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November 2000


11/01/00

Ok, second attempt, I lost the first attempt.

Friday night was fun?? I froze up for the second time in a month. After that I couldn’t move my hands or legs for over an hour and this upset poor Siobhan a lot. She put a call in to Dr. Anthony who could just sympathize with me. He said no medication changes until after all my testing was done.

Saturday night my friend Michael and his family came over. He was a little upset to see me progress through the night and cried at one point. He’s a plumber and he offered to fix a few things in this 100-year-old money pit. He said he’d also put in the bathroom on the first floor when we saved up enough money for the fixtures. We had a lot of laughs and reminisced over good times. It was great to have him back as part of our family.

Monday came quickly as it often does and Siobhan and I met Mike the Photographer from the Connecticut Post at the Doctor’s office fro my EEG. Come to find out I was supposed to be at the radiologist 2 cities away for my MRI. Oops, everyone took the blame but I think I told Siobhan the wrong dates to put on the calendar. We jumped on I-95 and sped our way through the morning traffic. We were only 10 minutes late. The only problem that occurred is the woman taking the MRI was not well skilled in IV’s nor was her supervisor. Siobhan wanted to jump in and do it but she had not been “prepped” for the room. The MRI results should be ready to be picked up on Thursday.

Tuesday came - the frustrating day - we were waiting to here from a fourth and fifth person about car loans. Off we went, camera crew and I, to the EEG. Siobhan escaped from the room and sought out Dr. Anthony. The EEG was normal. Went home and it looked like the Ford Dealership we always deal with had a deal set up. The bank just had to approve it. Stop and Shop Corporate Headquarters told them I was on disability so they rejected me. The General Manager called the lender up and told them they were setting themselves up for a lawsuit. He explained I had the income to buy a used car and told them to work on it. Siobhan confided in me the information Anthony conveyed to her. My quality of life over the next few years was going to go downhill if I keep pouncing through this disease at the rate I’m going. He told her not to tell me this but we keep no secrets from each other – she even guesses her Christmas gifts correctly every year!

Poor little Aidan had to stay home from trick or treating because of a double ear infection. Sara told him she’d share with him. He was so excited to see the bowl full of candy she brought home. Not like when I was a kid thought – we had none of those little bitty candy bars. Our pillowcases were filled to the top with full size candy bars – Chocolate Nirvana!

Wednesday, November 1, 2000

I awoke in a fog today, was it the fact that I’m not slowing down in my progression or that I took an Ambien to help me sleep last night. I can only look at it one day at a time like they teach you in Alcoholics Anonymous. If I look to the future I panic and I can’t due that for my families sake. I refuse to be depressed – been there before and don’t intend on going back. The tremors in my left hand are more persistent than ever. Today was a good day – I shuffled as I moved about and only had cramps in my hand and feet but not my back which knocks me out. We’re still trying to buy a car but when the lenders find out I am on disability they reject the loan – one dealer even came out and told us that was the reason. His general manager called the lender and told them they better reconsider or they might have a lawsuit filed against them. We weren’t asking for much, a used van with decent mileage. We have a whopping $3,700 to our name ($2,700 borrowed from my father-in-law) so we are either going to buy a Jeep Cherokee or a Mercury Villager with lots of miles on them. I opt for the Jeep because I know many people who have driven them into the 200,000-mile zone. Just a year ago I could have bought a brand new one with no problem. It stinks but it’s not the first time we’ve run up against discrimination. Today was out 5th rejection by a different dealer and we through in the towel. We weren’t going to worry about this – just a minor setback. We’ll turn in the Ford Taurus and then we won’t have any loan payments. Then we can add the family room with a downstairs bath and pull out couch for me. I’m amazed at the way our life has changed in less than a year – not a day goes by without the pain of PD and not a day goes by without a money problem. This old house still needs repairs, which a year ago I could have done but now, don’t even think about. I can still paint a room for some reason – even cut in the edges with a brush. Must be my father in me. One day at a time – I hope I can always remember that.

11/10/00

Amidst all the election goings on we must not forget today is Veteran's Day. Which makes me thankful for my father who served as a sergeant in the not very popular Korean War in the middle of the past century. The reason I bring this up, it has been an enjoyable week as far as life goes yet a constant struggle with my PD. Dad is coming this weekend to celebrate my Sara's 9th birthday (9 going on 19).

