GREAT NEWS!!! - My New Diagnosis Is ESSENTIAL MYOCLONUS!!

I finally got to talk to a nurse on Dr. Watt's staff today, and I now have an official diagnosis that I can take to insurance companies. I do not have Parkinson's, nor anything in the Parkinson's Family. I have what is called Essential Myoclonus. It is not a progressive disease, which is the best news of all.

They do not know what causes it, but the Primidone is doing a remarkable job of controlling my movements. So I look forward to continued improvement and taking my life back! I asked if it would be OK to add an extra half tablet in the mornings, because the dose wears off in the afternoons, particularly if I am more physically active or stressed. She gave me the usual precautions about not using it if I became overly drowsy, be careful about driving, etc., but they are leaving the timing and use of the half tablet up to me. I am to start it in the mornings and then move closer to lunch if I want to try it there after a week or so.

I have been telling everyone about how wonderful I have been feeling since I went on the Primidone and how truly blessed by God I feel. I have strong emotional ties to lots of online Parkie friends, and I would only wish that they could have such good news from their doctors very soon. I guess I'm going to have to add another section for research about Myoclonus to my sidebar now, and come up with a better name for this blog. I have been very active in the Parkinson's PatientLikeMe forum, but I imagine I will be spending more time in the Essential Myoclonus section of WeMove.com now.

I lived in their world for almost three years, so I have a perspective into what it is like to have Parkinson's that most people can never have, unless they actually have the disease or are very close to someone with it. That is a valuable perspective that I do not want to squander. I'm not sure how God can use me in regards to this, but I'm sure in His good time it will become apparent.

I have tried to chronicle my journey from the very first days of the initial diagnosis of Parkinson's, through all the struggles I had with my digestive system fighting against the PD meds, to modifying my lifestyle to keep me safe, to the onset of tremors that soon turned into horrible shaking. I've tried to present an accurate picture of what was happening to me emotionally, as well as physically.

I am proud of this blog and hope that it will continue to be helpful to those who read it. May God use me and this blog to good purpose.

No Mouth Twitch So Far Today

I moved the Primidone dose last night to eight instead of seven, in an effort to maximize the amount I would have in my bloodstream during the day. It pretty much wore off by about 6:00 last night, so that's not bad at all.

I plan to take it tonight at 9:00PM. I took the morning dose at 7:00AM and have not had any mouth twitching so far. My gait is slow but steady, my hand and foot are not shaking, and my shoulder is not jerking.

I have emailed two members of PatientsLikeMe who are also on Primidone to get their experience with it, but I have not had time this morning to do any other research about this medicine.

I've been busy with our Lost Toy Search Service and our own toy catalog, and I am trying hard to make myself get off the computer in the evenings. I've been watching TV and using the computer at the same time for so long it seems strange to just watch the show. I am finding the long strings of commercials particularly irritating, though, as that's when I normally get something done on the computer. LOL!

I cannot express how wonderful the last few days have been, and I am so thankful to God for providing doctors and researchers with the skills and experience to find something that is helping me.

I filled out a new PDRS, which allows me to rank my current condition on a list of various Parkinson's symptoms. Up until this newest score, I was ranging around 25. The highest score of 32 was in January of 2006, when I was finally diagnosed with Parkinson's Disease, and when I could barely walk at all, even with a walker. My score now is SEVEN!!! I'm sure I ranked some of the answers on the optimistic side when I scored it, but I am feeling so great ... who cares!!!

Still Doing Pretty Well

I'm still off the PD meds, and I just updated my Profile on PLM. My PDRS score, which is a way of quantifying symptoms, is better than it was a month ago. Of course it's still a very crude way to put a score on something that really can't be scored. If you've ever had to tell a nurse or doctor how you rate your pain on a 1 to 10 scale, then you know what I mean.

Church is still hard on me, as the pews are not comfortable for me now. They should be, as they have a very good cushion, but the space between pews is narrow, and the backs are hard. Turning to look at the preacher while he speaks still aggravates my neck, too.

