April 29, 2013 The Making of Harry Potter!

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Monday, April 29, 2013

We were both up well before our 7am wakeup call. Clay well before me. Of course he went to sleep last night about 6pm while I held out until after 8pm. Clay had Lance Nabs for breakfast. I had coffee in the room and a protein bar. We had planned to head over to Euston Station at 8am, but we were ready early and went on over. We had seen yesterday, when coming off the Tube, a platform labeled Overland Line to Watford Junction and we had budgeted for that trip on our Oyster Cards. We bought a postcard stamp this morning in the station and then went to the Information Desk to find out where to find the platform we had seen yesterday. The guy advised us that we didn’t want to take the “local” out to Watford Junction. He pointed us to Platform 11 or 9 ahead and told us it was “direct nonstop” and that we could use our Oyster Cards and just board the Midlands Line Northampton train and get off at the first stop in Watford Junction. I was skeptical, but he was right. It was a nice and uncrowded train with no stops for us but ours. It left Euston Station at about 8:09am. This meant that we arrived at Watford Junction at 8:20am. The first shuttle bus operated by Mullaney’s Coaches to the Warner Bros. Harry PotterLeavesden Studio Tour is at 9:20am. We had a full hour to kill. We found the bus lot to the left where we needed to be, but it was far too windy and cold to wait there. We walked to the right of the station, where there was also nowhere to sit and wait. We went down about 2 blocks to the Junction Café. It was a nice, clean and quiet quick service place, but since they were not busy she took our order at the table. I had 2 eggs on 2 toast for 2.20 pounds and a latte for about that much more. (Here's a funny story. While in Ireland we met some Australians who said they couldn't eat fried eggs if they were not served this way and trust me, we didn't see them served this way again! I won't soon forget about it and I hope the 2 women we talked with got to make it to the Studios Tour.) Clay had hot tea and 1 egg, 1 sausage and chips. His was similarly priced. It was good food at reasonable prices. We used the rest rooms and paid up and walked back to the bus lot by the train station. There were about 65 to 70 people there by then, with more continuing to flood out of the station as trains arrived. There was no queuing, people were just surging and shoving when the first double decker bus arrived. We were the next to the last 2 people to get on the standing room only bus. I was very glad we had not decided to wait at the bus stop only to get shoved out of the way when it arrived! It was a longer bus ride than I expected. I am guessing over 15 minutes and we were on what seemed like a major freeway for a good part of that time, so we were covering some distance. We had paid for the Harry Potter tickets online (they are not sold on location for day of visits, btw – you have to pre-purchase online only and then pick them up on arrival – for this reason they ask you to arrive 45 minutes early). Our tickets were £29 each and a digital guide each for £4.95 each. But, we had budgeted double for the train and bus somehow. The train was £4.50 each way on our Oyster Cards and the shuttle bus was £2 for a return ticket. We did each have to make a purchase this morning to come up with £2 each in exact change for the bus. Clay bought a candy bar and I bought a 99 pence postcard airmail stamp.

We got our studio tour tickets from a self-service machine outside and then went on in to pick up our digital guides. They were like I-pods with audio and video features. The voice of Draco Malfoy was the narrator. We found them useful, though some people might just find them distracting. There was plenty of good signage and lots of videos to watch and listen to throughout as well as lots of employees talking about things, so you could easily do without. I think we both thought they enhanced our experience though. We got in line even though our timed ticket was for 10:30am. They admitted us. We saw Harry’s bedroom in the cabinet under the stairs from 4 Privet Lane while waiting as well as one of the Ford Anglias suspended from the ceiling in flying mode. When they let us in the first video room, there were at least 2 classrooms of little kids in there. They all had HP Passports! I had read about these and had meant to ask for one. The guides said they were supposed to look for golden snitches and told them where to find the first one and to make sure they got their stamps. (I will break the suspense and tell you that when we left I asked a question at Information in the lobby by digital guides and a girl there had a stack of them and a grown woman asked for one and she told her no, that they were only included in the child’s admission and she couldn’t get one! I think they would really enhance the experience for any age and I thought that was unfair!)

