Borrelioosiin sairastuneita lääkäreitä eri maista

Borrelioosiin sairastuneiden suomalaisten henkilökohtaisia kokemuksia taudista ja sen hoidosta.

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Borrelioosiin sairastuneita lääkäreitä eri maista

Viesti Kirjoittaja soijuv » Ma Loka 21, 2013 13:08 ... with-lyme/

doctors with lyme

This is a selection of doctors who found themselves experiencing the same level of ignorance & despair that lyme patients suffer from when it comes to testing & treatment..

*Updated August 2013

Californian doctor relays his story ‘By spring 2006, I was unable to stand for the first several hours of the day without holding on to a walking stick. I’d become totally debilitated with back pain, and hadn’t a clue why. Several months into this misery, I happened upon an old colleague who—when I told him that “aging sucks”—suggested I had Lyme disease. I replied, “No way!” Not me.
But it was true. And now, 3½ years later, I still struggle with what became far worse than I could ever imagine.

The Lyme disease bacterium loves nerves and cardiac tissue. Brain, nerves, and blood vessels, muscle, and joints become home to this infection. But the symptoms any one person develops are a function of many factors including individual genetics and the role of co-infections.

Late stage Lyme disease can look like anything from nagging aches and pains to devastating brain and life-threatening heart syndromes. It’s not only a cause of massive suffering for those with the disease, it’s virtually impossible for most doctors to diagnose and treat. The reasons for this will be discussed in another article.

AUTHOR: Jon Sterngold is a Willits, CA, resident and physician.
- See more at: ... ySynE.dpuf

BMJ. 1999 September 4; 319(7210): 649. PMCID: PMC1116513
Personal views

My years with Lyme disease
Chris J F Wilson, surgeon lieutenant

I first became unwell in the wake of some students sadly succumbing to the meningococcus. I had non-specific symptoms—malaise, fatigue—but with the photophobia, headache, and difficulty on my feet they were serious enough to warrant admission to the neurology ward for investigation. The investigations were thorough, but no cause was found.

A label of “depression” was hung around my neck..

I was discharged back into the hands of a less than sympathetic university health service, and it was here that the mysterious spectrum of symptoms that graced my life earned me the title “malingerer,” chiselled deeply into my notes and even deeper into the clinical opinions of all those who saw me thereafter.

My aching joints were scrutinised by the rheumatologists. The neurologists put me under the inquisition again, trying to find some explanation for the interminable headache. Ultimately, as is often the case, I was directed to the psychiatrists. A label of “depression” was hung around my neck, and I spent several months at a loose end, my studies on ice, convinced that I was not psychiatrically unwell, yet being swayed increasingly to the point of view that I was somatising.

In the end it was easier to live with the symptoms rather than be ridiculed by those from whom I might seek advice. I learnt to accept the devastating effect that this malady was having on myself but most importantly on others. Constant pain, feeling permanently hung over, being unable to stand properly, and soaking erstwhile sleep partners, courtesy of night sweats, did not augur well for relationships.

For the full article go to:

Outcomes in Cases of Chronic Disseminated Lyme Disease for Three Infected Physicians, Described in Their Own Essays, Published in Peer Reviewed Journals

by Virginia T. Sherr, MD
Hartford Marriott Farmington, CT 24–-26 March 2000

In 1972, a Swedish pediatric neurologist, 46 year old Dr. Ingrid Gamstorp, noticed generalized fatigue and paresthesias predominately in her left hand. Through the ensuing years, she developed serious balance problems, loss of fine sensation in both hands, multiple muscle pains, deep aches, weight loss, and painful feet. Colleagues dismissed her distress as being the Swedish equivalent of a “tender-foot.”” She began on a endless cycle of trips to doctors, each examining her and referring her on to another for new tests while suggesting stress as the likely cause. She became depressed and contemplated suicide. Comments had been: “You should know how it is for women of your age. You should just live with it!”

Sixteen years later, a friend noticed her blue hands and suggested Lyme disease, confirmed it with blood tests, started her on IV penicillin, then oral penicillin, then oral tetracycline and finally IV cephalosporin. These 9 weeks total of antibiotics stopped the progress of her symptoms and gave her tremendous relief from the burden of being underdiagnosed, non-treated and trivialized.

However, on-going neurological damage due to long-term, untreated and then partially treated infection left her disabled enough during her last 9 years of work that she was forced to retire early.

She said that while the infection was important to her, it “meant a lot to Swedish child neurology, which lost its only professorship at my retirement. Never pat women on the shoulder and say, ‘You know, women of your age..’”

Her article is Lyme Borreliosis from a Patient’s View-point in Scand J Infect Dis Suppl 1991; 77: 15-16.

Dr. Gamstorp was a pediatric neurologist, the first physician to recognize and describe what is now called Hyperkalemic Periodic Paralysis, aka “Gamstorp’s Disease”.

