In memory of Fotios Tzimas

Καλώς ήρθατε και αντίο
Φώτιος Τζίμας

My name is Fotios Tzimas, I am 50 years old, and in March 2004 I was diagnosed with ALS.

March 2004: ALS diagnosis, which caused rapid deterioration of emotional state. Administration of RILUTEK.

April 2004: Virus infection with high fever. Intake of various different antibiotics without results. Two weeks stay in Filiates Hospital. After that, psychological condition and bodily strength down to zero.

May 2004: Realization of what it is I am suffering from. Attempt with homeopaths, without any result.

June 2004: Cease of Rilutek administration. Gradual improvement of emotional state.

July-August 2004: Work and intensive physical exercise, combined with change of dietary habits. Intake of vitamin E, 5000mg daily, for 3 weeks.

September 2004: Difficulty in my left leg. Emotional state good. By now I use my left hand at eating.

October 2004: Difficulties in my left hand and right leg.

November 2004: Good weather, frequent walks.

December 2004: I don't go out so much, to avoid catching a cold. I work and exercise less.

January 2005: My strength fails me and I am losing control of my body. "The spirit is willing but the flesh is weak".
I am not afraid; I fight and hope.
Medical certification of inability to work.

................................................................................................

Since there are very few ALS patients in Greece, the disease is practically unknown.
No one tells you what you should do, like for example that you should submit the documents necessary to get a disability pension.
I, personally, quite by chance, met an elderly gentleman who alerted me to that matter a couple of months after my diagnosis.
I realized that only through the Internet could I find out more about this disease. Then I called my friend "Phoenix" to help. He responded immediately, and has already been with me for a month, since I did not have a clue about computers and the Internet.
So, for this past month, we have been busy searching through the Internet for any information regarding ALS. Since meanwhile it has become even harder for me to speak, before anything else we looked for alternative means of communication, like virtual keyboards and "hands-free" mice, or other ways of controlling a PC without the use of hands.
We've had some success, the virtual keyboard which can be found at the following address:
www.lakefolks.org/cnt(Freeware).
For hands free mouse control, with light head movement, there's the "Camera Mouse" software at www.cameramouse.com (Free 30 day trial). You must also have a Web Camera to be able to use it.
Another address for a mouse substitute (control with the head and clicking with an eye blink) is the following:
www.cybernet.com/products/navigaze.html(Freeware)

February 2005

I continue taking lessons from "Phoenix" on the computer. I have become a student once more, but to me nothing in life is accidental and I believe that if I give my brain mental work, perhaps it won’t occupy itself with my nerves that much. For example, Stephen Hawking has been an ALS patient since 1963 and is still alive because he gives his brain plenty of nourishment.
I’m also trying out the Hulda Clark method, which cleanses the body, as a whole, of parasites, in particular the kidneys, liver and gall. I began on January 28^th, today is March the 2^nd.
On the 8^th of March, in Ioannina, I will appear before a committee of IKA (Greek Social Security) doctors who will decide whether I am eligible for any benefits; but I will explain to them what ALS is.
It seems to me that my will can move mountains.

March 8th 2005
The IKA Disability Pensions Committee awarded me 80% for 2005-2006-2007. I knew right away that they don’t have the slightest idea what ALS is. In September I managed 100km per day on my bike and now I drag my feet.
It’s very cold. I avoid going out of the house. And I’m on the Internet 10 hours a day, searching.
Soon I’ll be needing a wheelchair. It’s very expensive. The people who own those stores demand a fortune. Where does one get that kind of money? But it’s the difficult problems that I like.

April & May 2005

We take Xenophon to Athens with the car.
And from Athens on to Samos by plane, to see Antonis and Annoula. The weather was fine in Samos. Antonis positive, as always. We had a nice time.
There was an Internet café, too, in Samos. A very polite girl with her boyfriend, a jolly good fellow himself, and her whole family.
On the way back, I tell Kirsten on the plane, why don’t we hop off to Germany, and see your mother, too?
If we can find a cheap ticket, let’s go, she says. And AEGEAN AIRLINES did have a cheap ticket, from Athens straight to Düsseldorf, via Kavala. On the next day we go to a shop with disability products to have a look for an electric wheelchair, a bath seat and other things I need. We go in-I feel like a child in a toy store. We saw wondrous things.
We ask, how much are they? He tells us, your social security pays for all this. Kirsten tells him, my husband is Greek, and he gives us some price quotes higher than those of Greece, because social security covers 100% of expenses in Germany. And I tell Kirsten, how could they ever allow a cure for ALS to be found? We only stayed for 3 days. We had a nice time, friends visited us. They talk to me normally, as if I’ve always had a problem with my speech. I felt normal.
Return to Gardiki. The weather just won’t get better. It’s all cold and rain here.
I get an itch all over my body. We go to the doctor in Ioannina, he sends us to a dermatologist who prescribes creams. The neurologist gives me a certificate of incapacity. On the way back to the village I trip and my waist starts aching.
A lot of pain. The village doctor comes and gives me an injection. I’m in bed, can’t move, I pee inside a tube. I weigh 100 kilos, how could Kirsten possibly get me up? We ask around about a crane, they tell us 1500 euros if we pay for it ourselves, without social security coverage. With coverage it costs 4500 euros, of which social security pays the 450. You realize how many people make money off the disabled.

May 20^th
Kirsten places me in a chair and I sit in front of my PC and browse through eBay. It’s where they auction used and new items and you can find whatever you want in good prices.
I bid on a crane for 120 Euros and win it. I tell a friend to go and pick it up, since he lived nearby. And he did. It seemed unbelievable to me.

May 25^th
I bid on a "Supertrans", an electric wheelchair with everything a paraplegic can imagine wanting, for 560 Euros, and win it. For the same wheelchair the German store had given me a price quote of 20,000 Euros. And I tell a friend to go and pick it up. Whatever it might be, for this price it’s worth trying out. It seems unbelievable, but I say to myself I might be lucky. My waist still hurts a lot, but we buy a boat ticket to Venice, Italy, via ANEK LINES.

June 2005

We travel to Italy, Austria and Germany. I go over to my friend’s to see the "Supertrans", and indeed it turns out I was lucky. Very good, as good as new. Now, more searching on eBay, for many things. Found them, new, in very good prices. For the same items in Greece I would have needed 25 to 30,000 Euros, which I would have handed out at the shop, had I had it; to my good fortune, I did not have it. Here I found it all for 1,500 Euros. I visited friends I’d made through the Internet who suffer from the same disease, we exchanged views, I had a nice time.
Now I won’t say what it is I can’t do with ALS, for it is too much. I’ll say what I can do.
I can think, see, hear well, and use my left hand a little. The rest I imagine...
Return to Gardiki. I go around the village with my "Supertrans" wheelchair. My fellow villagers see me again after 6 months. They greet me. The "Supertrans" is wonderful. I live again, I am among Humans.
June 30^th: the Greek ALS Forum is finally a reality: http://forum.als-net.gr

July & August 2005

A 6 month tour of international ALS Forums has led me to this conclusion: very few ALS patients fight for a cure. Most just watch and believe liars and frauds. Among the liars and frauds are many patients.
August 20^th: Phoenix is with me again. The disability pension from Germany arrived, too - 11 Euros per month. But the main thing is the disabled person’s ID card.

