A Letter to Julia

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Chapter 1

Christmas 2008

On October 6, 2008, in desperation, a young wife and mother called out for help to one of the largest pharmaceuticals in the world.That woman was Mary, my daughter.The corporation was Boehringer Ingelheim.In one of her more lucid moments Mary had visited their Web site and gathered hope from what she read there.Hope from the fact that they valued and cared about each and every patient who were prescribed their medications.She was close to giving up, and in her darkest moments contemplated ending her own life.That glimmer of hope saved her that day.Somehow she reached a night watchman on duty in Germany.Was an angel helping her?We don’t know, but by this time she was hardly capable of taking care of herself, let alone call to Germany on her own.Somehow he directed her to the right place to e-mail for help.Somehow she was able to e-mail.That watchman was certainly an angel.

Several days later Mary burst into our house, full of hope for the first time in years.She had just been called from the offices of Boehringer Ingelheim in Connecticut.Mary was in tears describing how nice and understanding their representative Michelle was.Finally, someone could help us.All we had to do was have the family write letters to their legal department in Connecticut describing how their drug Mirapex had affected all our lives.Mary had been on the drug Mirapex for almost three years and we were used to such bouts of grandeur.Mary had schemes to make millions on various Web sites, millions from buying overlooked valuable items at Goodwill, free money from grants that were there for the taking.My wife, Helen, and I had supported her in a scheme to start her own business as a florist.We set up a special room in our basement and dragged home a used cooler to store the flowers in. We essentially paid her salary by buying all the flowers for resale.The business came to naught.Understandably, Helen and I and the rest of our family were skeptical of this new “scheme”.

Mary was so happy to have gotten that call that Helen and I were afraid that if we didn’t respond in a positive way to her excitement we would lose her for good.Privately, we were told by a lawyer friend that Boehringer Ingelheim was most certainly trolling for information they could use against us if we tried to ask for compensation.He advised that the last thing we should do was send the letters.As always, we acted to keep Mary with us.As long as she was alive, there was hope.Helen and I convinced the rest of our family to send the letters.Most of her siblings were suffering from what they called “empathy fatigue” but they agreed to help us against their better judgment.I was also skeptical, but I’ve always believed in the basic goodness of mankind, so I had hope.Our family has always been close and we pull together when we have to.I’m reproducing those letters here exactly as they were sent as I can’t think of a better way to introduce Mary’s story to you.

My Letter

“Mary Magalhaes is my daughter who is 36 years old this year.When she was 15 years old she was diagnosed with Lupus.In spite of her illness she was able to complete college, get married and bare a daughter. After her daughter was born she was able to care for her daughter and also work part time for Microsoft as a paralegal.Eventually she resigned from her position at Microsoft and started her own business.Her first year in business was very successful as she earned over $100,000 and had several employees.During this time she hired an architect to design a remodel of the small cabin on a lake she lived in with her daughter and husband.She also hired several workers to excavate for the basement addition.At this time everything seemed to be working out for her and her family.

Two and one half years ago she was prescribed Mirapex.She did have more energy, but I noticed an immediate change in her behavior.Before Mirapex and during family gatherings she would often have to spend time sitting or lying down.However, she would still engage in activities with everyone else (she has two sisters and a brother) and always sat down to eat with us.But after Mirapex she would spend her time away from the family sewing, and would rarely take time to even sit down with us to eat dinner. She also lost an excessive amount of weight to the point of looking gaunt.

Mary would stay up all night sewing, but would never finish any one project.Often she would go out of the house with dresses pinned together and her underclothes sticking out. Mary apparently had more energy to do things, but that energy was not directed towards the practical.

I didn’t know it at the time, but she was neglecting her business to sew.It was only several months after she started on Mirapex that she lost her business from not doing her legal work.By this time I had completely taken over the building of her house and the funding of it also.The loss of her business left me in a bad position as her cabin was left jacked up eight feet on temporary supports and I felt I had to get safer support for her house by completing the basement addition.

Before Mirapex Mary was a very attentive mother, but after starting on Mirapex she neglected her daughter.Mary wouldn’t comb her hair or bathe her.Many times her daughter would be sent off to school dressed in mismatched and ragged clothes.My wife and I tried to help her out with her daughter, but we didn’t know the extent of her financial problems.

As we eventually found out, her financial problems were enormous.Mary had stopped paying her bills including her mortgage.She simply didn’t open her mail, but spent all her time sewing. By the time I found out the extent of her financial neglect she was deep in debt.The only solution was for her family to declare bankruptcy last January.My wife spent months going through all her unopened mail trying to sort out what she owed.