I've stopped using the TEN's until I can talk to the Physical Therapist. They told me not to put it anywhere near my heart, which makes perfect sense. But there have been several times when I would get what felt like a pulsing muscle pull where my heart is in front, when I have the electrodes near the bottom of my shoulder blade. That would put the electricity near the back side of my heart as near as I can figure. So, I'm doing without it for now.

The cervical collar and the exercises seem to be helping, at least.

I have noticed several times in the last few days that I had had a painful burning sensation at different places on my feet. When I grab the place and rub it out, the place goes numb for a little while. I'm guessing that the PD meds have been blocking some of the Peripheral Neuropathy pain that is common with that problem.

I'm in the process of checking out a new laptop I bought this weekend. It was an open box item, so I only have 14 days to be sure there is nothing wrong with it. Plus, it came from a big chain store who had put all kinds of software on it advertising their company. It even had a user with a password they hadn't bothered to tell me about. I got around that by reinstalling the original disks. But now, I'm still uninstalling all that junk the computer manufacturer lets various software companies fill the computer with.

Most people probably pay the store to get the computer ready to use, but I enjoy the challenge. Fiddling with computers has always been enjoyable to me, but the most pleasure these days comes from the absolutely wonderful feeling hubby and I both get when we can help one of the families who have told their story on our Plush Memories Lost Toy Search Service blog find a lost lovey. And, to do that, I have to have a computer. So, to get the best thing - helping people - I get to do the next best thing - working on my computer.

So, I continue to watch how my body is behaving, and working on the computer, too.

First Physical Therapy Session

I went back to the same PT I have used before, and I was fortunate enough to get the same therapist. She asked lots of questions about what brought on the stiff and painful neck. She manipulated my head, and we chatted a bit about how my diagnosis got undiagnosed. I gave her the link to Patients Like Me, and I hope she takes me up on the invitation to join.

She seems to think that the electrical stimulation (TENS) and ultrasound will help these muscles relax, and she expects to do some stretching exercises on Friday. Bless her heart, but she remembered that Friday was our Date Day, and apologized for messing it up. But DH will be fine with that, as this is only for a few weeks.

We did something this afternoon we have never done before. I made a smoothie! Hubby bought me a blender for Christmas, because I had said something about wanting to try some. I mixed a banana, raw spinach, a little parsley, some soy milk, and a touch of honey, and we both tried it. It wasn't half bad, and we both drank it all. Not bad at all for my first attempt.

It always makes me feel better when I feel like I am taking control of a situation, and getting the PT started and learning a way to improve our nutrition is a good start for one day. Yippeeee!

Less Computer Time = Getting other things done!

Well, I have pretty much stuck to my intention to stay away from places where PWP are describing their symptoms. I have visited the PLM site a few times, and even made a few comments, but I have been cautious about the type of posts I opened, to avoid reading about anything tremor related. I have not done any research on PD, either, other than to try to find a correlation between heavy steroid use with Parkinson's. This was not for my benefit, but for one of my readers, who asked some interesting questions.

My neck continues to be very stiff and painful, but I can put up with it, knowing I will be getting help next week when I start Physical Therapy.

I am pretty much caught up with posting requests for help on the Plush Memories Lost Toys Search Service, and we are over the Christmas rush on eBay. I still need to put a new post on our Yesterday's Memories blog, and there is always work to do on the BLOG VILLAGE TopList that I run.

So, I have been getting some much needed house clutter cleaning done, but there is plenty more that needs to be done. I would like to have the house straight for the New Year. At least it can start that way LOL.

We did have a great Christmas, seeing all of our family all at once, and enjoying being with our grandchildren. It looks like we actually managed to buy them some things they will enjoy, and that's not easy to do when they hit those preteen and teen years. They all have birthdays right after Christmas, so we will be seeing them again real soon, too.

