corinne4cure

NEPAL ADVENTURE

2009-05-26T23:47:01.418+02:00

WHY NEPAL?

Well, I would say: why not Nepal? I remember mentioning that idea to a friend not too long after my accident and getting a smile in return, accompanied by a sarcastic : ‘’that’s going to be challenging’’

Early this year, during an afternoon tea of two supposedly inspired zen travelers coming back from a trip to India/Nepal, I raised my hand as of them was asking whether anybody intended to go there. “ I think you cannot go to Nepal’’, the lady said. I stayed put and asked why not. She explained that even for her, enabled body, it had been difficult, because roads were so bad, bla bla bla. I said ‘’alles kan’’ / everything is possible… I just wondered what need she had to say things like that? Did I look like I thought I could do some trekking to the Everest?

Well, one day I simply booked my flight. I yet had to find and book another flight one month later as the first airline from which I booked could not accommodate a wheelchair passenger travelling alone up to Kathmandu (congratulation Cathay Pacific!). All flights to Kathmandu are pretty complicated, relatively expensive and tiring. Finally I chose to fly jet Airways via Delhi, with a short flying time (about 11hours in total), but with extensive waiting /transit time between the 2 flights.

If I had to summarize, I would say this was one of the most challenging trips I made so far, but it was also one of the greatest and richest experiences. Of course a lot of things I could not do. But who cares? I did much more than I dared hope. And all in all, Nepal is a relatively okey country to travel alone, even if you are disabled, because people are extremelly helpful and friendly.

Day 1 – Departure (November 13th, 2009). From Brussels. I was luckily hosted by my very good friend living there and she also dropped me at the airport. Not just me and my own wheelchair but also the second wheelchair I took along as I knew a lot of people might need equipment overthere. Arrival in Delhi, around 11pm. 8-10hours waiting time in the airport transit area till the morning after. Not really comfortable. One funny thing is that I kind of visited some places a ''normal'' person would never see in an airport. It looked like the Jet airways guy who got me out of the plane (via a kind of truck lift after quite some waiting time), did not exactly know what to do with me. After some hesitation i was led to the warehouse area, where I would get my own wheelchair back. First time i experience such a sightseing. Was kind of special I must say and people were friendly. See picture waiting at Delhi airport and other pictures on how to move around or be moved around in a wheelchair in Nepal here .

Day 2: arrival in Kathmandu. “Kathmandu Guest House’’ booked from the Netherlands. They include group pick up at the airport. This went pretty smoothly. Next part was a bit more difficult. Arriving at the guest house, it was chaos. Among others, my room was not ready yet. I had to wait close to 2 hours. Believe me I would have killed for a bed! Well, finally it arrived. Through email they had informed me that there were a few steps to go to the room but that there would always be somebody to help me. Was not always the case, but anyway. What they ommitted to mention was that there was also quite a high step to go to the bathroom which made it very unpractical. Also reaching the shower was impossible.

I spent one night and one day in the room. Did not have the strength to say anything at first. The only thing I wanted was to be alone, to lie down!! So the first day was definitely not great. End of the day, when I decided to be brave and move out of the room, they let me fall, when trying to lift me in the chair to bridge over the 3 steps. Nothing broken but this was a nice sidewise /lateral fall . Did not have this one yet in my collection!

Day 3 - I was given another room, with equally high 3 steps again to go to the room, but without step to the bathroom, and with a possibility to take a shower! Wahoo! As long as there is progress, there is hope ! My mood and my shape was still a bit low, I have to admit. The cold I cought in the Netherlands before leaving had become a bit worse, and I could feel the bacterias conquering my body, at least trying.

I forced myself to move somewhat. First thing was going around, in Thamel, where most guest house/ hotels and merchants are. I immediately was struck by the pollution, the dirt and the noise, but I kind of liked the sphere, the magic of the small details, the faces, the temples, the colours…

Women and children fetching water: this is something you see everyday when you are in Nepal, including in Kathmandu. Turning a tap and getting (drinking) water is something we take for granted !

Day4 - I met ECCA, a Nepalese NGO acting to preserve environment and bringing some local solar lighting solutions to underserved/ offgrid areas of Nepal. Well, yes the discussion reminded me of my job, but who cares, it was a unique opportunity to meet some local actors overthere and learn about their experience.

Solar cooking is very usual as soon as you go up in the Himmalayas, or even in Pokkhara. In many villages each family has one reflector that was granted to them, i understood, and enables them to cook by using the reflection of the sun only. Some other families or hotels, not so many it seemed, have a total photovoltaic installation enabling them to also have hot water and heating enabled by the sun. see picture of solar cooking device on the roof (picture links)

Energy situation in Nepal: power cuts every day. As a tourist I experienced everyday how to rely on a candle or on limited light (in case the hotel is big enough for a small generator for a bit of light only). Fruit vendors on the street also rely on a tiny candle or kerosene light after dark:
.

Day 5- go to Bothnath Stupa , Tibetan temple (taxi from Kathmandu). It's busy busy, lots of people, but there remains a sort of magic, or at least a sphere, with all these people going around the stupa, the eyes watching you and the colourful flags accompanying your ride...

Same day: taxi to Bhaktapur (about 10 km from Kathmandu)

Bhaktapur is one of the places I liked most. Mediaval city. Its lights, its colours, its shrines, its side streets are enchanting. Its temples and squares are well preserved or restaured. I accepted the help of a guide when I arrived there and must admit it was a good idea, both for the logistic help he provided to me, or lifting me up various steps or other hurdles, but also telling me some spicy details about what I saw...

