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October 2000

10/13/00

I’ve thought about putting my journal together and have attempted several times. I won’t bore you with all the details but will share important ones.

Let’s start with a little background – for those of you who don’t know who I am my name is Tim Foley and I’m 37 years old. I am a licensed Pharmacist in the state of Connecticut. I was diagnosed with PD just before my 37th birthday on February 10, 2000. I’m married to my wonderful wife Siobhan (pronounced shivon) and have two of the most beautiful children in the world. Sara my princess is 8 and Aidan my mirror image (except for his temper which he gets from Mom) is 3. Sara got my temperament. We live in a town filled with rich folks (except us) called Trumbull, Connecticut. Early in 1999 we bought a 100-year-old house that is a fixer upper – lately I haven’t been the one fixing her up.Back in Jun of 1999 I went into the Hospital complaining of chest pains. While I was there I mention to my doctor that my essential tremors were changing and increasing in intensity. He suggested I see a neurologist when I got out.Well 4 months later, November 1999 after complaining of weakness on my left side, tremor on my left side, fatigue, restless leg syndrome and a continual cramping in my right foot, Siobhan decided it was time for me to see a neurologist. I went kicking and screaming to this particular neurologist and he did the usual neuro check and sent me for some simple blood work as well as an MRI. At the time he suggested I might have Cerebellar Ataxia. I went for the blood work and MRI and everything was normal except for a slightly elevated copper level. He diagnosed me with Cerebellar Ataxia and sent us on our way with a prescription for Mysoline, which didn’t work. Just a minor case he said. We did a lot of research and found there was no such thing as a minor case and it tends to be genetic. How about a second opinion?? My wife was familiar with another Neurology group from when she worked as a nurse at the local hospital.

Just before Christmas, we saw my current Neurologist Dr. Quan Hong or Anthony, as he prefers to be called. He was fairly new to the group, young and had studied at Trinity College in Dublin Ireland. He highly doubted the initial diagnosis and sent me for a wide array of tests over the course of the next 2 months. Because they didn’t have a diagnosis yet he kept increasing my Mysoline until we realized it did nothing for me. I went for copper blood and urine levels, Cat scans of the body, Lumbar puncture, looked at the MRI again for Halovoren Spatz disease, more blood work for paraneoplastic syndrome, and more blood work (so much that the people at the lab knew me by first name). Finally February 10, 2000 he asked if I would be willing to try a trial run of Sinemet. I was game because only the worst had run through our minds over the previous 2 months.

It worked like magic but he had me decrease my dose and started me on Eldepryl twice a day and Symmetrel twice a day which held me for 5 months. During this time I became depressed so he put me on Zoloft, which made my symptoms bilateral. I remember going to my first support group meeting shaking all over and not being able to sit still. The Zoloft was stopped quickly and we went on our way for 5 months just noticing slight changes.

Then all hell broke loose. I was getting worse. I was calling out from work sick every other week and catching flack for that. My tremors were worse, I was getting weaker and I was now bilateral. First the Doctor increased my Symmetrel, which made me vomit. Then he added Mirapex to my regimen, which also made me vomit and throw up. My doctor is of the school that Sinemet stops working after a period of time so he wanted to hold out. When he was off one day we went to see one of his partners, Dr. Jeffrey Gross. He started me on Sinemet because he does not believe the same as my doctor. Siobhan had insisted on Sinemet all along but until now Anthony was against it. Dr. Gross prescribed Sinemet CR 25/100 to be taken three times a day along with Eldepryl and Symmetrel. It was great, except for the nausea, at least for a while. I was getting worse again. Next step was to add Sinai 25/100 in the morning to give me a quicker get up and go in the morning. Again, this was short lived. Sinemet Cr was then upped to the 50/200 and for a while things were decent but not wonderful.

On July 26, the assistant manager of the Stop ands Shop I worked for came up to me and said “Tim, you look like sh** and like your in pain. Why don’t you take advantage of the company’s short term disability?” Being unfamiliar with the policy he pit the plan in action for me as I worried about my families finances. Then came the day I went to visi Anthony, he gave me a prescription for a quad cane, told me he’s putting me on long term disability and I’m not to drive anymore. He didn’t take away my license in case I wanted to go to store or get my Sunday Doughnuts. He brought in the Senior Partner of the group who was once going to be a movement disorder specialist and the man without knowing me took one look and said, “He has Parkinson’s disease.” I was labeled a Rapid Progresser. My body is reacting more like an elderly person’s body with PD than the slow progression of a YOPD’er.