September 2005

The month of emotion and crying. Xenophon is working double shifts to manage all that I ask of him in time. He’s found for me many programmes that help me communicate with people around me.

October 2005

I have visitors from Germany and Austria. They help us around the house, tell us of ways to deal with some of the many problems associated with ALS. But the biggest problem is my sitting in front of my PC. I get tired very quickly because I can’t sit properly.

November 2005

I avoid going out of the house so as not to catch a cold. The itching won’t leave me in peace.
My elder brother is here, so that we can go to Ioannina together, to appear before the committee awarding the monthly bonus to paraplegics, for without this we can’t apply for other benefits.
We appear before the committee for the 5^th time. I go inside, with Kirsten and Vangeli, and see a different committee president, a young man. The orthopaedist takes a look at me, and the president says "Why didn’t they give this man the paper earlier?".
I couldn’t answer and I was moved, burst into tears.

December 2005

We receive a letter from IKA telling us to go to Igoumenitsa to collect money. We go there, they give me 20,550 Euros and tell me "when your pension’s issued, we’ll settle things, see whether you owe us or we owe you". My goodness, I say to myself, something’s changed, something’s happened.
Itching, itching, and more itching. I tell Kirsten this can’t go on, I can’t bear it, I have to take some medicine. We go to the hospital in Ioannina for a general examination: teeth, eyes, lungs, x-rays, blood tests, including a special one whose results will take a month to come out, heart, sugar and a dermatologist about the itching.
Within 2 days all exams were carried out. My lungs are at 97%. I am healthy in all aspects, except that of my dying neurons which cause my paralysis, and, like a cherry on the cake, the itching, because I can’t scratch myself. I cannot drive the electric wheelchair anymore and sit in front of the PC in the sun lounge all day long. I post in forums from all over the world, asking if there’s any medicine for the itching but it’s only nostrums from all over. I try everything I can find, but the itching won’t go away.

January 2006

I fight with an itching compared to which ALS seems like a minnow. The itching interferes with my thinking, my brain, so much that I wonder whether it could become a habit and I could end up enjoying it, as so many things in my life. But I can’t eat bitter almonds as medicine.
In the end I tell Kirsten to order bitter almonds for me, half a kilo, and she does so. She grinds it into butter and says before she gives me any of it she’ll eat that much herself. The bitter almonds didn’t work...
We go to Ioannina, for those blood test results that needed a month to come out. They tell us "all is OK with the blood". To the dermatologist again. It’s a young woman, Mrs. Fotika. She asks us, and Kirsten answers. She prescribes various ointments. We go to the pharmacy, buy the ointments, and follow the instructions devoutly. The days go by, but the itching goes on, undeterred, and I feel like Nietzsche breathing his last. But Kirsten persists; she won’t stop calling Fotika on the phone, and arranges for us to go to Ioannina again.
Fotika inspects me thoroughly again and prescribes 3 new ointments. We go back to Gardiki, Kirsten bathes me and applies the ointments. After an hour the itching had gone away. A great feeling. We go to bed. I try not to fall asleep so as to enjoy this splendour. It started in April 2005 and now is January the 27^th 2006.
I fall asleep and sleep for 17 hours at one go. I wake up, feel no itching, and think to myself "if this is a dream, let me not wake up; if it is death, it is an enjoyment".

February 2006

Everything is nicer now. I don’t mind ALS at all, as long as the itching doesn’t come back.
I post in all the various forums again and enjoy spiritual freedom. We call Phoenix(=Xenophon) on the phone, to ask if he’ll come to watch the Winter Olympics with us, but then Vangelis, my elder brother, calls and says he’ll come, so we can go to Ioannina together, to visit an IKA doctor, regarding my new power wheelchair, the "multi-machine"; we also have to visit the orthopaedics professor, Mr Peris. As I’m sitting there in the hospital, waiting for the supporting documents to be issued, the neurologist who’s been following my case, Mr. Sarmas, tells me that soon I’ll have to prepare myself for a gastrostomy.
After 2 days we finally get the documents from the doctors, without bribing, documents which now have to be presented to IKA’s secondary committee. We go home and Vangelis on to IKA in Athens, for more documents. Without my brother doing all the running around for me nothing would have been done.

March 2006

I continue to enjoy the “non-itching” and try out my electric wheelchair again.
I sat on the wheelchair and went out for a stroll with Kirsten after months of staying indoors.
Kirsten arranged it with Mr. Sarmas so that we go to the hospital on the 22^nd and on the 23^rd they perform the gastrostomy on me.
We call Xenophon, he comes and all three of us go to the hospital on the 22^nd.
On the 23^rd, at noon, they take me to the Gastrointestinal Department on a bed. They insert a tube through my mouth and reach my stomach. I, too, could see the inside of my stomach. The tube in my throat was very annoying and I made this thought: tube or itching? And I said to myself "tube, tube, tube". In the end they couldn’t perform the gastrostomy laparoscopically and told me it would be performed surgically, with total anaesthesia.

Return to Gardiki, with Xenophon catching fire from the computers and my experiments. We go out for strolls more often, too.

April 2006

The itching pays me visits every 3 or 4 days, only now it spreads over my whole body. Kirsten once again with brush and cream in hand.
Xenophon is working overtime to keep up with my demands of him.
I’m waiting for the new power wheelchair. On April 12^th the Permobil representative in Greece, the company technician for Europe, a doctor from Athens and another doctor from Ioannina will be coming here.
They come, representative, doctor, technician, and the wheelchair. I can’t speak, so I write “good morning” in English with Skeleton Key and wait; I say nothing, but listen to the doctors’ questions to the technician. I ask, and the technician shows me possible ways of being able to operate the wheelchair on my own. I tell him I can only perform one motion, he installs a switch for me which operates with my simple touch. There’s a small screen on which pictures that represent driving, seat adjustment, IR remote controlling for respective devices etc. alternate. You simply touch the switch and the machine does what you choose. In half an hour I had learnt all the functions. I choose "orthostatic mode" and it stands me up little by little. This was not simply pleasure, it was a delight; lying, half-lying, standing up, I can do all the moves myself. My ass is a sore, but being able to change position whenever I want I forget it’s even there.
Kirsten puts me to bed and I feel happy knowing that when I wake up I’ll go to my spaceship. It’s a big piece of freedom, I can do a lot of things myself, and even the itching abates.
Xenophon left. I didn’t cry much this time.
With this wheelchair I sit much better in front of my PC in whichever position I choose. Since April 22^nd it’s much easier for me to write with Smart Nav. English and German with Skeleton Key, and Greek, now that I’ve learnt how to use the speaker, with TWOnScreenPower. It’s a fabulous keyboard that improves day by day, and soon you’ll be able to operate your PC through it, with whatever we can move, even our eye pupils. And it’s free: http://www.als-project.com/
In May the doctor will tell me when I’ll be admitted for a gastrostomy.
In the holidays we had wonderful visitors, and I wrote and talked a lot.

