lost old user ID

[proudest_mama]

Hey everyone!

I'm BAAAAAACK!

I need a favor from some of my friends out there.

For whatever reason, I can't remember my old user ID or password. Mostly I'd like to know what my old ID was. I think it was close to the one that I currently signed in under (proudest_mama). Can anyone help me out there?

It also seems that the website doesn't contain any history. Am I right? Is there a place to access the history?

I've missed every single one of you. It was an extremely busy summer, and I honestly didn't even try to find info. But now that it's Fall, I hope to participate again.

Oh, and by the way, we DIDN'T have to move to Norway and are still here in Houston, TX. Not my favorite city, I might add, and I hope that I haven't offended any Texans out there!

Got the three oldest kids off to their respective colleges and only one at home. What a difference!

I hope to hear from someone .... anyone! .... that recognizes me!

Terri

[Chicory]

Welcome back!
I don't know how to access any of the old posts, but I think your user name is what you had before. Enjoy your quieter house.
My youngest (of 3) got married in June. One is still unmarried, but they are all on their own. Now my house is very quiet!

Chicory

[judytiger]

Hi Terri - sorry I don't have the answers to your questions, but I did recognize your name!!

Judy
Wife of PDer and MSer

[proudest_mama]

Judy, Judy, Judy ...

Missed you! How is your husband doing? I nearly cried (okay, I'll be honest here ... I was tearing up) when Brain Talk was back up and running. Prior to finding this site, quite by accident, my life was a living ****.

Because of the local neuro, no one believed me, everyone thought I was crazy, and that I "wanted" to have PD.

At the time, I was only 44 years old. The local neuro simply would NOT give me a dx. He treated me for essential tremors, looked me straight in the eye and said, "I'd give you a dx but I honestly don't believe that you have it. Only time will tell."

In all fairness, he honestly and truthfully believed what he was saying and meant it in the sincerest of ways.

He would actually convince me that I was okay and I would go home believing him. A day or two later, however, I was (again) a basket case. There was no way that it was essential tremors.

Eventually I had a whole slew of signs ... resting tremor, loss of arm swing, loss of smell (I knew something was up when I was cleaning the boys' bathroom, wiping up urine and I didn't even smell it!) and hands so stiff that I needed both hands to brush my teeth.

This went on for a good two or three months. In addition to my own family not believing me, my mom was questioning me, as was my marriage counselor. The only two people who at least gave me the benefit of doubt were my sister and my oldest son.

I finally couldn't take it anymore and made an appt. to see the head of Baylor's neurological department in Houston. (Of course, at this point, I was then accused of neuro shopping to get the dx that I wanted).

I went alone, with no one supporting me and, when I walked into the waiting room, I nearly had a breakdown. There was an elderly gentleman in the waiting room with his tremor mirroring my own. I called my son, trying to keep my tears in check, and told him. His response ... "mom, you wanted an answer, and now you got it."

He was right, of course, but a huge part of me still wanted to believe the local neuro's assessment that it was "essential tremors".

They began treatment immediately. I started with Mirapex and Artane and have been on both for two years now. I also had to add an anti-depressant which is sooooooo very uncharacteristic of me. I stewed about it for a few months before making an appt. for that. When I did, I didn't tell anyone in the family. A week or so later, my daughter came home from school, saw me laughing and enjoying life again, and she said ... "Okay, where did you put my other mom?" My husband said nearly the same thing so I finally came clean and admitted it. I haven't regretted it at all.

Since then, I went back to local neuro #1. To say that he was shocked would be an understatement. One of his first, instinctive comments was "Baylor has better lawyers than I do". What he doesn't understand is that, unless someone blatantly and purposefully makes a mistake, there is no way that I would sue anyone. He then asked how long "the head guy" spent with me, or if I was seen only by interns. I told him that the head guy was with me at least 20 minutes.

To this day, I continue to see both neuros. The reason ... I don't want any other person to go through the living **** that I did.

Since then, my family has come around. They believe me, but are also in denial. I tell them as little as I think they need to hear.

I'm currently on the bubble of needing to go on Sinemet. Stress definitely affects my symptoms, as does adrenaline.

Judy, I know that you know most of this story. I post it for the newbie’s who could be going through the same thing. My advice to them is that YOU know yourself better than others. Do not take a professional's opinion if you feel differently. Pursue whatever avenues that you need.

This website and these amazing people are the only thing that held me up. You can ask questions (there is no such thing as a dumb question!), share stories about your family, and let us know of a recent trip or something that you're looking forward to. You can also vent, cry, and let us know that life sucks and you're blue.

I promise you that these people will rally for you.

Out the door I go ... but please feel free to respond to this post, e-mail me directly (proudest_mama@yahoo.com), or send me a PM from this forum.

