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January 2001


I can’t begin to tell you all the ups and downs my family and I have had since last I posted. Things have been so hairy that I spent my nights trying to resolve issues and talking to fellow PLWPers. Thanks to Nan, Bren, Charlie, Peg, Sandy and anyone I may have regretfully missed. Christmas morning the 2 kiddos woke us up early. I have been sleeping great ever since the Doctor switched my dopamine agonist from Requip to Permax. I’ve had less daytime drowsiness and more nighttime drowsiness. Lost a few pounds since the switch as well but the Holiday goodies helped put them back on.

Thanks to the kindness of the folks at school my daughter got the gift she wanted most and my 3 year old got his own Gameboy (Thank you, Thank You, Thank You – no more fighting over the Gameboy). We quickly got groomed and dressed and drove to Vermont after they opened their gifts. My wife had gotten my present months ago before we had to pinch pennies – a digital camera. Not a real expensive job but suitable for what I love best – designing web pages. I can now share pictures of the kids with my family and friends without having to take the pictures, remembering to develop them (I have rolls that aren’t developed from 3 years ago) and then the tedious task of scanning them. We took many pictures in Vermont and gave my father such a surprise he cried.

I was in intense pain all the time I was there, which made the trip almost a chore except for the fact my father was delighted and so were the children. He had his house beautifully decorated (a chore left to my mother the previous 40 years). We had the intentions of visiting Nan but I was miserable and we thought it best to some home on Thursday. Glad we did because Rochester, NY and Trumbull, CT got pummeled with snow. I can’t recall a holiday season in Connecticut when we’ve had this much snow.

Let me go back one step before I forget. The Friday before Christmas I get a wonderful letter from my supplemental disability insurance company stating I wasn’t entitled to the 40% I had been paying for. The company I work for initially had us sign up in April but do to problems the policy didn’t go into affect until September 1st – after I was out on disability. The regular long-term disability company also sent me notice that week that they have to investigate as to whether I had been treated by a neurologist prior to signing up with the company but indeed they had found me disabled. (I was not being seen nor did I have any idea I had a neurological disorder at this point so things look good for that 60% disability) I am just waiting for final approval then they will deduct whatever (and whenever) Social Security gives me.

Yesterday went for monthly trip to the neurologist and after two months my sleep apnea results are back. Although I had a bout of sleep apnea during testing I don’t have sleep apnea. I was initially by the center that I did and this was included in all my letters to be submitted today to Social Security so they all had to be done over. My neurologist got right on the phone and had his letter corrected and it was available this morning. I had copies of all my records from the neurologist, the movement disorder specialist and my speech/swallowing/memory therapist ready to hand in as well as statements from my wife and I. I have a good feeling about the second time around. We are not using a lawyer because we all feel the change in diagnosis from Parkinson’s to MSA will help them over look any age discrimination.

I have been trying all sorts of pain meds. Vioxx made my legs well like balloons. Vicodin ES works but knocks me out. So now we are trying Ultram during the day. Hope it works. I’ve got a closet filled with unused meds.