May 2006

The neurologist who’s been treating me has had an operation in the head, so I still don’t know when the gastrostomy will be performed.
The itching comes more and more often all over my body. My skin seems fine but I get a lot of itching.
Kirsten brings home from the town hall a nurse responsible for home care. He takes a specimen of my blood and sends it to the Pasteur Institute in Athens for testing. After a couple of days they call and tell us someone has to go and pick up the test results. I’ve tested positive for Borrelia. I must visit my doctor and take the Western Blot test. We ask if we have to send another blood specimen, they say no, we have enough blood left from the one you sent. After a few days the Western Blot results come out, something between positive and negative. With the results in hand Vangelis goes to an infectiologist who writes him a prescription for Ceftriaxone (Rocephin), 2 grams per day for 30 days, intravenously.
We go to Ioannina to see the dermatologist about the itching. They take blood from me again, and after a few days we call and they tell us all is well, just a slightly raised cholesterol level.
We go to the health centre to have more blood taken from me, to send a specimen to Germany for the LTT test, and for a catheter fitting attachment so I can start with the antibiosis, but they tell me I have to start in the hospital, so they can watch me and see whether my body accepts it, then they can go on.
Kirsten asks around everywhere to find information on Borrelia, and those who know something about it tell her that the itching is a symptom of Borrelia, not ALS.
Eventually it’s decided I’m going to Athens. On the morning of June the 8^th I have to be in Attikon Hospital. If a gastrostomy proves necessary it will be performed there. I’ll start with the antibiosis, too, hoping it also helps with the itching.

June 2006

On June 6^th we go to Athens, Attikon Hospital.
They try to perform an electromyography on me, despite my will.
We drive to the neurologist recommended to us by his colleague of Attikon Hospital. It’s a steep uphill walk. Vangelis walks ahead to see if there’s a way for me to reach the doctor’s office on my wheelchair. He comes back and says "only with a helicopter. There are steps and an elevator that’s too small".
I say with relief "I’ll do it in Igoumenitsa or Ioannina".
We stay in Athens for 3 days and are told to come back on June the 19^th for admission.
We go back to the village. On the way there, in "New York" cafeteria in Agrinio, I drank water. 750 ml of water after 4 months. After that, the matter of the gastrostomy does not preoccupy me for the moment.
We arrive in the village; the LTT test results arrive from Germany, too. 2 negative and 3 positive bands.
We change the wheelchair docking position in the car, move it further ahead, towards the driver’s seat, because there are fewer vibrations there than in the back of the car.
On June the 18^th we go to Athens again; "Stanley" Hotel, near Omonoia, where we had stayed last time.
On June the 19^th Attikon is duty hospital. We are admitted as an emergency case with the itching as an excuse.
They take blood from me and try to attach a permanent syringe for the antibiosis. After 23 attempts they send me back to my room without a syringe.
On the next day they come again for blood. I think to myself "if only they’d strike vein with their first attempt". Finally, after they’ve pierced me 4 times, Doctor Fani Pliarchopoulou says "we’ll do it with a fitting". She instantly became more likeable to me.
They talk to me about an electromyography and paracentesis. I refuse. I tell Kirsten I don’t want to do anything, let’s just leave.
The doctors take Kirsten aside and ask her not to listen to what I say and prevent them from doing their job.
Relatives come, and they, too, advise me to do what the doctors say.
Mrs. Giamarellou, a doctor who specializes in parasiteology, comes, and says "tomorrow we do the paracentesis and begin with the antibiosis". I instantly smiled, and Giamarellou said "Do you see? He agrees".
Together with Kirsten and Giamarellou we go for the paracentesis.
They performed local anaesthesia on me and tried to take fluid from my spine, but it was impossible to get the needle in. The anaesthesiologist says "The spine has become as hard as a cane and the needle won’t get in". We go to the room again, Mrs. Pliarchopoulou takes blood from me, and lying as I am there a nurse comes and tries to attach a catheter fitting for the antibiosis. 4 times failure. The veins would break. Another nurse comes, she, too, tries 3 times, again nothing. The head nurse comes. I tell her "try 4 times, wherever you want. If you don’t find a vein, I stop. It just wasn’t meant that I take the antibiosis". She tries two times and says "Let us not torture the man, let an anaesthesiologist come".
In the afternoon an anaesthesiologist comes and finds a vein with her first attempt.
The fitting lasted for 5 days. Then an anaesthesiologist came again, tried 5 times, but the veins would break as soon as she’d find them, and finally she said that surgeons should attach a permanent catheter to one of my central arteries for the duration of the antibiosis. On the 30^th professor Maria Souli, who is responsible for my case, comes, and tells me "We will proceed to administering the antibiosis intramuscularly, because a catheter in a central artery dangerously increases chances of infection".
And, subsequently, the antibiosis was administered to me intramuscularly.

July 2006

My brothers bring me food from their restaurant. They visit me daily.
They perform a CT scan on me and check my stomach, kidneys, bladder and prostate with ultrasounds. All is well.
On the English MND/ALS Forum I read about the SOD1 test, a test which can determine whether my ALS is familial or sporadic.
Xenophon sends an email and asks where and how the SOD1 test is performed.
An answer comes from the specialist professor in England who was recommended to us by Paul Wicks of the English Forum. The test will cost 500 British pounds, if my social security covers such tests, and the money will go to research on familial ALS. If social security won’t pay for it, he is prepared to do it for free.
I bought a 3G card from Cosmote to have access to the Internet in the hospital with my laptop. I need around 400MB of data per month. Cosmote have an offer of 1024MB per month at a fixed rate of 71 Euros, with the first two months free of charge. That comes to 710 Euros for a year, 57 per month, about one third of what I pay to OTE (Greek State Telecoms).
I continue to itch, but in my room the air conditioning is broken and they keep the windows open. Lots of mosquitoes...
After the meal I get pain in my stomach. They give me pills and an injection. I had eaten green beans-or rather drunk them, for I don’t chew-and they were hard to digest.
They show Kirsten how to give me the antibiotic injections at home.
On the day I left the hospital I tried not to get emotional and cry. And I managed it with the crying, too, after having managed to control spastic laughter 4 days before.
We leave for the village. Kirsten gives me the antibiosis. At home my appetite grew. I tell Kirsten to get some tomatoes, onions, cucumbers and feta cheese and put them all together in the blender. I ate well. For fluid I drink water melon juice. It is easier to drink than water.
Until the 23^rd of July I take the antibiosis intramuscularly. Then I start taking it in pills-one in the morning, one in the evening.
I eat my food, drink my fluids, and work on designing an on screen keyboard for use with scanning mode.
We are expecting Dagmar, Kirsten’s sister, from Germany, at the beginning of August.
For Internet I use the 3G card 90% of the time. I wait for Xenophon to find me something so I can use the 3G card on my desktop PC, too.