Hubby gave me a blender for Christmas, so now I can learn how to make Raw Foods Smoothies, something I have been wanting to try for some time now. Jackie, from The Vegan Diet, clued me into The Raw Food Coach, and since we eat a lot of raw foods, anyway, I have been learning as much as I can about what foods are the best for me. I have been doing a lot of research on the high anti-oxidant Super Foods, and we are gradually changing our diet to include lots of them daily.

We have had a lot of fun at our house of late with trying to get our very spoiled (neurotic) inside cat to accept our two outside cats as occasional inside visitors. They are too young to leave outside all night when it is freezing, so we bought a pet cage for them. They don't mind being in it at all, which surprised us, but it sure makes going out of town easier. We keep our inside cat in the hall bathroom when we are gone, and now we can keep the outside cats protected, too. Our only problem is that Miss Queen Fluffy doesn't like having them inside. There have been quite a few fights between Fluffy and Mr. Salt. Miss Pepper stays out of the rough stuff, as she has some kind of nerve damage to one of her hind legs. She is the main reason we decided to bring them in on cold nights and when we are out of town. Fluffy surprised us last night and behaved the whole time they were in the house. Maybe she's finally adjusting to them, I hope.

One of my anonymous readers has given me a clue as to what my diagnosis might be, if it's not Parkinson's. So, I have started doing some research on Dystonia. Also, there was a new post today on PLM discussing Ataxia, and that sounds familiar, too. I already feel better, knowing that there are other conditions that my symptoms seem to fit. It makes me feel less like this is all going to turn out to be psychosomatic. I can't bear the thought that my body has been going through all this due to an emotional problem. With other possibilities in sight, I am in a much better frame of mind than I was yesterday, thank goodness. So, Marion, the glass is looking more and more like it's half full, again.

As always, I appreciate your prayers and concern, and love to hear from you, even if it's just to say HI!

Two Ruptured Cervical Disks - No Wonder I'm Hurting!

I talked with my Orthopedist's PA the other day, and she confirmed what I already knew. The disks are bulging on the two cervical vertebrae that are degenerating, and that's what is causing the pain and stiffness. She doesn't want to make an anesthesiologist appointment to get an epidural there until I have a chance to talk to my Neurologist. I see him Wednesday. I did ask that she talk to my Neuro's nurse, rather than expect me to relay messages. It seems that the ER did not send any information to him about my time in the ER in September, when I had the horrible drug interaction with a steroid shot. So his nurse was completely surprised to hear I had a bad reaction.

So, we'll be going to the hospital to sign the release form to get the records to take to my Neuro.

I continue to be concerned and in prayer for several Parkie buddies on the PatientsLikeMe site, who have been diagnosed with skin cancers. One has Melanoma, and the other has Squamous Cell Cancer. Both were caught early, with every reason to believe they will be just fine. We are all praying for their recovery.

There is another woman on there who's brother also has PD, who had unrelated surgery, and to quote her - "his brain is mush." She said he has already tried to leave the hospital. When I thought I was going to have to have surgery back a few months ago, I learned all kinds of scary things about how difficult it is for PWP to have any kind of anesthesia without serious side effects. Also, it is very difficult to get hospitals to keep the PD meds coming on time. And that can mean the difference between being mobile and thinking normally, and not.

I wore my new "Sunday" shoes today, and I really like them. They help with my balance, they feel good on, and they are unobtrusive. I doubt if anyone has even noticed that I'm not wearing dress shoes. I don't feel the least bit self conscious in them, so if someone has noticed them - I don't care.

I am having one problem, though, that came unexpectedly. Last night I noticed a red itchy place on my wrist where the back of the Timex watch is against my skin. I had noticed that the skin was getting slick and shiny there a couple of weeks ago, so I started taking it off at night to go to sleep. Evidently I didn't heed the warning in time, as I now have a nice round ringworm there. It's been holding too much moisture against my skin, as it is fairly tight. It's a big man size watch, and not particularly comfortable, but I was willing to tolerate it, because it is so helpful. I may end up taking the band off, and just keeping it in my pocket.