In 1987, the editor of the Finnish Medical Journal, Dr. Ilkka Vartiovaara, visited Canada and photographed a bug that bit him. Three weeks later, he had pain in his feet, knees and wrists, bone-deep chilliness, and pronounced losses of sensation, hearing, balance, energy and eyesight. He had dermal hyperesthesia and other severe bodily pains. He wrote in Living with Lyme, Lancet 1995; 345 June 3, his description of the illness that followed his trip: “Sixteen months later I could barely drive a car, type or work” and had to listen to: “Too much stress, Dr. Vartiovaara?” A year later, he received a diagnosis of Lyme disease with the help of an American colleague and began aggressive ceftriaxone IV treatments.

Unfortunately, the IV’s respite from his worst symptoms was too brief and too late to save his occupation. And rounds of oral doxycycline caused improvement but likewise did not last. After repeated on/off attempts at such treatment, Dr. Vartiovaara was forced to retire at age 45. A year later, his Lyme PCR turned positive. Despite new bouts of antibiotics, he wrote, “I am 49 years old, an invalid with a totally unknown prognosis.” He deplored “the label of chronic complainer which is put on Lyme victims.”

Download Dr Vartiovaara’s full story here..

In Jan.’00, I (Dr Virginia Sherr) wrote in The Physician as a Patient, Prac Gastroent 24; 1:28, of the acute onset in myself of chilliness, prostration, rampant cardiac arrhythmias, hyperesthesia of the skin, hyperacusis, excruciating muscle pains, painful facial and back muscle spasms, weakness, itching, sweats, tinnitus, and waves of malaria-like symptoms without the fever. Having had a ring-like rash, I called Dr. Joseph Burrascano who told me that to save my health and occupation, I would need to get immediate testing and then antibiotics. From that day 3 years ago to this, 2-22-2000, I have required IV or oral antibiotics. Of the three tick-infected doctors, I was the oldest at the time of onset of acute symptoms.

As a result of having received continuous antibiotic treatment, I am the only one of the three who is not yet so Lyme-disabled as to be forced into unwanted, premature retirement.


Dr Martz Lyme misdiagnosed as ALS

His story is riveting. After a lifetime of good health and a successful career as a physician practicing internal medicine-hematology-oncology for 30 years, in 2003, Martz suddenly started experiencing strange symptoms. First deep fatigue, then profound muscle aches and body-wide pain. Soon he was too weak to get out of bed. As his condition rapidly deteriorated, his physicians gave him a devastating diagnosis: ALS (aka Lou Gehrig’s Disease). They said nothing could stem his physical decline and he would likely be dead within two years.

But events went in a different direction. As his health spiraled downward, Martz connected with a Lyme specialist who prescribed hard-hitting, long-term antibiotics. The gamble paid off. By the end of 2004, Martz was a new man. In fact, the doctor who had diagnosed him so definitively with ALS, now pronounced that condition completely gone.

More information at:

Dr. Harvey devised a lyme disease treatment plan to heal himself

“It was all pain, all brain fog,” he says. “I couldn’t think anymore. I had to quit my job. I went back to my house in San Antonio and figured that I had a fatal disease and nobody could figure out what it was.”

He says he recovered after giving himself massive doses of antibiotics.

Dr. Harvey believed he had chronic fatigue syndrome, a vaguely defined malady that many doctors didn’t believe was real. In 1999, he attended a medical conference on Lyme disease, which causes similar symptoms, although he says he was almost certain Lyme wasn’t his problem. At the conference, he learned of the use of oral antibiotics in treating Lyme disease and decided to treat himself with “high, high doses” of them to see whether they might help his condition, too.

“Little by little, I came out of the disease. Almost,” he says. He began taking antibiotics in even larger doses through a catheter and says he achieved complete recovery.

His wife, Pat, had experienced similar symptoms and had been “sick as a dog,” in bed for 12 years. She remains on antibiotics. “She’s mostly well and highly functional,” Dr. Harvey says.

More info follows at: ... l-himself/

Dr Ken Singleton – doctor & lyme sufferer writes book

Dr. Singleton is a Lyme-recovered physician who has been practicing Lyme medicine for over 10 years. He has a website & book called The Lyme Disease Solution (which is excellent by the way!) Looking at both traditional & supportive therapies, plus dietary changes needed to help with recovery, it’s a terrific resource for patients & doctors alike..

Dr Yost testifies at a hearing in Pennsylvania – it took him 5 years to get a diagnosis..

John Drulle, M.D. 1944-2003

If one could imagine a physician stepping out of a Norman Rockwell painting to spend all the quality time needed with you, with his attention focused totally on your symptoms, questions and fears, that physician would likely be the late John Drulle, M.D. Decades ago, when scholarly physicians were diligently discovering the Lyme bacteria and naming the disease, he was among the first handful of doctors on the frontlines of actually treating the condition. In the early days of Lyme disease, testing procedures and results were unreliable at best. That’s why John used the most sophisticated of devices available to diagnose and treat the condition – his ears. He would take all the time needed to hear a patient out, as there was a close relationship between close listening and appropriate diagnosis and treatment.

Because protocols were uncertain, he would never give a patient a medicine unless he tried it on himself first, because he himself was infected with Lyme as well as other tick-borne diseases.