August 2006

Kirsten’s sister is here and we’re having a nice time.
On August 4^th I get diarrhoea 6 times. August 5^th 5 times. On the 6^th diarrhoea again, on the 7^th diarrhoea again. It has consumed me. I don’t have the strength neither to drink nor to eat. On August the 8^th rice water, together with some pills for diarrhoea.
Dagmar has left. She was pleased with the way Kirsten and I understand each other.
It’s rice water in the morning, at noon and in the evening. Stomach pain. More pills. It’s only with rice water that I don’t get stomach ache; whenever I try something else, pain.
A cousin who is a doctor comes from Germany and gives me acupuncture. It’s a technique of a Japanese acupuncturist. The cousin is open to alternative treatments.
In the end the pain won’t stop at all, and we go to Hatzikonsta Hospital in Ioannina, because it was the duty hospital on that particular day. We go to the emergency ward. The staff behaviour surprises me. Impeccable.
They give me a pain-killer for the stomach. They give me an x-ray and a sonogram, they take blood and urine samples from me. The stomach has some problem. I eat half a yoghurt and the pain in my stomach drives me crazy. Immediately they give me a pain-killer intravenously.
After 2 days they take blood from me again and tell me my liver is better, but I’ll have to stay in for the weekend.
My nephew Paris from Australia is here, too. He’s at the village, at my sister Meropi’s.
On Monday my sister-in-law Eleni and my brother Spiros came. I didn’t have any pain. On Tuesday my nephew comes to Ioannina.
They take blood from me and tell me I can leave, but on Friday I’ll have to take a blood test again and inform my doctor about the results.
Hatzikonsta Hospital is impeccable, as far as staff capability and behaviour are concerned.
On August 26^th we return home. Weakness and a fever of 38.6° C. I lie in bed and fall asleep. I haven’t been to the toilet since August the 8^th.
I went to the toilet, emptied myself, and next morning my temperature had dropped to 36.3° C.
I tried to eat fish and my stomach hurt again. 7 hours of pain. No more fish. I have to find out what does not cause me stomach problems. I drink water melon juice, it’s easier to drink than water.
Paris ordered Omega 3 oil from England. It’s oil made of flaxseed. He made me pills for diarrhoea with scorched bread and vitamins.
In August I lost 20 kilos, and I now have difficulty in swallowing, but I still have enough fat.

September 2006

We’re in the village and I’m waiting for the gastrostomy appointment to be set.
I can eat food ground in the blender with relative ease, but I’m having difficulty with fluids.
The pains in my stomach and the diarrhoea have gone.
Paris has made many minor changes that help me, and he keeps us company.
The gastrostomy appointment is set for the 26^th of September, and on the 28^th the operation will be performed laparoscopically.
We go to the hospital, and the nurse finds a vein with her first attempt-a great thing.
On the 28^th we go to the Gastrointestinal Department. Kirsten is inside, too, with me. They stick the laparoscope in, they try, nothing. They stick a rubber feeding tube in from my nose down to my stomach. Very annoying.
They take me to the room and the doctor takes a syringe to show Kirsten how to feed me, but the food won’t go in. He tries with water, nothing, tries with air, nothing, and takes it out. A delight...
On the next day the visiting professor comes by and asks what happened. They tell him the operation was not performed and will now be carried out with total anaesthesia.
I have great difficulty in writing. My head goes right and left easily, but up and down with difficulty.
I don’t know for how much longer I’ll be able to write with head movement.

October 2006

I wait, and receive fluids intravenously. They did an endoscopy on me again and saw that my stomach is much further up than its normal position.
They are expecting some new equipment and they’ll try to see with an x-ray, on a television screen, where exactly my organs are. They told me that I must sleep standing up, not lying, if they do it quickly.
With the endoscopic tube they can’t see well enough to make an incision safely.
I heard that my neurologist, Mr. Ioannis Sarmas, is coming back from America, where he underwent a successful operation in the head, and I was delighted.
The equipment arrived, has been installed, and tomorrow I’m having a gastrostomy for sure.
October 10^th. I finally had the gastrostomy. It was difficult, but all went well.
I don’t know why, but everybody in the hospital is treating us wonderfully. The doctors help me as much as they can and give me all the documents I need to present to the committee for the Eye movement system, a system for operating my computer with the eyes, because it’s now difficult for me to write with head movement.
On the 12^th Paris came and on the 13^th we left for the village.
I start using the ceiling crane.
Paris fixes a lot of things and helps us with everything.
The phlegm is gone because I get enough fluid.
I submitted the supporting documents for the Eye movement system and was examined by a committee in Ioannina for that purpose. The neurologist gave me her OK, as did the professor at the head of the Neurological Clinic.

November 2006

On the 12^th of November we drive to Athens. Paris is at the wheel. We go to Xenophon’s, have coffee, and Paris stays in Athens because he’s leaving for Australia. We take Xenophon and return to the village on the same day.
Xenophon puts my computer in order for the nth time.
I don’t insist on his staying longer because pretty soon I might need him again, to install for me the system with which I will be able to write using my eyes.
All is well. I don’t have any pain, and the itching is bearable.
We’re having a nice time. The gastrostomy is very convenient.
I get tired very quickly. I can’t keep my head up for long in order to write, but positive psychology and good company help a lot.

December 2006

It is very difficult now for me to write with the head mouse (Smart Nav). I asked my brother Vangelis to try to get approval for the eye tracking system from IKA (state social security organization). If anyone can do it, Vangelis can.

January 2007

I don’t sit much at the computer because I can not write. I get tired very quickly. I watch Eurosport on television all day long, waiting for news from my brother Vangelis about the eye tracking system.
People, friends or family, don’t come to visit us because I can not speak.
I think, think, think. I am overwhelmed by feelings that I can not express.
I think about how it would be possible to say 5 words a day.

Vangelis finally got the approval from IKA and has ordered the eye tracking system.

February 2007

On February 13^th Xenophon arrives with the eye tracking system.
We try to connect it to the laptop but the laptop is missing the appropriate port. Kirsten and Xenophon dash to Igoumenitsa and buy an extension card.
We install the system, but it doesn’t work properly. The laptop is old and its graphics can’t support the application. Xenophon searches on the Internet, finds updates and finally manages to get the system to work. But we can’t mount the laptop on the wheelchair in such a way that I can use the system. It’s too low; my head drops to the front and to the side and the camera can’t get a proper image. My glasses are a problem, too, creating reflections that confuse the camera. Kirsten buys me a new pair, with anti-reflex coating, but the problem’s still there.
We try with the Desktop PC, but it’s the same story there. I manage to write for a while but then my head drops and the system "loses me".
A sure and easy way must be found to keep my head upright and stable. By the time Kirsten manages to do that with the head rest Paris made I am so tired and in so much pain that I can do nothing.

March 2007

After a month of trials we realized we need additional equipment to make the eye tracking system work properly.
Xenophon left. I asked him to look for a new laptop with a bigger screen and bigger capabilities than the old one. I’m sure he’ll find the best for me. He’s found, on the Internet, a head rest and a laptop mount for the wheelchair, and will order them from Athens.

April 2007

I wait for news from Xenophon. Now and then I sit at the Desktop PC and try to write with my eyes, but I can’t last more than 10-15 minutes.
With Smart Nav it’s now practically impossible to write. I can barely finish one sentence before I’m exhausted.
It’s TV all day long again, or movies from the Internet. Thank goodness at least those are around...

