I haven't updated my blog in quite some time. Apologies to those who have been asking. But talking or typing about it is very draining. I feel like a broken record every time I open my mouth to speak to someone who is unaffected by PD. I end up having to explain the symptoms, the meds, current research, etc. And then they ask what I've been doing to, or why, I've lost so much weight lately. ~The PD drugs I take and food don't mix well. Protein and fats block the absorption of the meds and I end up having more frequent 'off'' or 'freezing' episodes. I experience painful withdrawal like muscle spasms if I go beyond 3 hours between dosages. So I wait until evening to eat most of my calories of the day.~
I think I'm in a new level of depression. Some things I just don't seem to care about anymore. Or maybe I've become hardened.
I'm not very motivated to deal with managing my PD these days. I need help. Someone to take over. It's a continual uphill battle dealing with doctor's offices, health plans, pharmacies, drug companies, social services (or lack there of!), medi-care/medi-cal/SSN, and my -still pending- request for disability retirement from my former employer. The City of (name witheld) Personnel Department sucks by the way!
O.K. so on to the reason I felt compelled to write about my PD again. I was at the pharmacy picking up a prescription earlier today when I ran into someone I didn't recognize. I literally ran into him when I turned an isle 'cause I was looking the other way. I apoligized and then mumbled something about it being my fault. The guy did a double take and came back and spoke my name. I didn't know him. How did he know my name? I shot him a puzzled look. Then he asked if I was a mother to two little boys? I still couldn't place him. His face was not familiar to me at all. Where did he know me from? Little League? School? I started racking my brain. It's not like me to forget a face.
More later. Time for bed.
Wednesday, July 16, 2008
Thursday, March 20, 2008
Mentor mom, where are you?
So tired of meds. So tired of being tired. Need to try something new. I definitely need a boost to keep me going. I think I am finally ready to drop in on the local Parkinson's support group at the Senior Center next week.
As much as I have wanted to participate in an in-person support group, I hadn't been ready to drop in on one until now. The image I have in my mind, of dependant wheelchair bound seniors with advanced stages of my disease, has stopped me from going anywhere near the place. It would be too depressing for me to have constant visual reminders of what is in store ahead for our family. I can't handle it now, when I see other patients in the waiting room at my doctor's office, who are further along in this disease. They try so hard to control their body movements so they can sit down in a chair and not be a distraction to others. It breaks my heart when I see them being led into the building by a caregiver, with their walker or wheelchair en tow, sometimes not appearing to be fully aware of their surroundings. The look on their care giver's face says it all. I feel like I've handed my family a death sentence. I cry all the way home every time I pass someone on the way out who is worse off than me.
I was hoping to find a Young Onset PD group in my area to meet with. Thinking that I would benefit more by meeting with people in my age group vs my grandmother's age group I've just dismissed going to the one in town altogether until now. I need them. I need to make a personal connection with another patient, regardless of how different I think our situations are. Its time to humble myself and go hear what my elders have to say. If I open my mind somethings bound to fall in!
To date, I haven't met another patient like me -a Young Onset FEMALE! I've seen a young onset father speak at a presentation for DBS once. But another mom, with school age children, is who I have been hoping to meet. I need a role model on how to parent with Parkinson's. I feel as though I'm failing miserably at being my children's mother. A mentor mom is what I'm on the look out for. Does one exist?
As much as I have wanted to participate in an in-person support group, I hadn't been ready to drop in on one until now. The image I have in my mind, of dependant wheelchair bound seniors with advanced stages of my disease, has stopped me from going anywhere near the place. It would be too depressing for me to have constant visual reminders of what is in store ahead for our family. I can't handle it now, when I see other patients in the waiting room at my doctor's office, who are further along in this disease. They try so hard to control their body movements so they can sit down in a chair and not be a distraction to others. It breaks my heart when I see them being led into the building by a caregiver, with their walker or wheelchair en tow, sometimes not appearing to be fully aware of their surroundings. The look on their care giver's face says it all. I feel like I've handed my family a death sentence. I cry all the way home every time I pass someone on the way out who is worse off than me.
I was hoping to find a Young Onset PD group in my area to meet with. Thinking that I would benefit more by meeting with people in my age group vs my grandmother's age group I've just dismissed going to the one in town altogether until now. I need them. I need to make a personal connection with another patient, regardless of how different I think our situations are. Its time to humble myself and go hear what my elders have to say. If I open my mind somethings bound to fall in!