My wife and I paid a substantial sum to bring her house payments up to date, pay most of her outstanding bills, and to keep the electricity and heat going.To do this my wife and I increased the mortgage on our house by $50,000.Since the basement addition on her house needed to be completed to keep her house livable, my wife and I increased the mortgage on our house a second time by $300,000 with some of this additional money going to pay the substantial bankruptcy fees.

We tried to get my daughter to quit taking Mirapex, but the Mirapex had changed her to the extent that she couldn’t realize how it had changed her behavior, and she was no longer capable of managing her own health and making decisions.I was extremely worried as she was only getting a few hours sleep at night and I was afraid she would eventually become seriously ill.

We finally persuaded her to gradually quit taking Mirapex this last month.Her daughter was also staying up at night when she sewed, sometimes not getting to bed before three in the morning, and this was showing up in her daughter’s school performance.That seemed to convince her to stop the drug.As Mary came off of Mirapex she began to realize the extent of her problem and how far in debt she had gotten her family and her parents.This realization made her alternately mad and depressed that she felt she had literally lost over two years of her life.It was during this gradual tapering off of Mirapex that additional tragedy struck and my worry that Mary’s mind and body would eventually give out from lack of sleep came true.

My wife and I celebrated out 40th wedding anniversary the weekend of September 13th and 14th.We had a party on Saturday night with dancing and planned a more formal gathering on Sunday afternoon.On Sunday morning we received a frantic call from her husband that she was having a violent seizure.We arrived at her house just as the paramedics got there.It was very traumatic for us as she was crying and thrashing in her bed mumbling incoherently.After three days in Auburn General Hospital, many tests and several additional seizures later the doctors attributed the seizures most likely to anxiety and her body readjusting to the decrease of Mirapex after two years on the drug.Mary’s mind and body simply gave out from the stress of lack of sleep and the stress of realizing what had happened to her.Mary and her daughter are now living with us while she is recuperating.

I don’t know when my daughter will be able to start work again.Now in the last week of tapering off of Mirapex she is able to think clearly, but she is still very fragile physically and mentally.

The additional stress of paying Mary’s bills and saving her house will soon force my wife and me into bankruptcy.”

Sincerely, John Locatelli

Her Brother’s Letter

“My name is Adam Locatelli, Mary Magalhaes is my older sister and I live just four houses down from her on the same street.I work from home and have been around pretty consistently over the past three years.This allowed me to be very much a part of my sister’s life and unfortunately, also let me watch her decline in health after she was put on Mirapex.My sister had a great job working as an independent contractor doing legal work for both Microsoft and Accenture.Her business was so successful that I was able to work as an independent contractor myself working under her and helping with the overflow of legal contracts.The first thing to be lost to the medication as her mental health started to decline was her job.I noticed something was wrong when my workload suddenly dropped off to nothing and then we lost our contract work for both companies.It turns out my sister had just stopped working all together but had not told anyone.

This was when I started to notice that her whole personality had started to change.She was no longer the sister I had known for so long, but was a different person.I saw her life get consumed little by little and saw all the hurt it was causing to all of us around her.She stopped talking to people like she used to, and started filling her time with constant projects that she could never put down.She would stay up the entire night sewing random dresses and clothes, and there seemed to be no way to get her to stop.I saw this change impact her daughter Julia in many bad ways.My sister had lost the ability to be a mother, and even to be a wife.Nothing was done around the house, she never cooked anything, she never cleaned up, she never helped with homework, and she just wasn’t all there.Luckily with us so close down the street, we were able to feed and dress Julia and make sure that she got off to school alright.There were many days I can remember having to pick Julia up at the bus or get her after school simply because my sister could not remember to pick her up.

Over the next couple years things only got worse.She was not eating hardly anything and started to get very thin.She was always wearing only about half of a dress that she would be in the process of sewing.She never had a complete outfit on like she would have worn before.She was always tired and looked much worn out, a result of not sleeping or eating enough.It seemed like we couldn’t even trust her to go out by herself anymore, and most of the time that was true.She would impulsively buy tons of plants, things off the internet, and constantly be buying stuff at goodwill that she had no where to put in her small house.Stuff piled up everywhere, in her house, in her car, and she really seemed like a wreck.

I also noticed a very scary change in her demeanor.She had become very depressed and would talk about suicide at times and it would really scare me.I can remember a day when it was just me home and I had to basically stop her from drowning herself in the lake.I was witness to a lot of unpleasant times and situations, and I never want to have to constantly worry about her again like that.In addition to the suicidal tendencies, she had also become distant and just didn’t have that spark in her eyes that she used to.She was so unlike herself that I was wondering if that person I knew was ever going to come back.