May 2007

The weather’s good and at least we go out for walks frequently, almost every day.
I now have difficulty in breathing as well. Kirsten takes me to Ioannina twice, so doctors can test my blood gases. The first time they tell us all is well, the second that the level of carbon dioxide in my blood has now reached the upper acceptable limit. If it rises any further I’ll have to seriously consider the possibility of a tracheotomy.
Theodora, my sister from Australia, and my nephew John, Paris’ brother, are here.
The head rest and the laptop mount Xenophon ordered are here. Kirsten and John managed to assemble them and now I wait for Xenophon so we can try them with the eye tracking system.

June 2007

On June the 2^nd Xenophon comes with the new laptop.
We try the eye tracking system with the new head rest and the mount. It works perfectly. This time the glasses are not a problem. I can try several different combinations by changing my position on the wheelchair or that of the laptop on the mount and get rid of the reflections. I can even write without glasses. The laptop mount is close enough so I can see quite well without them.
The head rest and the mount can’t fix everything though. Saliva build-up in my mouth, which has been a problem for quite some time now, since I can’t swallow at all, stops me from using the system for more than an hour. Around that time I have to stop and tilt the back of my seat forward so the excess saliva can flow out of my mouth, otherwise I’ll choke. I also get shortage of breath and have to pause frequently. And the pain I get all over my body from sitting in the wheelchair is always there.
But I can live with all that. It is an unspeakable joy to be able to express myself fully again after months of frustration. And having 4 people around me who love me and attend to my needs 24 hours a day makes everything much easier.
The gastrostomy tube comes out twice during my sleep and Kirsten rushes me to Ioannina. The second time the doctors do a new blood gas test on me. This time they tell us that the carbon dioxide level has risen above the acceptable level. Dr. Sarmas, my neurologist, suggests that we make arrangements for a tracheotomy as soon as possible.
Kirsten calls Dr. Lagos, one of the many friends she’s made after so many visits to Ioannina University Hospital, and he promises he’ll let her know as soon as there’s a vacant bed in the Neurological Clinic.
John goes away on a short trip, visiting relatives in the Peloponnese.
On the 25^th Kirsten, Xenophon and I go to Ioannina. I am admitted right away and on the very next day the tracheotomy is performed, by Dr. Kitsakos, an amiable, smiling surgeon. All goes well. When I come to the incision in my throat doesn't hurt but I have pain in the heels of my feet, where blisters have already grown. How can I ask them to put a pillow under my feet...
After two days in Intensive Care I return to my room. The heat is scorching; temperature outside is 40 degrees. There’s no air-conditioning inside the rooms. The units are there but don’t work. A possible explanation, offered by a fellow patient, was that air conditioning was being abused and the hospital was paying huge electricity bills, so they deactivated the units...
Kirsten and John, who’s back and will be staying with us for another couple of months, learn how to do suction on me, change the gauze around the tracheostomy and turn me in bed; not an easy thing to do with the tube hanging from my throat. Xenophon contacts a company in Athens and orders for me the ventilator suggested by our friend in Samos, Antonis, whose wife Annie has had a tracheotomy a couple of years now.
Kirsten sleeps by my side, as she always has done, on my wheelchair or any available chair; John and Xenophon go back to the village to sleep and return in the mornings.
I develop a fever and doctors say I’ll have to stay a few more days. At least the heat wave has subsided...
The ventilator’s here. The head of the company came all the way from Athens to make sure the machine is properly set and help us with getting coverage from IKA. The representative for our region visits us every day to check on my progress and uses his contacts among the doctors to speed up things for me, so I can go home as soon as possible.
At times like these it seems to me I have been quite fortunate in my misfortune, and I can’t help but wonder whether other ALS patients in Greece are as fortunate as I’ve been. Most probably not...

July 2007

On the 5^th of July we left the hospital and headed for our village. On this last day they changed my tracheostomy tube for a double-lumen tube. It’s easier to change; even Kirsten can change it, if necessary. The Hospital is quite far away and we can't just hop over there every now and then. Dr Papakonstantinou promised he’ll come over to our village to help, if needed, and so did Drs. Lagos and Sarmas.
Xenophon is adding the finishing touches to the new laptop. He came planning to stay for 2 weeks and ended up staying 5. That’s friendship!
On July the 18^th, Kirsten’s birthday, I’m sitting watching the "Tour de France", the bicycle race, on TV. The time has come for me to appear before the IKA Disability Pensions Committee again.
We go there and sit in the waiting room, along with others. The place is crowded. It’s time for suction again. Kirsten carries the ventilator and controls the wheelchair while John carries the 10kg battery. To our good fortune Sophia, wife of my neurologist Dr. Sarmas, was among the members of the committee. They processed our case quickly and told us that for the next appointment the committee will come to our home, to spare me the discomfort.
We go home. My sister Theodora cooks wonderful meals but I can’t even taste them. But at least now that my breathing is not a problem I can sleep a little better.
The new flexible, 3-section bed that my brother Vangelis and my nephew Takis bought for me arrives. With this and the air mattress I can sleep even better. My body relaxes after months of tension. Theodora massages my legs and feet quite often and that also helps a lot.
My mother-in-law from Germany is also here. She recounts everything that happened at the party they gave for our niece Cornelia’s graduation from high school. We’re having a nice time. Kirsten is happy to have her mother near her. My mother-in-law’s wonderful; it’s as if she were my own mother.
And so ends my first month with a tracheotomy.

August 2007

My mother-in-law has left, and now we’re expecting Dagmar, Kirsten’s sister, who will be staying with us for around 10 days.
I try to sit on the wheelchair but my back hurts a lot and I have to go back to bed after 10 minutes. The inflexible tube in my throat also causes me quite an inconvenience. I ask Dave in the U.S., who’s had ALS since 1986 and has lived with a tracheotomy since 1993. He says "turn on your Webcam so I can see you". John turns on the camera and Dave writes that he can help and will send me some samples through the mail.
Kirsten goes to Igoumenitsa to meet Dagmar. John and I are trying to achieve a good calibration score, necessary for the eye tracking system to work properly and me to write effortlessly. I write on the English Forum that "I’m back", that I’m writing with my eyes using Quick Glance eye tracking system and that it’s very good. They welcome me and tell me that Tim has been writing with the same system for 4 years. Immediately I write to Tim and ask him how I can achieve a good calibration. He answers me right away and suggests I try with one eye, instead of two that I’d been trying with. I follow his instructions and at once my calibration score improves.
Dagmar brought with her a book, "Tuesdays with Morrie". It’s the true story of a University professor who had ALS and was being visited by a former student of his every Tuesday. Great book.
We get lots of visitors in August.
Dave’s parcel arrives from America. It proves to be of great help. The first time I manage to sit on the wheelchair for about an hour, and after that each day I manage a bit more.
We had a very nice time with Dagmar. John and Theodora will be staying an extra month. That’s good for us.
Theodora gathers the figs and dries them for the winter, so I can use them against constipation.
We’re looking for a woman who’ll stay with me for 3-4 hours, twice a week, when my sister and nephew will no longer be with us, so that Kirsten can go out shopping or to IKA.
The new laptop is causing us a lot of trouble, and Windows Vista is not at all "friendly" for ALS patients. I had to send the laptop to Xenophon in Athens to see if there’s anything he and my nephew Takis can do about it.
Dave told me not to stay in bed all the time because I’ll get pneumonia.
After a long time I managed to eat something with my mouth again, 120gr of mousaka and 150gr of yoghurt.
And that’s about how my second month with a tracheotomy ends.

