Nope, I haven’t been journaling. The Neuro has adjusted doses of 4 of my meds, stopped one and is waiting for a month to increase my Permax. He changed my blood pressure med, stopped Symmetrel and Eldepryl, changed my daily Vicodin ES to Oxycontin 10mg, a potent narcotic analgesic and my endocrinologist has changed my diabetes medication. Are they working? I feel lousy, unable to move at times without a wheelchair. The Oxycontin knocks me out so I cut my dose from 2 tablets a day to 1 tablet a day.
The reason I posted was something made me extremely happy. I had the article published in the areas major newspaper about PD, MSA, and my family. If you read under the Readers’ comments section, a Mr. Lanese of Cromwell, CT found our site through the newspaper. He read an article about a man in his state that had something similar to PD. That man was I. The number of phone calls and cards I received was also very heartwarming but the thought of driving someone to our website and this same person offering a donation proved one thing – the article set out to do what I intended it to do – awaken PD awareness in our communities. The article had 10 or so pictures of my family and I as well as being on the Front Page main article of our Sunday paper – a newspaper with an audience of about ¼ to 1/3 of the state. It covered almost 3 whole pages! I didn’t want it to be an article entitled “Poor Tim” but an article entitled “Poor us”.
People still don’t understand what MSA is and how it affects every minute of my day. I don’t have on and off times anymore – they are all off. The intensity varies from hour to hour. After 1 year, I can no longer do some of even the simplest tasks – putting on socks, eating, showering, picking up a handsome 3 year old boy to give him a hug and a kiss, take the dogs out. People wonder why I sleep so much. I sleep because I need to. I have two parts of my brain that are defective so I get run down quite easily. Do I feel sorry for myself – No! I enjoy everyday no matter how bad it is. I have had to change my bedtime and often I fall asleep when putting Aidan to bed at night. I also need a good 2-hour nap during the day. Some mornings, I can’t wake up and other nights I can’t sleep.
Is MSA getting the best of me? I would say so. Does it have me down? Thanks to Mr./ Celexa the answer is NO. We have started renovations on the house to make it handicapped accessible. I miss the days when I did these renovations. I miss hanging sheetrock, putting up molding, putting new clapboard on the house. That upsets my but it doesn’t depress me.
I’ve had to cut back a little on my Internet time. Instead I am studying some courses to enhance my web design abilities. I’m creating a new web site for my journal prior to my PLWP journaling as well as putting up interesting tidbits I’ve read and heard.
Last night I woke up in time to watch Politically Incorrect with Bill Maher. Now, I’m also a liberal but Bill and I don’t always see eye to eye. Especially when he starts bashing the Catholic Church and more importantly the Pope. In our religion, the Pope is the closest man to God. He’s is the mouthpiece for God. I know all the Christian religions were spun off from Catholicism due to the fact that we have a man who tells us what’s right and wrong. I respect every religion and everyone’s right to believe in his or her God. Who knows who is right? But Bill had me laughing. I got angry listening to the news today. George W. Bush is overturning many environmental decisions made during the Clinton administration – changing the standard for the amount of arsenic allowed in drinking water (it costs us money was the Republicans answer. I thought people’s health was more important), drilling in Alaska, and lifting the deforestation restrictions. Man I got angry! Again I address the concern – who does these guys in Washington work for. I know it’s for the people who line their pockets with gold and not those who pay their salaries. Does he care that stem cells could at the least improve someone’s quality of life? Anyway back to Bill – His joke for the evening was “What is the difference between Bush and a bag of cow manure? – The Bag.” I laughed my butt off. Then to add to the excitement of the show, one of his panelists was Adam West – Batman. He proved to be a very knowledgeable man. But then Bill turned me off with his legalizing Marijuana campaign and I turned the channel to American Movie Classics. Anyways enough of my political concerns.
