Make your own free website on

« April 2019 »
1 2 3 4 5 6
7 8 9 10 11 12 13
14 15 16 17 18 19 20
21 22 23 24 25 26 27
28 29 30
You are not logged in. Log in
Entries by Topic
All topics  «
What a Summer

My daily dealings with Multi System Atrophy
Tuesday, 24 August 2004
Boy have I not Blogged
Mood:  mischievious
Topic: What a Summer
Blog Aug 24 2004

I'm getting so much email and so many hits lately it's amazing.

Let me start with our summer. We planned to do over all the bedrooms and give my son my wife's big room so he can have plenty of room for fun, games and friends. That way our living room will remain somewhat clean. We scrimped and saved for paint, new furniture from Bob's Discount Furniture, and we got super deals on decorative ideas on EBay. For my son's room we painted it Sandy brown. I struggled to paint the edging while my 12 year old Sara did a fantastic job rolling the paint. (Siobhan has had a bad back since December.) I struggled, took my time, then slept for a week. We got a baseball diamond rug, brand new, for practically nothing. I had tons of baseball memorabilia from my card collecting days in the 1980's, and we found great deals on bedding that he needed badly. He had been sleeping with my wife in her extra, extra firm double bed. She moved to his room and we painted it a pink. She decorated her room with floral swags, painted his fairly modern wardrobe with a distressed look and brought in her antique dressers our friends gave us last year which included another wardrobe to hang clothes. She ordered herself a new full size bed and mattress (which is like sleeping in heaven and has been great for her back). Sara wanter her room a woodland mossy green from floor to ceiling. The hardwood floor in her room was ruined by the previous owners whose incontinent aunt almost always missed the "spot" [d'oh]. Thus we painted Siobhan's new floor and Sara's floor with off white deck paint. I was impressed with what two ailing parents and two youngsters could do. Sara also got new dressers but got Siobhan's old bed - we put a pillow top over the mattress. We saved a lot of money - each loved their room - and Aidan loves his new play area. I'm still in the living room.

Well hell started to break loose. The plumber who ruined our plumbing who was suing us for payment wanted $10000 for a 1400 dollar bill. We were in default because our old lawyer who was in trouble with the bar had neglected to send us a court appearance notice. I borrowed what little my Dad had to share and I prayed to the Blessed Mother. You see we had contacted the state of Connecticut and the plumber was a licensed heating man at the time of the work but not a licensed Plumber (he was a friend of a friend so we just assumed - you know what happens when you assume). We found out the State could go after him for $10000 (not that we would get any). The lawyer who took the case from our old lawyer (also a friend of that same friend) would not take the case even though he accepted all her files as a favor to the courts. We found a lawyer, the father of one of my son's tiger scout buddies. He volunteered to work pro bona and we knew he was good - he prosecuted the Enron case! The court still said we should have known about the court appearance and that was against us. Otherwise our newest lawyer said we could have nailed the plumber to the wall. To the courts it looked like we just ignored our court appearance. Our lawyer mentioned to the plumbers lawyer how we could file a complaint with the state and it would wipe out any money he got from us so if they settle for the original bill we would settle out of court. They said yes (I prayed five rosaries to our Blessed Mother that day - a story for another day) When I finished the last prayer a rush of adrenaline surged through my body, our lawyer called and said they agreed on the low settlement.

Siobhan thought we had an extra month extension on our car loan until the finance company took it away. It cost us two car payments but the worst part was the cost that the repossessors charged and the fee to return the car. We borrowed money from Siobhan's folks for the car payments and her dear cousin Bob helped us with the outrageous repossession fees as well as giving us some money for our other bills.

All of a sudden everyone wanted money "yesterday". We had to use some of our settlement agreement that we had to pay our bills and feed our family as Siobhan quit her new job at a Children's Medical home because I had pneumonia and it was unfair to them to keep calling out. She was also on the verge of a nervous breakdown.

The Church gave us money while Siobhan looked for a new job and my father loaned us what little he had left to share. Money went out and out and out. We ate pasta and cereal on sale.

Things settled down, Siobhan asked to go back to her job before the Children's home which she starts in one day, my disability and SSDI is coming in. Money goes out for school clothes but the only bill we are behind on is our cable. She'll work Mon, Tues, & Wed from 11PM to 7AM so she can see the kids off to school, sleep and be awake when they get home. Cub scouts is every other Monday, Catholic education is every Tuesday (Aidan receives his first Holy Eucharist this year so this is essential) and his baseball is on the weekends which she finally has off for the first time in 2 years.

