Weekly Check-In Nov 5-11, 2006

[steve m]

Its been a chilly week here in the Northeast..Highs in the 40's..Brrrr!

I saw my neuro on Monday, and he says that hes pleased with how Ive been doing..IMHO..Ive done better with some of the old symptoms, but new ones have developed..I noticed that typing isnt as smooth as it was before..I can only type with one hand..I cant type with my other hand at all..My hand feels like its fatigued, and a little less coordinated, so my pd has definately progressed to my other side..What Ive noticed is Ive just gotten better at doing the tests of motor skills that my neuro has do..And it means nothing in the overall way that Ive been feeling..I explained this to him, and he was surprised..According to his estimation he feels that the meds have really done their job, but the truth is that I have some new symptoms..not that the meds arent working..they are..Only we really understand how we feel

I got out fishing a few days this week..The weather hasnt been that great this week..Ive got a couple of guys who want to look at the boat..Im keeping my fingers crossed..;)

That about sums it up for me..How was your week?

Steve

[mamafigure]

Steve,
I will definitely keep my fingers crossed for you. Don't you think that your boat would make someone a very nice present - as in , some rich gentleman fiseherman could buy it.

It is scary when you notice a progression, even if others don't. I'm glad that you felt comfortable enough with your nurse to tell him. My situation isn't supposed to progress, yet I have been noticing tremors off and on in the other hand this week.

I am still playing patient, seeing the surgeon and a specialist on Tuesday and Wednesday, respectively. I'm afraid that D-day is approaching. Oh, I did manage to eat some supper last night. I've lost about 10-12 pounds since getting sick, but could stand to lose more so am not overly concerned.

Mama

[Eve]

Steve I know the feeling when you know you are progressing with P.D. I find that my meds don't last for very long, they seem to run out before its time for the next dose. Then I start having the cramping and twisting of dystonia. I'm sure my MDS will try to alter my meds when I go on the 15th of this month. Its quite the game we play trying to keep up with the ever changing symptoms and finding a medication that will treat those symptoms. Sometimes I handle it very well and other times it is very depressing. Like a roller coaster ride only I can't get off.

[CarolynS]

Saw "Infamous" today. An intense movie. How much is fiction and how much is non-fiction...I have no clue. :confused:
What starts out as the irreverent journey of the openly gay writer Truman Capote to the middle-class world of 1950's Kansas, where he goes--with his childhood friend Harper Lee--to research the murder of the Clutter family, turns to something altogether darker when Capote forms an intense and complex relationship with one of the murderers. In doing so, he produced his greatest work, "In Cold Blood," but at a devastating personal cost. http://movies.yahoo.com/movie/1808727824/details

Mild cold here in south central Pennsylvania...50s days/20s&30s nights. No wind today...:D ...the wind can be quite fierce, causing the temp to drop by 10 degrees due to the wind chill factor. I have a feeling Dale can identify with wind chill factors, relative to temperature.

My mother always has the most interesting questions to ask me. She called yesterday to thank me for her 81st BD flowers I had delivered on Friday. While her questions are about PD and diabetes, she never refers to either directly. Yesterday it was, "How are your pills working these days?" I asked, "Do you mean am I doing okay?" She says, "Yes, are you doing better?" Better :eek: ...Mother's...they always want the best for us "kids." (I am four weeks shy of 58...LOL.)

I always get a hoot out of my mother's questions :rolleyes: . It has changed though, which is refreshing. For years the weekly question was, "How is your health?" To that she meant, how is your PD and how are your symptoms?

Good thing she doesn't ask me if I almost burned the house down recently in an attempt to cook :eek: , or how many times I have forgotten my regular morning medication, or how my mental health is...the latter is not good at all. Two years ago I left a Pyrex (thank goodness it was Pyrex) pot on a High burner ALL night. I put the burners in the oven that morning and vowed never to turn one on again, but I do from time to time.