I then turned on Oprah. Her guests were people who were survivors – a woman who house blew up as she avoided the flames by jumping in a pool, a man whose arm was bit off to the elbow by a shark, and a man who cut his fingers off and yanked his arm off after being stuck in his van for 2 days after a hit and run accident. I think we are survivors. Every day we get up not knowing what tricks our brain and medicines are going to do. Am I going to see those tarantulas that I know are not real? Is someone else going to see that man in her hallway (not naked)? Is it going to be a chore preparing for the day ahead? We are the survivors. We have to stay together and survive together. No bickering, squabbling and meanness like on the show Survivor (of which I have been addicted to since the beginning of last season. We need each other.
Which brings to mind one last TV show – The Crocodile Hunter with Steve Irwin on the Animal Planet Station. Here is a man that faces dangerous crocodiles, insects and snakes every working day and he enjoys it too much! He makes picking up a Diamondback rattler a game. Even his wife said he is probably the only man on earth who can calm down a venomous snake like he does. But each day he faces danger and enjoys the hell out of it.
Well I just spent the last 10 minutes watching a deer eating the apples we left out this winter. It was 6 feet away from Aidan and I. The forest around is soon to be “affordable housing” thanks to my developer “friend”. No more deer in our back yard. He already started tearing down trees so I videotaped the deer so we can remember when they used to come right up to our back door.
One of the reason’s I haven’t been journaling much is I’m creating a website about Multi System atrophy. I find many folks – even PD’ers don’t understand this rare disorder. It is a Parkinsonism and one can present initially with PD symptoms although not everyone does. It’s a rapidly progressive disease that doesn’t allow you to make plans for the next minute never mind the next day. It shortens one’s lifespan, causes early incontinence, low blood pressure, impotence, vision problems, and it’s delivered me unto my mortal enemy – depression although Celexa is God’s Gift to mankind. I will let you all know when it is done and I will continue to journal her but a copy of my journal will be posted at my web site. You folks get the pleasure of my whining, joking and sharing first! Problem is it’s hard to find someone with MSA to chat with due to the severity of the illness. I spend a day or two a week just sitting in my chair or bed feeling like crap. I have to get a laptop somehow so I can so my PLWP work away from the desk.
Like everyone I’ve been going through a rough period. I’m not feeling sorry for myself but helps strengthen me in my quest to help those with PD.
Recently I posted how I was fed up with everyone fighting and bickering on the message boards. I still can’t figure out why this happens. We say things when we don’t feel good but these things are dragged out in public. Unity among us is what we need.
Lonely here this weekend with most of my friends at the rally. I know you will all have fun and I wish I could have gone – in actuality I’m JEALOUS! I’ve relied on my friendships with you all to get through every day yet the only two folks I’ve met is my buddy Chy and Puff. I invite anyone to Connecticut to visit. It’s a culturally enriched state. My biggest problem and it depresses me is not seeing anyone but family. The only phone calls I receive are from this wonderful group and the only person who comes to the door is the postman! I won’t even talk to my sisters anymore because it is apparent their lives don’t include me. They hardly called and never visited even after being formally invited. My 71 year old father is coming down for Easter yet it might be sad – it is just a few days before my mother died last year. I did reconnect with my best friend (next to my wife) after losing him through moving. He is a salesman and comes to Yale to peddle his medical equipment so he stops by. I have known him since Kindergarten and we were inseparable. I was his best man and he was mine at our weddings. His marriage didn’t last but he is an interesting caring person. He knows what it is like to be sick – he has the HIV virus. The reason he divorced was he is gay. He is still and always will be my best male friend. My wife and I adore him. I also reconnected with a school buddy this past month via the Internet. He is running the website for my 20th class reunion and if you want o check out some great 1970’s pictures of me go to http://www.msj81.50megs.com/foley.htm. We wee good friends in Junior High but he fell into the drug crowd and he has been clean for a few years now. He is helping me with advancing my website design techniques. I also was surprised my m next-door neighbor buddy when he showed up to the fundraiser they had for my family. He is TV cameraman for the major news station in Vermont and his wife is an anchorwoman for the news. But days go by when I’d give my left eye for some human companionship.
Anyways – have to get to work on some PLWP fundraising and grant projects as well as my website.