Day 6 - Go to movie ‘’you will never walk again’’ . Usha, my new Nepalese friend with whom I had email contacts before leaving, had organized showing the movie. The latter was made by isci (see ISCI website ) to promote research/treatment for spinal cord injury.

This was a well-prepared event which raised attention of many attending people, mostly students, interested by the documentary and raised quite some questions to the present Nepalese SCI surgeon and to myself.

Day 7 – Go to first day of the ASCON conference (Asian Spinal Cord Network = derived from ISCOS). There i learned that, main cause of spinal cord injury is the fall out of a tree, by rural people going to get some grass for animals or wood (see above picture- woman fetching grass), or from their house. Road accident only comes as a third cause. See this woman on the house roof with her baby in her back! (picture below)

One striking sentence was repeated again and again during the conference : "the poorer they are, the lower they fall…" Their priority is to survive. And this is not a given, as the equipment and medication provided is minimal. Even the President of Nepal was attending! And we shook hands. see these pictures.

Hard working women, you see them everywhere. carrying unbelievable burdens, doing heavy work:

Day 8- Go to Pashupatinath - cremation site (by taxi, about 20min from Kathmandu)

Pashputinath is at the border of the Bagmati river, being considered as holy as the Ganges in India. Hindus get cremated there. Depending on their cast / rank, they would be cremated on the ghats on different side of the river bank. Traditionally the oldest son of the family would have a key role. He would shave his head and wear white clothes for weeks. People one sees in the water are ''untouchables'' trying to recover some valuable metal/gold, after the cremation is over.

Picture: saddhu in Pathputinath

Day 9 – leave by bus to Pokkara. 6 hours bus from Kathmandu (if all goes well).

Going to the bus station wheeling from the hotel. After a slight stress due to the fact that, at 6am, there was first nobody available to help me go up the bloody steps!!! again something i could have planned better!! well finally a tourist helped me out. Going to the bus station, which was not too far away, even though it took more time than i planned, because the bag on my lap combined with the uneven tiles on the ground was preventing me from swift progress. Anyway I made it to the right bus station (beware there are two!!), Staff carried me/lifted me into the bus. After that, not possible to get out. So better not drink too much! Everybody goes out of the bus at breaks and I stay inside. When they go out for lunch, to the restaurant with about 20 steps, I think ok, no lunch. Well anyway, I usually cannot take a spoon of this spicy food… but actually the guy assisting the bus driver brings me a full plate of food, most of which will remain, because of spicy status! Travelling in Asia when you don’t like and cannot eat spicy food is quite a challenge. Being high maintenance on food as I am is a challenge!

Arriving to Pokkara and to a hotel which I booked from Kathmandu. – steps, steps, and steps…Step to bathroom. Bath without hot water... hum, wanna more details ? i spent one night there, and then looked for another place.

Day 10-Go to butterfly lodge, Pokkhara Lake Side
Great place. Entering that place was such a relief. It is quiet, basic, very simple, but spacious, and most importantly, incredibly friendly. Khem, managing the lodge, from the very first minutes, tries to help me make my stay as confortable as possible. The place is not exactly wheelchair friendly, but with a bit of help, a stone placed on the ground here and there, the path is modified, and this is the very first time i am finally going to be totally independant and be able to enter my room without any assistance!!! this, and the loverly garden in front, makes me so happy!!! then i can enjoy Pokkhara. go around the lake, watch, breath... Pokkhara lake. I rolled around, well not completely as it was getting too steep. but it is possible to spend a nice time there!

Day 11- trekking in a basket, to Sarangkot

By taxi a few kilometers away. Then a few people prepare a basket for me. It's a basket they (the so-called Sherpas) carry all kind of stuff in, and occasionally people, mostly old people who cannot walk easily anymore. I heard it was possible to do that and I wanted to try. see picture here. I would not recommend it. At the end, although I am pretty light, once you have added cushion, clothes, shoes and cameras, I could not help realizing that it could not be good for the neck and back of the guys carrying (fortunately there were 2 of them and they could interchange every often to rest a bit).

It was and probably by far, not the heaviest weight they carried, and it was only for a short trek, but I decided I would not do it ever again, even though I enjoyed the view, the very small villages and houses along the way.

Day 12- going to the Tibetan refugee camps, by taxi from Pokkhara (approx 30min).

I was not very lucky, the monks were all away, in India, and thus I could not hear their songs. Next time! but the place was nice to see. I was accompanied there by Sunil, one of the guys serving at ''Chilly bar'' where I went quite often, as it's a restaurant without steps and with wifi connection!! (and with non-spicy food as well!!!). Sunil was helping at each step, even wanted to help me remove my shoes for entering the temple. He was very friendly, very helpful, too helpful to say the truth...

There are 10 000 tibetan refugees in Nepal. It’s not so much but you see them everywhere, and you experience a part of Tibet, with its prayer flags, again and again.

Day 13- fly to Jomson (2800 meter)

The flight takes place every morning in a small plane. From Jomson airport I needed to go to the jeep stand. Not having a clue of where I was going and how, i thought it might be smart to team up. So, I approached a German couple at the tiny Jomson airport and they were nice enough to help. They were very patient as well! And I was lucky to have their help: there are not only a lot of tiles on the way but also a bridge and huge steps at the end of the bridge. Again, forget doing that alone if you are not ready to ask for help!.

It is supposed to take 15 min walking. it took us about 30-45 min. The view to go to the jeepstand is wonderful! (see picture above and below).