To date, I haven't met another patient like me -a Young Onset FEMALE! I've seen a young onset father speak at a presentation for DBS once. But another mom, with school age children, is who I have been hoping to meet. I need a role model on how to parent with Parkinson's. I feel as though I'm failing miserably at being my children's mother. A mentor mom is what I'm on the look out for. Does one exist?
Tuesday, March 18, 2008
Time to allow others to help
You've been asking-
For friends who live close by, the best thing I could use right now are play dates for the kids. They need breaks from me and my PD. Just coming by and sitting on the porch so they can play outside would be great. After school homework 'play dates' would be welcomed also. Got time to shoot a few hoops?
Thanks everyone for your concern!
~~~~~
I occasionally need help with mobility. Forward momentum decreases and I and start shuffling my feet like an elderly person. I'm not ready for an electric wheel chair but I need to find something portable like an electric stand-up type scooter for adults that could quickly get me to a point of safety when I feel an episode coming on. Believe it or not, my legs come to a complete and full stop when my meds wear off.
The last time I had an off episode in public was just last week at a little league field. It was getting dark when the game ended. My husband had just left me to put some things away in the car. I waited behind at the snack bar with my son while he finished visiting with his teammates. It was their first game of the season. They were enjoying their hot dogs and soda. But while sitting there I felt an off episode coming on. I had to get up quick and make my way to the car as fast as I could. I couldn't wait for my son to finish eating. No time to tell anyone what was going. The other parents were too far away for me to get their attention. If I wanted to avoid having a situation in front of all these people I had to leave now. So I started walking to the car on my own. Why is it we always seem get stuck playing on the field farthest from the parking area? This was the first game of the season, in a new league, at the opposing team's field. I had no idea the closest place to park was a block away from the entrance's driveway! I only made it half way to the street entrance before my muscle spasms started hitting me full force. Down I went. So there I was, on the ground, in the dark, alone without a cell phone, meds in my mouth but no water to swallow them. Finally my son and some teammates finally came along. I should have followed the path and not taken a short cut between the buildings. Nobody else could see me in the dark. I could hear people walking near by. Dummy! Fortunately my son still had his drink in his hand. I was able to swallow my meds. But it was still going to be a long 40 minutes for them to kick in. Yes, 40 minutes - and it's an ordeal! How scary it must have been for my son. It was his first game in a new league. He didn't know any of the other player's parents yet, just his coaches. He had no idea where the car was parked. But he did a great job running back to find someone to help until my husband got to me. He's my little hero.
For friends who live close by, the best thing I could use right now are play dates for the kids. They need breaks from me and my PD. Just coming by and sitting on the porch so they can play outside would be great. After school homework 'play dates' would be welcomed also. Got time to shoot a few hoops?
Thanks everyone for your concern!
~~~~~
I occasionally need help with mobility. Forward momentum decreases and I and start shuffling my feet like an elderly person. I'm not ready for an electric wheel chair but I need to find something portable like an electric stand-up type scooter for adults that could quickly get me to a point of safety when I feel an episode coming on. Believe it or not, my legs come to a complete and full stop when my meds wear off.
The last time I had an off episode in public was just last week at a little league field. It was getting dark when the game ended. My husband had just left me to put some things away in the car. I waited behind at the snack bar with my son while he finished visiting with his teammates. It was their first game of the season. They were enjoying their hot dogs and soda. But while sitting there I felt an off episode coming on. I had to get up quick and make my way to the car as fast as I could. I couldn't wait for my son to finish eating. No time to tell anyone what was going. The other parents were too far away for me to get their attention. If I wanted to avoid having a situation in front of all these people I had to leave now. So I started walking to the car on my own. Why is it we always seem get stuck playing on the field farthest from the parking area? This was the first game of the season, in a new league, at the opposing team's field. I had no idea the closest place to park was a block away from the entrance's driveway! I only made it half way to the street entrance before my muscle spasms started hitting me full force. Down I went. So there I was, on the ground, in the dark, alone without a cell phone, meds in my mouth but no water to swallow them. Finally my son and some teammates finally came along. I should have followed the path and not taken a short cut between the buildings. Nobody else could see me in the dark. I could hear people walking near by. Dummy! Fortunately my son still had his drink in his hand. I was able to swallow my meds. But it was still going to be a long 40 minutes for them to kick in. Yes, 40 minutes - and it's an ordeal! How scary it must have been for my son. It was his first game in a new league. He didn't know any of the other player's parents yet, just his coaches. He had no idea where the car was parked. But he did a great job running back to find someone to help until my husband got to me. He's my little hero.