To say his practice was patient-centered is an understatement – he would go so far as to pick up prescriptions and deliver them to a patient’s house when they were too sick to do so themselves. Even when he himself was battling chronic fatigue and pain, he kept a positive outlook and sense of humor. John Drulle was truly a blessing to all who knew him until he succumbed to Lyme disease and an untimely death in 2003.

John Drulle, M.D., was a pioneer in the fight against Lyme disease and other tick borne illnesses. He helped to initiate the New Jersey Governor’s Council on Lyme Disease. John worked toward educating the public about the need for prevention, treatment and research on tick-borne infections. He also worked toward educating the public about the special concerns regarding the effects of Lyme disease on pregnant women and the unborn.

He has a memorial fund to help continue the fight against lyme disease & has written some great articles including lyme in pregnancy, steroids (avoidance of) in lyme disease, seronegative lyme, persistence & pitfalls of testing. More at:

The Physician as a Patient: Lyme Disease, Ehrlichiosis, and Babesiosis — A Recounting of a Personal Experience with Tick-Borne Diseases

Virginia T. Sherr, M.D.
Abstract reprinted permission from Practical Gastroenterology, 6:352-356
January 2000

There has been both too much and too little written about Lyme and other tick-borne diseases. On the one hand (at least in the U.S.), they are seen by some as the source of a hundred unexplained ills; on the other hand, there is a dearth of published authentic narrative description, especially in regard to the complex and fascinating neurological and neuropsychological effects of borreliosis.

If physicians contract such diseases, experiencing the impact for themselves, while at the same time maintaining their medical and scientific knowledge and detachment, a unique “double” narrative can result. This is Dr. Sherr’s situation: chance made her a victim of borreliosis, but her will and energy and intelligence have made her an expert on it too, and both voices—the voices of the patient and of the physician-investigator—are conjoined in this vivid and important personal narrative.

—Dr. Oliver W. Sacks

I stared at the strange red ring forming perfectly on the skin of my left leg, noting the tiny, glistening black spot in the ring’s red center. What is this thing? I reviewed my risks calmly—it’s too small to be a spider or tick, I thought. I had never seen anything like it. Perhaps a mite. Not likely to be dangerous or lethal. I’ll watch it and see what it does. When I checked it again in a few hours, the tiny black speck was not there. Going about my business, I felt pleased with my scientific brio.

Fortunate genes and Health techniques learned as a psychiatrist had gifted me with a strong immune system. I had almost never had any antibiotics in my entire life. I stayed healthy. There was no idea then, in the mid-1980′s, of what was to come a decade later.

The painless rash circle likely was a spider bite, one physician said; that was the first time I worried a little. In my experience as a physician and growing up around biologists and entomologists, this was not what I expected from the bite of the few local spiders that humans have to fear. And as a long-time gardener in a wooded area near my Pennsylvania home, I co-existed with multiple varieties of arachnids, all of which fled from my approach.

More follows at: ... ons22.html

Dr Virgina Sherr

From Wellsphere forum.. ... ase/363450

Today’s featured contributor is Dr. Virginia Sherr, who maintains the site The Human Side of Lyme.

Dr. Sherr is a psychiatrist who has experienced Lyme disease first hand over many years, and shares valuable information and resources to get the word out about this ongoing problem. She is particularly concerned about the incidence of undiagnosed CNS involvement, and points out that despite underreporting, more than 20,000 cases are reported annually, but “neuroborreliosis is still actually considered rare by a majority of physicians, most of whom are spirochetally naïve.”

She would like psychiatrists in particular to be aware of the possibility of Lyme as a cause of psychiatric complaints — see her brochure on What Psychiatrists Should Know About Lyme Disease.

Her website is a great resource of articles for people interested in the various manifestations of Lyme. For example, here is an article written by Dr. Sherr on Bell’s Palsy of the Gut and Other GI Manifestations of Lyme and Associated Diseases.

Duke Doctor Beats the Odds and Survives to Help Others ... al-profile

Oncologist Neil Spector trained at top schools, cared for patients at leading medical centers and led a pharmaceutical industry team that developed breakthrough therapies for the treatment of breast cancer.

Still, he believes in his heart and in his soul that his greatest life lessons have come from his own experiences as a patient: a heart-transplant patient whose frustrating medical saga nearly took his life.

Dr. Spector, 54, received a new heart on July 20, 2009, after his own heart was permanently damaged by Lyme disease that had ravaged his body for years before finally being diagnosed in 1997…

..He was beyond physically fit, competing in marathons. He had no risk factors for heart disease, but quickly his body was beginning to betray him. Transient arthritis and transient cardiac arrhythmia came first, followed by a burning sensation in his heels. Then came the chest pains and rapid heart rates that made him a patient at every ER in South Florida. By his own admission, “It was weird and bizarre.”

Repeated blood tests came back inconclusive, but Neil Spector, the physician, began to suspect he might have Lyme disease. He had spent time running through the woods of the area surrounding Boston as well as on Cape Cod, and although he doesn’t remember being bitten by a tick, he must have been exposed.

He took a course of doxycycline—the antibiotic of choice for the treatment of Lyme disease—for a completely independent reason and his symptoms subsided, providing him with another clue that his hypothesis was correct. Yet, more blood tests were as nonspecific as all the others.