Today after waking up depressed, feeling defeated by the world, and out of control of my situation – Siobhan spurred me on. I felt great mentally leaving the Social Security Office although I was in severe pain. Then comes a knock at my door – I think it was the devil himself. The man introduced himself as the buyer of the property that surrounds all 3 sides of our home. He wanted to know if we were interested in selling. Foolishly thinking he was going to make me an offer I couldn’t refuse (watching too much of the Godfather and the Soprano’s lately), I invited him in. He kicked my son’s Thomas the Trains out of the way as he walked into my HOME. I should have seen right there he was up to no good. He talked about how he was building affordable condos around us and he as interested on our property. (Affordable at $250,000 in our neck of the woods.) He wanted to know if we sold how much we wanted. We bought this 100 year old house in terrible shape and when I was physically well we had done our share of tearing down plaster, sheet rocking, painting, completely gutting the kitchen, putting an addition on to the kitchen plus much cosmetic work. The work slowly came to a halt when I started feeling the effects of my illness but the house we bought for $112,000 was reappraised at $167,000. It still needs work but it is our home and it is far cry from when we first moved in. The foundation was once held up by tree stump and I had replaced that with 4 steel lolly columns. The inside was a mess with unfinished hardwood floors, plaster falling in every room and a kitchen that was disgusting. We came up with a figure of $180,000 since we had added and addition since last appraisal. We had sunk a lot of time and money into this home. He laughed and told us he was going to offer us $100,000. We laughed and said we refinanced for our new windows and to pay off our Home Depot debt and stated our outstanding mortgage was $147,000. He then gave us a price of $135,000 and told us all sorts of devious ways to tell our mortgage company we were going to file bankruptcy (been there 7 years ago and don’t plan on it again) so they will settle for a lump sum payment of about $110,000 so we could use the difference of $25,000 for a down payment on another home. I didn’t like his thinking and I lost my temper – for those of you who know me know that this is a very unusual trait displayed by me. I told him he insulted me, I won’t leave my home “We built” and I walked out of the room. Siobhan continued to talk to him and he politely threatened her stating that some of our property is his and he will build right up to the border and he won’t pay for any damages to our septic and well when he starts blasting. I called Nan crying saying I’ve had it and she talked me through the whole crisis then I regained composure and made phone calls while he was till here. Siobhan thought it was great at first. We could buy a ranch with everything on one level and not worry. Major problem – our credit sucks. No one in their right mind would loan us money – we couldn’t get a car loan! I then reminded her he was in this for himself and he wasn’t out to help the Foley’s - only his wallet. He got 7 acres for $300,000, which is cheap here, and he plans to develop a condo on each quarter acre. He stands to gain quite a profit. She then picked up the phone called him and said we’d settle only for the true market value. He laughed and said the house across the street from us is only selling for $90,000. It has been abandoned for 10 years and is just a shell with about 1/8 and acre of livable property. I’ve changed my mind if he calls again – his cost keeps going up the more he laughs or insults us. We recounted all the times he quietly insulted our home and Siobhan told me that as he was leaving he stated our front steps were against building code. Not shit – I knew that but they’ve been like that for 40 years. What are you, the local building inspector? He is what we new town folks call an old timer – family is well known and has lived in this town forever. He told us to decide by Monday. I’ve made up my mind. If I was to sell it would be for over $200,000 but I’m not moving. I can’t emotionally or physically. We even offered to trade for a condo but he said we couldn’t keep the three dogs. They are an important part of our family. Each one having it’s own personality and my three family members each lay claim to one dog. Siobhan, the animal rights activist would not hear of this and neither would I. My dogs know when I don’t feel well. Balbo lays snuggled up next to me in bed, Sammy takes naps in my lap, and Zoe lavishes me with kisses when I’m not well. They are treatment for me. Sure Zoe and Sammy tore up Aidan’s Elmo chair today when we were out (out come the crates again) but we love them.

He kept saying that in my situation (disability) we could get into worse financial difficulties and he was our answer. I told him I had too many friends and they wouldn’t allow us to go homeless. It reminded me of George Bailey doing battle with Mr. Potter in my favorite movie – “It’s a Wonderful Life”.

He must of thought I had a mental deficiency or I was just plain stupid (I get that a lot lately from folks – those six years of college must not be apparent).

To end this story for now, Siobhan caught him in a lie when she visited the owner of the new gas station down at the corner. The Devil told us he hadn’t visited them when indeed he had just prior to coming to our house. She then went to visit neighbors on the hill behind our house to get their input. It seems they did similar battle with a developer 5 years ago. You see their houses rest at the top of the ledge these developers plan on blasting.

Nan consulted with Greg and come to find out he is responsible for my septic and well. If he continues to harass us I intend to use my disability as leverage. I’ve contacted my reporter friend at the large newspaper in the next town. Just stacking my deck! More tomorrow after I converse with zoning and the First Selectman.


Two things hit me in the face this morning, I may be without any income in a few weeks and more importantly - I've learned a lot lately through the school of hard knocks. Things that have to be shared and that is my calling. I never blame God for my hardships but sometime question why. What happened to that man who readily championed any cause he thought worthwhile? What happened to the man who took great pride in public speaking - whether addressing support groups like ours or fellow collegues? What happened to the man who once held his head high in public shaking hands and greeting people he knew everywhere he went? His compassion was not lost, only his own self esteem. His body not keeping up with his mind and soul dragged part of them down with it.

In High School, I belonged to an organization called Key Clubs - a high school division of Kiwanis Clubs. I was president of my own school, then in charge of the State of Vermont, and later after loosing the first round in an election for the person who "ran" New England's Key Clubs, I fought back and ran for Editor of the New England Groups magazine and won. I received several awards both on the New England and national level for my work. You're saying "There goes Tim walking down memory lane, where the hell is he going this time". In Key Club we were taught about school and community service. Some of the projects we undertook had an amazing affect on our young lives. A respect for our fellow man - especially those who had problems whether misfortune, illness, or age was one's plague. From my family and from this experience I learned compassion.

My troubles will pass someday and when they do I will help whoever needs it with the experience and knowledge I have gained. It will be payback for all of those who have helped me and rally behind me to realize these things are just hurdles that we all have to jump over. Some hurdles are closer together than others and some hurdles may be taller than others.

So when I ask God "why do you put may family through so much pain?", I really already know the answer. So that someday I may serve Him by the knowledge I have gained.


