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.

We'll miss this year's spring NC Rail excursion

We got our email this week from the NC Transportation Museum about their spring railroad excursions. Notice that "s" at the end! They are doing 2 trips this spring. Unfortunately, both of them conflict with our big spring trip that we've already got booked! Unbelievable.

In other news, I have stopped taking the carbidopa/levodopa medication early. It was causing my left leg (previously unaffected by the tremor!) to kick violently between about 9pm and 2am for hours at a time when we were trying to rest. I also did not think it was helping with the tremor that much, though it did make my handwriting big again. I am less than 48 hours off and I don't know how long it takes to clear the body, but the night time kicking has not stopped yet. I really was hoping and sure that the pills caused it and that when I stopped the pills the kicking would stop too. The left leg kicking seemed to have started within days of starting the pills and I hoped it was them and not some progression of my disease. We'll have to wait and see. Cross your fingers for me, please. I return to Dr. Carnes on March 11 and will be medication free until then. I am wondering about his Parkinson's Disease diagnosis. If I don't respond to the Parkinson's standard medications, then maybe it isn't PD?

We'll be posting here probably about our big spring trip after we return. I know it should probably have its own blog, but since the longest segment of it will be a bus trip, I think it can be categorized as a road trip. I expect to post the trip journal here later. Stay tuned.

Clay is still in India for a few more days and he may wind up having some more travel news to post online somewhere as well. Today some of his coworkers took him in a van on a road trip to Pondicherry. So, do check back.

Jim Corbett National Park in India

Clay is on his farewell, pre-retirement trip to Chennai, India for work. He finally got to go on a side trip to look for tigers in the wild at Jim Corbett National Park in the north of India. He was lucky enough to get to glimpse a tiger! Click on the link to his solo trips on the right. Or click here for his photos.

Christmas 2012

Photos

I know I am not timely with this post. I have no single excuse. Anyway, we have gone to Bonita Springs and are back! We had a great Christmas at Mom's with friends and family. I have some photos here. Clay got a new lens for his camera. It cost as much as his camera! That led to a post-Christmas visit and hike at Lovers Key State Park. We went because you are supposed to be able to see manatees, dolphins, eagles, alligators, etc. We did not. Clay saw an eagle and chased after it as it flew over, trying to get a photo but no joy. I won't hold you in suspense, scroll down for Clay's photos with his new lens of what we did see. All photos after the Christmas ones are with Clay's new lens. I did take some photos with Clay's old pocket Olympus but I haven't seen them yet. If Clay gets them to me I might post some for comparison!

In other news for the New Year, my neurologist has decided that the benefits of Mirapex do not outweigh the negatives of the side effects for me. I'm sorry he didn't make that decision 2 months ago when I did, but next week I start a new drug. Sinemet. Honestly, it sounds worse than the first drug. I hope I respond better with fewer side effects. Same dosing rules apply so the nifty pill timer I found will still work! If you're reading this, please wish me luck. Thanks.

Photos