“My tests were interpreted at the top places that specialize in the diagnosis and treatment of Lyme disease, and we still had no confirmation that’s what it was,” he says. “I repeatedly described my symptoms and hypothesis, but the diagnosis was elusive because my numbers were not confirmatory by generally accepted medical criteria, or even by Centers for Disease Control criteria.”

Frustrated by the lack of a diagnosis, Dr. Spector was equally angered that it confirmed another suspicion about the changing profession that he had trained for and loved.

“Many doctors don’t have the time to actually listen to patients,” he says. “Instead they rely on tests and are locked into algorithms established by those who devise the standard tests. But patients are humans, and people don’t fit into nice, square boxes.”

More tests gave positive results that Dr. Spector’s heart had serious electrical problems, and he received a pacemaker/defibrillator as the standard of care in 1997.

By then he had lost 20 pounds, but he was still keeping a grueling pace caring for bone marrow transplant patients, even making house calls. It was work he loved because he felt he was making a difference, but he began to question how long he could continue. In addition, his area of research in academia had narrowed and he was enjoying it less. And on the personal side, the Spectors’ efforts to start a family had yielded multiple heartbreaking miscarriages.

A Living Nightmare

Although his heart was more resilient than any medical professional had believed—based on the numbers—that episode in June was the beginning of a steep slope to a heart transplant and the worst month in Dr. Spector’s life. The near-death experience in the hospital had taken its toll on his heart, which was already severely weakened. He began having 15 to 20 episodes of ventricular tachycardia a day.

“It was a living nightmare,” he remembers. “There was no telling when one of the episodes might kill me.”

On July 10, doctors tried to remove the pacemaker, and within minutes of going under general anesthesia, his blood pressure dropped to dangerous levels, and the procedure was immediately terminated. That was the last straw. Dr. Spector went into florid heart failure.

“I accumulated fluid in my abdomen so that I looked like I was six months pregnant,” he says. “I could not keep food down. I could not find a comfortable position to rest. My brain was not being adequately perfused with blood. I wasn’t able to think clearly at times.”

For the first time in the 12-year ordeal, he told Denise that he could no longer live like this.

“I had a great cardiac team at UNC, but they told me that my heart was barely pumping blood,” he says. “On Friday, July 17, I was told I had 72 hours to live. Without a transplant or a temporary mechanical pump, I would have been dead by Monday.

During a nine-hour surgery, Dr. Spector received a new heart. He distinctly remembers thinking there was a problem because of the feelings he was having internally, but he was assured the unusual sensations were the result of having a healthy heart as opposed to one working at only 10 percent.

Dr. Spector believes that the lessons he’s learned as a patient coupled with his knowledge as a physician will help him fulfill a lifelong mission: writing a book about his experiences.

The Spectors chronicled the heart transplant journey through a blog at There, Dr. Spector acknowledges both that he is thrilled a new heart was found in time and that his body and psyche have taken a beating from the required post-transplant meds.

“It’s a constant adjustment to find the dose that keeps my heart happy and doesn’t cause too much havoc on the rest of me,” he writes. “The recovery from heart transplant is a journey. As someone once said, ‘It is not a sprint to the finish, but instead it’s a marathon.’ I’m in it for the long haul regardless of the situation.”

— Story byElizabeth Swaringen, a freelance writer and breast cancer survivor based in Pittsboro.

Doctor’s Dilemma, a paper

Edward L. McNeil, M.B., B.S., M.D.

This paper was originally presented to the Second National Lyme Convention held in Gettysburg PA on Saturday, July 27 and Sunday, July 28, 2002. Dr. McNeil himself suffers from tick-borne diseases.

..When Lyme disease was first recognized in Connecticut, the majority of the victims were infected by a single germ subsequently called Borrelia Burgdorferi, after Dr. Burgdorfer who identified it.

Unfortunately, most of those who have been bitten by a disease-carrying tick can now be infected with more than one disease from a single bite. One is Ehrlichia, another is Borrelia burgdorferi, and Babesia which is a malarial cousin and gives similar symptoms to malaria. The three mentioned organisms are not the only ones that can infect from the same bite, as these organisms depend on the geographical area from which they came. These diseases are not only prevalent in the USA but are found in every European country, Scandinavia, the Balkans and as far away as Australia.

Ticks are great travelers. They can catch a ride on a plane or a bird. They can be carried from one country or continent to another, attaching themselves to humans or their luggage. The disease they carry can be transmitted by blood transfusions and from mother to fetus, an infected fetus more likely to abort and, if born, to be diseased and die at an early age.

The doctors’ dilemma is they have been told early treatment with a short course of an antibiotic, usually Doxycycline, will cure Lyme disease. This may appear to be so but such treatment will not guarantee a recurrence will not occur, months or years later, without a further tick bite. This is especially so if more than one pathogen was in the bite.

That is not the only dilemma faced by the doctors because many of the blood tests to indicate Lyme disease are unreliable. A patient with negative results can be told they do not have Lyme disease when they indeed do. Treatment is then denied and the patients sentenced to an advancement of their disease(s) to a chronic form with increasing disability and death. Sadly, it is not unusual for patients to see 10 to 15 different doctors before a diagnosis is made. This is applicable to both the USA and the UK.