She is back to volunteering with drug education at school - last year was so tough she neglected her volunteer work. She is even responding to email from this site. She likes to talk to the spouses who email - feel free to email her.

PAGE VIEWS by Tripod Your site had 116 page views yesterday. Total page views this month: 2845
We are on the right path. More stories this week

Our 8 month old 80 pound pup - Sully

Aidan advances to Bobcat from Tiger scout. Siobhan with him

Love to all of you


Tuesday, August 24, 2004 2:29:15 AM

Posted by msainfo at 2:43 AM EDT
Sunday, 26 October 2003
How am I really?
I should kick myself for not writing more.

I ust had my pain meds increased to 200mcg patches of Fentanyl every 3 days, had Percocet increased to cover the breakthrough pain and I'm hanging in.

I've gotten very weak and very tired. I feel bad because even the small chores I once could do just aren't getting done.

I'm still as lonely as hell although I had a visit from a college friend. We weren't real close in college but he was a good friend of my room mate. He has been a lifesaver and even when I don't see him he e-mails me. I found out one of my dear friendships was affected by the political sign I put on my lawn. I don't have time to deal with friends like that. The town republicans were all upset we are supporting the Democrat running for First Selectman. He helped us deal with the developer next door. Many republicans promised us help during the last campaign but laughed at my wife and called her names when she turned to them for help. She got upset when they say they would do nothing so they called her crazy. Those who we were real close to told us how upset the Republicans were - if they were so concerned about us why did they never visit, call or help when we needed it. This is America and we have the right to support the candidate of our choice. We only turned to the republicans last campaign because we liked the man running for office the last time around. I don't know the current candidate nor did he bother to campaign at my house. I am upset but I shouldn't let it bother me. I thought my dear firedns were above such pettiness. They even tried to get me to file a legal inquest against this same democrat during the last election. I never thought it was right so I never filed it. I guess I was their patsy.

Somedays I feel like giving up. It is so boring and lonely. I love my family but it is hard on them - especially my son who does not understand when I don't feel well. He can not remember when I was healthy but he also can not comprehend my illness. I cry at night thinking about what my family will do when I am gone. I picture the worst although I know my wife is strong. She deals with all the family problems now.

I keep getting jury duty mail and have mailed letters in the past from my doctor but they keep on sending the letters and threatening jail. Some filing system they must have.

I work on my genealogy and try to keep a smile on my face. I try not to go out of my mind with the monotomy of my life. I keep trying.

Posted by msainfo at 1:18 PM EDT
I'm fine, how are you?
I'm Fine - How are you?

There's nothing the matter with me,
I'm just as healthy as can be,
I have arthritis in both knees,
And when I talk, I talk with a wheeze.
My pulse is weak, my blood is thin,
But I'm awfully well for the shape I'm in.

All my teeth have had to come out,
And my diet I hate to think about.
I'm overweight and I can't get thin,
But I'm awfully well for the shape I'm in.

And arch supports I need for my feet.
Or I wouldn't be able to go out in the street.
Sleep is denied me night after night,
But every morning I find I'm all right.
My memory's failing, my head's in a spin.
But I'm awfully well for the shape I'm in.

Old age is golden I've heard it said,
But sometimes I wonder, as I go to bed.
With my ears in a drawer, my teeth in a cup,
And my glasses on a shelf, until I get up.
And when sleep dims my eyes, I say to myself,
Is there anything else I should lay on the shelf?

The reason I know my Youth has been spent,
Is my get-up-and-go has got-up-and-went!
But really I don't mind, when I think with a grin,
Of all the places my get-up has been.

I get up each morning and dust off my wits,
Pick up the paper and read the obits.
If my name is missing, I'm therefore not dead,
So I eat a good breakfast and jump back into bed.

The moral of this as the tale unfolds,
Is that for you and me, who are growing old.
It is better to say "I'm fine" with a grin,
Than to let people know the shape we are in.


Posted by msainfo at 1:04 PM EDT
Wednesday, 8 October 2003

I am in the midst of updating the site. It is going to be sleeker, neeter, modern, professional and more informative. There is more information becoming available believe it or not - not much but it's coming out. Please be patient as I add new java navigation menus, buttons, update my email to Please note this because it may be wrong on some pages for a while.