I have not been able to do much exercising for the last month, partly because of my neck, but mostly because my DH over did it and his Sciatica is acting up again. I've been so busy working on the requests on our Plush Memories blog that I have been sitting still more than I probably should be. I've not been doing the Tai Chi, either. I know I really need to get back with a scheduled exercise program, the way I was before.

So, some things improve, while other new aggravations begin. Not so different than what happens to everyone, right?

Standing MRI Tomorrow / Praying for Friends

Hubby went off yesterday morning to his stint on Jury Duty, only to be sent back home. All the cases for this week had been handled through plea bargains, and there were no cases!! He had to call back last night to see if anything had changed, and they dismissed all the jurors!!

So, I got busy making arrangements to have my MRI done, and it is scheduled for tomorrow. I'm going to call my Neurologist's office today and see if they have any suggestions, because it dawned on me that with this standing MRI, I would need to be still for quite awhile. That was not a problem with the knee MRI I had done at this same place. I was not having foot and leg tremors then, but I am now.

It just seems like this PD manages to worm its way into every single thing I try to do.

I shouldn't be whining, though, as I am so much better off than some of my Parkie friends are. It grieves me, for their sakes, to read of all the pain and problems that PD is causing some wonderful people that I care deeply about on the PLM forum and on the PD blogs I keep up with. I keep them in the forefront of my prayers daily.

Hubby and I are also extremely concerned about a young teen aged, very gifted and sweet boy from our church, who is seriously ill. He went to the doctor Friday, but the doctor ran all kinds of tests and could not find anything to explain how sick he felt, and sent him back home.

Saturday he was in the hospital with pneumonia. Monday, he was put in ICU, and yesterday he was airlifted to the ICU at Children's Hospital in Birmingham.

This single mom has a Downs Syndrome child, as well, so attending to the needs of both of them must be putting all kinds of extra strain on her during this scary time. Thankfully, she has family living nearby who can help her out. We spent a few minutes with him in the ICU yesterday, only to come home and find out about the airlift. I talked to her for just a moment or two in the ICU waiting room at Children's last night, and she sounded OK, but I imagine she is faking a lot of that calm.

So, I feel very small and insignificant at times like this, with my petty little problems. All we can do is keep them in our prayers, and offer to help in any way we can.

Looking for a Parkie Who Reads/Writes in Vietnamese

The Patients Like Me site I belong to has a new member, with very limited English, who wants to correspond with any PWP who can correspond in Vietnamese. He might also be able to talk to a Parkie who is fluent in French, but I'm not sure about that. Nope! He wrote me, and he does not speak French. Well, I was hoping.

When I Googled on the Internet, trying to find a Parkie who spoke Vietnamese, I found lots of articles about all the Vietnam veterans who were exposed to Agent Orange. It seems that there is a high incidence of Parkinson's among that group. With all the other terrible problems these soldiers have faced over the years from Agent Orange, this is just one more tragedy they have had to endure. My heart goes out to them, and to their families.

I would suspect that there is a high incidence of PD among the native Vietnamese population, as well. The Parkie I am trying to help find someone to correspond with is 51.

Please pass this request along, so we can help this fellow Parkie find an understanding friend.

No Such Thing as Status Quo with Me

We had a wonderful Thanksgiving Day with our whole family. Our older daughter and her hubby both love to cook. So they went overboard with the food, but it was important to them, as their first big family meal in their new home. I could tell she was getting all stressed, which is not good for her at all, but I sure was glad I didn't have to have them all at my house. Don't get me wrong, I love being around all of them... but I get way too panicky at the thought of having that big a group all at once.