Diagnosis has to be made by taking a complete history of symptoms and physical signs elicited by a thorough examination, especially of the nervous system. For treatment to ameliorate some of the disabling symptoms, a prolonged course of antibiotics is necessary. Such treatments have shown success when prescribed by physicians specializing in the treatment of the tick-borne diseases and who have personally treated more than 5000 cases. Those who consider prolonged courses of antibiotics are harmful do not seem to apply the same judgement to other infectious diseases, such as Tuberculosis or AIDS, or to the use of prolonged courses of antibiotics for young people with acne.

A lot of expensive research is being done regarding what happens at the cellular level in the tick-borne diseases, but until repeatable, accurate tests are available to identify which pathogens are infecting a particular patient, research to show the effectiveness of particular treatments, is futile. Until that time, doctors are justified in diagnosing the tick-borne diseases clinically and ermpirically, treating with long-term antibiotics, judging the response over months rather than days. Long term exhibition of antibiotics is less likely to cause resistance to the antibiotics than short courses.

After penicillin with the advent of the antibiotic age, many considered we had conquered infectious diseases for good. How wrong they were. Emerging and changing infectious diseases now present an awesome challenge around the planet. In the fight against the harmful germs, we have not begun to win and great losses are to be expected. We may consider humans smart but the microbes have shown themselves to be even smarter in this present age.

Dr. Ted McNeil is an acadamician in the International Academy of Aviation and Space Medicine. He was a pioneer in International Medical Air Rescue and wrote the first text book on the subject. He also worked with NASA and designed the equipment for performing surgery in a weightless environment. Later, Dr McNeil worked as an emergency room physician in Connecticut. He is interested in all changing and emerging infectious diseases and gave a presentation on the subject to the Acadamy in Paris in September, 2001, in which he discussed tick-borne diseases among others.

The sad details of Dr Bleiweiss, physician & lyme patient who lost his life to Lyme.. ... weiss.html

He authored the excellent paper ‘When to Suspect Lyme Disease‘

Dr. Edward Stanley Arnold passed away in 2006

He attended Vanderbilt University, becoming a psychiatrist after eight years of studies. In June 2000, he contracted Lyme Disease. He hasn’t practiced medicine since 2000. His last treatment was at Vanderbilt University. ... rnold.html


Dr. Jane Colfax passed away in 2005

After serving as an Army nurse during World War II, she attended Women’s Medical College of Pennsylvania and became an OB-GYN when she graduated in 1955. Albert Pineda, a doctor who worked with Colfax at St. Joseph’s, said she was the first female OB-GYN at the hospital.

During the late 1980s, Colfax contracted Lyme disease but it went undiagnosed for years, DeNike said.

“It was too late to cure it. With her it got worse and worse until she had to give up being a physician because she couldn’t use her hands at all,” he said.

Backer recalled Colfax’s last day at the office in 1992.

“She and I were the last to leave. We turned the key together. I kept telling myself I’m not going to cry, but sure enough I did,” she said.

Colfax and her husband retired to North Carolina, where her health continued to decline.

“She couldn’t walk very well. She was bedridden for practically 12 years until she passed away,” DeNike said. ... olfax.html

Viestit: 3151
Liittynyt: Ke Tammi 21, 2009 14:16

Re: Borrelioosiin sairastuneita lääkäreitä eri maista

Viesti Kirjoittaja soijuv » Ma Marras 04, 2013 10:18 ... e%E2%80%9D

"Viime toukokuussa borrelioosi vihdoin diagnosoitiin. Se oli helpotus."

Hannele Parviainen: ”Vaikeudet lähensivät perhettämme”

Teksti: Riitta Castrén
Kuvat: Olli Häkämies

Lääkäripariskunnan kolmesta lapsesta kaksi on erityislapsia. Arki rullasi lasten ehdoilla siihen asti, kunnes perheen äiti sairastui.

Hannele Parviainen, 49, pahoittelee kaaosta, joka kotona vallitsee. Kaikesta näkee, että valkoisessa tiilitalossa on eletty viime kuukaudet äidin sairauden ehdoilla.

”Syksyllä 2011 palattuani mustikkametsästä käteni osui jalassa olevaan punkkiin, jonka sain raapaistuksi vain osittain irti. Viikon päästä tuli flunssan oireita, jotka menivät nopeasti ohi. Koska pistokohdan ympärille ei ilmestynyt rengasta, unohdin koko asian.
Vain lääkäri voi olla oman terveytensä suhteen näin huoleton”, Hannele Parviainen hymähtää.

Lokakuussa alkoi kova päänsärky, tuli huimausta, puheen puuroutumista ja kaksoiskuvia. Portaissa kulkeminen kävi vaaralliseksi. Marraskuussa Hannele jäi sairauslomalle.
”Kun oireet pahenivat äkillisesti, jouduin lähtemään päivystyspoliklinikalle. Viivakävelykoetta tehtäessä horjahdin niin selvästi, että neurologikin yllättyi. Hän moitti, että olisin voinut tulla aiemmin. Silloin huolestuin itsekin.”