I have pages in limbo on my computer that need to be posted and organized in to section. Links to other sites will pop up in new windows so I force you to stay on my site.

I have one MSA site, two genealogy sites, I have just resumed my roll as findraising leader for People Living with Parkinsons amd I'm transcribing the 1850 census of Rutland County Vermont for UsGenWeb. I'm busy but my heart lies with this website.

I am constantly amazed at the input and visitors to this site.

Posted by msainfo at 10:12 PM EDT
Tuesday, 29 July 2003
You know you are getting old when..

When my mother died in 2000 of cancer I realized my parents weren't super people. Then I was diagnosed with this terrible disease. That fall, one of my best buddies, Joe D'Alessio died in a motor cycle accident. His father died a few years early sitting at the dinner table. Joe was forced to take over his father's pharmacy. I knew Joe since my first semester of college. I decided to jump right in to the collegiate scene by joining a fraternity. Joe pledged with me. He was in his second year. We became close friends over the years and I miss him.

When I was in Pharmacy School we had to work x amount of hours in a Pharmacy setting. I worked part of those hours in Old Saybrook. There I met our most famous patron -
Katherine Hepburn.
Everyday her secretary would stop by and pick up a couple of New York Times. I guess so they didn't fight over the various sections. As you probably know I love old movies. I was shocked when she died. This has been a devestating year for some of my favorite stars -
Gregory Peck,   Peck played one of the most credible actors I've ever seen. How about when he plays Nazi Dr. Josef Mengele in "The Boys from Brazil". I loved him as Aticus Finch in "To Kill a Mockingbird and in the Hitchcock thrillers "The Paradine Case" and "Spellbound". I was jealous of him in "Roman Holiday" when he got to spend time in Rome with Audrey Hepburn. His father was a pharmacist too. Then more of my favorites died this year, Buddy Ebsen, Buddy Hackett and now
Bob Hope.
I just loved him costariing with the like of Bing in the "Road To" shows and with Lucille Ball in "Son of Paleface". Others who have played an important roll are
Joseph Coors - brewer of my favorite beer (although it was not available on the East Coast until the mid 80's); Fred Rogers, someone we all grew up with; Hume Cronyn who I particualarly loved in a WWII movie in which
Spencer Tracy   escapes from 1936 concentration camp and he is helped by Hume (who died in nearby Fairfield, CT); and other famous people dying and making me feel old. I am a big Spencer Tracy fan (that comes hand in hand with Katherine Hepburn). He died shortly after "Guess Whose Coming to Dinner" in 1967 when I was four years old. A great movie that makes on really think. Heck, if my daughter brought home an elegant man like Sidney Poitier I wouldn't hesitate to marry her off whether he was red, white or blue." I love every Spencer Tracy movie I have seen - no he did not die this year but I have to emote my admiration of this man while I was on the subject of desceased actors.

Another way to make you feel old is to work on your family's genealogy and see the generations grow and grow. My second cousins who were babies when I was young are all at the marrying stage. It can also make you feel young, I was lucky to find several people who had already done the genealogy on relatives of my mother and so far the records go back to 16th century England - wow

Well, I fell good but old today - hope this finds you all well and feeling young!


Posted by msainfo at 12:51 AM EDT
Sunday, 13 July 2003

I keep writing that this is my biggest downfall. This weekend I couldn't get out of bed I was so sick. I get so run down. Siobhan was sleeping all day because she worked the nights and I had no one. Absolutley no one. My family hardly calls - they act as if nothing is wrong. I have no friends to depend on when the chips are down. And my beloved children were at there cousins all weekend. It's Sunday night at 8:46 PM and I am waiting for them to come home. They are about 2 miles away but I feel as if they were a continent away.

I wait for Sonny to bark announcing that someone has pulled in the driveway but it doesn't come. My wife left for work. Thank God she does work or we would be up the proverbial creek without a paddle. I just feel lost when she is gone. With the children gone I feel destitute. I admit I need my rest sometimes and I have a hard time watching them but we manage. I'm so tired I can't wait to go to bed. Please help me God.

Posted by msainfo at 8:51 PM EDT
Updated: Sunday, 13 July 2003 8:52 PM EDT
Monday, 30 June 2003
Fall down and yell ouch

I fell down on Thursday ruining my weekend plans. I twisted muscles in my thigh and calf causing pain - if on a scale from one to ten it would be a ten. My pain patch didn't even cut the edge. I called my neurologist and I got his Physicians assistant. She prescribed Vicodin and Flexeril.