As things went along I went into the hospital again with chest pains in August. Like the last time they found nothing wrong with my heart and I demanded to be discharged after they ignored a stat order for an echo cardiogram, screwed up my Sinemet timing, gave me the wrong strength and was ignored for an entire shift.

About a month and a half ago, Requip 0.5mg three times a day was added to my expanding diet of meds. So expanding that I gained weight and my diabetes resurfaced after 5 years of controlling it with weight loss and diet control. My blood sugar had soared to 300mcg/dl and Glucotrol was added. I had also been on Tenormin 100mg for about 15 years for my blood pressure. This is where I am now although I fell a dosage change coming on. Tomorrow I’ll write about how “Parkinson’s Disease gets in my way” and what I do about it.


Sunday, October 15, 2000

Yesterday, Saturday, Oct. 14th, I fell asleep at 7:00am and woke up at 11:30am and that’s was my nights sleep. I was up all night! I haven’t done that since my partying days in college. I’ve been getting a lot of cramps and pain lately so I’ve been playing around with the dosing times of my Sinemet CR and Requip. I think I need to be on a higher Requip dose. Someone asked me tonight what exactly was I labeled with. After exploring all the parkinsonisms this summer, both my Dr. Anthony and Dr. Siegel have labeled my as “Atypical Rapid Progressive Parkinson’s Disease” - a mouthful.

What I wanted to write about tonight was my recent publicity activities but something happened today that I found interesting. We were invited to my wife’s friend’s house for a pig roast. Usually I would feel uncomfortable in my pre-PD days about going to a party at which I only knew one person. Today, even feeling lousy, I was ready to get out of the house. I hate pork!

When we got there I shuffled on in using my quad cane and not knowing anybody, I hung out with my kids for a while. My wife was on a mission. These people that our friend Robin knows are all – well let me come right out with – they’re rich. My wife was looking for a car dealership owner who could get us into a mini van because they are east for me to get in and out of. Since being diagnosed and Siobhan not working, things have been more than a little financially tight around here. Our current car still has $13,000 on loan and we have no down payment for another car so going through the regular car purchasing routes have been fruitless. She found a man who owned a BMW dealership and they talked for a while and his only suggestion was to call Ford Credit and discuss what we need and our situation. They’ve been pretty good as far as late payments.

But back to the party, this is how I felt. After about an hour into the party, Sara and Aidan had abandoned me to play with kids their own ages and I was left to fend for myself. I get tired after a while of holding intelligent conversations with my 3 year old. There I am with my quad cane, a man with a 6-year college education in the medical field and they treated me like I had some mental deficiency. If someone did start a conversation with me it was short lived. One woman asked Siobhan why I was using a cane and Siobhan explained it to her and she said, “She didn’t know what to say to me”. Lady – you don’t have to say anything. If I want pity I have my own little pity parties with me, myself and I. I think 3 people actually talked to me. Loads of fun – yes sir-eee. I can talk about anything lady – what’s going on in Israel, Northern Ireland, Price of gas, presidential elections, books, music, baseball, computers and the list goes on. I can even tell you more about Parkinson’s if you want – just don’t treat me as if I couldn’t hold a conversation.

I really like to go out in public; it’s the people I don’t like. Those that walk in front of me – someday I’m going to knock someone over, and those that look through you and those that stare. Anthony ordered a rollator for me, basically a walker with wheels but also hand brakes and is a nice metallic red – thank God for insurance - $450. I will only us it if needed; I don’t need more people staring than there already are. The kids, I have to admit, are very innocent when they stare. Once, a little bot asked me if I broke my leg. I told him my brain didn’t let me move my muscles like normal people – he was satisfied. Why can’t adults be that way?


10/16/00

I couldn't type today so I took this story from my own journal.