As many of you know we had been applying for a car loan to get in to a Van so that I could enjoy my chauffeured rides (by Siobhan) with a little legroom. Rejection was the theme of last week. This week, two sisters and their husbands came through for us in an unbelievable example of selflessness. They almost matched our down payment in money they had received from their father's life insurance and helped us purchase a used van. To Beth and Michael and Jen and Arthur we owe an unending debt of gratitude. Michael is a car salesman who had a great used van sitting on his lot. One of the mechanics laid claim to it over a month ago but never came up with the cash. Michael approached the owners of the dealership and explained to them our situation. They allowed us to buy it at the price Michael would receive it as an employee. Beth and Jen generously loaned us the money that they had received from a life insurance policy that their father had taken out (both of their parents had died over a decade ago from cancer within 1 year of each other) with to time constraints on paying them back! God bless them. They are also planning a fundraiser for my family in the upcoming year to help put an addition on the house so I don't have to climb the stairs to go to the bathroom!!

I had my EEG and MRI done this week with no changes since diagnosis. Dr. Anthony says it is too soon to see what he suspects and only time will allow it to present itself to the naked eye if it does at all. My diagnosis is still Parkinson's Disease (and to quote him "with something else that will present itself in time"). Anthony, Siobhan and I know what that something else he is looking for is - it is just one of those things that doesn't always show on the tests and sometimes it shows up only on autopsy like Parkinson's. Whatever is causing me these constant changes in my body has changed the way I look at life - Day by day and short-term goals by short-term goals. Siobhan and I had a good laugh the other day. I said to her, "You know what has finally hit me - that I can not return back to the workforce!" I always felt a little guilty being on disability but now realize that it's not my fault. Well we've switched my dosing schedule around (thank you to the anonymous angel who has helped me out with this situation) and man is it confusing. Not so much that I forget to take the meds but I get involved in something and don't realize the time. I have learned to keep my daily med box on me at all times because the 1 hour trip to the market always seems to end up in a 3 hour journey. Last night I had a weird experience that resulted in another dosage change. It was around 5:00 PM and Siobhan was busy in the kitchen making lasagna and Sara was upstairs on the computer playing games. Aidan was sitting in my lap and we were watching cartoons together (I have always been a cartoon addict). I dozed off for no more than a minute (must have been a repeat toon) and when I woke up I could not move my hand or speak what I wanted to say. I managed to mutter Sara's name, she came running and got her mom. Siobhan used her nursing knowledge to make sure I didn't have a mini stroke or something similar. I could speak enough to tell her I was OK and that I knew exactly what I wanted to say but just couldn't do it. I kept counting to 10 for her and an hour later I was able to do it with the speed I normally could. Anthony was on call (thank you Lord it was him on call) and we decided to cut me afternoon Sinemet in half. More tests next week including a spect scan and sleep apnea test.

I really didn’t want to talk about me but about friends - the ones who abandon us, the new ones we find and the old acquaintances who come to the forefront to help us out. Especially our dear fellow PD'ers who are the only people on earth who know our true physical and emotional feelings. As Thanksgiving approaches we should really thank God for the support we have here, for our friends who don't quite understand but stand by us, and for our caretakers who struggle everyday with us and have their own emotional angst. This I have always known but have never appreciated more than this past week!

11/13/00

We all had a great weekend at our house. My father arrived Saturday afternoon. It’s always a shock for him to see me progress me he manages. We spent a lot of time talking about my family and how they were handling their own problems and the recent loss of my mother. One of my sister’s is truly having a hard time letting go. Other than that we just had a good time. We let Sara open her Birthday present early, which was one of those trendy scooters all the kids have to have. Since it was raining she rode it all over the hard wood floors – thank God for polyurethane! We brought my father to the mall in town and he bought the kids new boots for winter as my mother had done in previous years. We went home and had a delicious top round prepared by Siobhan and just sat around and talked then I dozed off for an hour. The next morning we went out to the local diner for breakfast. Aidan has become infatuated with his grandfather from Vermont, as was Sara with her grandmother. They are my parents’ only grandchildren so my parents tend to pay a lot of attention to them. My father left and we brought Sara and Aidan to the park where Sara could ride her scooter. I found a new form of therapy – the swing set. Since there was nobody else around I sat my fat butt up on a swing and man was it relaxing just swinging back and forth. I must have looked real cute – I know Aidan got a kick out of it! It was a beautiful but cold day and the park soon filled up (darn – no more swinging!!!) We got home after several errands and I put in the new phone line for my computer, which is being moved from upstairs to the kitchen. There is a two-fold purpose for this – I won’t have to climb the stairs and the family will actually know I’m home when I’m lost in the Internet! Then it snuck up on me, I started getting tired, fidgety and nauseous so I went to bed only to get up for Chy’s radio show. I don’t know whether it’s due to the decrease in my afternoon Sinemet but I feel lousy, real week. I can’t let it bother an otherwise great weekend!