September 2007

I start sitting longer on my wheelchair and at the PC.
Alper, my friend from Turkey, is better with his gastritis.
Rama also sent me some good news, that they found what is at fault and causes ALS.
Dave from America told me he started taking food from the mouth as well, a year after his gastrostomy, and gradually the saliva subsided.
As you can see I write more.
We go out for walks with the wheelchair. I see my village again and I notice new beauties, as if I’m seeing everything for the first time.
Xenophon sent me an email saying that the problem with the laptop was the CPU fan. It’ll be ready in 6-7 days. He also updated my webpage, 10 months at one go. I hadn’t written anything since last November, because it was too hard. Now I can write again. Being able to write with my eyes is glorious, and when I have a good calibration score it’s also a pleasure.
I call George and ask him if he’ll keep me company twice a week for 3-4 hours. He told me he’ll be working at the town hall for the whole of September. But he sounded positive.
Tomorrow, September 10^th, I’ll be going to the hospital for an eye examination, for it’s been 2 years since I’ve had one. If I see better I’ll get better calibration scores and I’ll operate my PC better. I’m totally paralyzed but I feel healthy.
We went to Ioannina University Hospital. While in the car, Kirsten phoned Prof. Dr. Lagos, who had made the appointment on our behalf and was waiting for us. He came along with us to the opthalmologist’s and waited. And Kirsten says to him "I need to get a prescription for Saroten". Dr. Lagos jumped to oblige us. You’ll be wondering how much we gave him. NOTHING!!!
The socket on the wheelchair, where the ventilator connects, is failing. We went by Karras Bros., auto electricians, and they said, "we wouldn’t want to wear out Fotis, we’ll come by your place in the afternoon".
Today, September 10^th2007, I realized what condition I’m in.
George Karras came and fixed the wheelchair. Today, September 13^th, I’ll try it again. I have a good calibration score, too, and I can write without the magnifier.
George came and spoke with Kirsten. They agreed he’ll come one of the next few days so she can show him how to do suction and calibration. He’ll be staying with me for 3 to 4 hours and getting 20 Euro.
John and Theodora left. We had a nice time in the 4 months they were here.
Kiki from Rhodes sent me the application form for IGF-1.
We go out almost every day with Kirsten. George is a fine fellow. He treats me impeccably, he learns quickly and Kirsten is at ease when she goes shopping, to IKA or to doctors.
In the next few days Kirsten will be going to Ioannina to get the doctors’ OK for Increlex, the IGF-1 drug.
In Italy PALS take Iplex, a similar drug, with good results. The future is the right answer.
And so ended my third month with a tracheotomy.

October 2007

New hope came from Italy, from Carlo Bruno’s webpage, www.carlobruno.it. It’s worth reading.
I ask around everywhere for more information about IGF-1. I exchange emails with Carlo Bruno, and Xenophon translates and posts in my forum whatever information he can find in various other forums.
George learns quickly, and whatever he does, he does with love.
I can't urinate and Kirsten takes me to Paramythia Health Center. They insert a catheter into my bladder and more than a kilo of urine comes out. True FREEDOM. They also give me antibiotics, which I'm to take for 10 days.
I communicate daily with Xenophon. We talk mostly about the laptop, about how he'll install Windows XP on it, because Windows Vista is not convenient at all for me. And the on-screen keyboard for eye-trackers, again with Xenophon's help, becomes a reality.
Kirsten and Vangelis go to Ioannina for the IGF-1.
I have a frequent need for suction and Petros changes my tracheostomy tube. He asks the pneumonologist and gives me antibiotics, and after taking the first pill I already feel better.
Xenophon found a way for me to receive SMS on my laptop. I await the arrival of the laptop with impatience, and I'm glad it will soon be ready.
I got to know Eftychia from Chania, who's had ALS since 1992.
The two Bills came by and measured my bed, to find a way for me to be able to use the laptop on it; I spent the whole month of October in bed.
And so ended the fourth month with a tracheotomy.

November 2007

The state ordered Increlex from the US.
I urinated blood. Kirsten took a urine sample for examination, and the diagnosis was urinary tract infection. I have to take antibiotics for 15 days.
Spiros came for a few days, bringing me a nice present: Xenophon, who brought me the laptop and stayed with us for 10 days. He also found for me the way to make Skeleton Key work in Greek.

December 2007

Increlex has arrived from the US and is now at the IKA pharmacy in Athens.
I have to visit an endocrinologist in Ioannina. We go there and they take blood from me for testing, to see whether my body can tolerate the IGF-1 drug.
On the way back I have difficulty breathing. Kirsten calls Dr. Kitsakos, who tells her “the tracheostomy tube might be clogged”. She calls Petros right away to come and change it. After the change, Petros says I should take antibiotics. I take the antibiotics, but still have difficulty breathing.
On December 15th I start taking Increlex.
Xenophon completes the Greek Skeleton Key keyboards.
I am a bit better with my breathing. Suction is at normal levels.

January 2008

I continue taking Increlex. Kirsten arranged for the municipal home care crew to come and get a blood specimen from me, so they can check if I have some kind of bacterial infection which is causing the problems with my breath.
The help came. They can't take blood from me and we go to the bacteriologist in Paramythia, Mrs. Barba; she managed to take some blood from my leg with her first attempt.
We go to the hospital in Ioannina with Kirsten, to Mr. Kitsakos, again for the problem with my breath. He made some changes to the ventilator settings and the problem was instantly solved.
I sit in the wheelchair again, after a long time, and we go for a walk through the village.
I ate chocolate from the mouth without problems with excess saliva.
For me 10 mg of Increlex is good enough for now; later on we'll see.

February-May 2008

My condition has stabilized; I could even say I feel a little better. What does better mean? I can sit on my power wheelchair for quite some time without experiencing breathing problems. This allows us to go out for walks quite often, now that the weather's better. And we were able to lower the pressure on the ventilator from 20 to 18. So we applied for a continuation of therapy with IGF-1. Since mid-March I've also been taking Colostrum, which contains IGF-1 as one of its ingredients, and Aloe Vera Gel.
Today, May 29th, I managed to stay off the ventilator for 488 seconds. In March, when I first tried this, I had only managed 186 seconds, and in April I had gone up to 256.

June-July-August 2008

I continue taking IGF-1 Increlex and I've been stable since December 2007.
It was very hot in the summer so I almost didn't go out at all.
With my computer I travel all over the world. I listen to a lot of music. Music is the cheapest drug, and it's harmless. Through music I am merry and happy. Music is a friend to the patient and an enemy to the disease. When I listen to music that I like, Fotios is not on this Earth. Hearing, vision and brain are not affected by ALS.
I believe that a good emotional state plays a great role in any disease and particularly in ALS. I think of what I can do, and there are lots of things I can do, and not of what I can't.
I have been ill with ALS for almost 5 years, and in the beginning I was being told "bulbar ALS, average life expectancy 14 months". Ha ha ha ha ha ha, I'm not going anywhere, I'm staying here; no more worries!
I wish you power of spirit, there are lots we can do!