Two steps forward, two steps back
The attention from the news media appears to be having an effect with Wachovia. I've been assigned a case worker for my mortgage. This is huge. Having a designated person to talk to will save me loads of time on the phone. Something I've grown to dislike these days - the phone.
On Friday, Wachovia agreed to accept a partial payment on what I owe, which will temporarily halt the foreclosure proceedings. They want the cashier's check back, that they previously refused to take, by this Friday. And we must meet the next 3 month's payments on time. The amount due each month will be approximately $200 more. At the end of 3 months they will re-visit our request for a loan modification (puts your past due fees, any missed payments, lawyer fees, foreclousre fees, etc to the back of your loan). Whitney, my contact person, did tell me that there is no guarantee that my request for a loan modification will be approved. Depending on what my debt ratio is in 3 month's I could be turned down again. If turned down, or if I'm late on any of the next 3 payments, foreclosure proceedings will continue where they left off.
Its just a band-aid but at least its a start!
I don't have anything in writing from Wachovia yet. I was supposed to be faxed a copy of their offer this past Friday. When I called Wachovia yesterday morning to inquire about it I learned that my contact person is on vacation this week! Whitney gave no indication that she wouldn't be available this week to finalize this. I've called back several times since my Friday conversation with her. Each time I've been told that the manager's are in meetings and someone will get back to me. Whitney and I played phone tag for 7 days before actually speaking to each other the first time. No kidding. How much longer is it going to take this time? And how much more in fees will I be assessed now!
This is so upsetting on so many different levels. Don't these people realize that I have other pressing things to do with my limited time and energy than waste it at the computer or on the phone with them? My kids need help with their homework. Science projects were due last week. The week before that California Missions projects had to be turned in. I haven't been able to give my children the attention they need lately with their studies. I haven't been practicing sight words with my kindergartner. Lack of parental involvement directly impacts grades. Tonight is open house. I'm not looking forward to going.
My neighbors have taken notice of all the car traffic to my address lately. Strangers are on our court now, taking photos of my house, walking in my yard with measuring tapes, knocking on the door asking to see the inside! NOTICE TO BARGAIN SEEKERS OR ALLEDGED APPRAISERS: The next one of you who approaches my house while my children are present, or who snaps a picture of it while they are playing, will be hunted down and beaten severely! Then the police will be called.
On Friday, Wachovia agreed to accept a partial payment on what I owe, which will temporarily halt the foreclosure proceedings. They want the cashier's check back, that they previously refused to take, by this Friday. And we must meet the next 3 month's payments on time. The amount due each month will be approximately $200 more. At the end of 3 months they will re-visit our request for a loan modification (puts your past due fees, any missed payments, lawyer fees, foreclousre fees, etc to the back of your loan). Whitney, my contact person, did tell me that there is no guarantee that my request for a loan modification will be approved. Depending on what my debt ratio is in 3 month's I could be turned down again. If turned down, or if I'm late on any of the next 3 payments, foreclosure proceedings will continue where they left off.
Its just a band-aid but at least its a start!
I don't have anything in writing from Wachovia yet. I was supposed to be faxed a copy of their offer this past Friday. When I called Wachovia yesterday morning to inquire about it I learned that my contact person is on vacation this week! Whitney gave no indication that she wouldn't be available this week to finalize this. I've called back several times since my Friday conversation with her. Each time I've been told that the manager's are in meetings and someone will get back to me. Whitney and I played phone tag for 7 days before actually speaking to each other the first time. No kidding. How much longer is it going to take this time? And how much more in fees will I be assessed now!
This is so upsetting on so many different levels. Don't these people realize that I have other pressing things to do with my limited time and energy than waste it at the computer or on the phone with them? My kids need help with their homework. Science projects were due last week. The week before that California Missions projects had to be turned in. I haven't been able to give my children the attention they need lately with their studies. I haven't been practicing sight words with my kindergartner. Lack of parental involvement directly impacts grades. Tonight is open house. I'm not looking forward to going.
My neighbors have taken notice of all the car traffic to my address lately. Strangers are on our court now, taking photos of my house, walking in my yard with measuring tapes, knocking on the door asking to see the inside! NOTICE TO BARGAIN SEEKERS OR ALLEDGED APPRAISERS: The next one of you who approaches my house while my children are present, or who snaps a picture of it while they are playing, will be hunted down and beaten severely! Then the police will be called.