11/18/00

I know some of you have been concerned because you haven’t seen or heard from me but I’m doing real well. I’ve just been online at weird times. We’ve had a busy week with my Sara’s Birthday on the 14th. Just a quite party for the 4 of us, we’ve been trying to keep people away since two of our dogs have come down with fungal skin infection. Thank God it didn’t affect my old “Balbo”. He’d look awful with big clumps of Black hair missing. Those darn dogs are worse than the 2 kids – and more expensive too. No more room for dogs here but if anyone is ever looking, give me a call. Our good friend Robin is Assistant Dog Warden in town and also runs a dog rescue. She keeps over 70 dogs at her house at a time. I’m developing a web page for her. Speaking of web pages, at last count I had 121 (one hundred and twenty-one) unread emails in Outlook express from the Gym Teacher I am designing a site for. That is from a one-week period! It would be different if I were getting paid, I do these for fun. I’m currently working on 6 sites so that keeps me hopping! Had a Spect scan of the brain this week – this one shows blood flow. Next week is sleep apnea study and a trip to Yale to see a movement disorder specialist.

Peggy – Happy Birthday! Charlie and Chy – thanks for the calls (Chy and Ryan – have a safe trip down south)

Back to work on these sites.

11/20/00

I’ve just read the posting about the death of a fellow PD’ers. I did not know him well but we had talked several times over the past few months. It has not been a good year as far as losses and after reading this I cried. I’ve lost my mother to cancer less than two weeks after being diagnosed, one of my best friends in an awful accident as well as several very close family which included my father’s best friend (my mother was his true best friend but this man was like a member of our family). Then this disease entered our lives amidst all this loss – a disease that has stopped me from practicing my profession. It has not been a spectacular year. The year 2000 will be remembered for many things besides the most screwed up presidential election in history (can I take my vote back and give it to Ralph Nader. Doesn’t it make you feel like your vote isn’t worth much)? But life goes on and I have to keep focused on the facts – I have a wonderful wife and 2 beautiful children as well as a multitude of friends in the Parkinson’s Community.

I have more testing this week. Tomorrow I’m off to Yale to see a movement disorder specialist. Wednesday is the Thanksgiving play at school, Thursday is Turkey Day and Friday night I have my rescheduled sleep apnea test. The closer it gets to the Holidays the busier things seem to get. I thrive on that type of stress – I guess that’s why the Holidays don’t bother me and I tend to enjoy every minute between now and New Years. Most of the shopping is done and although Santa has fewer bucks in his pocket than in Christmas’ past, we remained focused on the real reason for Christmas. As the kids are taught – Jesus is the reason for the season! Learning to take each day as it comes and enjoying that which is around you at the moment is like learning to meditate – but once you know the trick it makes life a lot less stressful.

My mother taught all of her children that tomorrow is always different so don’t worry about it today. She should know growing up as the eldest child of a widowed mother growing up in a low-income setting. My mother never discussed things like money although we all knew growing up that we certainly weren’t on the top of the financial ladder! She never discussed health either – it wasn’t for us to be worrying about. And she never would tell you whom she voted for!

“Carpe Diem!” was the motto of Robin Williams’s character in “The Dead Poet’s Society”. “Seize the Day”. I don’t know about you but seizing the day is the last thing I think of when I roll my body out of bed. “Get me the damn medicine” is more likely what you’ll here me exclaim. But I will give the day a chance to present itself and I will not be prejudiced and assume he is a “bad” day. Just another day that I have to deal with!

A sad day it is but that does not make it a bad day. There are many good and bad days to come. I’m more concerned about what the heck I’m going to do the next hour! Have a great day!