Kokeneena yleislääkärinä Hannele Parviainen tajusi, että diagnoosi voisi olla mikä tahansa. Aivokasvain, MS-tauti, ALS – tai borrelioosi. Kahden erityislapsen äitinä hän ehti jo miettiä, miten perheelle kävisi, jos hänelle kävisi huonosti.
Sairastuminen tuntui epäoikeudenmukaiselta. Perheenisä, kirurgi ja ortopedi Mikko Parviainen oli juuri saanut valmiiksi väitöskirjansa. Nyt kahdeksanvuotias
Joonas, joka on Down-lapsi, oli aloittanut ensimmäisen luokkansa.
Perheeseen kuuluvat myös kymmenvuotiaat kaksoset: Markus on Asperger-lapsi ja Pauliinalla on ollut astma viisivuotiaasta asti. Kun kotona on erityistä tukea tarvitsevia lapsia, vanhemmilta vaaditaan tavallista enemmän voimavaroja. Niitä ei Hannelella nyt ollut.

Diagnoosi oli helpotus

Koska diagnoosia ei ensin saatu, Hannele Parviainen sai oireisiinsa hermosärky- ja tulehduskipulääkkeitä. Tutkimuksia tehtiin lisää, ja sairauslomaa pidennettiin.
”Kova päänsärky jatkui helmikuulle asti. Sain epileptisiä kohtauksia ja minua vaivasivat muistihäiriöt. Aloin unohdella ihmisten ja esineiden nimiä. Tasapainohäiriöni pahenivat lopulta niin, että jouduin hankkimaan rollaattorin. Aika ennen sairauden selviämistä oli ahdistavaa. Ihminen ei kestä epävarmuutta loputtomiin”, Hannele sanoo.

Viime toukokuussa borrelioosi vihdoin diagnosoitiin. Se oli helpotus.

”Nyt borrelioosi on kurissa ja olen voinut lopettaa antibiootin käytön. Viikkoa ennen joulua minulta löytyi kuitenkin selkärankareuma. Se on ollut minulla jo vuosia, mutta sen löysi reumalääkäri, joka hoitaa borrelioosiani yhdessä infektiolääkärin kanssa. Hän kuvasi lantioni, ja siellä ne reumamuutokset näkyivät. Nyt reumalääkkeet ovat alkaneet vaikuttaa, ja voin jo paremmin. Kykenen konttaamaan lattiaa pestessänikin ensimmäistä kertaa kahdeksaan vuoteen.”

Hannele sanoo harjoittelevansa voimien keräämistä. Myös lapset ovat iloisia äidissä tapahtuneesta muutoksesta.
”Täytyy kuitenkin myöntää, että minulla on ikävä lääkärintyötäni”, Hannele sanoo.
”Mieheni on säilyttänyt rauhallisuutensa koko ajan. Sairastumiseni merkitsi hänelle ylimääräistä työtaakkaa. Mikon on työskenneltävä yksityislääkärinä välillä myös viikonloppuisin. Myös suuri osa lastenhoidosta on toistaiseksi hänen harteillaan.”

Raskas kesä

Ikään kuin sairastumisessa ei olisi ollut jo tarpeeksi, Hannele menetti viime kesänä kahden päivän sisällä ensin veljensä ja sitten isänsä. Molemmat kuolivat äkillisesti lyhyeen sairauteen.
”Isä ja veli makasivat Tampereen yliopistollisessa sairaalassa samaan aikaan, kun minä sairastin kotona. Tunnen vieläkin syyllisyyttä siitä, etten päässyt heitä ajoissa katsomaan”, Hannele pohtii.
”Viime kesänä kyselin ahdistuneena, mikä tarkoitus tällä kaikella on. Voiko meidän perheellemme tapahtua enää enempää pahaa?”
Tampereen yliopistollinen sairaala oli tuttu paikka Hannelelle. Hän oli ollut siellä töissä monta vuotta ennen muuttoa pääkaupunkiseudulle. Paluu entiselle työpaikalle omaisen roolissa tuntui raskaalta.
”Kuljin samoista ovista kuin työvuosinani, soitin samoja summereita. Silti kaikki oli toisin. Tunsin itseni avuttomaksi, kun menin jättämään jäähyväisiä
läheisilleni sairaalan kappeliin. Molemmat, minulle niin rakkaat läheiset olivat menehtyneet ja makasivat siellä vierekkäin.”
”Vaikka sairaus oli vienyt minulta osittain myös kyvyn soittaa, tapailin harmonilla Maan korvessa kulkevi lapsosen tie -säveliä. Se tuntui tärkeältä, sillä sekä isä että veli olivat sairauteni aikana kannustaneet minua opettelemaan nuotit uudelleen. Minusta tuntui, että he kuulivat soittoni.”
”Kotona lapset osoittivat kukin omalla tavallaan myötätuntoa. Kun kerroin, että nyt äidin isästäkin on tullut tähti taivaalle, he nyökkäsivät totisina. Kaksi perättäistä surupäivää olivat myös lapsille raskaita. Sen olen päättänyt, että pyhäinpäivänä ei meidän perheessä vietetä halloween-karnevaalia vaan vainajien muistopäivää.”

