Report on Adrian Hands

Report on Adrian Hands

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 Oct 17, 2008 Nov, 2008 Feb 27, 2009 Apr 18, 2009	Tried a GREAT MANY potential solutions Biked 200km brevet in Florida Biked 50mi Carrboro to Greensboro Last bike rides Received wheelchair Pedaled a handicap trike, solo, around parking lot
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 (18^th) 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.