The Hardest Month of my Life


April 2, 2000 - Sunday
This is my parent's 44th Wedding Anniversary.  I called them to wish them a "Happy Anniversary".  Dad said they came back from Florida 2 days ago ( not the 1st as intended ) because my mother thought she had the flu.  She was asleep in bed so we didn't get to talk

April 7, 2000 - Friday
My father called around 4:00pm to tell me that mom was in the hospital.  She hadn’t been feeling well – thought she had just the flu.  They evened had shortened there stay in Florida by 1 day.  She was sleeping and coughing all the time.   I called David Smudin at work and asked him to cover my hours for the weekend.  Mom was in intensive care and we were concerned.  We got on the road about 6:00pm and arrived at my parents’ house at around 9:30. April 8, 2000 - Saturday

I went to the Hospital at 10:00 am with my father and for some reason they were doing a cat scan of mom’s chest.  Maybe the pneumonia they claimed she had been worse than we thought.  She also at a low hematocrit, a UTI, and was bleeding a little rectally (My grandmother Ruth Stebbins died from colon cancer).  She seemed to look ok.  Went to visit her again in the evening.  Siobhan cleaned the house – could tell my mother hadn’t been feeling well because the house was not it’s normal immaculate self.   April 9, 2000 - Sunday Mom’s doctor, Dr. Eggbert, came in when we arrived.  Mary and Joe and Sara and Aidan were with us.  He sat down next to Mom and said she had a mass on her lungs.  They also wanted to scope her when she was feeling better to check her colon.  Dr. Conway would be her surgeon to do a thoracentesis and Dr. Mar would be her pulmonologist. Dr. Janik would do the endoscopy.  The doctor said he was pretty sure it was cancer.  It snowed hard so Susie didn’t make it to the hospital till late in the day.  Mary and I walked down the hall to call Susie and we cried.  How could this happen to our mother who never did anything to hurt anyone?  Other than her arrhythmias she was always healthy.  My mother insisted no one was to know.  We left for Connecticut at 1:00PM.  I was dazed.  This far outweighs my Parkinson’s, which I believe I have come to grip with at this point.  How would my father cope if something happened to my mother?  How would I cope?   April 10, 2000 - Monday

I had to go to work for 9:00 and Siobhan at 7:00am.  I brought Sara to school and cried all the way to work.  After being at work ½ hour there was afire in the computer room and all the computers and registers were down until 12:00.  During this time I called Mom and Dad answered – she was asleep.  We were so far behind at work it wasn’t funny.  Siobhan called and said “I have to talk to you about your mother.”  I thought she was going to give me lecture on being strong.  When I got home she told me Sara had been bawling her eyes out about her Grammy. I went up to Sara and told her I had no answers as to why this happens or what will happen and that I was very sad to because it was my mommy. Siobhan explained to me that things appeared to be much worse.  That CT scan shoed that there was cancer in the lymph nodes and they even thought there was a possibility of cancer in the bone marrow because of her anemia.  Surgery was not an option.  They were going to use chemotherapy and radiation to shrink the tumor.  Mary had told Siobhan that us kids might have to be tested for bone marrow compatibility.  My mother said that if that were the case she wouldn’t want a marrow transplant.  I cried going to bed – this was my invincible mother.  You think nothing can ever happen to your parents.  Bad enough my kids have to see me struggle with my Parkinson’s, which I’ll write more about at a later time.   April 11, 2000 – Tuesday

It was another crazy day at work.  Siobhan was going in at 7:00pm to work.  We received my profit sharing check for 2,300 dollars from Hancock Pharmacy.  My mother had a bunch of tests to go through. The kids were at Chrissy and Gerald’s house until I got out of work. Between April 12 and the 25th I don't have anything written in my personal calendar because everything happened so fast.  We made several trips to Vermont to visit during this period. In the mean time, stress was taking it's toll on my PD.


10/19/00

Today was another day in a very hard week. I have been struggling with my PD for over 2 weeks and my doctor is away for 3 weeks. He’ll be back again next Monday. I think it’s time to go see the Movement Disorder Specialist at Yale. Dr. Anthony only has me on 1.5mg of Requip a day and I know it’s sub therapeutic. I called the covering doctor in the group and he told me he could get me in to see Dr. Lieberman from the NPF so I should jump on a plane to Florida. I asked him how I was supposed to pay for that. He just repeated himself and told me I’d have to deal with it until my doctor gets back We are going through financial difficulties as well as my physical problems. My typing is very limited and Charlie Black had suggested I get a track ball instead of using a mouse. Siobhan had enough money tucked away to buy me one today and it makes a world of difference.

