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After 2 weeks of bad days I decided to call Anthony. He put me on Requip over the phone. I started off on 0.25mg 3 times a day
Today Requip increases to 0.5mg 2 times a day. I was ready to go to volunteer at school today but Siobhan had a fever and a stomach bug. I’ve been real tired – lot’s of tremors this morning. I have to make copies of my Social Security Disability info so I can mail it back. Foy Smith, who used to work at Hancock Pharmacy with me called. She had called Diane Kane to thank for sending some books home. She mentioned I was sick and Diane said, “what goes around comes around”. I had left the job last September after being robbed twice and I was sick of Michael Kane treating everyone like shit. Foy mentioned that I had done a lot for them and she said goodbye quickly and hung up on Foy.
Spent last night waiting for Puff (Stephanie Matchett) to arrive. She seems to have gotten lost several times. Finally went to bed around 3:00 AM this morning and woke up at 6:00 to find a call from her on the answering machine. She was at a Mobil station o the Merritt Parkway outside of New Haven, CT. I told her to wait until after Sara got on the bus for school but she took off, ended up in Milford. I gave her directions to our place from I-95 but she got lost and ended up on White Plains Road. I met her at Beardsley Park entrance at the Border of Bridgeport at around 8:45 AM.
She’s a nice person – a veterinarian who is on disability. She lives in St. Stephens, New Brunswick, Canada. She initially started out walking to New York City
Woke up at 7:00 AM and got Sara on her bus to school. Nancy, who I just met over the weekend and a man named Mark came to chat. She was very interested in a semi-private chat room just to shoot the PD bull. She’s a nice lady – 61 years old. She likes the voice chat because she doesn’t have to use her hands. Charlie was online before he was off to the studio for work – shot the breeze with him for a few minutes. Peggy was also online for just a few minutes. She invited me to speak to her group some month next year on a third Tuesday of the month. I chose April and told her I’d have excess baggage – my family. Then I seemed to have gotten overwhelmed with helping others. Sandra emailed the Listserv as well as Nan and Bren from PLWP, and myself about her difficulties and her battle against drug pricing and a trip to Capitol Hill. She wants me to go to Washington D.C. with her. I emailed a copy of her email to President Clinton and Vice President Gore as well as all the PWP I had addresses for and some of the major groups. Basically I said that I am sick and tired of hearing about Parkies with no help – we need resources – mental and financial counseling, how to obtain services, a place to get some cash when in a bind.
This got Siobhan going and she posted for the first time on the MGH board. PKU is her ID. She suggested collecting money – not a good idea. I told her we needed big money. Lil followed up on her post saying PLWP is going to be doing something about this. I had her email Nan from PLWP and she told Nan to call after 6:00 PM.
In the meantime word must have gotten around that I was part minister (or I should say priest since I’m Catholic). Everybody searched me out – people I’ve never heard of. One women’s mother had PD; another man was just a few years older than me and happy to talk to someone in a similar situation.
Nan called around 6:30 PM and I shared stories with her for an hour and Siobhan talked about me and she talked about how she wants the public to be made aware of PD. They talked for an hour. She told us to come visit her in Rochester, NY sometime. Siobhan must have made an impression with her tenacity.
I set up a chat room for Nancy on Yahoo but when I told her about it she never visited. Tried to work on website while post after post came thought PARKINSN LISTSERV. I think I’ll unsubscribe. I get a few tidbits every week out of it but I think the folks are older since they keep reminiscing about the depression. Hell, my parents were only babies back then. They tend to beat dead horse on the listserv.
Seem to have a lot of rigidity today. I hope I’m not progressing again – hopefully it’s due to the fact I’ve been stressed out. Although I tend to maintain an even keel I might breakdown if I have to increase a medicine again – worse yet add another.
I’m gaining weight due to the amount of pills I eat everyday. I used to wonder about people like me when I was practicing – “How do these people manage?” I would think to myself.
Got up around 5:00 today. Why has this week been so draining on me? Ever since I couldn’t go the Unity Walk on Sunday I've been a basket case. Not really depressed, not really sad - it's hard to describe. It's almost as if I’m a little maniacal. Only took 1 nap all week - that's unusual.
It's not like I haven't been getting out.
The best part is my short-term memory is really shot. I put Balbo outside to do his business last night and I forgot to bring him back in. Poor old soul, he's the best of the three dogs. Also the one we've had the longest. Zoey and her puppy, Patches, drive me nuts. They’re both too young and too fast for me. Balbo just wants to eat, sleep and be petted. The other two have to be chased around the house and I can't keep up. Bad enough trying to keep up with 3 year old Aidan.
Sara' school bus came at 8:00 AM instead of the usual 8:10 AM. He stopped for what seemed like 5 seconds, beeped then drove off. I told her to run but she missed it. Siobhan took her to school after we had a crying jag. She heard it was different driver and several kids missed the bus. She got Citizen of the Month for September in her class again this year. She always gets it in September, which makes me proud because she was picked out of 25 students and now the field gets narrowed down because she can't get it again. Like she's the top of 25 not 24 or 23 like the following students would be. She's taking violin lessons this year and has been picked again to be in Power Readers. Sara had a tough last quarter this spring- she dropped form an "A" student to a "B" student. Her father got diagnosed with PD and her grandmother died in April.
The teacher wrote that her grades slipped due to frequent absenteeism - she knew all Sara was going through. She could have put a little but nicer remark on her record.
Siobhan's father and sister Maura left for Ireland today. I wish I could go with them just to get away from here for a little while.
Everybody's looking for Puff today. John Lester has a post on the MGH Parkinson's Board.
Puff finally called around 8:30PM. Poor thing lost her license and bankcard. Her sister Pam drove her as far as Boston, MA.
Talked to Mark on the Internet tonight for the first time. He was diagnosed this past year and only takes Eldepryl - I'm jealous. I went into the MGH PD chat tonight and felt like I had leprosy instead of PD so after they all just left I went to Dumpster gang where they always go out of their way to be nice. I knew Wanda, Alton, and had met Bruce once before.
I let the dogs out again tonight and forgot. Luckily I remembered when I saw the empty dog crate.
I've been up since 4:00 am - got a whopping 2 hours sleep. I'm going to go lay down for an hour before I have to get up. Arthur the newly diagnosed man with PD that I spoke to Thursday is coming for a BBQ today. He’s 55 and worried about his physical and mental future.
My sister came on line - wonder if she'll IM me or duck out like she usually does.
My sister Sue calls and I can understand why she doesn't call all the time
but she sounds genuinely concerned when she does
call. Mary acts like this damn
disease shouldn't bother me because we all have our crosses to bear in
life. This cross is getting
pretty heavy!
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