September-October 2008

Come October I will have been ill with ALS for 5 years (my diagnosis was made in March 2004, but I had the first symptoms in October 2003, in my voice).
In the beginning I thought that if I give my brain "food" it won't occupy itself with the neurons; now I know I was right to believe that, for I am still alive.
I was born in Gardiki, Thesprotia, on Arpil 24th 1960. Our house was made of osiers, straw and mud. 2 small rooms and one bed for 11 people. In my village there were no electricity, no running water, no toilets, no roads, no phones, no radio, no TV, no cars, no bicycles. In 10th century Constantinople and B.C. Rome they had more than we did.
Still, I managed to get to a point where I made enough money to live my life as I pleased, and in the last few years I was working 60 days a year. When I was 25 I travelled 5 or 6 months a year, having a better time than the very rich.
In January 2005 Xenophon read to me about a doctor in New York who had a special bed, a wheelchair, a computer and various other things. Not even in my imagination did I know of all these things. 4 years later I outdid by far the doctor from New York in everything. I got what I need to stay alive. I got what I needed, not what my social security suggested. Since December 2007 I've been taking Increlex (IGF-1), and I can say with certainty that it's helped me to be alive and happy. In January 2008 I couldn't keep my eyes open, and now I'm at the PC 10 hours a day at least.
Now I won't tell you why I'm happy, you can think what you like, everything is possible. Everything is possible for our minds.
5 years (=60 months) with ALS amount to many, many years of a healthy person's life. Before the disease I used to say that I was 800 years old, for I had surpassed even my most improbable childhood dreams. With the disease I once again surpassed my dreams, and if I did it you can, too.
Now even I don't know how old I am; think what you will, you're right...
I've made dreams in my life and many times I surpassed my imagination. I spent my life to the fullest, and when the "ferryman" comes he will find nothing to take, so he avoids me...

December 2007-December 2008; one year with Increlex.

With Increlex it’s as if time has stopped. I didn’t even realize how the last year went by, as far as the disease is concerned. Before late 2007 week by week I felt the change and the progression of the disease; now it feels as if I went to sleep on December 15th 2007 and woke up today.
I’m certain Increlex has helped me.
Once again I think of how lucky I’ve been in my misfortune. Last July we advertised on Radio Thesprotia that we were looking for a woman to help at home 5 days a week. And we found an angel, Nina, who learnt everything very quickly and has been with us already for 5 months, by now a part of our family.
We initiate actions to achieve the prescription of Iplex for Greek ALS/MND patiens. In this effort all forum members are making, each of us any way they can, we are being helped by various blogs and bloggers, particularly http://paratolmo.blogspot.com/.
In Italy 5 councilmen in the regional parliament of Marche submitted a motion for the administration of compensations and assistance to local PALS and families, given that, among other reasons, "at the moment only one drug exists, whose principal active ingredient, constituted by the molecule rhIGF-1-rhIGF-1BP3, is in a position to significantly delay the progress of the disease and noticeably improve quality of life, and therefore represents the most appropriate treatment currently existing", obviously referring to Iplex:
http://www.consiglio.marche.it/banche_dati_e_documentazione/atti_di_indirizzo_e_controllo/mozioni/pdf/moz314_8.pdf

January 2009

The lawyer Mrs. Katerina Laledaki has undertaken to represent PALS in connection with the Iplex issue, and if the matter does not progress through dialogue until March, we will take it to court, as the Italians did.
I’ve created a list where ALS patients, families and friends enroll.
After the "Ethnos" newspaper dedicated two pages to it, with a fabulous article by reporter Argyro Lytra, the disease ALS became a little more known in our country. Newspaper "Thessaloniki" also went into the subject, with its article of January 29th and on January 31st neurologist Dr. Triantafyllos Doskas spoke about ALS and Iplex on NET radio.
I have to keep one step ahead of the disease, and Xenophon helps me with that. I always have something to hope for from technology, like driving my spaceship (=wheelchair) and producing speech by thought alone: http://www.theaudeo.com/.

February 2009

The "crippled" month, with the most developments...
On February 3rd, on Terence Quick’s morning show on NET radio, neurologist Dr. Afroditi Konstantinidou speaks about ALS and Iplex.
On February 9th newspaper "Espresso" publishes an article by reporter Rita Mela about myself and ALS.
On the 10th and 11th of the month ANT1 TV sends a TV crew to our village and airs the subject on two consecutive shows of Mr. Papadakis’ "Kalimera Ellada". During the second show, members of Parliament Mr. Tragakis and Mrs. Damanaki , watching from ANT1 studios in Athens, broke into tears. The shows attracted the interest of Deputy Minister of Health Mr. Salmas, who intervened through the phone on both, and on the evening of the second day visited me at my home. We talked about many subjects; regarding Iplex, he told me that he’ll try to obtain information from the Italian Ministry of Health. Xenophon was present during all the developments and answered questions by the deputy and the reporters.
On the 28th of the month the Deputy Minister of Economy and Finance Mr. Bezas also visited me; he, too, told me that he’ll do everything possible on his part.
Xenophon continues his search on the subject of thought controlled communication and mobility aids and writes on the forum about various relevant research projects taking place around the world; and since Xenophon does everything so that I can continue to be able to express myself, I’m not afraid of Anything.

March 2009

March 5th 2009: 5 years since my diagnosis.
March 10th: The U.S. Food and Drug Administration (FDA) decided to allow experimental use of Iplex for ALS.
The Ministries of Health and Finance, through Messrs. Salmas and Bezas, support us in our effort to gain access to Iplex.
Insmed announced they intend to expand their ALS programme to include other European countries. I hope and wish Greece will be one of them, since ours was the country that contributed the most signatures outside the US to the petition to make Iplex available for ALS
The first prescriptions by neurologists of Iplex for ALS patients have been secured.
Xenophon went to Ioannina to inform doctors on the situation with Iplex.
In Ioannina professor Kyritsis, head of the Neurology Clinic, said that Iplex "might have undesired effects"; and I ask him, is death not an "undesired effect"? For without Iplex, death is certain.

April 2009

We are still seeking the covetable Iplex prescription at various hospitals with neurological clinics. Until now, wherever Xenophon has applied, presenting all the data we have, the responses have been negative, in Ioannina, Patra and Thessaloniki quite unjustifiably, and in Larissa rather expectedly so, due to a mistake that was purely mine. I'm waiting for the cough assist machine which will rid me of frequent respiratory infections and antibiosis.
We go out often so I can gradually grow accustomed again, for I always hope to someday have the system which will allow me to drive my wheelchair-spaceship with my thoughts.
I began taking Vinca, 3x2ml a day of a tincture we made ourselves, an idea of Xenophon's. I've made a bet with the disease that I will keep finding reasons to make my life better and hope, and let the disease and all its allies do as they please.
On the 24th I had my 49th birthday and received 50 ruby red roses as a gift. Kirsten and Xenophon got me a very good video camera. I want to make videos of my everyday life and everything I've learned from PALS who have been around for more than 15 years. Because something as simple as suction catheters might slowly kill.
In April I had visitors, Saroglidis brothers from Thessaloniki, who got to know me through the "Ethnos" newspaper article of Jan. 9th, "Rododafni" from our forum, and reporter Argyro Lytra (who wrote the aforementioned article). Nina left for her village, to get some papers she needs. Everyone says she'll be finished and back in 10 days; I say it'll take two months at least.
I raised the dose of Vinca to 3x10ml a day.