Although my first intention was to stop at Cakbenni, a small village on our way up, when the jeep stops announcing Cakbenni, i rapidely change my mind. We are in the middle of nowhere. Well, basically, in the Himmalayas, Cakbenni being almost 1 km away from the stop. The driver will not go any further. He explains that there is no road to Cakbenni!! hum, i wish they would have told me that earlier. Never mind, I decide to stay in the jeep and go to the end destination, being another village, much higher, Muktinath (3800m). The view from the jeep, up and down, is breathtaking. great great great. I love it !!!

– In Muktinath: relax, drink drink drink. I am afraid of having problems because of the altitude and the sudden change. that will be ok though. There are just very few hotels in the small village. We go to one of them. Its name ? The North Pole. Believe me, it's an excellent name. No heating. But hotel owners very friendly and helpful. Made it possible to get a room with bathroom, downstair. and very surprisingly, it is also a place that I can enter without any assistance. If it would have been just a bit warmer, it would have been perfect!! the dinner there is great, cheerful. All tourists meet in the living room. There is fire (gaz) under the table and you get warm for a few hours at least. But going back to the room, it is cold, cold, cold. I did not sleep that night, as it was so cold and my legs never got warm!

Corinne and kids at Jarkot village

Day 14- jeep to jarkot.

Realizing that I might have made a mistake not taking a guide/porter, as it had been advised to me, I thought ok, let's hire some help now, to go to the small villages down the hill. I tried. it was all arranged, but finally, the guide did not show up. so I was on my own again!!! nevertheless, I managed to take the jeep at 9am. Stopped at the next small village Jarkot. Stayed quite a while there, with the kids around. I could not enter the village on my own as the way was too steep. but I took my time. enjoying the view. breathing, watching, playing with the kids around, making pictures...

Finally, after a long while I decided to try and enter the village. it was going up up up. I rapidely realized that i would go nowhere without help. I ''arranged'' two guides/ porters, who helped me go through the villages and the steps. it was great. It was really rock and roll. Miracle if I did not fall. The two guys spoke only a very few words of English and were not very attentive to my advises of going slowly when the path was becoming too steep or the step too high !!!

They have to carry me up quite a few steps to enable me to see a monastary. good to see. a few temples are there to see as well.

At 12.00pm, I take another jeep to Cakbenni (2800m). Fortunately, that jeep goes all the way down to the village. It 's a terribly difficult way. It is indeed not a road!
The whole village is again very difficult to access and going around is difficult. First thing is to find a hotel. I am supported by one of the inhabitants to do so. but the challenge will prove difficult. We are checking a few hotels. no luck. no room downstairs, or no room with restroom... Finally I go to one hotel which has either room upstairs, or room without bathroom, downstairs... well, i will not give too many details here, but it was not easy...

That issue being 'fixed'', i go around. There i manage to find some Nepalese guys on my way to help me, and even go through quite a few steps to see a monestary. It was worthwhile all the steps.

Day 15- Jeep to Jomson.

I would have liked to stay 2 nights in Cakbenni, but because it was so difficult to find a hotel with an accessible or pratical room, I had to go back to Jomson and put forward my flight by one day.

I still enjoy going around Jomson during the afternoon. It is windy, but sunny. Very enjoyable.

Day 16- flight jomson-pokkara

go back to lovely Butterfly Lodge and happy to feel like ''home'' and warm again!

Day 17- rest . eat Italian food, and drink a lot of delicious fresh fruit juices. Enjoy the sun and the warmth! Apologies to those preparing and selling local food, which I did not honoured very much I have to admit!

Day 18 - bus Pokkara to kathmandu.
Accidents, traffic jams... the trip back to Kathmandu was not smooth ! and i arrived very tired after more than 7 hours in the bus. bye bye the beautiful Pokkara lake and the quietness...

Day 19- go to other hotel. Hotel Mandap, Thamel

Going for the famous ''German Bakery'' in Thamel /Kathmandu, actually for the first time since I arrived in Nepal (surprising, because all tourists rush to those bakeries!) , I notice another hotel and realize it is much more accessible. nothing great but practical. Hotel Mandap, Thamel , very close to Kathmandu Guesthouse. By the way, the bakery there is fantastic, try the banana cake!!!

Then, after some shopping, go to hospital with Usha and meet spinal cord injury patients. All of them have been injured recently. All of them don't know what's happening to them and they hope, pray to get better. I can only bring the message that the science is making progress, but is it going to be quick enough to save them from lifetime paralysis ? see pictures .

Karma or no karma?
??????

Often during my trip, I was asked by Nepalese people whether I believed in Karma. That belief seems to guide many people's behaviour (including good deeds to get out of a non favorable karma). Well, whether there is a karma or not, I do believe that we do still have possibility to influence things greatly, that we remain responsible and that we do have to try and change things for the best.......

By the way, if you want to help, in anyway, promote research towards finding a cure for paralysis, pls mail me at corinne4cure@gmail.com. You can support us in many ways, advise us, create networking, communicate, sponsor...

Day 20- Rally for the handicapped of Nepal. There I met a lot of people, with all kind of limitations and all kinds of possibilities!. Took time to talk and try to get to know people and situations.

Realizing Millenium Development Goals, with children and adults living with disabilities. Rally was co-organized by Handicap International

Middle picture: Beautiful Anita, 19 year old, felt from the roof of the house and now has complete spinal cord injury. She asked me to not forget her...

Being handicapped in Nepal, hum, what to say? not the best place, although there is no good place to be blind, deaf or paralysed. Nevertheless, seeing what they have, vs the equipment and relative luxury we have here in the western world is again a reason for not complaining (no reason to not try and change things though). If you wish to help them in anyway (eg by sending equiment, or in any otherway, pls let me know!)