Plus now, my house is not clean enough for me to feel comfortable entertaining. I have started trying to unclutter some parts of the house, but it took it several years to get in this mess, and it's not going to be clean overnight. Hubby says to just ignore it .... something he seems to be able to do quite well. It bothers me, though. Every time I try to tackle it, I get worn out before I've made a dent! LOL

Anyway, I did have an appointment with my Gastroenterologist this week. I am still having lots of belching and gas, although the elimination difficulties have improved considerably since he put me on the Bentyl. I had read some things on the Internet that made me ask about the Metamucil and Glycolax, as far as were they contributing to the gas problem. I gave him the printout showing the times I was taking my meds, thinking he might see something that I needed to change. He was flabberghasted. He said he had no idea I was taking the Metamucil and Glycolax in the morning - that I should be taking them at night!

He also said the loud belches were from swallowing air. I told him I knew I did that when I took my meds with a big gulp, because I had trouble swallowing them. He suggested I take them in applesauce, instead of water. And .... it works! I do have a little trouble getting the swallow to come, though, thanks to my uncooperative tongue.

My tongue has started some kind of tic. I'm lip licking, or lip sucking, or moving my tongue around, rubbing against my teeth almost constantly now. I mentioned this new quirk in the PLM forum, and one of the Parkies said she had been rubbing the back of her dentures with her tongue for 14 years! She's actually worn a hole in the back side of two of her teeth!

Speaking of the TAP, I am continuing to get 7 1/2 to 8 hours of sleep each night. My alarm watch is waking me up now to start my meds at 5:00AM. If I could just stay awake later at night, I would change the time of the first meds. But it's all I can do most nights to stay awake until 9. I'm toying with the idea of taking a short afternoon nap, but I will wait awhile longer before I try that, to be sure I have the sleep habit well established.

I am out of the muscle relaxer meds now, but they really didn't help a whole lot to ease the soreness and stiffness in my neck. So I'll be calling my Orthopedist this next week.

I'm still having a lot more tremors than I had before my trip to the ER. The tremor in my right hand is unpredictable, but strikes often and hard. If I stand still for even a few moments, my right leg starts a little dance all by itself, making my whole body bounce, and sometimes now it starts up even when I am sitting down. That was only happening at church before, where I was blaming it on being cold and the seat being uncomfortable. Now it's pretty much a given that if I'm standing, I'm dancing, and if I'm the least bit tired or upset, I'm jiggling as I sit. And walking still feels like I'm on Jello. I'm using the cane all the time when we go somewhere now, except for church. I'm still stubbornly holding out on that, as it puts too much attention on me.

I am going to have to keep track of the times of the day that all these tremors start and stop, so I can tell if it has anything to do with my meds wearing off.

So today, I can give my sleep problems an A, elimination difficulties a B-, stiff and sore neck a D, and tremors a D.

Requesting Your Prayers

One of the Parkies that I have become friends with on the Patients Like Me site has just had a positive diagnosis of skin cancer, and she is to have surgery on the 14th of November for a lesion slightly bigger than a half dollar.

Now another PWP on the Patients Like Me site has posted that she is getting the results this week on a biopsy for a possible skin cancer on her leg. That's 2 out of less than 700 who have reported it from the PLM Parkinson's membership.

The increased risk of developing Melanoma is one of the characteristics of Parkinson's that few people are aware of. I certainly was not.

The one to have surgery goes by the name of knoxgal, and the one to get the biopsy results goes by pokie too. I know they would both appreciate your prayers on their behalf.

Looks like I'll be making an appointment with a Dermatologist to get checked over from head to toe! Great, another doctor!! But I do think it is wise to have it done, under the circumstances, as I am covered with moles, thanks to my parents.

Waiting, But Not So Patiently

My Gastroenterologist is a very busy, very dedicated man, for whom I have the utmost respect. I know for a fact that he works long hours, because one of the times I went to his office lately, they couldn't find my chart. Then the nurse pulled it out of a big duffel bag full of files, and told me those were the ones Dr. B had taken home that night to work on. He had been reviewing my whole chart, hoping to find a pattern in my symptoms that would help him decide on a course of action. I had no idea that doctors took their work home with them. Considering they get calls in the night for emergencies, I always assumed that they tried to leave their work behind as much as possible when they went home.