May 2009

The cough-assist machine arrived, and it's very, very good. It sates me with air when it works and clears my lungs much better than ordinary suction.
Nina hasn't returned yet.
I play poker on Facebook and I love it, because to me the world is fantasy, since only in my imagination can I do what I can't do for real.
Insmed (manufacturer of Iplex) share has risen more than 500% since February 2009, and think that we're in the midst of an economic crisis. The fact that Insmed share is rising makes me very happy, and from now on I'll be watching it.

June 2009

It's been two years since my tracheostomy operation.
This is my second month with the cough-assist machine and it helps me very much when I have breathing problems.
The situation with Iplex is at a standstill.
I get lots of emails from people who support me in my disease and in my quest for Iplex.
Nina came back, after exactly two months, just as I had foreseen, and my friend Giorgos Pantazis gave me a pleasant surprise by bringing with him a childhood friend of mine, who had been my first platonic love. Lately I pass my time playing poker on Facebook with virtual money that my friend Aliki Polizoaki, whose mother Niki also had ALS, sent me. I like poker a lot because there's a lot of imagination in it.

July 2009

We're looking all over Greece for a doctor who will prescribe Iplex for me.
We're expecting my mother-in-law and Kirsten's sister. I adore my mother-in-law and I can't understand why mother-in-laws have a bad reputation. How could one possibly love the daughter and not love the mother that gave her birth?
I'm still playing poker on Facebook and thus passing my time.
I heard some doctors said that our forum harms ALS patients. And I ask these doctors, are they allowed to sell patients seaweed as if it were silk ribbons? Of course not. The forum only harms quacks' wallets, not PALS, relatives and friends.

August 2009

Insmed announced they are not giving Iplex to any new ALS patients besides the approximately 70 around the world that are already receiving it, in order to ensure their uninterrupted supply for the next 24 months and thus possibly obtain more definitive data about the drug's effectiveness without conducting a clinical trial.
I am certain that Iplex helps, for I have been taking Increlex since December 2007 and I have seen positive results.
Kirsten's sister Dagmar is here, with her boyfriend Thomas, and their being here is very pleasant, my mother-in-law is here, my brother Spiros is here and has given me real money to play poker with, and time goes by pleasantly. August is the month our house is full of life.

September 2009

In September we changed the tracheostomy tube and for the first time it was painful for a few days.
My sister Vicky visited us with her husband Nektarios.
I'm waiting for October, when I will complete 6 years with ALS.

October 2009

It's October 2009. Every October I charge my battery and every October I feel immortal and the ferryman seems like a beggar begging for a little life.
Man gets used to whatever situation he's in. I have forgotten how it is to speak, to eat, to drink, to walk, to move anything but my eyes. But that doesn't disturb me, I'm still having a good time. I can see and hear well.

November-December 2009

My heroin's name is Kirsten Helga (=my saint) Tzimas-Bätz.
Kirsten never said to me "I'm tired", 74 months now, and she's taken care of me on her own most of the time.
I have a baby-phone, instead of a plank. I have an oximeter and she doesn't ask me whether I need oxygen because I don't know whether I do need oxygen. Kirsten always hears me when I need something even though she's alone; Ilias had four people around him...
Kirsten used to take me to the hospital regularly so the doctors could check whether I need a gastrostomy or a tracheostomy, not like what they did with Ilias. Ilias needed a tracheostomy but his family didn't know.
The only reward Kirsten asks of me is a smile every day. And I want patients like me to be able to smile like I do.
There are around 200 patients with a tracheostomy and a gastrostomy in Greece who have turned a room of their home into an ICU with round-the-clock attention. Intensive care at home is very expensive and I want to do something about that.
I've been taking Increlex for two years now.

January 2010

My hero's name is Xenophon (a foreign voice, which became my voice) Alexopoulos.
Where do I begin remembering? If I hadn't met Xenophon in 1994 I wouldn't know any of all the people I have come to know through the Internet. It's been five years now that I speak through a computer and I owe this to Xenophon. I think that life without a computer these 5 years would have been a torture. But with the computer my life is pleasant.
I thank all the doctors and staff at Ioannina University, Hatzikosta, Filiates, Arta, Preveza and Attikon Hospitals. It would be a dream if all Greek patients enjoyed the treatment I enjoyed. I have been very lucky in life because I met the right people at the right time and my life was always interesting.
If I were asked to give the experiences I've had during my illness in exchange for getting well I wouldn't give a single moment. And I ask you healhty people, what would you like to have, experiences in life or money?

February 2010

I suffered an attack of acute urine retention and had to be catheterized. The doctor suggested I take a blood test that would include PSA screening. The test results showed PSA levels way outside the normal range. We went to the hospital where they did an ultrasound on me and found that my prostate was enlarged. We were told I should take antibiotics for 15 days, then take another PSA test and if PSA levels continue to be abnormal have a biopsy.

March 2010

We finished with the antibiotics and the PSA levels again came out elevated. We went to the hospital where they performed a rectal examination and a biopsy on me. The doctor found the prostate gland soft and suggested we try for one more with antibiotics until the biopsy results come out, for it is quite probable that the elevated PSA levels are caused by the two successive urinary tract infections I suffered since November and at my age it's a bit early to have prostate problems.

April 2010

On Easter Sunday my brothers from Athens came to visit and we had a good time.
I'm on antibiotics again because of the PSA.
On April 24th I had my 50th birthday and an angel brought me a new, high-end laptop as a gift.
I finished taking antibiotics.

May 2010

20 days after I finished with the antibiotics I took yet another blood test and PSA markers again came out abnormal. I have to undergo another biopsy.
We went to Ioannina hospital for the biopsy. This time they managed to take 8 samples from the prostate. I was in pain for a week.
The results of the first biopsy came out and were good.

June-July-August 2010

The results of the second biopsy came out and they were good. I don't have a problem with the prostate.
In June my beloved mother-in-law visited us and in July a couple of old friends from Germany. We had company almost all summer long and it was nice.
I have no news of ALS and that is good news. No news is good news, as the Americans say...
In a short while I'll start taking CoQ10, 1200 mg a day, in syrup form. I hope it helps me.

October 2011

14 months they had told me; I've already reached 90 months and I'm carrying on.
The ferryman can wait, since he's not taken me until now. We'll see if he takes me at all, now that the cure will come. I say he won't come, because he digs me, because he got to know me as a sick man and wants to watch me get well. Yes! Yes! Yes!

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In memory of Fotios Tzimas

11 Eylül 2014 Perşembe

Oneira - Dream

Geia Hara vlami!