I will re-start the weekly check in...

My past week stared on Tuesday when I began a five-day grand kids overnight ; along with my son in laws mom. Mom and Dad went to Boston for an academic conference (they are both in secondary education; he an English professor with Penn State).

Tuesday after school was VERY rocky, but as the week went on each day grew calmer. I had not been with the kids much since I was relegated to a non-babysitting grandmother position after my second unplanned hospitalization in 2007 (I became "undependable" and "unpredictable" reeking havoc on my son in laws school schedule). But, I will say that watching my 7-yr autistic grandson play with the hose in the backyard NAKED , was quite interesting. Didn't matter how may times I got him back into his clothing, by the time I reached the backdoor, he was already stripped. What a site!!

I heard through the grapevine one day this past week that Ceregene was re-calling the CERE-120 placebo group...haven't confirmed it officially. A placebo group patient called me to tell me. Protocol had dismissed them in December 2008, when the Phase II results had shown no reportable change in patient symptoms. But, now things have changed, and I for one an eager to "interrogate" my principal investigator with my list of questions in late June, when I go for my two-year evaluation. The placebo group was not to be followed up long-term (lifetime), as the treated group is to be. NeuroTalk: Cere120 Phase I Update


I have heard that treated patients have reportable positive change by the two-year eval point. I can say I have too and had not connected this with the trial. I guess my mind was so wrapped around the December 2008 report, that I just didn't think of it. So, June 24, can't get here soon enough...I also have another MRI then.

Our temps here are in the 80s, so i know is not far away!

So, how have things been for everyone else??

I had quite an experience last week. Last Monday morning I had a routine doctor’s appointment with my thyroid doctor. I was sitting in the waiting room around 11 am when I started feeling light headed and felt like I needed to lay down. Next thing I knew, I was lying on the floor on my face with a gash in my forehead and my glasses pressed into my nose. I had fallen flat on my face. 911 was called and since they were worried about a head and/or spine injury, I was strapped to a board and given a neck collar. As they started carrying me out, I started throwing up. I threw up more in the ambulance and then they said they were worried about a serious head injury because I was throwing up. So they decided to put me on a helicopter and take me to the Penn trauma center. I also threw up during the helicopter ride. At Penn, they spent 2 days doing every kind of test they could and I had to tell my story and my medical history over and over to doctors and students and nurses. At one point they were concerned about a possible heart problem because of something they saw on a chest x-ray, but the CAT scan was normal and they finally let me go home at 7 pm Tuesday. The diagnosis- I fainted and they don't know why. I think that I threw up because I get motion sickness. I had been looking forward to an interview for a music ministry job on Tuesday evening, but I had to cancel my appointment. I hope to be able to go for the interview this week.

Hi Chicory,
What a dreadful thing to happen, you did well to keep your cool and come out unscathed. We Parkies certainly see life!!
I am killing time in the (very) early morning waiting for the dentist to open. Last week I had a temporary cap fitted prior to a permanent one on 27th. Cost £400 ($560) for one appointment. Well the cap came off on day 1 and yesterday, a gold cap came off as well. I can't eat at present since two chunks of tooth have come off since. Both sides of my mouth are affected.
Unless I get it sorted quickly, it is going to ruin our holiday in Venice, going by the Orient Express in 3 weeks time. Think of those gourmet dinners and no teeth to eat them with!!! I can't take any meds when I go to the dentist, due to dyskinesia. Not easy with 18 years of PD under my belt.
As I said, we Parkies certainly see life!!
Ron
PS Thanks Stitcher for stepping in.

my wife is desperate to go on the Orient Express, I'm not so sure though. Can you let us know how it goes, I am very interested.

Have you been to Venice before ? If not then you are in for a treat. Try to get around on the water buses, they can get a bit busy though but if you can get the number 1 as it goes the length of the Grand Canal. Do this in the day and early evening to see the lights of Venice, grab an outdoor seat and enjoy the view. It is weird seeing the postman and the garbage disposal performed by boat. The view at the end of the Grand Canal when it opens into the sea is one everyone should see. Visit the islands as well, Murano and Burano, also accessible by water bus.

Anyway I am sounding like a Venetian tour guide so I will shut up.

Stitcher, it will be interesting to see how your Ceregene follow up goes, along with GDNF and Spheramine this had to rate as our biggest clinical trial bombshell.

Take care,
Neil.

Well, after what I have heard over the past week, I am not counting the CERE-120 trial out yet...or neuturin!...despite what was reported last December.

Stitcher - thank you for starting this thread again.

Chicory - That was a really aweful experience. I know exactly what it's like to get that dizzy and passing out feeling, and I've been lucky so far to be near enough to a couch or bed to plop down on before it's too late. Thinking about it, did you have much to eat prior to the appointment? Low blood sugar can do a number of things, which I've found out the hard way.

Good luck on your interview. I hope you have rescheduled it.

Ron - I hope you get your dental issues resolved soon. I'll make a bet that the dentist will still charge you for the replacements even though the original caps didn't work. It's like they do their work without a warranty. The trip across Europe by the Orient Express sounds like a really wonderful trip. I would love to do that someday especially as a railroad nut.

Well for me, I got hit pretty hard by the hot spell. I finally got a call back from my neuro on Tuesday afternoon. She said to me that I was stressed from the heat and it caused the Parkinsonism to become worse. After that I felt better mentally because you know what goes through your mind when different things happen!

My part time work schedule is nice, but killing me financially. If I could get some piano students, this would fill in the income, but then I'll be back being stressed again! Go figure. It's that never ending balance between finances and health insurance coverage against a workload that isn't too stressful.

Anyhow, I hope everyone else is having a good week.

John

Dental Issues...ugh!!...the bane of my existence right now!

I don't have dental insurance and haven't had it for well on 10 years or more. Yesterday I had my teeth evaluated and will hear the horrendous cost involved to fix my teeth next Thursday (next week). I have done my best to maintain them over the past 10 years or so, but this is not a perfect world.

But, to start with, I broke a cuspid tooth big time two weeks ago. The total cost to fix it...$1,975...root canal, etc...I am not in pain, but the root is almost exposed.

Now to find the money...yikes!!

When it comes to dental problems, I get bragging rights. At 55 I have had only 1 cavity. The other day I used my teeth to open something and chipped so my bragging rights are reaching their end I suspect.

Does diabetes cause low blood pressure.? Do a lot of us have it or are borderline? I am on Metformon right now but my physician says I do not have diabeties. I am on a antidepressant but am active and not depressed.

Thank you Caroline for keeping up this thread. I know how it is to be a limited Grandma too because of the inconsistency of PD. I very rarely get to see my grandchildren who live a few miles away. Their mothe will drive thirty miles to take them to her mothers for daycare, rather up the road to me. As a mother she has that right, do I shouldn't complain, but it hurts some days.

Still working out marital issues. The stress has put a downturn in my physical state, but this to will pass.

Paula, are you having swalling difficulties? Is that why you need a food tube? Take a break from advocacy not that your 23 and me tape is done. Take care of numero uno! **