Day 21- flight to Dehli - waiting 10 hours in transit- flight Delhi-Bruxelles

Saturday 5 December: arrive in Bruxelles. happily welcome with breakfast. My car battery needs to be recharged. It's raining and I am riding back to Eindhoven under a very grey sky. Looking forward to the next adventure!

Wanna see more pictures of my trip to Nepal? click here

PORTRAIT

2009-05-24T17:33:00.007+02:00

PORTRAIT OF HOPE AND ACTION

Singapore, March 2001

Three days after the accident, my body crying from the pain and my mind lost between the morphine dreams and the pa- ra- ple - gia nightmare, the voice of the nurse was loud and clear :

“You have to learn to suffer..."

"You have to face your future" she said...

I visited various hospitals and rehabilitation centers in various countries. I experienced a great variety of human behaviours within the medical world, ranging from cold indifference to great compassion. Besides the great support from family, friends and colleagues, I will always remember the doctor taking my hand. His hand reminded me that I was still alive. Some months later, an intern, after some not so great news, managed to convince me that it was worthwhile fighting and hoping… that progress towards curing spinal cord injury was huge...

In the meantime, I have learned to live with my new body and realized that happiness lies in what you are rather than in what you have. Every day I enjoy being able to live an independent life, being able to travel and discover, being able to feel. Not all of us have been that lucky, though. For those whose arms are lifeless also, to keep smiling is an even bigger challenge.

I met and spoke with patients from different parts of the world. All have something in common : the impression that the medical world has given up on them and the necessity to hide their hope always reborn. Why does it sound so normal and so acceptable for a doctor to announce to a patient that he /she will spend the rest of his/her life in a wheelchair ? Acceptance should not mean resignation. It’s high time the medical world, our politicians and society at large stopped accepting the unacceptable and gave patients the right to hope.

Oriental wisdom teaches us the following :
“ The humility to accept the things you cannot change”
“ The courage to change the things you can”
“ The wisdom to make the difference between those two”

Anybody who has the chance to do so is invited to contribute to our efforts to end paralysis now ! If you wish to support us in any way pls write to corinne4cure@gmail.com

Corinne Jeanmaire –
Paraplegic - Complete Spinal Cord Injury (SCI) T10/T12 , further to a car accident in March 2001, Indonesia.
French nationality ; Living and working in the Netherlands.

CONTACT

2009-05-23T15:20:00.003+02:00

- for more info or support, pls contact me at corinne4cure@gmail.com

- version francaise de ce blog: http://clindoeilaveclimpossible.blogspot.com/

MY INTENSIVE REHAB

2009-05-23T15:15:00.002+02:00

SEPT 2008 - WALKING BETWEEN BARS, WITHOUT KAFO, ACCORDING TO DIKUL'S METHOD (TRYING)

APRIL 2008 - STILL TRYING TO WALK(THIS TIME, TRYING WITHOUT THE LONG LEG BRACES)

One of the first attempts, at Dikul Wroklaw Rehab Center- Poland
see movie

Further attempt (see comments below):

This was one further attempt, but this time with much less support (still very difficult)to 'walk' as per Dikul's method. April 18th, 2008. I'm not there yet, as you can see on the movie, but...

important remark: I have a spinal cord injury level T10-T12 since 2001 (SCI which is as good as complete). I was able to walk with long leg braces already before this rehab with a walker or quadripodes, as a result of training f/exercising for 6 years. The purpose of the short rehab at Dikul Poland center was to learn how to walk without long leg braces, ie locking my knees by myself. It remains difficult for me, still a lot of support from the physiotherapist is needed, but does not seem to be impossible (locking the knees occurs through mechanical effect of putting the hips forward, and is not a consequence of quadriceps muscles recuperation!).

This nevertheless represents a nice challenge and prospect. Never give up!

PAST REHAB EVENTS

These are my very first steps [actually about 3 steps immediately followed by about 3 hours sleeping ! ] after my accident, in November 2001, in Garches Hospital (Paris).
I practice walking with long leg braces on regular basis as of November 2001 and will do until I can do it with shorter braces if ever possible.

Update December 2006: During 6 months, my intensive rehab program (Nijmegen Sint Maartens Kliniek, the Netherlands) consisted of exercising with my lower body for 3 to 3.5 hours/day. Believe me or not, when you have no muscles to do so, it's pretty tiring !!

Later-on in 2006, I switched to 1.5-2 hours per day, trying to focus on quality of exercises rather than quantity.

Nowadays, ie as of December 2006, preparing my return to a 'normal life', ie resuming my job most probably as of January 2007, I limit myself to 1 hour per day, including a combination of various exercices during the week [walking with calipers, biking on the Motomed homebike, swimming, contracting any existing hip, buttocks, leg muscle, standing on powerplate+standing frame], and also work on my condition by practicing handbiking on a regular basis.

See videos, [be patient !] movies or pictures attached to each exercise, under this link :

1. Supported ambulation training*
2. Biking with Motomed-

3. Walking with walker + long leg braces.
4. Walking with long leg braces+ quadripodes : see the last minute of the TV program, click on video under this link to TweeVandaag to see me walk with braces and quadripodes. [July 2006]

5. Leg muscles training on 'slingertisch'

6. Biking with a hometrainer-

7. Standing in a standing unit + a trill-plate -

8. Swimming
9. Horse riding
10. Taishi-

If you are intested in finding more information about intensive rehabilitation programs proposed by various specialised institutes, you may check out this recent article by dr L. Johnston

NEW [TINY] MUSCLES [update July 2006] !!!

===================

What are the results ? Well, my spinal cord injury is officially 'complete', meaning that the nerves are either partially cut or very damaged, so nobody should expect miracle from intensive therapy.