Financially she was doing really bad but was good at hiding it.I only found out about this when I learned that my parents were going to have to bail her out with a loan they took out on their house.She had over $200,000 in debt that had accrued while she could not work or even pay her bills.This ended up putting my parents in a very bad financial situation as well and I witnessed this start to tear my family apart.She was going to lose her house and ended up having to declare bankruptcy to avoid that.As it sits now and from what I understand, there is still a possibility that she will lose her house, and in turn we could lose ours as well.These problems have put a tremendous strain on everyone in the family, caused a lot of stress, and even depression problems with a lot of us, me included.

Recently, she was finally taken slowly off of the Mirapex.It didn’t take long until I started to see glimpses of my sister coming back again.Even more crazy, was watching her get her mind back and seeing her realize everything she had done in the past few years.She is now completely off the pills and I can say that she is back to the person that I had always known growing up.It has meant everything to me to get my sister back, but there is no way to get back all the time and money that was lost.She lost almost three complete years of her life and we lost out on those three years of her life as well.Nothing can bring them back.I am just thankful that my sister is still here with us, and still here for her husband and daughter.I know we are lucky that these problems with the medication were discovered.If they had not, I am certain that she would not be here today.Thank you for your time.”

Sincerely, Adam Locatelli

Her Mother’s Letter

“My name is Helen Locatelli and my daughter’s name is Mary Magalhaes.It’s hard to put into words the effect that Mirapex has had on our family and especially Mary.She went from being a happy, competent, reliable person to a distressed, dependent, manic one.At times, it was almost more than I could bear.

She because extremely compulsive to the point that she neglected even the most normal things in life like eating, sleeping and keeping herself and her environment clean.She went from being a loving, caring mom to one who was bothered by the nuisance of having a daughter to care for.I had to step in and take over the responsibility of getting Julia up for school, dressing her, feeding her, bathing her, helping her with her homework and keeping her oblivious as to what was happening to her mom.These were very formative years in Julia’s life and she missed out greatly on her mom’s presence of mind to interact with her.

I recall standing at the bus stop many times with Julia thinking, “why can’t Mary just be normal like these other mothers?”I so badly wanted her to just be able to get Julia up in the morning, feed her, dress her and walk to the bus with her.I didn’t think I was asking for too much!It wasn’t because I resented doing those things at all.It was only because I wanted Mary to be living a normal life.

Before Mary started taking Mirapex she ran a very profitable business.She not only employed herself but also was able to pay me, her two sisters and brother to work for her.We were all dependent upon the income we received from her.Bit by bit our work started slowing down.We soon realized that it was because Mary was neglecting her work to do things like make clothes out of curtains, wander aimlessly around stores, paint anything in sight, search Craig’s List for people or animals that needed help, etc. that kept her from her work.Eventually she lost her job and with that, ours were lost as well.

It got to the point where I was afraid to have Mary out of my sight.We conveniently live down the street from her so this helped immensely when it came to watching out for Julia or keeping tabs on Mary.We knew that Mary was suicidal because she was extremely depressed and at times definitely lost her will to live.From time to time she would take off in her car and I truly would fear for her life.She would often get confused and forget where she was going or how to get back home.

On a recent occasion she took off with Julia in the car.She had seen an ad on Craig’s list for a house 80 miles away that was being torn down.She took a crow bar with her and had every intention of driving to that house to pry out windows she thought she could use for a greenhouse.When I tried to call her on the phone she wouldn’t answer.Finally her seven year old daughter picked up the phone.I had to keep her on the phone as if I were a 911 operator.I asked Julia to describe where she was by reading the names on street signs or buildings near her.Mary had broken down emotionally and was unhappy with Julia for being on the phone with me.This was the first time ever that I’d experienced Mary not wanting to talk with me as we always had been very close.I spent the next couple of hours trying to track them down and eventually found them about twenty miles from home.Mary and Julia had not eaten anything for quite some time and there would’ve been no way for Mary to continue to drive anywhere.I managed to coax her into my car and then I took the two of them to a restaurant to get them some food.Another family member came to pick up her car.

I used to write in a journal daily.I went back over my journal for the year 2006 and began to excerpt out things I’d written regarding Mary and the effects that Mirapex were having on her.It was mind boggling to realize that this situation had been going on for almost three years. It made me feel sick to my stomach to re-visit many of the horrible experiences I’d been through with Mary over that time period.