Thursday, March 13, 2008
7 On Your Side comes to my town
Frustrated with trying to get thru to my mortgage lender, I turned to ABC News ‘7 on your side’ Consumer Editor R.Y. to help me get an issue of an overdue payments resolved. Here is the link to my story.
http://abclocal.go.com/kgo/story?section=news/7_on_your_side&id=6011665
Too bad the news crew showed up on a rainy day, when I felt like crud, and the house was a mess. Oh and did I mention I had a big blemish on my face? I had tried to postpone our interview for another time but no luck. They knew better than I that time wasn’t on my side. Plus we had already postponed our in-person interview once before due to a breaking news story. So into the house came the reporter, the camera man, the camera, and the lighting equipment. Yikes! I’m going to be on TV. Me and my messy house! Panic starts to set in. Am I doing the right thing? Could it make things worse? Too late now. I woulda, coulda, shoulda thought of that before. Public speaking terrifies me. How was I going to be able to talk on camera? I was so distracted by the camera equipment that I had a hard time maintaining eye contact with the interviewer. I had those shifty looking eyes as I glanced back and forth between the camera and the reporter. And I couldn’t sit still and stay focused. I couldn’t tell if my if my jiggyness was caused by my meds or from my nerves. I had the 'michael j fox thing’ going on. Boy was I interviewing well.
http://abclocal.go.com/kgo/story?section=news/7_on_your_side&id=6011665
Too bad the news crew showed up on a rainy day, when I felt like crud, and the house was a mess. Oh and did I mention I had a big blemish on my face? I had tried to postpone our interview for another time but no luck. They knew better than I that time wasn’t on my side. Plus we had already postponed our in-person interview once before due to a breaking news story. So into the house came the reporter, the camera man, the camera, and the lighting equipment. Yikes! I’m going to be on TV. Me and my messy house! Panic starts to set in. Am I doing the right thing? Could it make things worse? Too late now. I woulda, coulda, shoulda thought of that before. Public speaking terrifies me. How was I going to be able to talk on camera? I was so distracted by the camera equipment that I had a hard time maintaining eye contact with the interviewer. I had those shifty looking eyes as I glanced back and forth between the camera and the reporter. And I couldn’t sit still and stay focused. I couldn’t tell if my if my jiggyness was caused by my meds or from my nerves. I had the 'michael j fox thing’ going on. Boy was I interviewing well.
After the news story aired the other day I started receiving requests from friends asking what they could do to help. I didn't know. I still don't. I feel lame not having an answer. Wave a magic wand and cure what ails me? That way I can return to work and take care of my family and myself?
Somebody asked me if I had a web page so they could forward my story to others. I don't. But thought, hmm, sounds like a good idea. I emailed an old friend of mine, D.N., who is computer brilliant. Yes, he could create a web page but his suggestion was for me to create a blog instead. Besides it's free. I told you he was brilliant. Remembering that I had posted something before on a blog, I set out to find it and update it. Not wanting to type anymore than necssary I cut and pasted things I had written before to others about PD. Soon it was done.
I sent my blog to a few friends for input. M.B. suggested I add a few weblinks to PD organizations and include some photos, especially the now famous pill bottle I use. (I took it with us on a road trip with her and our kids once so she was very familiar with it).
So that's the reason I'm blabbing on a blog!
Wednesday, March 12, 2008
Freezing episode in public
-Written Dec '06-
"I was diagnosed after the birth of my 2nd child, almost 5 years ago. Coping is very hard sometimes. I worry about my children becoming my caregivers before I am finished being theirs. This past year I have had to increase meds dramatically. My meds wear off every 2-4 hours, depending on my activity & stress level. I am supposed to take meds every 2 ½ hours but will take them every 2 hours if I have something important going on. Getting the children to school on time is a challenge some days. If I wake up late it delays my meds which makes it take longer for me to get going. I always have to have a couple of doses of meds stashed in my pockets whenever I leave the house.
This is funny now so I will share this. I had my first real freezing episode while grocery shopping last year at Christmas time. I didn’t know how quickly I would become incapacitated & I didn’t get out of the store in time. In addition to my leg freezing or seizing up (on my unaffected side!), I simultaneously suffered a muscle pull in my neck. This causes my head to go all the way back like I am looking at the moon. I look ridiculous! In order to alleviate the pain & pull on my neck until it passes, I have to go down on my hands and knees to allow gravity to help me bring my head back down into a comfortable position. This can be difficult to control. My hands get tired of holding my head forward.
