead takes off bipap and breathes on his own for an hour! |
| April 22 – 29 | Work on replacing the trache tube with fenestrated, smaller one suited for nasal breathing |
| Continuous | Try to work on getting the orthotic devices needed to support standing |
| May 12 | First procedure at Gautam Nagar |
| May 13 | Gaurav reports Adrian is bearing his own weight while standing |
| May 24 | Adrian's re-birth-day (six months from neurologist's prediction) |
| Week of May20 | Adrian can do OT pegs with ease |
| June 2 | Stem cell treatment ends |
| June 5 | Adrian is able to stand with calipers and walker, 2 – 3 minutes two times day |
| June 11 | Adrian stands for 10 minutes at a stretch (after a couple of days of two 5-min) |
| June 12 | Visit to clinic; physio assessment shows decrease in upper body strength |
Some journal excerpts:
April 1 Adrian got a first test dose and we saw some changes immediately -- strong fasciculations and stronger grip in the hand which received the stem cells (right arm), less clamminess in the skin and a clear but subtle change in his expression.
Mid April (18th) Adrian is on the bipap (off the ventilator) all day and uses the vent only at night. As soon as we can get some attachments for the night time bipap mask, we will try that at night, and, after Adrian is comfortable with that, we will remove the trache and put a placeholder (cuffless) trache. All this could happen in a matter of days.
The doctors do not feel comfortable doing the larger procedures that for many patients started in Week 3, but want to wait two more weeks; I am hopeful that even with the level of infusions he is getting he will make fantastic progress; and that they will decide to do the lumbar puncture, epidural, etc, as soon as safely possible.
April 21 - As it turned out, we weren't able to get the attachments for his nighttime mask (he didn't like this mask anyway – it make it difficult for him to speak) and he is using the daytime mask at night as well; we will find out about changing out the trache tube.
The walking goal is harder: his back and legs seem stronger, but he has to be able to hold his head up while walking. It will be good if his arm strength improves enough so he can lean on a walker for support We are not giving up.
***
Yesterday, April 22, Adrian was to attempt getting on his feet. He had challenged himself to hold up and balance his back, neck and head and had succeeded in doing so at least for short periods, and was getting ready to try to stand up, while we are still working on aids such as a neck brace that will provide further support.
In the meanwhile we were in the clinic yesterday after two sessions -- PT and OT -- when Dr. Asheesh Verma came in and asked how Adrian is doing. He was particularly interested in changes in breathing. (As you know Adrian has been getting off the vent and breathing with a bi-pap (through the nose) for the last few days, and more recently at night as well. )
As part of reporting to Dr. Verma, Adrian took off the bipap as well, and breathed on his own for a few minutes. Later in the PT room he did the same and was timed for an hour. The suggestion from the docs was to continue to breathe without assistance when relaxed or distracted to allow the natural process to take over and to allow the exercise of the appropriate muscles.
Adrian is feeling a little exhausted by this prospect though he was able to breathe on his own for 45 minutes early this morning before asking for the bipap again. The victory is that Adrian seems to be off the ventilator, and is able to be off the bipap for short periods. The enticing possibility that Adrian will be able to breathe ongoingly without assistance. This is not a possibility we were even really considering before this. We will approach it cautiously and try not to strain Adrian, while "going for the gold". We will replace his trache with a fenestrated trache, more friendly for nose breathing, soon. We haven't forgotten about the walking goal.
April 30
We are in the home stretch of our therapy at Nu Tech Mediworld. We came with a ventilator and pneumonia, and have seen clear improvement in that Adrian is comfortable without the ventilator (but still uses the nasal bipap). He is able to breathe without bipap but he feels it is a lot of effort and is not satisfied to do so. The clinic folks have backed off from the walking goal, saying breathing is more important. We are still trying to have Adrian stand for brief periods with support at home.
As of May 13, we are still challenging our goal of Adrian being able to walk, even with assistance. As of yesterday and today he is able to bear his weight on his legs and feet when helped to a standing position, holding a walker, cane etc, Today the therapist said he is standing on his own (with the walker, but without the therapist's support). He is also able to lie down for some time, though he usually needs a suction as a result of changing positions. We are determined that he should be able to stand and walk, and also for him to gain the full benefit of the therapies offered at this clinic.
He has kept the subtle improvements we noted in the initial weeks, but is dejected that he does not see a clear increase in functional capability yet. At the same time breathing on his own and walking with support seem risky to him, understandably.
He has another large treatment (his second) on Tuesday May 25. We need to see clear functional improvement.
The docs had told him on November 24 2009 that without being on a ventilator he had only three to six months. May 24 will be six months -- from this point each day (off ventilator) is a bonus.
Early June - Adrian has finally been able to get to standing and using the walker (the knee calipers are now able to be used correctly). He was initially standing for a couple of minutes; this stretched to two five minute sessions in a day, and most recently he stood for ten minutes at a stretch. It appears that he has the strength and therefore can stand with the necessary equipment.
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