Nevertheless, my objective was to prove that it is worth trying, and that people who want to go for such intensive therapy should be allowed to do so ! Again it is a question of money, the costs involved are huge ! but it is also a question of mind set. The 'I will never walk again' mindset is killing ! Motivated patients should be given the possibility to access the new therapy technics and get the best out of it.

As far as I am concerned, the results do not make a big difference in my daily life, but they are still worth mentioning ! And think of the impact it can have on a patient whose injury is actually incomplete. It is well known that most people stop rehabilitation too early and could get more out of it ! That is the reason why I started my intensive therapy and will continue it over the coming months, at home.

Guess what, during my last session at the rehab center, I heard my preferred physio-therapist say twice "ongelooflijk", thus 'incredible' ! Twice in the same day !!! These words are so good to hear ! We were just looking at the EMG screen, and seeing that I do have a few additional muscles that i can control below my injury. The thickest line that you see on the first picture is my left gluteus muscle [buttocks]. The other lines you see on the second picture are my right quadriceps, right biceps femoral, right gluteus and then again the left gluteus. But beware ! Don't believe i gonna walk tomorrow. Some of these muscles are so extremelly weak that they cannot even be detected without the EMG. And getting them stronger is not just a question of training and willpower. In the case of a complete spinal cord injury, the message from the brain to the muscles is strongly impaired.

I do personally believe that that message can be somehow stimulated through some physical and cerebral activities and that maybe another path can be found to bring the right signal to the muscles, since the regular path is 'blocked', but the reality is, although I have been exercising for years, my quadriceps, which appeared already in 2002, although it grew, remains very weak and not functional. Its strengh might have been multiplied by 10 thanks to 4 years efforts, but it is still at a level 1 , equalling to almost nothing compared to what is needed to stand up or walk. Given the number of muscles i have and the strength of them, I am well in line with my original target being to be able to stand up on my own by 3099 and to make my first unsupported step in 5099 ! That's how things are. But it is not a problem. Progress is progress, however small it may be.

It is one more proof that the 'impossible' can be reached . "Pour un clin d'oeil avec l'impossible'- For a wink with the impossible - ! At the end though, much more will be needed to get us back on our feet, we do need breakthrough therapies, most probably including a combination of stemcells, pharmaco- and gene-therapies, as many specialists say.

NEWS- UPDATES

2009-05-23T14:52:00.007+02:00

2010 updates:
***********

- At last the stories and picture from my trip in Nepal! here
- A very basic question raised at the ISCOS 2009 conference in Florence.Why is research towards regeneration hardly on the agenda ??? Here .

2010 updates:
***********
May09: more pictures! go to PictureGallery! here

2009: SIGN THE PETITION FOR SPINAL CORD RESEARCH- CLICK THIS LINK
Apri09: more links to give your moral or financial support!

2008 updates:

*************

Apr: my intensive rehab in Poland (Dikul center)

Jan: overview of sci clinical trials planned in 2008 or 2009

2007 updates:

*************

June : New Stepnow movie

May : Pictures from 2007 trip in North India

Feb 25th: Stepnow and Dutch HealthCommittee at TweedeKamer-Article

2006 updates:
*************

Dec 12th: Our open letter to the French Cath Church

Dec 9th: More info about experimental therapies, Science Mag

Dec 3rd:Update of my intensive rehab

Dec 3rd: L.Johnston re. connection stem-cells& altern.therapies

Nov 20th: More info about experimental therapies
Nov 12th: Paraplegia News article re. clinical trials Bengalore
Nov 12th: new Dutch legislation on stemcell therapies
Nov 6th: short movie on rat walking again thanks to e-stemcells
Oct 24th: Stepnow and Corinne in the Metro newspaper!
Oct 19th: Summary of experimental stem-cell therapies
Oct 6th: Update on Stepnow's first action
Oct.4th: Dr Trossel/ ACT stemcells treatment to stop!
Sept. 11th: a nice 15 min movie about Stem-Cells
Sept. 1st: Link to TweeVandaag DutchTV program
August 27th: New update of human clinical trial overview

August 21st: More pictures from my "previous life"!
August 21st: Update on StepNow first global action!
August 21st: Update on Matt's Ride For Research!
August 21st: New update of clinical trial overview!
August 20th: Missing videos of my intensive rehab.
August 16th: Articles/post by Dr Wise Young PhD.
August 12th: Latest update of SCI clinical trial overview
July 10th: Latest update on my rehab : new muscles!
June 24th: Latest update re. some C4H 's patients progress
June 24th: Manipal Hosp., India, re. Clinical trials
June 24th: Stepnow.org- Stand up Together to End Paralysis !

PICTURE GALLERY

2009-05-23T12:49:00.007+02:00

Seeing the world from a wheelchair?

As a paraplegic I can say, yes it's different but still possible, even if you, like me, like travelling alone ! Click on the link belows to see a few pictures from my various trips around the world and portraits:

Nepal 2009
Self_Portraits: the woman out there, April 2009

South India_ 1 day in Pondicherry area, April 2008
South Africa 2007

North India 2007 (Haridwar area)India 2006

India 2005
My period ''I want to see the world again (2002-2004 physical rehab period after accident)'',

''My previous life'' i.e. before March 2001: Indonesia

''My previous life'' i.e. before March 2001:Asia scanned pictures

Remark: all the pictures you find in this blog are mine, except for the beautiful Lotus flowers which I proudly stole from the web !

RESEARCH N CLINICAL TRIAL

2009-05-20T15:23:00.000+02:00

In 2006, the question is not if effective treatments and cures for Spinal Cord Injury [SCI] will be found, it is a question of WHEN!