Usko selviämiseen

Hannele tutustui tulevaan mieheensä vuonna 1996. Mikko Parviainen oli erikoistumassa kirurgiaan ja sittemmin ortopediaan, ja Hannele oli samalla osastolla lääkäriharjoittelijana. Häitä vietettiin idyllisellä Symin saarella Kreikassa. Siitä on nyt kaksitoista vuotta.

”Vielä tuntia ennen vihkimistä olin meressä uimassa yhdessä häävieraiden kanssa. Hiukset saivat kuivua tuulessa, ja ne koristeltiin kukkasin. Hääjuhla oli sikäläiseen tapaan rento”, Hannele kertoo hymyillen.
Kun hän vuoden kuluttua alkoi odottaa kaksosia, onni oli täydellinen. Raskaus eteni normaalisti, mutta kaksoset syntyivät etuajassa keisarileikkauksella.
”Markus oli 400 grammaa kevyempi kuin Pauliina. Hän oli vähän jäykkä ja söi hätäisesti. Molemmat saivat hyvät pisteet. Kasvukin eteni tasaisesti. Vajaan vuoden ikäisenä katsekontaktin saaminen poikaan oli vaikeaa. Kun Markus leikki palikoilla, hän otti käteensä vain punaisia palikoita. Hänellä oli ilmeisesti jo tuolloin näkövamma, jota ei huomattu.”
”Neuvolan yksivuotistarkastuksessa Markuksen kehitys oli normien rajoissa, vain kävelyssä havaittiin hankaluutta. Poika käveli varovasti varpaillaan kuin tunnustellen lattiaa. Myöhemmin alkoivat jalkakivut, ja kävimme lasten reumatologilla, joka määräsi lääkkeet. Näköongelmaan emme saaneet ratkaisua.”
Kahden vuoden kuluttua syntyi Joonas.
”Viitteitä sikiön kehityshäiriöstä ei havaittu raskauden aikaina. Ikäni puolesta en päässyt lapsivesipunktioon, olin silloisten suositusten mukaan muutamaa viikkoa liian nuori. Vaikka lääkärinä tiesin iän tuomat riskit, meillä oli Mikon kanssa tunne, että pärjäämme, tapahtui mitä tahansa.”
Hannele Parviainen on miettinyt paljon raskauden aikaisten seulontojen eettisyyttä.
”Sikiöt, joilla todetaan Downin oireyhtymä, on helpointa seuloa. Kromosomipoikkeamat näkyvät testeissä parhaiten. Siksi niitä seulotaan eniten. Moni lääkäri suorastaan kehottaa keskeyttämään Down-raskauden. Se askarruttaa minua, vaikka ymmärränkin, että sikiöseulonta on vanhempien oma valinta.”
”Down-lapset ovat aikuisina kehitysvamma-asteeltaan keskitasoa. Jos yhteiskunnalla olisi varaa palkata heille avustajia, he voisivat elää itsenäisesti ja tehdä vaikkapa tuetusti työtä. Minusta on hienoa, että muutamat valistuneet yritykset ovat jo ottaneet palkkalistoilleen työssä pärjääviä Down-aikuisia”, Hannele iloitsee.

Elämä tuo mitä tuo

”Kun Markus oli esikouluiässä, neurologi kiinnitti huomiota pojan motorisiin häiriöihin. Lopulta saimme vastauksen moneen mieltä vaivanneeseen kysymykseen. Markuksella todettiin Aspergerin oireyhtymä. Hiljattain selvisi, että Markuksen näkövamma saattaa olla jopa 80 prosentin luokkaa”, Hannele Parviainen kertoo.
Samana päivänä, kun Markus sai erikoisvahvisteiset silmälasit, Joonas joutui vaikeaan vatsaleikkaukseen, jossa korjattiin synnynnäinen rakennevika.
”Leikkaus meni hyvin, ja saatoimme huokaista helpotuksesta. Meillä on mieheni kanssa realistinen tapa ajatella: elämä tuo tullessaan, mitä tuo”, Hannele toteaa.

On turha pelätä etukäteen.