So, I'm trying to be patient as I wait for him to call me back. I reported in to his nurse last week to let her know that the cleaning out he had me do with the GoLytely did not stop my problems with elimination or with the bloating and gas. She told me then to check back this week, after I had stopped the Amitiza, to see if that would help. Well, I called her Tuesday, and left a message that stopping the Amitiza did not change the problems. I didn't hear from her, so I called again late Wednesday afternoon, as she is usually so good about returning calls. She said then that Dr. B was going to call me back that afternoon, himself. So, I stayed close to home, with the phone on ready. No phone call. Well, like I said, I know he's a very busy man, so I waited until late Friday to call his nurse again, thinking maybe there had been a mixup on who was supposed to talk to me. She called me back just a few minutes later to say that Dr. B had just plain forgotten, and was very apologetic, and would definitely call me that evening. Still no phone call. I can't imagine him calling me on the weekend, but who knows.

I know I need to work on patience, as it is a virtue I really need more of. The old joke is that you should be careful when you pray for more patience, as the way to get patience is to deal with adversity. I guess my "adversity" right now is having to deal with these digestive related problems for over a year now, trying one thing after another, as the doctor ordered, with no relief yet. I'm definitely showing signs of depression, and I blame much of it on this unresolved problem.

There's no doubt in my mind that I am under medicated right now, as far as the Parkinson's meds are concerned. But there's no point in going back to the Neuro until I have overcome my difficulties with getting used to the CPAP, and until something definite has been accomplished with this digestive situation. As it is, I'm changing two things at once, which is not good science. In order to be sure what the cause and effect is on any treatment change, there needs to be only one variable at a time.

I wrote some time ago about how dealing with Parkinson's is like being in a clinical trial with one participant. I still think that is an accurate assessment of what it's like. After reading lots of comments and stories from other PWP, it is apparently true for most, if not all, Parkies. The doctors can only try things, never knowing exactly how any one patient is going to react to the meds, or their side effects.

And the depressing thing is, none of these meds work to improve the underlying brain deterioration. They only work on the symptoms. So far, no medicine has been proved to actually slow down or halt the progression of the PD itself, and there's not even a whisper yet of anything that can repair the damage already done, with the exception of claims made for stem cell therapy.

I do have one positive piece of information to report, though, and I try hard to end on a positive note. I mope about all this enough. Since brain fog is a problem I've had for a long time now, I was very curious when someone on the PatientsLikeMe site mentioned the idea of using brain training to improve their mental abilities. That started me doing some research, and led me to the MyBrainTrainer site. It was not very expensive to join for three months, and I figured I could give it a try for that long, and then decide if it were worth taking a year's subscription. They have a series of online brain exercises, set up like miniature games, that you work through on a planned schedule. I'm on Day 12 of the 21 day basic training part right now. My scores are consistently falling in the 25 to 29th percentile of all their participants in my age range. Not anything to brag about, that's for sure. BUT, here's the good part. The brain fog is beginning to lift, just a little. I'm not groping blankly for answers to questions on the Smarter that a Fifth Grader show nearly as often. I find I know the answers more often on Jeopardy, too, and I don't feel nearly as frustrated by watching these shows as I was a few months ago.

So is the BrainTrainer the reason, or the CPAP machine? I have no idea. Again, changing more than one thing at a time makes such a conclusion impossible. But I don't care, all I know is that I'm thinking better, even as my body is slowing down again from not having a strong enough PD med dosage in my system. I'm very grateful for that, and I cling to any positive outcomes as I try to work through this depressed stage I'm in.

Have You Ever Heard of Parkinson's PLUS??

One of my online Parkie buddies, Dan, has been diagnosed with Parkinson's Plus. There are also several PWP I keep up with on the Patients Like Me site who also have PD Plus. If you know someone with Parkinson's and the meds don't seem to be helping, they might find some ideas about what else could be going on at Dan's PD Plus Me blog. He has an extremely well written blog, with lots of great posts on many PD topics.