So there I was, in the check stand waiting in line, with my shopping cart full, by myself, when it hit me full force. An off-duty volunteer (fireman?) and his wife came to my aid. But they were fearful of touching me because of my neck spasm going on. They were afraid to help me hold my head/neck straight because they thought they would do more harm than good. I wasn’t injured I was just stuck! I frantically started dialing my husband on my cell phone. He wasn’t answering. I called the next person in my speed dial, C.M. She was there in a flash. Thank god I had my girlfriend with me now, I thought. Now these strangers could go away. But my friend panicked. She had never witnessed a neck episode. When she walked into the grocery store and saw me down on the floor she called 9-1-1 right away. Then she scolded the clerks for not placing the call before she arrived. Good lord was this getting out of control quickly. Within minutes firefighters arrived, followed by medics, then the store manager finally got clued in. I was surrounded by all these men who didn’t have a freaking clue how to help me. Oh, did I mention they were nice looking, and that I was down on the floor, with my head between knees and my backside up?
Needless to say I was not able to bring myself to normal. I became very hot (from embarrassment?) and this concerned the medics. I just wanted to go to my car. But the firemen wouldn’t take me to it. I was still ‘freezing’. They were fearful I would start the car & try to drive myself home. Not so. I can’t drive when my neck is acting up. So into the ambulance I go. This is something PD patients are incouraged not to do.
There is a part two to this but it is time to take the boys to school.
"I was diagnosed after the birth of my 2nd child, almost 5 years ago. Coping is very hard sometimes. I worry about my children becoming my caregivers before I am finished being theirs. This past year I have had to increase meds dramatically. My meds wear off every 2-4 hours, depending on my activity & stress level. I am supposed to take meds every 2 ½ hours but will take them every 2 hours if I have something important going on. Getting the children to school on time is a challenge some days. If I wake up late it delays my meds which makes it take longer for me to get going. I always have to have a couple of doses of meds stashed in my pockets whenever I leave the house.
This is funny now so I will share this. I had my first real freezing episode while grocery shopping last year at Christmas time. I didn’t know how quickly I would become incapacitated & I didn’t get out of the store in time. In addition to my leg freezing or seizing up (on my unaffected side!), I simultaneously suffered a muscle pull in my neck. This causes my head to go all the way back like I am looking at the moon. I look ridiculous! In order to alleviate the pain & pull on my neck until it passes, I have to go down on my hands and knees to allow gravity to help me bring my head back down into a comfortable position. This can be difficult to control. My hands get tired of holding my head forward.
So there I was, in the check stand waiting in line, with my shopping cart full, by myself, when it hit me full force. An off-duty volunteer (fireman?) and his wife came to my aid. But they were fearful of touching me because of my neck spasm going on. They were afraid to help me hold my head/neck straight because they thought they would do more harm than good. I wasn’t injured I was just stuck! I frantically started dialing my husband on my cell phone. He wasn’t answering. I called the next person in my speed dial, C.M. She was there in a flash. Thank god I had my girlfriend with me now, I thought. Now these strangers could go away. But my friend panicked. She had never witnessed a neck episode. When she walked into the grocery store and saw me down on the floor she called 9-1-1 right away. Then she scolded the clerks for not placing the call before she arrived. Good lord was this getting out of control quickly. Within minutes firefighters arrived, followed by medics, then the store manager finally got clued in. I was surrounded by all these men who didn’t have a freaking clue how to help me. Oh, did I mention they were nice looking, and that I was down on the floor, with my head between knees and my backside up?
Needless to say I was not able to bring myself to normal. I became very hot (from embarrassment?) and this concerned the medics. I just wanted to go to my car. But the firemen wouldn’t take me to it. I was still ‘freezing’. They were fearful I would start the car & try to drive myself home. Not so. I can’t drive when my neck is acting up. So into the ambulance I go. This is something PD patients are incouraged not to do.
There is a part two to this but it is time to take the boys to school.
Seek out a doctor that specializes in our disease!
Written -Nov '06- as a response to post on a PD support group site.