Experimental treatments and clinical trials are mushrooming, all over the world. None of them is really effective, although some progress is reported now and then by a few patients. But we definitely have reasons to hope and act towards major breakthroughs over the coming years.

Is that just false hope or do we have reasons for hope? See an article by Dr Wise Young, PhD, Reasons for Hope 2005, as well as an update he recently wrote about 5 major advances in the field of SCI research up to 2006

1. Fundamental research : details in Carecure or Alarme

2. Pre-clinical and human clinical trials :

-Overview of human clinical trials:
Update 2008:
http://www.google.com/notebook/public/12807577635681740529/BDSfCQwoQ-daupfci
Historical data 2006: Overview SC I clinical trial 26August 06
- Details : More info on Alarme

- Rat walking again thanks to embryonic stem-cells+growth factor/ Dr Kerr- USA: See this impressive and very clear short movie: http://www.youtube.com/watch?v=tHzdePQHyVQ&mode=related&search= , June 2006. It's encouraging, although this cannot be applied one to one to humans, because humans' sci is simply different and more complicated, according to scientists. Nevertheless, it seems like an excellent reason to fight, isn't it ?

- Clinical trials in India :

Manipal sci clinical trial stem cells_ article by L_Johnston and C_ Jeanmaire Oct 06

CAUTION : The information displayed in this section is NOT a recommendation to go for such therapy/ clinical trial. It is meant to let those in despair know that a lot of things are happening in the field of research and innovative treatment. We have never been so close to a cure, nevertheless, for the time being, none of those have been proven effective and some risks are attached to many of them because of their experimental status !!

EXPERIMENTAL THERAPIES

2009-05-05T23:16:00.000+02:00

Experimental therapies : As their name indicate, these innovative and potentially promising therapies have no scientific character. Contrary to state of the art 'clinical trial', their results are mostly not followed -up and/or communicated in a structured, scientific and transparent manner. Therefore this attempt to collect 'some' information and know a bit more.

Here are a few reports written further to my personal contacts with companies/doctors proposing those treatments and with patients. My ambition would be to cover all main experimental procedure, in order to facilitate my own and other patients' decision-making, positive or negative. Your help is needed to extend this database. Should you have undergone an experimental therapy yourself of should you wish to 'monitor' one given experimental therapy, please let me know [email corinne4cure@gmail.com].

Only a few therapies are shown, without any order of preference [the therapies shown just happened to be the ones for which I could personally access to some information, because of geographical or other circumstances, without any relationship to their quality or reliability !]

CAUTION : The information displayed below is NOT a recommendation to go for such therapy. It is meant to let those in despair know that a lot of things are happening in the field of experimental therapies and to help them determine risks and benefits. We have never been so close to a cure, nevertheless, for the time being, none of those have been proven effective and some of them can be dangerous because of their experimental status !!

1. Cells4Health.- Adult bone marrow stem-cells

- Report on SOME Cells4Health's patients results
Remark : Many more patients underwent the C4H's therapy than shown in this report. The representative character of this overview cannot be proven. Nevertheless, my personal conclusion is that , although a few patients have had some improvement, the overall results seem to be far from the expectations for many patients and that those willing to get the procedure should beware that it also includes serious risks, such as loss of functions !

Report C4H patients progress June 24th 2006

Twee Vandaag - TV program about experimental therapies, a.o. C4H [click on 'video', in Dutch !]
It's a rather negative picture, especially for us, SCI patients, mainly aimed at warning against the risks of experimental treatments. I hope future programs will also show the real progress reached so far and the need for serious clinical trials in a pro-active way [for positive vibes, see Dr Wise Young 'reasons for hope'. See section on Research and Clinical trials]

- Interview to Cells4health' CEO
Remark : beware that the data contained in this report is exclusively based on Cells4Health input and should be brought into perspective, for example through considering the actual results [see above report !] !
Interview June-Aug 2005 - report

2. ACT- Cord blood stem cells -

- Short description : Intravenous and/or subcutaneous injection of purified and potentiated cord blood stem cells. The company is headquartered in Switzerland, but the procedure is possible in various countries. More info on www.stem-cells.com

- Report about some patients who underwent the ACT procedure - update August 2005

Remark : Many more patients have undergone the procedure in the meantime, thus there is no evidence that the enclosed overview be representative or not. An update of the results was repeatedly asked to ACT, without any success so far, which to me, is no good sign !

OCTOBER 3RD, 2006 : The treatment offered by dr Trossel in Rotterdam/PMC, reportedly using the ACT stemcells HAS TO STOP. Dr Trossel was requested to STOP immediately with the treatment. More detail in carecure post

Update November 2006: An authorization will be necessary , as of 2007, to transplant stem cells in the NL. Only academic medical centers and the Dutch cancer institute will be able to get such an authorization, to apply stem-cell therapies, in the context of an experiment. They have to comply to the requirements of the law about scientific and medical experiments on people.Source: http://www.minvws.nl/nieuwsberichten...splantatie.asp

3. Dr Huang - China- fetal OEG cells.

Sorry, the 4 links below do not work anymore, need to be updated!

Here is an interesting scientific report about Dr Huang's experimental OEG transplantation therapies. Possibly too negative ? I am ready to post some more positive comments about this therapies when solid arguments can be provided. I know that a few people have said they had some results. The question is to know how many they are compared to the hundreds of people who underwent the surgery and how important the progress really was ! Here and Here and Here are the publication by Dr Huang's team themselves, which should be read along with the above scientific report by Dobkin_et_al.