Terri

[Chicory]

I had a hard time getting diagnosed too. It actually took 7 years! My local neuro believed something was wrong- he told me something was neurologically wrong, but he wasn't sure what it was. Maybe it was parkinsonian. People told me to go to a doctor in the big city and I would get an answer. I went to a well known MDS and he said there was nothing wrong with me- maybe I was depressed. Then I went to a lyme disease doctor who said it wasn't lyme disease, go to a neuro. So I went to the MS specialist he recommended and the specialist said it was just anxiety causing my symptoms. Then I went back to the local neuro and he said that if these university doctors said nothing was wrong, they must be right. I was ready to give up on doctors when a doctor I was seeing for another problem encouraged me to try a neuro again. I was dxed with Parkinson's in January.

Chicory

[proudest_mama]

chicory,

I'm so sorry for you. I can only speak for myself, but I wanted an ANSWER to what I was experiencing. I even began to question my motives ... i.e. was I crazy and truly doing this to myself? Did I really WANT a dx or some sort of pity? I knew the answers to the above, as I'm normally a very upbeat person. My motto sums it up ... "I have more fun than is allowable by law".

But for just a few minutes (between the hope that nothing was wrong and the time the neuro gave me a dx), all was right with the world. As much as I wanted a real name to what I had, I still held on to the hope that NOTHING was wrong with me ... I was just tired, stressed, excited, etc. The DX did (and does) help, but that doesn't mean that I don't occasionally have breakdowns and cry.

If it's okay with you, can I move some of these threads to a different link called "newbies". I'm not sure they are reading all of the different links.

Got to get my beauty rest, but if you could let me know where to pick up that drug, I'd certainly be interested.

Once again, thanks ...
Terri

[mamafigure]

Hi,
Yes, I recognized your name, so you must be you, LOL

For history's sake, it has taken me nearly 5 years to get dx. My local finally told me a month ago that I had viral parkinsonism, similar to what the folks in real life and the movie had in "Awakenings."

Right now I am waiting to be scheduled for surgery again, while my drs fiddle around. It is abdominal exploratory for pain, distension, etc. My extreme phobias aren't helping.

Lots of love to all, so glad that we are starting to come together,
mama

[Chicory]

Proudest Mama-
Yes, my post can be moved to a thread for newbies.
Here is something else interesting- I am reading Michael J. Fox's book. When he first noticed his tremor he was in the middle of filming Doc Hollywood. Arrangements were made for him to see a neurologist at a world-reknowned neurology department. He was told he was a completely normal and healthy neurological specimen. They said the source of his finger spasms was probably a minor injury to his ulna (funny bone). So what does Michael say about this? "Neurological disorders like mine are so rare in people my age that the symptoms would have to be blatant before any responsible physician could confirm so serious a diagnosis." I'm not sure neurological disorders are so rare, but they certainly are hard to diagnose.

Chicory

[judytiger]

Proudest Momma -

Teri - Sorry that I didn't check this thread earlier but did make it back today. Tiger's story is complex and there is more to tell. Have an appointment this morning, but I'll e-mail you later today with the updates.

Not certain that others would be interested.

Judy

[DJM]

I hope no one minds being called "Old" as based on my years of following Braintalk and it's predecessor, I too qualify as "old." It's so nice to see familiar people here as well as the newbies who have fresh insights to offer.

Just to carry on the background sharing, I was diagnosed with young onset PD at age 36 - over 10 years ago. I went through a variety of medical tests for 3 years prior to finally being diagnosed. By then, it honestly was a relief to find out that there truly was something wrong with me- that I wasn't crazy - that I wasn't imagining a constantly changing combination of symptoms. Plus, I didn't have a website like this back then where I could have been searching for answers. No, I received the diagnosis of PD with great relief because I didn't know enough about it to be scared.

I've been on Sinemet the whole 10 years plus assorted other meds from time to time. Eldepryl (aka Selegiline) was a horrible drug for me even though I never even got close to taking the full recommended dose. Stalevo also didn't work for me. These drugs work wonders for other people though.

There have been two drugs developed in the past 10 years which, for me, have been miracles. Mirapex was the first and I've been taking it for about 8 years now. The second miracle for me is from the experimental drug study I'm now in, KW-6002, a drug named Istradefylline. From the very first dose, my physical AND mental symptoms of PD improved dramatically. The drug works on the "adeno system" - the only PD drug currently targeting that area. Rumor has it that this drug is to be fast-tracked meaning it may be available to everyone in two years.

I had my entire view of being an older person with advanced PD changed last spring when I met an amazing woman named Janet Humphries. She's had PDfor 30 years and has had DBS surgery. I saw her WALK to a podium to accept an award, SPEAK her words of thanks, followed by her husband reading powerful poems she had written about her life with PD. So, 30 years into the disease and she can still walk, talk, and obviously is still mentally creative and sharp!

So to those of you who are newbies and even those of you who aren't, I offer to you the advice my diagnosing doctor gave me: Read, read, read everything you can about PD so you can be knowledgable about what's available to help you guide the direction your treatment takes. But, don't get depressed by what you read. Stories typically cover worst case scenarios rather than highlighting people with PD who are doing really well; inspirational people like Janet.

So glad to "see" you again, Terri! A former corporate nomad myself, I had wondered if your husband got the job in Norway.

Welcome back to all the seasoned Braintalk posters and looking forward to getting to know you who are new here.