Another day and it’s been peaceful, very peaceful this week. I’ve been very weak this week – closest I can get to any poetry folks, not talented in that department. No need for anyone to worry, I’m hanging in there mentally but physically things have become a real challenge. Tremors have truly invaded the right side of my body, Thank God I’m right handed or I’d be worth crap around the house. Doctor’s order a wheelchair for me yesterday but I’ll have to be totally immobile to use that sucker. Like I told Nan this morning I have to go be “fitted” to fit my fat butt in one of those things.

Toad – I smiled when you mentioned in the MGH forum about a lean and healthy appearance in the afterlife – I think it was back in 1982 I last considered myself lean! I expect to fit into a size 32-waist pair of Levi’s when I get there.

Everyone’s posting about the fundraiser Siobhan’s friends are having for us and we are grateful. Except for providing names and addresses of family members, we have remained out of this. As I’ve mentioned before, our bath and bedroom are on the second floor and Siobhan has been itching for 6 months to do something with the carpenter ant infested screened porch on the side of the house. Unfortunately our finances have slipped, 13 days till last source of any income, and our friends took over. What she intends to do is have a handicap accessible bathroom as well as a bedroom/day room built for me. I just don’t want anyone getting the wrong impression – we didn’t design this fundraiser nor is it for everyday old renovations to the house – a lot of those were done two years ago by yours truly when we bought it. Nan was very gracious to post it in the various forums we all visit. Well I’ve got a 3 year old on my lap who just asked me what all the “crap” was on my desk and it’s time to sit and relax. Have to leave on a funny story – last week when it snowed so hard here, Aidan woke up and said “Holy SHIP, look at all the snow”. I quickly taught him to say “holy COW”!!!!!!


It’s another “Doctor Week” here at the Foley household. Siobhan and I spent the whole morning in the Radiology Department. Of St. Vincent’s Hospital. What started off as a swallowing study turned into a major ordeal. There is nothing physically wrong with my swallowing. It’s the communication from the brain that’s all haywire. I just have trouble initiating the whole swallowing process. Then the Radiologist and speech therapist see a problem with the way my esophagus moves. Instead of peristalsis (a wave-like movement) moving the bolus of food it just slides right down with gravity. How this is related to my MSA they didn’t know – they didn’t know what MSA was. My neurologist is waiting for the full report.

We had to drive home, let the dogs out, and then drive to the neurologist’s office for an “emergency” appointment. Over the weekend I came to grips with the reality that I am doing battle with that evil monster called “depression”. I was started on Celexa, which I have tolerated so far. I also have had a tremendous increase in tremors as well as increased rigidity and bradykinesia. At the appointment the doctor noted several changes in my left eye movement as well as a worsening of my condition. An increase in Permax was our decision.

One more week and I receive my last short-term disability paycheck with no long-term income yet approved. We will be without any income and my decline in health has convinced Siobhan to stay at home and utilize her nursing skills instead of getting a job. God will provide but we could use some extra prayers – stress is playing a major roll in our lives right now.

Thanks to all who came to my rescue Saturday to pull me through a rough time. I love you all. Siobhan greatly appreciated all your support as well.


We’re all lying in bed watching cartoons yesterday morning when someone rang our front doorbell. Anyone who knows us always uses the back entrance so we ignored it figuring it wasn’t important. The person rang the bell 3 times so Sara went down stairs to peak out the window. It was the devil himself – the real estate developer. We didn’t answer it for 2 reasons – he should’ve called first and we were all enjoying spending time together. “He’ll come back”, I told Siobhan. Sure enough when I was showering he was here. He told my wife that the group he was working for no longer wanted to put in housing but a strip mall. He goes before zoning on February 17. He made us a decent offering after he and Siobhan went back and forth. He claims he’s not going to make any money off this (does a good businessman do a job to make little or no money – I don’t think so). Lie #1. Then he tells Siobhan that he bought the house about ¼ mile down the road. Siobhan talked to them later and the man said that he and the developer had not come to an agreement yet. Lie #2. Our neighbor is a contractor and advised us to take the developer’s offer because he will get the zoning changed – if not now, maybe next year. If he starts building around us then our property value goes down and our taxes go up. Now I have to get a lawyer, have to find a mortgage company that will give a loan to a guy waiting for disability. Developer is giving us till Wednesday to decide, eight months to move and then after that we would have to pay him $2000/month rent. I told Siobhan that I give up – I can’t handle the stress. She said she will handle it all but you still can’t help but be stressed out just listening. We don’t mind moving. We’d find a small one-story house that we can make handicap accessible. The problem is getting a mortgage with our crappy credit. God forbid a relative co-sign a loan for us. We might be sleeping under the train trestle in Bridgeport. Just another worry to add on the list. Four more days until zero income day.

God will provide. I Pray.



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