Next, you sit through a short introductory video with the actors that play Harry, Ron and Hermione. The screen slides away and there are the front doors to Hogwarts! You enter through the Great Hall. I will just say it was all amazing. They told us to allow 3 hours but we were there around 6 hours! We spent most of that time in the first studio, I don’t remember if it is J or K. This is where I found the stamping machines which were actually embossers. I had a small pad of paper in my purse, so even without the passport I collected what I think were all of the stamps anyway. That was cool. I think we also spotted all of the suspended golden snitches, but since we didn’t have blanks to fill in a little book, there is no way to know. This first studio was just jam packed and we got behind on our video viewing until we were in sight of the exit and found a place to sit. We should have gone another 15 feet and done the green screen experience first, but we didn’t realize it was there! By the time we got to it, there was about a 15-20 minute line. Clay didn’t want to do it, but I told him we will never be here again. I am doing it and probably buying the photos because they did not allow any photography here. You could photograph everything else. So, those photos and videos of the green screen area must have been the real moneymakers here! Clay did the first part with me and Bob and we got the photo of us in the Flying Anglia. Sadly, they did not record the flying Anglia video that they did before the still shot! I did the flying broomstick with Bob. I was in a Hogwarts robe. It was cool. It lasted a fraction of the time spent  lined up in front and in line to pay for photos on the way out of the green screen area. You pick up your DVD of video in the gift shop as you really exit the building for good. 

We used the restrooms and went outside to the back lot. We saw another Ford Anglia, Hagrid’s flying motorcycle with sidecar (which we never were able to get near due to the crowds!), the Night Bus, 4 Privet Lane, Harry’s destroyed home in Godrick’s Hollow, the wooden bridge at Hogwarts, Lord Voldemort’s grave (which appeared to state that his parents died 2 years before his birth!?) and a number of pieces of the Wizard’s chess set. We each had a small Butterbeer here. They were smaller and a different flavor than the only other place in the world you can get them at Universal Orlando! They were still good and it was afternoon by the time we got that far and it was needed. Clay had some chocolate Oreo-type nabs and they were delicious scooping the neverending foam heads off our Butterbeers. I also ate a protein bar. Clay’s digital guide battery died and we had to wait around for a new one to be delivered here. It was fine and we both got caught up to current on videos out there.

The next building had a restroom that was bigger than the one in the first studio building. I used both! Then we went through the Creature area, the animatronics, etc. as well as walking down Diagon Alley. But the real gem in here is the house-sized scale model of Hogwarts that they used for all the movies.  It is incredible and impressive. You can walk all the way around it on different levels from high to low and use touchscreens to learn more. While you are in there (if you linger, it goes from light to dark and the tiny windows of Hogwarts light up). A worker there saw us trying to photograph Bob sitting on the railing in front of the Boat House at the bottom and came over and offered to take a photo of all 3 of us. That was nice! Then we exited through the gift shop. It was incredible. It was much bigger than any gift shop we saw at the Wizarding World of Harry Potter in Orlando. It may have been bigger that all of the Orlando shops put together! It was crazy. Clay found an XXL t-shirt and I got a pair of 07 HP Quidditch pajama pants in XL. They were pretty short legged and sized very small, so we think they were kid’s sizing. We found the same kid’s Dobby t-shirt that I got in Orlando. We picked up our DVD and paid £33 for 2 photos and the video of me on the broomstick and then we returned our digital guides and left. We fought our way onto the next bus and managed to get seats on the upper level for the ride back to the train station. Minutes after we arrived a train to Euston Station left and we were on it. It made about 3 stops before terminating at Euston Station. It was not the Overland Line of the Undergound system either, but another Midlands Line train. It was the same £4.50 on our Oyster Cards.