Her brother, Adam, was very much affected by this entire situation.He became very depressed and suicidal as a result of worrying about his sister.He prevented her from drowning herself at one point.He feared being left alone with her.His moods were directly affected by how she was doing and I knew that mine were as well.I never became suicidal but I certainly felt like giving up many times over.I saw no end in sight and no hope for recovery for any of us.

She didn’t want any of us, including her husband, to know that she was not paying any of the bills.Because she had been so competent before, all of us assumed that things were running along as normal.It came as quite a shock to us when we realized that she hadn’t been paying her mortgage or other bills and consequently they were going to foreclose on her house.She ended up having huge credit card bills that were a result of compounded interest and late fees rather than any purchases.

In an effort to bail her out and try to save her house, my husband and I re-mortgaged our house to the point where we are not able to hold onto it.I have been desperately trying to hold both of our households together on very little money.My husband had to retire recently and that has cut our income down substantially.

At our urging and as a result of seeing the devastation in Mary’s life as a result of taking Mirapex, Mary started to get weaned off the drug.This was a long time coming because earlier attempts at talking to her about the possibility of getting off it were met with anger and accusations that we didn’t want her to feel good anymore.

Things came to a head a couple of weeks ago.I think Mary’s body had finally decided that enough was enough.She started having a “seizure” where her body shook uncontrollably and she couldn’t speak clear words.911 was called and she was rushed to the hospital.After spending several days there and having many tests, the doctor finally concluded that the seizure, as well as the subsequent ones she had in the hospital, were a result of anxiety from coming off the Mirapex drug.Even though she was coming off of it slowly, her body had been so used to having that drug in her that she reacted badly.This was a very scary time for us.I really thought we might just lose her completely.

I’m happy to say that life is finally returning to normal now that she is completely off Mirapex.The sad part is that the devastation it caused and the years it took from her and us can never be reclaimed.It has left its nasty mark on us financially and emotionally.Mary looks at friends and relatives now as if she hasn’t seen them in almost three years.She can’t believe she’s 36 years old.She gave her daughter a bath for the first time in several years yesterday and was surprised to learn that Julia knew how to wash her own hair.She was thrilled that she has a daughter and can be a mom to her.

Though I am also thrilled that our Mary is back, there’s a part of me that aches inside.I’m trying to focus on the future and not think of the past three years that have been robbed from me.I wonder how many long-lasting effects this situation will have on all of us and it scares me.”

Sincerely, Helen Locatelli

Her Sister’s Amy’s Letter

“I am writing on behalf of my sister, Mary Magalhaes, who contacted you concerning her experience with your pharmaceutical, Mirapex.I was told it would help you see a clear picture of how the medication affected my sister’s life if family members wrote of their observations.

I feel that the family’s experience with Mirapex was love/hate:Mary loved it and we hated it.Mary had spent much of her life in pain due to Lupus.After starting Mirapex in early 2006 she was in seventh heaven.She said that she was finally waking up rested and without pain, which was good news to all of us.However, it became apparent over time that not only was Mary more energetic and awake, but that it was to an abnormal level.

Whereas Mary was always an active participant in family gatherings, she was now preoccupied with other things, particularly sewing.If the rest of us were watching a movie, she would say she would come in a few minutes, but would never show up, having spent all that time searching on–line for fabric.She would frequently stay up all night sewing, even to the point of sewing what she was wearing. She seemed to have no capacity to self-regulate her activity.She did not seem “present” with other people, distracted by her own thoughts and interests to a degree she had not been before.

However, it was not just sewing that became an obsession to her. No matter what it was, she would become extraordinarily enthusiastic about it.For instance, in the summer of 2006 she took in a dog that was unable to stay with its owners because they could not handle his being blind.She loves animals and has a tender heart, but became so obsessed with this dog that she forsook all other things, including her job.I went out to pick up her daughter, Julia, so that she could concentrate on her job, but instead she spent the time dealing with the dog.At this point my husband and I went out to talk to Mary and her husband, Joe, about their situation.When we walked in the house we found the table completely covered with sewing materials and the rest of the room as well.Mary cried and asked us if we wanted her to feel tired and achy again.In fact, Mary was very upset with anyone if they suggested she should go off the drug and accused them of wanted her sick.

Things only got worse from there.Mary ended up losing her job because she could not concentrate on it.She could stay up all night sewing, but couldn’t spend several hours a day on work.Her only child had always been her pride and joy.In fact, if you asked Mary who or what she loved best in the world, she would say, “Julia”. It soon became apparent, however, that her regular self was being eclipsed by the medicated one.Julia was left to her own defenses while Mary pursued sewing, or at a later date, flower arranging.Julia was late for school, and when she did arrive, her hair would be uncombed.At one point, she didn’t even have shoes that fit.Meals were irregular or nonexistent.Mary would show up at a family gathering in a newly sewn outfit with hair and makeup done, but Julia would be unkempt and perhaps not even dressed.