I’ve decided to limit my time on line to one on one versus chat rooms and postings but will continue to write my journal. It was a personal decision, not that I was mad at anyone but I thought as far as time management and helping others it was more beneficial. I can’t be doing everything and I nee some “TIM TIME”. I was starting to get depressed which is unusual for me but today I seem better mentally. I’ve been trying to keep myself so busy that little things got in the way of what I am trying to accomplish. I need to remain active in PLWP as well as my state’s support group. I’ve also volunteered to create web pages for the teachers at school, join the Father’s Club at school, create a web page for a friend’s dog rescue. (We went to her house and took home our 4th dog the other day - Sam) We are also starting a YOPD support group in our area. My time is well occupied. It does keep my mind of PD but I was running low on energy. I was spreading myself too thin.

We have had two newspaper interviews and one TV interview that was aired tonight. It came out nice except we were cut off at the end by an urgent report concerning the finding of a rapist in New Haven. The reporter, Jayne Saffer called from WTNH to apologize. She was mad because she has Dr. Kenneth Marek from Yale Department of Neurology on live right after my interview and she felt bad for everyone. He is the doctor I am trying to get into see at Yale but he is booked until February 2001. Jayne had mentioned him to me and we mentioned that to his nurse and she’s going to try and get me in soon. The first newspaper interview came out last Thursday and it had both my phone number and email address in it. I got two nice calls from strangers and an email from an old friend of Siobhan’s. It was in the weekly town paper – no pictures but nice article as I mentioned before. The next article will be in the largely circulated Connecticut Post, which is on line. It will be in several parts. Siobhan and I are trying to increase PD awareness through the media.

We’ve been trying to get a car loan the past three days and it has been taxing. No one wanted to touch us except one dealership due to our rotten credit thanks to PD. We need a car that’s higher off the ground so that I can get in and out easier. Our Taurus just doesn’t cut it anymore. This has added up to a stress level I can’t handle. I’m actually going to bed early. Thanks to all of you who prayed and shared – Peg, Nan, Brenda, Charlie, Len, Stephanie, Paula, and Sandy. Appreciate all your support.


10/20/00

Do you every feel guilty about having Parkinson's Disease? I think back 1 year and how my life has changed. We were never rich by any means but I was always able to provide for anything my family needed. I would have been able to afford my daughter's violin lessons as well as a violin. When we needed something, we didn't have to wait for my biweekly disability check. My wife brought in a decent paycheck every week by taking care of others and now it's me she's taking care of and the only thing that she receives from it besides grief is the fact that we're together more often. I worry it interferes with plans she might have made if I was well. Maybe my son's bedroom and our kitchen would have the moulding up and the living room would probably been sheet rocked by now. The hallway upstairs would have been sanded and polyurethaned instead of being painted dark red. That back splash on the kitchen sink would be up. The new addition to our kitchen would have two coats of paint outside instead of 1 wall with 2 coats, 1wall with 1 coat and the other with just primer. My son would have that Toy Story 2 video he's been longing for instead of waiting for Christmas - which will not be as gluttonous as in the past. We wouldn't have to decide whether the mortgage is going to be 2 more weeks late or to replace my 5 year old eyeglasses. We would be visiting Vermont and my family more often - I haven't been up this year since my mother's funeral in April. I know things would have been better - less worry and grief, less stress and depression, more money - a major source of stress in every household.

But then I can look in the fun house mirror and see a different picture. I see my wife and I working together to find out more about this disease and helping others with there problems. I see it bringing us closer. I can sit and talk with my daughter after school instead of arriving home at 10:00 pm, eating and going to bed. I can watch my 3 year old son fight "potty training" like the guards outside Buckingham palace. I watch them grow. We share more - they see more. We love each other even more than before as if it were possible. After all we are a family and that is what families should be like. Trying to take things day by day is becoming harder. Today I can hardly move and don't look forward to the next day but do not fear it either because i just don't know how I will feel. I can't think about the future.

While talking to my father on the phone tonight we were discussing how our government doesn't provide for the middle class. He wanted to apply for heating fuel aid from the state - his income was satisfactory but his assets were too much - he owns his own home - mortgage free. For that he is penalized yet he can't pay all his bills at the end of the month. Just more to think about!


10/24/00

I haven't been journaling the past few days due to the fact that we've been very busy. On Saturday, Siobhan and I went to our support group meeting in Middletown, Connecticut. At the meeting we discussed the various opportunities we have had to tell the Parkinson's story to the press. We talked about our article in the Trumbull Times and our recent appearance on the news, as well as our upcoming series of articles in the Connecticut Post. It was good to see our old friends as well as meet many new people. As always, I came away from the meeting with a very good feeling. And many people thanked us for what we were doing for the Parkinson's community by creating awareness.