4. Dr Bruchowiecki/ NEUROVITA- Moscou- Adult OEG cells ++

http://sci.rutgers.edu/forum/showthread.php?t=71866 : this is a long post from a patient of Dr B/ Neurovita- Russia. Is that right ?I don't know. if you think it is not, please let me know. I would be more than happy to post a group of positive testimonies when solid arguments can be provided.

5. Many other stem-cell therapies in the world.

Here is a Overview of experimental therapies Oct2006-. See carecure or alarme for more details and patients testimonies concerning experimental therapies !

Here is also an interesting and quite thorough article listing many experimental stem-cell therapies, published by ScienceMag: Selling the stemcell dream_sciencemag july06

Are any of them working ? well, so far, the more I am trying and getting to know, and the less convinced I get. I would not advise anybody to go for any of those so called 'experimental treatments'. Before enrolling into any of those, please do not forget to also have a look at the overview of clinical trials in the section "research and clinical trial" of this blog. Clinical trial are supposed to have a more scientific character and might offer more transparency, although, there are some risks also there, especially when those clinical trials are started by companies whose revenues are at stake !

6. Combined therapies, stem-cells + alternative therapies ?

See this article by Laurance Johnston, November 2006 showing the potential connection between stem-cells and alternative therapies [acuponcture, laser,...]

STEM CELLS 4 CURE ?

2009-05-05T18:33:00.000+02:00

A nice 15- minute-movie about stem-cells: Euro stemcell - English - Euro stemcell - French

Experts increasingly believe that stem cells have considerable potential to treat many of our most devastating disorders, including diabetes, heart disease, and variety of neurological disorders such as spinal cord injury (SCI). We are not there yet. A lot more research is necessary. That research, though, does not proceed fast enough, because of all kinds of issues, whether they be political, financial or ethical. Is it ethical to tolerate so much suffering when we obviously could do so much more about it ?

About the ethical discussion around stem-cells : listen to what Steven Edwards, an American cure activist, says about the controversy concerning embryonic stemcells versus adult stemcells.

Do you want to know more about stem-cells in general or become a stem-cell 'activist' ?

Go to www.stemcellnetwork.org or www.stemcellaction.org

I understand the ambivalence concerning stem cell research and fully recognize the need for boundaries but I think that scientists should be allowed to pursue all avenues of research for the cure and act. Are governments ready to set up a proper legal background enabling controlled research in a reasonable but effective way ? [see current legal status on worldwide level on this map : http://mbbnet.umn.edu/scmap.html ] or some update per country in www.stepnow.org as well as a call for action for more sci research, including but not limited to stemcell research in this blog under the Cure Activism Projects section

SCI 4 DUMMIES

2009-05-05T16:11:00.001+02:00

If you do not have a spinal cord injury [SCI] yourself, you may believe that the consequence of it is limited to living in a wheelchair and not being able to walk. It is MUCH MORE THAN THAT for most of us. PLEASE READ THIS and you will understand a few things !

What is Spinal Cord Injury ?

Anatomically, the nervous system is divided into two main sections: the central nervous system (CNS) and the peripheral nervous system (PNS).
A spinal cord injury is a damage brought to the CNS. The consequences depend on the level of the injury and on its severity. It will, in some cases, when the injury is considered as 'incomplete' still allow some partial or even total recovery. For those whose injury is said 'complete' though, they are traditionally believed to have no chance of recovery at all, although, with the progress of research over the past years, there is shift in our consciousness about what is possible after injury.

What are the consequences of Spinal Cord Injury you might not be aware of ?

Because of the damage of the CNS, messages cannot be brought anymore to the various organs and part of the body below the level of injury.

For paraplegic people, it leads to the inability to move their legs but also to the absence of sensation under their injury. That results into, for a complete injury at least, the total absence of control of various organs and into bowels, bladder and sexual problems. Further more, many patient also experience frequent if not permanent neurological pain which is again due to nerve damage in their back , not to mention possible spasms or accrued tiredness. This is not to mention accrued risks of infection and pressure sore.

For tetraplegic people, on top of all the above, the situation is much more dramatic since all their 4 limbs are impaired. The consequence then depends on the height and severity of the injury. It will range from difficulty to total unability to use arms and hands. Sometimes, in case of a very high injury, even breathing function has to be supported.

Conclusion : If you see some pain or stress on the face of a person in a wheelchair, there might be some good reasons for that. It will most of the time not be because he/she cannot walk. Although no 2 cases are comparable. Every patient is different...

LINKS 4 CURE

2009-05-05T10:03:00.001+02:00

http://www.stepnow.org/
www.carecure.org/forum
www.alarme.asso.fr/forum/ [francais!]
http://www.demaindebout.com/ [francais!]
http://clindoeilaveclimpossible.blogspot.com/ [francais]
http://www.neurogelenmarche.org/ [francais]
www.sci-therapies.info/
http://www.healingtherapies.info/

ABOUT THIS BLOG

2009-05-01T10:36:00.000+02:00

This blog is by a Spinal Cord Injury patient for Spinal Cord Injury patients of this world, but also for anybody who is interested to know more about what we, paralysed people, try to do to change the world! Be the change you want to see in this world! [Gandhi], join us and change what can be changed!

This blog is driven by 3 main personal aspirations:

-Quest for Research: Informing about research, about clinical trials and experimental [not homologated] therapies and creating transparency in the above in a view to inform, motivate other patients to live on but also to protect them. With the longer term dream of creating a chain of information fed by patients themselves.