Finally, this year, after her job was lost, she was not able to tend to her daughter, she wasn’t keeping track of bills, and could not regulate her activities, she could no longer pretend that this medication was a good thing.She may have felt better, but her life was in shambles.At this time she also had a dental visit where the dentist was flabbergasted at the state of her mouth.She had several cavities, needed three root canals, and had an infection in her whole jaw.The dentist said there was no way that her normal care and visit schedule would permit such rapid decay and that it must be related to a medication.Shortly after this, in September of this year, Mary was hospitalized with seizures the doctor said was a result of stress and medication.

I truly feel that Mirapex robbed my family of my sister for the last two and half years, and that Mary was not herself for the time she was on this medication.It was like poison for my sister.Her life rapidly descended into shambles, but she was not able to notice it.Because she is considered an able-bodied adult there was not much we could do to change the situation until it became so bad that even in her drugged state she could not avoid confronting what was happening to her.

I hope this information will be of some use to you. Thank you for your time.”

Sincerely, Amy Locatelli Stoelinga

It is 6:30 a.m. Christmas morning and Helen and I are still wrapping presents.We have hardly had any sleep for weeks.Before I retired Helen had a small business, more like a hobby actually, selling gift items at two flowers shops and from a small booth in a mall in Puyallup, Washington.I had planned to retire on my University of Washington pension and the equity in our home.We started out building equity in houses by living in and remodeling two houses in Seattle, and then building a log house in Hobart, Washington about 15 minutes from where we live now.All these projects were family built, wiring, plumbing, everything.Four years ago our family built our present house on lake property my parents bought in 1953.This house was supposed to be our retirement home.However, as described in the letters to Boehringer Ingelheim, we were blindsided by Mirapex.We never saw it coming, and the emotional and financial damage was done before we knew what was happening.Consequently we needed extra income from somewhere to try to keep ours and Mary’s family afloat.

A friend told us about a small flower and gift shop for sale in Enumclaw, Washington, about 20 minutes from our house.Since Helen had experience with buying and selling gifts and Mary had shown amazing talent in flower design, we bought the shop hoping it would give us income and help Mary back into reality by giving her purpose in life.We also hoped it would help our son Adam recover from the trauma of Mary’s behavior by giving him something positive to focus on.

Unfortunately, Mary has been able to work only sporadically at the shop.Helen and I are at the breaking point this morning.Mary has forgotten who had died during her years on Mirapex.We have to tell her the truth that this or that person is no longer with us, but it sends her into spasms of sobbing.We have had to put together arrangements ourselves, and fill in with other people.Sometimes we simply can’t fill orders.Mary tries to work, but can’t seem to organize her thoughts. The slightest thing will distract her.She does wonderful flower arrangements, but we are losing business as she can’t get the orders done on time.

Here we are, trying to make a normal Christmas for our family, and especially for Mary’s daughter Julia, who really is the innocent victim.Julia has suffered in unmentionable ways.The low point, if there could be a low point amongst all the horror, was when over a week ago Mary wandered away from our house.We had the neighbors searching along the lake as we were afraid she’d thrown herself in.We tried to shield Julia from all of this, but it was impossible.We called the police and they found her wet and shaking walking along a dark road.In her despair Mary was trying to walk to the Enumclaw flower shop.

Can we get through this Christmas?We don’t know.Will Helen and I be here next Christmas?We are not sure anymore.What is our future, who knows?We are in correspondence with the legal department at Boehringer Ingelheim through a senior paralegal Virginia Ruszczyk and with Vincent Lodato from their law firm of Sills, Cummis & Gross.We have no lawyer.The final chapters of this book are still being written, the outcome uncertain.Will they help us?Mary already has lost faith in the medical establishment. I pray every night that Michele at Boehringer Ingelheim was sincere and not trying to take advantage of a mentally sick and desperate woman.I fear that a cold shoulder from Boehringer Ingelheim will push Mary over the edge.

We got to bed around seven a.m. Christmas morning and had just fallen asleep when our son-in-law Joe woke us up.Our carport had collapsed from the snow load and damaged my son’s car and our Mustang convertible. I had meant to shovel the snow, but wanted to help my desperate wife wrap presents instead.My son looked at the mess and summed it up when he said “Happy f------ Christmas”.

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