Monday morning came and I had been feeling decent all weekend. I woke up Monday, feeling the worst I've felt in a long time. I had to use the new walker that I got a few weeks ago to get around the house. Dr. Anthony called in the afternoon to see how I was feeling. Fortunately, I had an appointment with him the next day at 10:00 AM. I spent the whole day in a state of rigidity and tremor.

>When I woke up this morning, I felt much better than the day before. I was still not feeling as well as I'm used to. The reporter and the photographer from the newspaper accompanied us to the doctor's office to see what one of my appointments was like. We spent over two hours It doctor's office. Anthony is very concerned that I have something in addition to my Parkinson's disease. What the other problem is, we have no idea. The only thing we have that in definitely ruled out is Wilson's disease. He said in I definitely do that Parkinson's disease but there must be some underlying condition that is making my Parkinson's disease progress so quickly. This made Siobhan and I a little bit sad and a little bit fearful of the future when we left the office. Even though I knew I had Parkinson's disease there's still the thought of being diagnosed again with a little problem and going through all the testing again. Next week, I and scheduled for a MRI and an EEG. Right now we are looking for one of the various multiple system atrophies. It is a little bit discouraging to be put through this whole process again but at least we will have an explanation for my rapid progression.


10/27/00

The nuns in Catholic School always said, “God works in mysterious ways”. They were right, most of the time. Especially the four nuns that were sisters, all came from County Cork, Ireland, and all taught at the same school. One was the Principal, one was the music teacher, one was my fifth grade teacher, and the other was my eighth grade math teacher. Their religious faith was unfaltering. (I could right a whole comedic book about my experiences in that school – My daughter went to the same school for preschool and there wasn’t a nun in sight. The last Principal was a nun and she retired the year before and I think the new principle was a man who seemed younger than I and changed the school around.) It would never be the same – that unwavering sense of Christian Unity was gone – and so we moved back to Connecticut after four years in Vermont.

I’m no the best Catholic as far as sticking to the regimen of the Church – they want too much of my money that I don’t have. Sell some of those masterpieces hidden in the basement of the Vatican in Rome. The nuns taught us respect and love for God and to love one and others and that is what I base my religious beliefs on. So here’s the story of the day.

I called Peggy this afternoon to find more out about Pet scans because we both were contemplating whether they would play a role in our individual situations. Seems that my neurologist believes I may have multiple system atrophy. My wife asked him today what he truly believes and he said he thinks I have Striato Nigral Degeneration. It has all the makings of PD plus there is some brain atrophy involved and there is a life span limit – 3 to 8 years. Her wouldn’t tell us the other day but we suspected that was what he was searching for by his concern about my 3+ reflexes and the plantar test he was doing on my feet. Peg and I were talking about insurance and I said God put me in the right job just last November after working for a miserable son of a gun. I work for a grocery store chain and I enrolled with the urging of my boss in 100% long-term disability. Point #1 – who would of thought I’d use it. I worried at first about insurance for my family while on disability so I called the company to see whether I could buy Cobra coverage for everyone. The woman said, “All of your benefits are covered until age 65 because you will always be an employee of this chain – that’s Point #2.

When Siobhan and I were first married we had a very good friend Mike who at the time had a baby close to Sara’s age and we all used to get together weekly. Mike and his wife weren’t meant to be so she took the child to Florida and he moved there to be close to his son. Next thing we knew he was out in Arizona. We lost track of Mike 5 years ago. We knew his mother lived in the same town as us but she had remarried and had a different last name than Mike, which we couldn’t remember. She had read our article in the town paper and sent Mike a copy. Well my day changed from a very depressing one to one of extreme happiness. Mike had moved back to Connecticut 4 months ago with his new family and he called because our number was in the paper. My eyes lit up when I heard his voice. Mike isn’t just any friend but a “stick by you no matter what” type of friend. Siobhan, Mike and I talked for over an hour. He only lives 20 minutes away. He told me he cried all night when he read I had PD. We are all getting together this Saturday after a long period of “I wonder where Mike is?” It made this one of the best days in a long time. God watches over us and sends us help by strange messengers. We may not notice this but if you sit back and look around you, God is all goodness. He sent a man who meant so much to my wife and I back into our lives when we needed it most.



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