We came back to the Ibis Hotel. We asked at the front desk for a dinner recommendation thinking of getting dressed up and going out. He gave us a Google Maps printout to his favorite restaurant NOPI. We went upstairs and Googled the menu on Clay’s phone and decided not. Clay asked his phone for Indian restaurants near our location and got about 10 hits on Drummond which is the side street running beside our hotel. We went out and walked along it and it was like Little India. We passed 2 Indian sweets shops, a spice shop, and a bunch of restaurants. I chose Drummond Villa and it was very good and reasonably priced in addition to its very convenient location. Clay had a Kingfisher beer and I had a white wine. He had chicken biryani and I had butter chicken. We also had pappadams and a garlic naan. They brought us each a chocolate with the check but they did not have any desserts evidently, as we weren’t offered any. We were pretty full anyway. We walked back over to Euston Station and bought Clay a Diet Coke, a package of chocolate croissants for the morning and Clay bought himself a bunch of chocolate to eat on the train trip tomorrow.

We have an early start and a tightly scheduled busy day tomorrow. We have a wake up call for 4am. We have to pack up and check out and catch a train to Oxenholme at around 5:30am. From there we change to the train to Windermere. We are supposed to arrive at about 9:30am and we are scheduled to meet our tour bus for our Lake District tour in our Inn’s lobby at 9:55am. I think that tour ends around 5 or 6pm. The next morning we have another very early departure for our train trip to Inverness. But that is later. Tomorrow is the Lake District. Weather is predicted to be like the last 2 days here. Partly sunny and starting out in the 30sF and rising to the 50sF. We are layering! At least there is no rain in the forecast yet. Knock on wood for the weather to hold just as it is and we’ll be happy campers.

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Tremor Update

On Thursday, 6/30/2013, I had an appointment at the PT department of Raleigh Neurology per Dr. Robottom's orders. I met Melissa, who introduced herself as a former ballerina and a Dr. of PT. She had me fill out about 5 pages of evaluation/questionnaire and then she interviewed me. She asked me if it was positive that I have PD. We discussed that since there is no definitive diagnostic test, that there is no way to be positive pre post-mortem. I pointed out it would be moot then for me and anyone that cares about me. She agreed. I told her 2 neurologists thought it was PD and my referring family doctor had diagnosed it as benign essential tremor for years before referring me to RN. I suspect he had changed his diagnosis at that point, but he didn't share that with me and we haven't discussed it since he sent me off. She gave me some physical tests and manipulated my limbs. When she was finished, she agreed that it was classic PD and not Parkinsonism, which is what we've lately been calling it at RN. She said she questioned it at first because one I was not in bad shape and two I was the youngest PD patient she had seen. So, I guess at this point so far we have a consensus of PD for what that is worth. Anyway, she taught me a series of exercises called LSVT BIG to be done in repetitive sets on both sides every day with some hamstring stretches. These exercises are meant to combat the rigidity of dystonia. They take about 15 minutes or so to do. I go back next week to prove I have learned them correctly and that is the end of my PT sessions. I see no reason not to continue to do the exercises at home. Melissa also strongly encouraged me to find a recumbent stationary bicycle to use daily. She says with BIG, that recumbent biking have been shown to cause improvements in PD patients as well as slowing the progression of symptoms. We're still thinking about bike options.

I picked up my generic Artane this afternoon at Kmart. $7.50 for 90 pills which makes this the most affordable PD prescription yet. I will start tomorrow morning at breakfast on the 21 day weaning on schedule and see what happens. The side effects sound debilitating, but hopefully since this is not a dopamine drug I will not have a problem. We'll see. More later.

April 28, 2013 flying to London

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Saturday & Sunday, April 27 & 28, 2013

Today we used Triangle Transit bus for the 1^st time to RDU. It worked out fine. It was busier than I expected for a Saturday afternoon, but it only runs once an hour then. We had never been able to use it before because it doesn’t run at all nights and Sundays. Anyway, for $2 each per trip, it is cheaper and just as reliable as any other method. Clay drove me and the luggage down to Moore Square Station to the purple columned Rte. 100 shelter and then he took the car home and parked it in our own driveway and walked back to meet me about 10 minutes before the bus arrived. We will look forward to using the bus on the way home on our return.