I can't recall being in this much pain. I missed two picnics but did some genealogy research. I can't sleep. I'm exhausted.

Sara came home with a guinea pig and Aidan came home with a hamster from one picnic. Our friend apparently has too many critters. We are watching my sister in laws two little dogs while they enjoy Florida. Thus we have four dogs, four fish, 1 frog, 2 parakeets, a guinea pig and a hamster. I'm being over run by scaley furry things.

It's been a tough week but to see the kids with their animals makes me happy - lets see how long it takes before we have to remind them to take care of their animals. Growing up I always had animals - guinea pigs, hamsters, a ferrett, fish and a white rat named Ralph (after Ralph Cramden)

Posted by msainfo at 3:43 AM EDT
Saturday, 21 June 2003

This past Thursday my son graduated from Kindergarten and yesterday my daughter graduated from Elementary School. Getting to Thursday's event was not too hard but I was dragging Friday morning. It would be a ceremony over teo hours long and a reception with a DJ after.

My son's graduation was fun and cute, His teacher told me that she forgot to tell my wife that my son excells in reading. She also commented how much he has grown thoughout the year and how she now sees the fun-loving child we told her he was at the beginning of the year. In September she was worried that he was shy - Not my son! Wrong kid I thought. My daughter yes, but bot my son. He chose McDonalds for dinner but we forgot to tell him that the party would be tomorrow night along with his sister's. We all went to bed early.

Aidan woke up crying, "My special day is over!" My wife explained how we are getting a Star Wars cake (Sara didn't care) that had their names on it and he could pick out a video as a gift. Subway was the menu choice of Sara so that got him even more excited. She also told him that they were celebrating summer birthdays in his class that day. His is in August.

Sara's graduation statred at 9:00 AM with a video of baby pictures and updated pictures of all the 4 graduating classes - yes FOUR classes. The town has built a new school for next year! We have 6 elementary schools now I think. It was a humid day so I dressed in my khaki pants and new short sleeve dress shirt that Siobhan had bought me. I wore my sneakers since I knew I would be in my wheelchair anyway.

It was a beautiful ceremony and Sara was among the STAR students as they call them. The students have to have so many A's and a certain GPA. She looked beautiful in her dress and heels. I was so proud of my princess. After graduation there was a party with a DJ at the Marriott but we were late. Our friend's father passed out at school and Siobhan the nurse came to the rescue. The school nurse was unsure of what to do as she only deals with kids. Apparently he had a cardiac episode. The doctors told them that Siobhan probably saved his life.

We got to the party and not a single male parent would talk to me. A few of the women I know who work on committees with Siobhan felt bad and came over as I sat there by myself. It was still wonderful to see my daughter dancing with her Mom and her friends. More important than graduation was the fact that the Fifth book in the Harry Potter series came out today. She was up early to snatch one up.

I felt real odd at the party and it was not like I could get around and start a conversation my self. I was very hurt but tried bot to let that ruin the joy of the occassion. I waited till bedtime to cry.

Posted by msainfo at 12:32 PM EDT
Saturday, 14 June 2003
No one understands how lonely it is to be home all day and see no one but your wonderful wife and two great kids. Non one visits, no one calls. I hear all sorts of excuse. There even a quote in the Bible about negelcting ill people. I will have to look it up. I save it somewhere. It comes from the old Testament and it either blesses those that visit the sick or condemns those who don't visit sick friends. I can go places yet no one ever asks me. Sure I have bad days when I can't go anywhere but it feels like being in Jail. I am so lonely I cry.

Posted by msainfo at 8:00 PM EDT
Thursday, 12 June 2003
Gregory Peck
One of the last of my favorite actors to die! Spencer Tracy, Cary Grant, Harrison Ford, Sean Connery to name just a few of my favorites. Iloved Peck in To Kill A Mockingbird
I'm all alone as the rest of the family is at my son's Tee Ball Game. I ate a big dinner - two bowls of Beefaroni (that;s a lot for me) and now I feel like I could pass out. I think I'll just put the computer away and "pass out" in to sleep land. This humidity from the rain has made us all grouchy. Ok, falling asleep as I type zzzzzz.......

Posted by msainfo at 7:52 PM EDT

Newer | Latest | Older