11/23/00

What a week it’s been so far. Tuesday I had an appointment with a really super movement disorder specialist at Yale – New Haven Health Center named Doctor Kenneth Marek. He reconfirmed our deepest fears and said that I had more than just PD. He said he was very sure I had multiple system atrophy. When inquiring as to which one, he stated he was unsure yet because he did not know my rapidly decreasing condition or me that well. He was extremely interested in me – he usually has a six-month waiting period but became interested in my case when he saw me on the news telling the story of those with Young Onset Parkinson’s Disease. He had also been pushed into seeing me by one of his research and long time patients Jackie Dorwin who runs our support group. Jackie has been a close friend since day one and she is an endless source of information. Jackie always calls or emails me and says, “Can I have permission to give this person your phone number because they could really benefit from talking to you, Tim. I told her she never needs my permission to give out my phone number. I have made many friends through helping those through the post diagnosis stages and she knows I benefit as well. Dr. Marek set aside time for me when he normally does not see patients. During the whole examination he kept telling me to relax my body and I replied, “I am relaxed!” He also kept stating that my rigidity and hyper-reflexes were quite remarkable. After he told us about the MSA, Siobhan had many questions and he was surprised at her support for that and me we weren’t totally shocked. We explained how my neurologist had always suspected something else was causing my rapid progression. The bug question was how long was my life span. He said right now he couldn’t put a time span in to place but we should think about putting that bathroom on the first floor as well as the family room/handicap accessible sick room. I cried on the way home and Siobhan asked if I was worried about being in a sick bed or having a tube feed and I snapped at her and said, “No, I’m worried about you and the two children”. She said “Don’t worry about us dammit, we’ll be fine.”

I decided to tell my father about this even though I debated in my mind whether I should or not. He had lost his soul mate and now my sister was grappling with depression due to the loss of our mother. He kept asking me whether it was 30 years, then twenty years, then ten years and at that point I told him that Dr. Anthony had told Siobhan 2 to 3 years and Dr. Marek had said probably up to 10 years but he wasn’t positive. My father, a man who never likes to display anything but positive emotions seemed torn apart by this statement. He had mentioned in the past that he was going to create a college fund for the children’s college tuition especially if he sells our family homestead. Now he will worry but I don’t like hiding things from him.

Wednesday, I awoke in my one day at a time attitude when one of my former co-workers called saying how she needed to take the foreign pharmacist pharmacy exam so that she could practice in this country (she was a Pharmacist in Panama) and earn a decent salary. She told me how she didn’t know how she was going to buy Christmas gifts for her four children and two foster children so I told her not to worry, I would make sure they get gifts. She also inquired as to where she could get a computer for cheap. I told her how I came across an older computer recently, which just needed a RAM chip and peripherals and I would put it together for her. This made me feel even better.

We went to Sara’s Thanksgiving play and when we arrived home the mail was waiting. Excitedly we opened the letter from Social Security only to have our hearts slice in half at the words “declined”. We thought for sure we had filled out the forms properly explaining everything I could not do. Siobhan called the case worker and left her a nasty message on her voice mail. We also called Dr. Anthony who was in total shock. I called my Senators (Vice presidential candidate) Lieberman and Dodd as well as Representative Shays. It was like they never read any of the reports and just looked at my age. If I really could work you bet your butt I would be working. I didn’t go to college for six years of extremely intensive study for nothing. I enjoy helping people and Pharmacy was an excellent way to do just that.

The case worker called me back and told me they think I could get a job like a “cafeteria line worker”. I said how could I do that when I can’t stand for more than 10 or 15 minutes at a time. “Well that is what the people who reviewed your case think”. I thought to myself – What, do they want to force me to apply for Medicaid or bankruptcy – what kind of salary would I get out of that! Never mind that I couldn’t so it in the first place! She then started to blame everything on my doctor and his inability to express my disabilities. He fills out these forms everyday for people. Anthony even told me they were experts at it. “Your Doctor called me as well as your wife and calling all these people will do nothing for you.” That’s not what the politicians’ representatives told me. Senator Lieberman’s aide even told me he couldn’t say what he really thought of the bureaucrats at the SSA or he might get in trouble. The form states I can lift and handle small objects – where the hell did they get that. I can’t button my shirts, take my wallet out of my pocket or even build a Lego building. Thank God for calls to and from people like Nan, Chy (and his bus trip story!!!) and Charlie. I was at wits end and starting to feel a depression set in. My friend Mike and his family came to visit as well as my friend Foy the Pharmacist from Panama so I didn’t have much time to stew in anger! Sorry this is so long but a lot has happened this week. Hopefully tomorrow will be peaceful - just the 4 of us for Thanksgiving. Happy Thanksgiving everyone!

Tim


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