AA’s direct flight to Heathrow was problem free. It was a fairly full flight apparently because last night’s flight was canceled. There were a lot of disgruntled people sitting around us complaining about how AA handled things last night. But, we have no complaints. Luck of the draw, I guess. We were pleased with the Economy Plus seats that we paid extra for, that made the trip easier. We paid an extra $98pp for these seats coming over and $88pp for the return flight. So, it was definitely worth the extra money. We have seats 13 J & H both ways. But, frankly it is just under 7 hours and it was fine. Of course, any red eye flight is stressful, but it was alright. They showed Rise of the Guardians, a weird little animated film about Santa, Easter Bunny, Sandman, Tooth Fairy, Jack Frost and the Bogeyman in a battle between good and evil for the hearts and minds of children. I watched it and Clay watched his tablet with Pride & Prejudice again. I was looking forward to The Big Year, a comedy with Jack Black and Steve Martin, but they waited until about 3 am London time to start it and I couldn’t stay awake. Of course, then I couldn’t really sleep either! About the time I was getting comfortable with sleeping, they were delivering orange juice to wake everyone. Oh, for dinner last night we had chicken with rice for Clay and I had cheese tortellini in pesto. Both came with salad and white or red wine. Really awful wine, but they were not charging extra for it either. This was served after sodas (or whatever) and a small snack sack of pretzels, nuts and crunchy things. It was all good. For breakfast, they served a croissant with butter and strawberry jam and a raspberry yogurt. Coffee and juice, etc. Again, all good and no complaints. We must have arrived early because we spent about an hour making 2 big loops over southern England before approaching London. Then the most amazing thing happened, we flew directly over central London and then hooked a turn right by the London Eye and flew down the Thames by all the major landmarks! We spotted the Millenium Bridge, Big Ben, Parliament, Westminster, Buckingham Palace, St. James, Hyde Park, Royal Albert Hall, Kensington Palace, I saw Kew Gardens after Clay quit looking and about 5 minutes before we descended to land, I swear I saw Downton Abbey or Highclere Castle. We saw lots more, but that hits the highlights.  The only hitch came as we tried to exit the plane. The jet bridge was not working and it took about 30 minutes to get the door open after the Captain turned off the seat belt sign. Then it was a very long walk to immigration and customs and a very, very long line to be cleared to enter the UK. I guess this is true everywhere anymore, but there were a lot of people queued for entry!

It was over an hour and a half after our luggage was removed from the plane before we got cleared to go claim it. We were concerned that they would leave it on the carousel that long, but I guess the luggage people knew we were delayed a ½ hour getting off the plane and then had long lines in immigration. We all just walked right through customs though.

Leaving  Heathrow, we bought an Oyster Card for me and put money on Clay’s and took the Piccadilly Line of the Tube into London.  It is about an hour ride. You can get in faster on the Heathrow Express, but it is much more expensive and we were in no rush since you usually can’t check in that early anyway and you’re too tired to sightsee! As we neared Green Park station and the Victoria Line we had intended to get off and switch to, the conductor announced that Victoria Line was experiencing severe delays. We stayed on 2 more stops and took the Northern Line to Euston and our home station for the next 2 days. We failed to get a map from the station to the ibis Hotel and wandered unnecessarily for a bit, but we got here alright. It is really convenient now that we know the way. The room is typically small as one expects in Europe. But, it is clean and quiet. Internet is not included. One bad thing is that it has a very high tub with a shower in it. The tub floor must be 8 to 10 inches above the bathroom floor and while it is difficult to get in, it is nearly impossible to get out of it and you are wet then. There are no grab bars anywhere in there. Something for short or mobility challenged people to consider. We both also dislike no tissues and only one trash can which is in the bathroom. The other weird thing is there is no soap or shampoo. Just a tiny bar by the sink and then a dispenser on the shower wall that is to be used as both shower gel/shampoo. Yuck!  Incredibly, this no soap for the bath/shower held true for almost every hotel on this trip. I mean how much money are they saving withholding that little bar of soap? We had booked online and prepaid £148.75 for 2 nights at the ibis London Euston St. Pancras at 3 Cardington Street. 