-Cure activism: conducting actions towards the public, the political community and researchers to speed up research towards cure of spinal cord injury/ paralysis. This means giving scientists the means to study and apply regenerative medicine and to switch to serious human clinical trials soonest. Those cutting edge treatments might also be coupled with alternative therapies and modern intensive rehabilitation technics [some of them I practiced myself during an extensive period. See 'My intensive rehab"] to increase their effectiveness. To date, both legislation, state of mind and founding do not allow swift progress. The cure is out there and we just do not take it ! [see "Cure activism]

-Global solidarity: A few actions towards Asian patients, many of them having not only to deal with paralysis but also with a very hostile environment when it comes to getting the right care and the right equipment. Just a dream... [see "Help patients in Asia"]. Next to that, the dream of a global chain of information, a global network involving patients from all over the world but also respected scientists in an effective but open quest for research.

HELP PATIENTS IN ASIA

2006-03-12T16:24:00.000+01:00

Chandrika

I met Chandrika, 30 years old, during my 'therapeutic' holiday in Kerala, South-West India, in 2005. She has been partially paralyzed as from her hip for a few years. Though she does have quite a few muscles she can control below her injury, she is still bound to a wheelchair.

I was so happy to meet her, and so was she, among all those 'walking' people. Together with Priyankari, the person taking care of Chandrika on daily basis, we try to help her and boost her progress. I was there again in April 2006 , brought Chandrika the 4-wheel-walker which was generously donated by my neighbour and we exercised together. That walker is definitely a plus in Chandrika's rehabilitation program. But there is so much more to be done !

Later-on, if we can get/build up the necessary equipment and professional support on the spot, we might start some locomotor training [see example here]. There is a possibility to build a local a cheap version, which could look like Bruce 's own home-made suspended treadmill or like Pat's. This was not possible during my latest visit, but I do hope to implement it next time.

So far Chandrika is more than happy of what has been a very little help and a bit of attention.

It is only one person in this big world... I 'd obviously like to do more and help more patients ! It might be done step by step, in a very simple and light manner, without any administrative structure.

Do you wish to help ? You can help by providing some rehabilitation equipment you do not use anymore, or some logistic advise to get that equipment overthere at no cost. For feedback please mail me at corinne4cure@gmail.com !

2006-02-25T16:13:00.000+01:00

Stepnow global campaign.

Such cure campaign was initiated by a few voluntary SCI cure activists from the carecure forum on global level. It is not a new association, all is done in a lean and virtual way, involving a global SCI grassroots. All projects are currently discussed on : http://www.stepnow.org/. As an active member of this group, I try to support the actions for a few countries including The Netherlands, France. For more questions on this, please mail me at www.corinne4cure@gmail.com

Step Together to End Paralysis

Here is very brief summary of our actions: For more news, be sure to check in the section 'spotlight' of Stepnow forum, and SIGN UP NOW TO SHOW YOUR MORAL SUPPORT TO OUR MOVEMENT [free of charge and responsibility !] REGISTER IN www.stepnow.org !

See Stepnow movie: http://youtube.com/watch?v=N35uUIIVYkQ

3rd Action: January-February 2007: global mailing to national parliament's health committes.

- Netherlands : Stepnow NL's representatives visited the Dutch Parliament , Tweede Kamer, to meet members and chairman of the Health Committee and hand over our letter and folder. See article in the Eindhovensdagblad [Nederlands !!] , here: http://www.stepnow.org/forum/viewtopic.php?p=3779#3779

Inbetween action: December 2006: Letter to the French Catholic Church further to the controverse started by Msg Barbarin on embryonic research. See [French] http://www.liberation.fr/forums/forum.php?Forum=583

http://forums.lefigaro.fr/user/non-frames/message.asp?forumid=198&messageid=1121854&threadid=1121854&parentid=3

2nd Action: November 2006: Letter to the European Parliament, Health Commission. See article published by Agence Europe in the European Community Newsletter.

1st Action: 4th October 2006, global mailing to heads of various governments asking for more research against paralysis]. Stepnow is now in the spotlight! see various articles:

In the Netherlands, Metro news October 23, link to be updated. In Florida

In Uruguay_noticia, picture

In Global press from Ireland

THE RIDE4RESEARCH

2006-02-10T11:30:00.000+01:00

They did it ! He did it ! 1200km on arm power through the Netherlands !
More info on that achievement on Matt's website : http://www.invanet.org/ride_for_research_en/the_ride.html

You may still, even after the ride, support Matt in anyway you can ! His ride was and is for a good cause, ie to support Spinal Cord Injury Research. Sponsors welcome !

The media appreciated Matt's adventure and lots of papers were written about it, not to mention a few TV programs. Here are some links to papers:

Acupunctuur wonder (Tubantia) (augustus 7, 2006)
Respect voor een immense inspanning (Tubantia) (augustus 7, 2006)
Fietsers blij verrast door veelzijdig Nederland (Dagblad van het Noorden) (juli 31, 2006)
Met dwarslaesie door het land (Eindhovens Dagblad) (juli 24, 2006)
“Het is belangrijk om actief te blijven en niet op te geven” (Yvonne Baars) (juli 23, 2006)
‘Samen zijn we gewoon een sterk team’ (Tubantia) (juli 21, 2006)
Rondje Nederland met dwarslaesie (Provinciale Zeeuwse Courant) (juli 19, 2006)
Dadendrang is bij Matt Cole niet te sluiten (Tubantia) (juli 10, 2006)
Een rolstoel is één ochtend leuk (Tubantia) (juli 7, 2006)
Matt Cole begint zaterdag aan monstertocht (juli 2, 2006)
1200km in a wheel chair (juni 9, 2006)
In Handbike Land Rond (maart 17, 2006)