Wednesday, November 24, 2010
Friday, October 22, 2010
Saturday, September 4, 2010
Sunday, August 29, 2010
In Hindi, "w" and "v" are interchangeable.
"oa", below, is long "o" as in "boat".
"oo", below, is as in "boo".
T.K. or teak-hey = O.K.
Ah-chah = Good, or Alright
Boaht-Ah-chah = Very-Good
Bin-dahs = Carefree Unrestrained
Boaht- = Very-
Dahn-yah-vahd = Thank-you
Shoo-kree-yah = Thank-you
Hahn = Yes
Nah = No
Hay = Is
Nay = Isn't
Buhss (Sounds like bus) = Enough
Rook-nah = Stop (but Buhss/Enough is more common)
Aur (sounds like Or) = And, or More
Hoagie-yah = Done
Ahp = You
Ahp-keh = Your
Ahp-koa = For-You
Cheh-low = Lets-go
Toa-pee = Cap (Hat)
Chy-yay = I-want, or Is-needed
Chy = Tea, or Chai
Roaz (Sounds like Rose) = Daily
Nah-muh-stay = Hi
Auto = Auto-rickshaw, tuk-tuk, 3-wheeler
Toa-dah = Little
Yah = This
Whoa (Sounds like Woe) = That
Yay-Vah-lah = This-one
Chy = Tea, or Chai
Pah-nee = Water
Tah-lee = Plate, or Plate-of-food
Doohd = Milk
Ruhs = Juice
Ah-loo = Potato
Suhb-jee (Sounds like Sub-G) = Vegetable
Kiss-Miss = Raisins
Dair-vuhz-ah (Sounds like There-was-a) = Door
Oopar = Up, or Raise
Nee-cheh = Down, or Lower
By-har = Out
Oon-dahr = In
See-dahr = Straighten
Koa-low = Open
Bund-kahrow = Close
Ah-gay = Forward
Peachay = Backward
Ool-tah = reverse
By-yanh = Left
Dy-yanh = Right
Haht = Hand
Pow = Leg
Pair = Foot
Kahn = Ear
Ah-bee = Now
Ah-bee-Nay = Not now
Pheer Mil-ehn-gay = See you later
Aik Minute = One minute (or Wait a minute)
Peh-leh x, Pheer y = First x, Then y
Ahp-keh-Seh-Ho? = How are you?
Sahf = clean (adj.)
Sahf-kahroh = to make clean
-kahroh = To make, or to do
Durd = Pain
-wallah = -man, as in postman, garbageman, chai-vallah, tiffin-vallah
Ah-rahm = Rest
Ah-ruhmb = Start, or Begin
Kyah-kow-gay? = What will you have (to eat)? (Say to greet a visitor.)
Doast (rhymes with toast) = friend
Bah-rees = Rain
Everyone mixes English words into Hindi, even attaching Hindi prefixes and suffixes (e.g. boaht-, -kahroh, -wallah) to English words.
Technically, there is no long "i" (as in "ice"), but "ah" + "ee" is real close.
Sunday, July 11, 2010
> … At another gas station in Rayne we met Josette, she wanted to take a photo of the wording on our tops “Impossible is nothing” to send to her brother Adrian who suffers with ALSUnfortunately, it seems I brought them little luck:
> Adrian was a keen cyclist and is unable to cycle now due to ALS. However he is in India having some stem cell treatment. We wish him well and hope he is able to get back on his bike. We will devote tomorrows ride to Adrian and wish him all the best for the future. I have copied and pasted “What is ALS?” from the ALS website.
> When I hear about people like Adrian, it reminds me how fortunate I am. It makes me appreciate all the things I am able to do, especially the little things I often take for granted like walk, run, cycle.
---------- Forwarded message ----------
Sean and James are both in hospital after being hit by a truck in Louisiana.http://CycleAcrossAmerica2010.com/
Sean is in surgery now with a broken back, pelvis and other injuries, James has lots of road rash possible broken ribs, stiches and minor injuries. Your messages of support for both the lads and there families are greatly appreciated.
We will keep you updated.
Monday, June 21, 2010
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.
|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.
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.
Sunday, March 7, 2010
Good flight, with a couple of interesting moments. Continental added
Cleveland to our route to Newark, due to snow cancellations. After a
beautiful first leg, my inner cannula clogged on the skybridge just
before we entered the plane. We cleared it up, but it left me a little
shook up for the rest of the flight.
Our biggest fear was running out of ventilator battery, but that fear
was obviated by the avaiability on the long flight on the 777, of 110
volt AC under the seat, even in coach.
At Newark we boarded the 777 which flew us 6 miles above Greenland,
iceland, Oslo, Stockholm, Helsinki, Moscow, Volgograd, the Caspian
Sea, Turkmenistan, Kabul, Pakistan to Delhi (Dilli). If you come to
join us, a window seat is advised.