We were able to check in at our 10 am arrival instead of the published noon. So that was good. We were both so exhausted that we couldn’t formulate a plan. I had hit a wall earlier after the change of Tube line caused us to have to haul our bags up a bunch of stairs and I really just wanted to go to bed for a while. Clay and I both knew if we did though the day would be completely lost. It was a sunny busy Sunday in Central London and we both were freezing! After a false start or 2 we headed out with a plan. Clay removed the sim card from his phone and our 1^st order of business after unloading our luggage was buying a prepaid data sim card.

We returned to Euston Station and used the Fast Ticket machines to collect all the train tickets we had purchased from multiple sources over the Internet. It was amazingly easy. I still claim it would be even easier, if you just got on your train with your booking number and credit card and that sufficed without all the nonsense of tickets at all.

Clay had found an O2 store that he thought was nearer than it was. For me, we would go to King’s Cross Station where I had read they put a Platform 9 ¾ from Harry Potter. Getting the sim card and getting it to access the Internet took over 2 hours. It was not easy. But it is done and hopefully worth the trouble. I think after a dozen or so attempts that we finally got an email off to Mom to let her know we arrived safely. Clay wanted to walk to the British Museum. We have both been before and he didn’t have anything in particular he wanted to see. I argued it was too far and too big to cover territory we already remembered seeing. I was for the British Library which we had done in 1984. It was on our way and Clay did not remember it at all, plus it would be a quick visit. Then Clay could get his fish and chips and we could go to bed! We have an early start tomorrow to visit the Warner Brothers Harry Potter film studios in Leavesden. We will use our Oyster Cards to get there and back too. Watford Junction is where you catch the bus to the studios and that is the last stop allowed on the Oyster Card. So, that is convenient.

Speaking about Oyster Cards, it turns out that when you pay with an Oyster Card that you get about a 50% discount on your fare on average. We did not realize this and used the Underground website to get fares for the trips we knew we would take on the system to estimate the amount to put on the Oysters. So we wound up with about twice the money loaded as we needed. I mention this because you can’t get your money back. If we had loaded less than we needed, we could have added more, but you can’t subtract from the amount except by using the card. The turnstile shows how much they deduct from your balance when you swipe your card as you exit the station at your destination. You have to look quickly though!

The Platform 9 ¾ had turned into a genuine tourist attraction with a zigzag queue and a professional photographer and aide. It was very busy and a long wait, so just Bob and I posed and Clay took pictures. We did not buy the professional’s photo from the Harry Potter 9 ¾ gift shop that was about 20 feet away. I don’t think they probably had anything that you couldn’t get at the HP theme park at Universal Orlando or at the studio tour tomorrow, except that Platform 9 ¾ photo. But they had some nice stuff. Clay would have gotten a t-shirt if they had run a bit larger. Too bad. I kind of didn’t like that it wasn’t just in the station but had become a sales tool. On the other hand, they were providing school scarves as props and the aide was holding the end and flipping it up to give motion to the photos as well they were letting you take your own photos and there was not pressure to buy theirs, so I can’t complain about it too much. I just expected a half luggage cart sticking from the wall and a sign though.

 Oh, I used my annual Starbucks $10 gift card from Stuart Jones (our homebuilder) to buy a London mug. Now I have to carry it for 24 days! They told me they didn’t have a box for it after I coughed up the remaining 50 pence I needed to complete the sale. I have bought a bunch of these mugs in my travels and never have they not boxed it. It was priced at £6.75 and they took my whole $10 plus some change. I meant to ask Clay if that was a fair exchange because it is one of the features of US Starbucks cards that they are generally accepted at any store almost anywhere without exchange fees.(I just checked online and £6.75  should have been worth $10.19 and should have paid in full for that mug!) Anyway, we have learned the hard way in the past that when you see something you want to buy because later you won’t find it again. So we have the mug checked off our list, even if it is prematurely. Thank you again Stuart Jones!