”Totta kai olemme pohtineet, millaista elämämme olisi, jos Joonas ja Markus olisivat terveitä. Varmasti kevyempää.”
”Aspergerin oireyhtymä on pojilla yleisempi kuin tytöillä. Tällaisilla lapsilla on usein sosiaalisia vaikeuksia, koska he saattavat unohtua omaan maailmaansa pitkäksi aikaa. Kuka jaksaa kuunnella samaa tarinaa hyttysestä tuntitolkulla?” Hannele kysyy ja naurahtaa.
Hyttyset voivat vaihtua dinosauruksiin, pöllöihin tai huuhkajiin. Asperger-lapsen uppoutuminen aiheeseensa on aina sataprosenttista.
”Viimeksi kiinnostuksen kohteena oli lukki, jonka Markus huomasi eteisen ovenpielessä. Lukkia piti ihastella mennen tullen. Oli mietittävä, onko se tyttö vai poika. Oli turha yrittää hoputtaa poikaa kouluun.”
”Toisaalta, kun näin, miten poika katseli hyönteistä joka aamu kuin olisi nähnyt sen ensimmäisen kerran, liikutuin. Juuri noinhan aikuistenkin pitäisi katsoa maailmaa.”
”Markus on osoittautunut testeissä erittäin älykkääksi ja voi myöhemmin valita vaikka akateemisen uran.”
Joonaksen tulevaisuus askarruttaa enemmän.
”Downin oireyhtymään liittyy aina jonkinasteinen älyllinen kehitysvammaisuus. Monilla on erilaisia terveysongelmia ja rakennepoikkeamia, esimerkiksi sydänsairauksia. Puhumaan oppiminen on Down-lapsille vaikeampaa kuin muille.”
”Mieheni äidinkieli on kreikka, joten Joonas puhuu auttavasti kreikkaa ja suomea. Hän käyttää välillä jopa oikeita sijamuotoja. Lukemaan Joonas oppi jo ensimmäisellä luokalla, mikä on harvinaista Down-lapselle. Ja onhan hänellä aina lisäapuna tukiviittomat”, Hannele muistuttaa.

Arjen apuvälineitä

Parviaiset ovat hankkineet kotiin apuvälineitä, jotka helpottavat arkea.
Jotta Markus näkisi lukea, hän tarvitsee tavallisen lampun ja päivänvalolampun, suurennuslasin ja lukukiven, joka on hiottu niin, että sen alla olevat kirjaimet
näkyvät selvästi. Markuksella on myös kahdenlaiset silmälasit. Kun hänen silmänsä väsyvät, hän kuuntelee äänikirjoja.
Joonaksella on puhelaite, kommunikaatiokansio, silmälasit, suihkutuoli sekä wc-kaide. Pauliina tarvitsee vain astmapiipun ja lääkkeet.
Hannele naurahtaa, että hän joutuu ainakin toistaiseksi jakamaan suihkutuolin Joonaksen kanssa. Rollaattori on sentään ihan oma.

Parviaisen perheessä huumori on osa selviytymisstrategiaa. Koska arjen kuviot ovat haasteellisia, Parviaiset ovat kehittäneet omia selviytymiskeinoja.
”Opetamme lapsille, ettei kukaan saa vahvistaa negatiivista ilmapiiriä, koska se voi jäädä helposti päälle. Haemme koko ajan tasapainoa lasten erilaisuuden välillä.”
”Joonas ja Markus tarvitsevat käytännön toimissaan kaiken avun. On pidettävä huoli poikien puhtaudesta, pukeutumisesta ja syömisestä. Perushoitoa on paljon, ja yöhoitoakin jonkin verran”, Hannele sanoo.
Samassa neljäsluokkalainen Pauliina tulee koulusta.
”On kiva, että äiti on kotona. Saa parempaa ruokaa”, Pauliina virnistää.
Hannele näyttää pöydällä olevaa korurasiaa, jonka he ovat yhdessä Pauliinan kanssa askarrelleet.
”On tärkeää antaa huomiota myös terveelle lapselle. Meillä on Pauliinan kanssa yhteinen askarteluharrastus.”
”Isä ja lapset voivat lähteä yhdessä tutkimaan vaikkapa lepakoita, kuten he tekivät viime kesänä. Kun he myöhään yöllä palasivat kotiin, oli sykähdyttävää nähdä lasten innostuksesta sädehtivät silmät”, Hannele kertoo.
Aina eivät aktiivistenkaan vanhempien eväät riitä.

”Sairastumiseni jälkeen olen pohtinut, että perheterapia voisi olla lapsille tarpeen. Markus saattaa välillä pelätä Joonasta, joka on fyysisesti voimakas. Kun Pauliina näkee konfliktitilanteen, hän yrittää silotella sitä. Ja kun minulla on kipuja, koko perhe suree”, Hannele kertoo.
Työssään neuvolalääkärinä Hannele Parviainen kohtasi enimmäkseen terveitä lapsia. Vaikka ammattilainen onkin, omia tunteita ei voinut aina pitää piilossa.
”Kun vastaanotolleni tuli äiti viisivuotiaan lapsensa kanssa, saatoin hetken miettiä: minulla on kotona seitsemänvuotias lapsi, joka on kaukana tämän lapsen kehitystasosta. Silloin mielessä saattoi häivähtää suru.”
Viime aikoina Hannele kertoo miettineensä paljon terveen ja sairaan rajaa.
”Se on kuin veteen piirretty viiva. Jokaisella on jokin vahvuus, olipa hän terve tai sairas”, Hannele Parviainen miettii.
Mikko ja Hannele Parviainen tutustuivat toisiinsa ammattinsa kautta. Hannelen kaulatuki johtuu niskavammasta, joka johti lopulta selkärankareuman jäljille.

Mikko ja Hannele Parviainen tutustuivat toisiinsa ammattinsa kautta. Hannelen kaulatuki johtuu niskavammasta, joka johti lopulta selkärankareuman jäljille.

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