The post title will link you to the beginning of a series he plans on doing about each of the types of PD Plus. I'm looking forward to reading them all.

Get Help Paying for Prescriptions IF YOU DON'T HAVE INSURANCE!!

One of my new Parkie friends that I have met on the PatientsLikeMe site is knoxgal. She posted an extensive set of links for places to go to get help paying for Parkinson's meds, for those who do not have insurance. Some of these sites are for other than just PD meds, too. I asked permission to copy her post for any of you who either need this information yourself, or know someone who could make good use of it.

Bridge to Access:


Azilect:


GlaxoSmithKline


Needy Meds:


Partnership for Patience Assistance


Johnson & Johnson:

This is what knoxgal has to say:

Every site is different as to what meds they will cover. Most require the same thing and I am offering this info through trial and error. To get started you will need to contact them to get an application. Fill out the application and note the requirements needed. Number 1 -- prescription. Number two--verification of income. Number three-- a copy of W2 for the last year. Later, they have requested the last page of my filing with the IRS, showing your income and the amount of your refund etc.

Please note every site requires something different, such as your income, employment status etc. Once you have all of your forms filled out, and documents together, you need to get these to your doctor for him to sign them and he will get them into the provider for you.

I have found that they are really good about automatically sending you refills. You don't even have to request them. You usually qualify for free meds or discounted meds for a year. After a year is up, you do need to reapply.

I hope this is helpful.

I should think there would be a lot of folks who would find this information helpful, and I want to thank knoxgal for allowing me to copy her post.

PS Just to give you an idea of what a neat site PatientsLikeMe is, here's the public part of my information on the site, plus you can see what other patients have made public, as well. Right now, they are set up for patients with ALS and MS, as well.

Startle Reflex Does Me IN!!

Have you ever seen a small baby startle? Their whole body is involved, with arms and legs flailing wildly, looking like they can almost jump straight up off the table. Well, yesterday, I looked like that, and it was a very upsetting episode.

I've always been easily startled, so up until recently, I had not made the connection with my increased jumpiness and my PD. I've been attributing it to my insomnia. After reading about other PWP on the ParkinsonLikeMe site, I've come to realize that this phenomena is a fairly common PD symptom.

We were just finishing up eating at our favorite Mexican restaurant, when the people behind us must have been celebrating someone's birthday. Without any warning to me, because I had my back to them, the waiters had gathered at their booth and started singing loudly in Spanish. I jumped out of my skin. My heart was racing, and it was all I could do to hold the tears long enough to get out of there. Poor hubby was so angry that he all but threw the money for our meal at them, and he vowed we would never come in there again.

I was so upset, partly from still feeling the effects of such a powerful reaction, but also with myself, because I had reacted that way at all. I couldn't stop the tears, and remained very depressed the rest of the day. It completely spoiled our day out, and that's a shame. I can feel the tears welling up, even now as I write about it. Such a simple thing, but it really drove home just how much I have changed.

I read other's stories, like Dan's that I posted about today, and I'm ashamed of myself for being depressed over my little problems. But that only makes the depression worse. I can only pray for strength and make myself get up and do ... do something ... do anything... and not wallow.

PatientsLikeMe Site Is AWESOME

I've spent a lot of time today exploring all the neat pages on the PatientsLikeMe site. I received an invitation to join, and now, I'd like to extend that invitation to all of you. It does involve putting in a lot of medical information about yourself, but I've already done that here, so I decided that shouldn't stop me from joining. I'm so glad I did, as I've already read some posts on the forum that made me feel less strange and alone. I can see that the aggregation of data they are trying to achieve will be a fantastic tool for research and personal information.

So, here's the link:

http://www.patientslikeme.com/

and here's the personal profile I've been working on today.

http://www.patientslikeme.com/members/view/Dirty+Butter

They have it fixed so you can find all members who have the same symptoms, use the same meds, etc. as you.