The British Library was amazing. We both think the building is a new one since we last visited in 1984. It was very plain, modern and incongruous next to the Victorian pile of St. Pancras/Kings Cross but not unpleasant. The renovations of Kings Cross offer a free standing example of old and new mixing dramatically. Anyway, we saw the Magna Carta again, some illustrated manuscripts, some DaVinci manuscripts and a notebook of Jane Austen’s as well as her portable wooden writing desk, which was a surprise and just exquisite! They had a wonderful Pride & Prejudice t-shirt in women’s v-neck style and I really wanted one, but the XL (the largest) seemed that it would fit me more snuggly than I would like, so we only bought a postcard there. Now to find a stamp… hmmm.

Clay saw a very busy place called O’Neill’s across the street and wanted to go have dinner. We did. He had fish and chips. We shared a pair of mini pasties as starters. We order one pulled beef and red wine and one mint with ground lamb. We could not tell any difference in the taste even though they had very different appearances and textures. Creepy. I am probably off meat pies, though Clay has plans for me to have lots of them as he has fish & chips everywhere! I had BBQ chicken breast with bacon and cheese, peas and a flat mushroom and chips. (Chips are fat cut French Fries over here.)  It was edible, but weird. Clay said the mushroom was very woodsy. Gross.  As we were sitting there waiting, a table of women near us was getting ready to leave and one of the women brought over an extra coupon they had printed off the Internet for a free Strawberry Bailey’s Sundae. That was very nice and thoughtful. Neither of us like alcohol in desserts, but Clay ate most of it since it was free ice cream.  Our waitress at that point told us that she had spent 10 years of her childhood in the RDU area and that almost everyone in her family was a Carolina alum. It is a small world. Tourism is really rampant here and everyone we met here was actively making anyone they thought could be a tourist feel welcome and helped. It is really amazing.

I am going to call it a day now. More tomorrow!

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Tremor Update

Well, I had a pretty thorough exam and interview this morning with Dr. Robottom. He thinks it is classic Parkinson's Disease, but the fact that I haven't responded normally to any of the 3 most commonly prescribed treatments troubles him. He had 3 things. One is to test for Wilson's Disease. He says it can present like PD but is treated differently because it is caused by a buildup of copper in the brain. He says if it is WD, it should have shown up on the MRI, but that they can also rule it out with blood and urine tests. So, they drew a vial of blood and I start a 24 hour collection of urine in the morning. Two is to learn some physical therapy exercises to work on muscle tone and battling rigidity. I go tomorrow afternoon and he says I might be asked to return once or twice, but it will be up to me. Three is a prescription for 2mg of Artane or trihexyphenidyl with a 21 day chart for going from a 1/2 pill daily to 3 pills daily. He says if I feel the positive effects at any point in the process I can stop increasing before I get to 3. He also says this is the drug he has the most patients refuse to stay on because of bad side effects like dry mouth, constipation and what he calls fog, mental slowing, trouble thinking or finding words. We'll see. He sent it to Kmart and I probably won't get anything from them before next week if they hold true to form.

We did cover the big picture of the fact that I will not actually ever get better, that whatever it actually is doesn't matter to the fact that it is a progressive disease and the overall goal is just to slow down the progression and help manage the symptoms to maintain my normal lifestyle for as long as possible. We did not discuss what happens when we've gone beyond that. I go back to Dr. Carnes in about a month for follow-up.

 

Tremor Update

Sorry, I had forgotten about coming back with this. I did see Dr. Carnes on 4/23 and he did not want to try another drug and neither did I. He did refer me to Dr. Robottom within Raleigh Neurology. He is their movement disorder specialist. That means he did extra post-doc work in the field of Parkinson's Disease. The hope is that he will have some new direction or insight for us. I see Dr. Robottom tomorrow. I follow up again with Dr. Carnes on 6/25/2013. I will be back with more information as I have it.