[EmptyNest68]

While Phoenix finally starts dipping into the 80's, Northern AZ where I am is in the 60s/40's, and beautiful. The trees are all turning color and the air is crisp. However...I'd rather be in Puerto Vallarta, lounging in the pool overlooking the ocean! My husband and I returned from a trip there on Tuesday (we went for a friend's daughter's wedding) and fell in love with it. Our brother in law came also, and caught an 8 1/2 foot long sail fish! He is having it mounted. It was a blast.
My daughter, who just turned 18, has been in an apartment with a friend since August. This is not working out, the friend had another friend come in (without first discussing it, and then they wanted my daughter to pay half of the rent, instead of 3 ways) and 3's proving to be a crowd. My daughter is not on the lease, and not leaving her room mate with any overhead, so she will probably be moving out the end of the month.
I have been off my meds since March this year (carbidopa/levodopa). My symptoms did return, thankfully don't have much shaking or anything, but am very stiff, don't sleep well, have pain most of the time, balance is bad. I can still work full time and do most of the household work. Just am slower about it. My doctor left Barrow's in Phx and moved to a facility in Sun City, I have not been able to make an appt yet, and really need to. Walking every day and Pilates helps, but never seem to limber up!
Hope the week is going well for everyone..take care and God bless. Stay warm.

[vlhperry]

Hi Steph,

How you can continue working aand take yourself off your medications sounds dangerous to me. Then when I started this disease I also flirted with the dangerous side of life. Is your daughter thinking of moving back in with you? I have a 31 year old son who is a truck driver who comes home every now and then. He thinks of our home as his home base. He is in Texas now. He calls about 3 times a week to touch home base. He plans his trucking schedule to be home on holidays.

Steve, you must be getting the cold air we had last week. Don't worry, it is going to dramatically improve. Winter hasn't set in yet in Minnesota. For the past 4 days or so it has felt like early September with temps in the 60's and 70's. To make it even better no strong northern winds. It changed to day though. Took the dog for a walk this A.M. and the winds were out of the North again. Only wore a sweatshirt and almost froze to death.

I also saw my neuro yesterday. She thinks I am also doing fine. Considering it has been 17 years, I am actually doing remarkably well.

Love,
Vicky

[EmptyNest68]

[QUOTE=vlhperry;22051]Hi Steph,

How you can continue working aand take yourself off your medications sounds dangerous to me. Then when I started this disease I also flirted with the dangerous side of life. Is your daughter thinking of moving back in with you? I have a 31 year old son who is a truck driver who comes home every now and then. He thinks of our home as his home base. He is in Texas now. He calls about 3 times a week to touch home base. He plans his trucking schedule to be home on holidays.
((Hey Vicky-glad you are doing well, all things considered. My daughter lives about 5 hours south of me, she may move in with her dad, who also lives down there, temporarily. My kids kind of gravitated toward their dad's hometown a few years ago, and fell in love with it...it's much larger and has much more to do than where I live. Plus, the rest of my family is down there, and they love to see my kids as much as possible. I don't know about staying off the meds, have been experiencing what must be dystonia and lots of cramping feelings in my limbs. Exercise helps a bit but am always so rigid.
Keep up the faith! Love Steph))

[judytiger]

Tiger's neuro was pleased with his apparent strength increase, his GP mentioned his better color and his bloodwork showed no border-line anemia.

Because of scheduling, the two appointments hit close together - it was great to receive two positive reports from his docs.

Back in early September, he was supposed to have extensive neck vertebrae fusion but "coded" as sedation was increased on the operating table. Turned out that his coronary arteries were badly blocked. Stent was inserted into one and he has been on serious heart meds since the event.

While his GP has been seeing him frequently since Sept, this was the first that the neuro had seen him since August.

Neuro also put him on a dose of Parcopa(25/100) at night to even out the meds - he still takes the 5 Sinemet(25/100) during the day. Even after just one week of this, he seems a bit "more even".