Continental was great. They transferred me between wheelchairs nicely
and took care of my own wheelchair -- no damage. We had one other
incident of the inner cannula clogging, and Continental provided
oxygen for both incidents, even though it probably wasn't necessary.
They offered to pre-board us at Newark, but we weren't ready so they
boarded us last.
Paramedics came to meet us at Newark, but we convinced them everything
was ok. 75 degrees in Dilli. We checked in with the local hospital
just to open a file in my name. They took vitals and everything is
Ravi's classmate from the University, Pavitra, met us at the airport
with her dad and assisted us with transportation, along with an
ambulance ride from airport to hospital and one more from hospital to
hotel. For the first ambulance ride they lifted Adrian up in a manual
chair and lifted the wheelchair in behind him, and on the second one
they lifted him bodily in the wheelchair (and out of) the ambulance.
Now we are in the beautiful hotel Sara on Green Park Extension. The
wheelchair entered through the ramp of the MRI center next door. John
and Vicky provided huge levels of support in getting us here.
Thank you to all of you who helped us get out the door at the other
end. Please forward our status to interested parties not included on
Sunday, February 14, 2010
with my ALS -- not ALS in general.
FUQ because I feel questions often go unasked, especially by adults.
What is ALS?
Lou Gehrig's disease, like Stephen Hawking has. A neurodegenerative disease that causes paralysis and muscle wasting.
Is it contagious?
No. Nobody catches ALS from another person.
Is it genetic?
90% of the cases are considered sporadic. I have no family history of ALS.
Is it curable?
Currently there is no cure available, there is no treatment.
What is that mask on your face?
It's called the bipap -- very similar to a CPAP used for sleep apnea. It's an air compressor. Not oxygen, ordinary air.
Does ALS hurt?
In my experience, it is not painful, and that is consistent with the literature, though I have heard others complain of a lot of pain. I have some pain -- earlier on there was sort of a opposite of "growing pains", i.e. a dull ache as muscles atrophied. Earlier on there was also muscle cramping. But now there is not much muscle left to cramp or ache.
What does ALS feel like?
Not being able to move a finger feels sort of like not being able to wiggle your ears. It doesn't really feel like the finger is immobilized, it's just not going anywhere. When I first had trouble walking, it felt like wearing a leaden pancho. Now I am confined to a wheelchair all day and it feels like G forces are pressing my upper body backward into the chair. My hands and feet are often very cold -- even in the summer.
Can you still feel?
Yes. Sensory nerves are not affected. Only the motor nerves -- those carrying signals from the brain to the muscles -- are affected.
Is it a disease of the myelin sheath?
No, it is not like MS.
How did you get it?
No one knows. It usually strikes adults, males more often than females. It has been observed, though not totally accepted, that it more often strikes lean or athletic people. It seems to strike Italian professional soccer players more often than the general population. Gulf War veterans seem to get ALS twice as often as would be predicted statistically.
Any ideas why?
Nothing but speculation: blue-green algae, protein misfolding, an autoimmune problem, a blood brain barrier problem, etc.
if they can induce ALS in a mouse, how is that they don't know what causes ALS?
10% of ALS cases are "familial"-- involving a specific gene. They are able to splice that gene from human DNA into a living mouse and produce ALS like symptoms. They test drugs on these mice. It is hoped, but not proven, that knowledge gained through this method is transferable to humans.
Are you depressed?
I have had five years to deal with it -- 11% of my life so far. Some people are prone to depression -- I don't think I am. One must take each day for all it's worth.
Are you scared?
Mostly no. I could die of carbon dioxide buildup -- drift off to sleep and not wake up. That sounds like as good a deal as anybody gets. Or i could fall smash my head, get run over by a truck etc.
Are you able to sleep?
There was a point where I would feel somewhat panicked when I went to bed -- sleep should be restorative, we sacrifice part of the day to unconsciousness in order to wake up refreshed. I felt that my time remaining was limited, and with the passage of time I felt that it weakens, not refreshes. It sucks. I got over it.
Do you ask "why me?"
A bus driver asked me that -- I don't think it occurred to me. I did wonder if things I did, or were exposed to, contributed, but at this point that is totally unanswerable and researchers are skeptical that knowing the cause would even lead to a therapy -- if a building catches fire, knowing where it started isn't really useful in putting it out.
Are you seeing a specialist?
Yes, I go to an ALS clinic.
What do they do?
Watch. Advised me against trying any alternative treatments. There are no other treatments. They did get me this wheelchair, and bipap, and offered a leg brace, but mostly they look stuff up on Google and tell me about it, and admonished me to not believe any thing on the Internet.
What does it feel like to have only a quarter of normal breathing?
When I have to take the bipap off, it's kind of like swimming. I could be without it for a short period of time, but I need to get it back on quickly. I keep thinking of that scene in 2001: A Space Odyssey where David Bowman has to travel from the pod back to Discovery...
Can I have your stuff?