Downtown Raleigh and BOB

I keep forgetting to write about St. Patrick's Day. I had won 2 free tickets to the Titanic Exhibit from the N&O. The Titanic Exhibit ends at the end of April, so we'd been looking for a good weather day to walk down to the NC Museum of Natural Sciences. We hadn't been since they built the additional building with the globe out front. We enjoyed the Titanic exhibit and got to touch a piece of the hull that was recovered. That was cool because in a month or so, we'll be at the Titanic Museum in Belfast where it was built. Anyway, we went to the new section of the building by walking through the pedestrian bridge over the street and that was weird. But, here is the special part. We didn't take Bob! He is still holding a grudge because he missed a great photo op. And because, you know, Bob. Here goes. There is a whale skeleton in there called Stumpy. Underneath her is a zodiac carrying a black dog wearing a life vest. The dog's name is Bob! He is a "whale scat sniffing dog". Can you believe it? The sign said he could "smell floating whale scat for a mile". Clay's comment was, "It floats?" I know! But, seriously, a mile?! What I was really thinking was, BOB? I mean they named a floating scat smelling dog, BOB? Is that a joke, like did they mean it to be a pun? I think I snorted. It was a busy day in the museum. It was Reptile Day. Way too busy in there and not in any good way. I was a little overwhelmed and failed to notice if there was any reproduction scat in the display. Since it wasn't real water, it couldn't have bobbed! Anyway, our Bob was not amused when he heard about it. I snickered every time I said Good Morning, Bob for at least a week. Then we all got over it. Still, though... Funny right?

Clay took some photos, but he never shared them. We also went to the St. Patrick's Day parade. It was a good day except for leaving Bob at home.

Here is a link. At the photo sequence, scroll down to Investigating Right Whales and then click the photo labeled to enlarge it. You can see Bob the scat sniffing dog under there. Enjoy!

Tremor update

Yeah, no this has nothing to do with road trips! I plan to post here about our trip to England, Scotland and Ireland too later and I guess it is a stretch to call that a road trip either. So much for my sticking to the theme...

First off, I should update by saying that about a week after stopping carbidopa/levodopa that the left leg kicking had stopped. So, that was good news. Clearly, it was a side effect of the drug and not a progression of my disease. It wasn't as bad as the first drug, generic Mirapex or Pramipexole. That one made me exhausted, headachy, gave me extreme sweats, visual hallucinations of fire at night and dangerously constipated. It did though the most to relax my right toes. Dr. Carnes pulled the plug on that one though.

I saw Dr. Carnes on 3/11 and he prescribed Ropinirole or generic Requip as the next drug to try. He said he has dozens more! I am not sure I am up for all that! I stopped taking Ropinirole today with permission from Dr. Carnes' nurse. I had been taking it for just over 3 weeks. It made me really tired at first, but the Pramipexole did too at first. So, I just kept taking it and by the middle of week 2 I had muscle burning. I felt like if you've been running and your leg muscles start to burn and you cannot get enough oxygen to them. Except this was all over my body, literally every muscle in my body, not just the muscles affected by the tremor but my entire body. By this week, I started thinking I was going to die from this. I mean I could not exercise for 3 weeks. I could barely get up the stairs or through the house, etc. Clearly, this wasn't going to be a long term solution and like the other drugs Ropinirole wasn't reducing the tremor.

I will go drug free at least until my next appointment on 4/23. Until then I have to say that the knitting I have taken up stops the hand tremor. I just wish something could stop my right foot from fisting under. It is the most painful part of the symptoms. Dr. Carnes' nurse today asked if I'd like to be referred to a movement specialist. I declined. Unless there is some holding still specialist... Anyway, she said I should be journaling to keep up with my medications and reactions and symptoms. I have loosely done that here and I will continue. I can use any good wishes. Thanks.