"I am new to these PD yahoo groups. I am going to share my story because I think there are a lot of posters here who might benefit greatly by it. I am so surprised by the apparent lack of knowledge voiced here against the Neurologists. My doctor experiences, inregards to PD, have been exceptional. I was diagnosed so quickly that it took me about a year for it to sink in. I did seek 2nd & 3rd opinions, hoping my diagnosis was wrong.
During my 2nd pregnancy I just didn't feel right. My left leg seemed to drag a bit. The tendonitis in my wrists returned (repetitive stress as a 9-1-1 dispatcher). I also noticed what I thought was muscle loss in my left hand/wrist. I couldn't stir a wire whisk well with my left hand. I was having difficulty using a styling brush when I blow dried my hair with my left hand. My typing speed seemed to be slowing a bit in my left hand (I thought it was carpel tunnel). I was also having balance problems that I didn't have during my first pregnancy. I fell 3 times while coming down stairs. And my middle two fingers on my left hand didn't squiggle right when I sang the "Octopus" song with my pre-schooler. I knew there was something wrong but I decided to wait until after I gave birth to find out what it was. I knew that I was not going to accept any treatment for any problem while I was still pregnant.
My OB-GYN reassured me that I was "o.k." and kept telling me that `every pregnancy is different'. Her job at that point was to keep me calm until the baby was born. I ended up having a c-section so my trip to the primary care doctor was delayed a couple of weeks longer. I developed sciatica on my left side after giving birth (my leg got worse after the baby arrived). The PT I was sent to told me that there was something else going on with my left side that wasn't related to sciatica. He felt a lot of stiffness on my left lower back/upper hip area.
Once I got the all clear signal from the OB-GYN (post partum check-up) she promptly sent me to my primary care physician. My appointment with the primary care physician went quickly. He noticed right away that one shoulder didn't move when I shrugged my shoulders. He told me that I didn't have carpel tunnel (which I thought I might have developed). So off to the Neurologist I went. This appointment also went quickly. It went so quickly that I didn't believe him when he delivered the diagnosis to me. I was still a lactating mom so I didn't come back to see the neurologist after being diagnosed.
After a couple of weeks his office called me and asked me to schedule an appointment for treatment. I told them that I wasn't going to accept any drug therapy at that time due to breast feeding. I knew that there wasn't a cure for PD so my thoughts were why bother coming back? A few hours later the neurologist called back and asked if I would consider participating in clinical trials for Young Onset PD at the Parkinson's Institute in Sunnyvale. They were interested in newly diagnosed patients who had not yet started drug therapies for a study. I didn't know there was an `institute' for my disease. He told me that I would be re-evaluated by a doctor who specializes in movement disorders and that I would get a 2nd opinion. I was in their office a couple of weeks later.
My care and treatment from the Parkinson's Institute in Sunnyvale has been excellent. The staff is caring, compassionate, and dedicated. I noticed right off that they were paying attention to what I was saying & wanted to know every detail about how I was doing, feeling, etc during my appointments. They wrote everything I said down in their notes. I was impressed by their dedication to helping people with PD. They were very knowledgeable from the start. I came into their office with amazing cures and treatments I had found on-line or that friends had emailed to me. They knew about all the different stories circulating and quickly answered my questions. I agreed to participate in a clinical trial. Every test they could give me to rule out other diseases was given prior to my start in the study. I was given extra medical care without cost to me. The study I participated in ended a while back but I still go to them for treatment. I am so pleased with the level of care that I have/had received while participating in a clinical trial that I can't say enough about it.
I highly recommend that EVERYONE check into what is available to them in their area. Find a research center and see if there is a study that you are able to participate in. For those not aware, there are plenty of studies going on that don't involve taking another pill! If you aren't happy with the level of care you are receiving from your doctor, seek out a new one that specializes in our disease!!
"I am new to these PD yahoo groups. I am going to share my story because I think there are a lot of posters here who might benefit greatly by it. I am so surprised by the apparent lack of knowledge voiced here against the Neurologists. My doctor experiences, inregards to PD, have been exceptional. I was diagnosed so quickly that it took me about a year for it to sink in. I did seek 2nd & 3rd opinions, hoping my diagnosis was wrong.
During my 2nd pregnancy I just didn't feel right. My left leg seemed to drag a bit. The tendonitis in my wrists returned (repetitive stress as a 9-1-1 dispatcher). I also noticed what I thought was muscle loss in my left hand/wrist. I couldn't stir a wire whisk well with my left hand. I was having difficulty using a styling brush when I blow dried my hair with my left hand. My typing speed seemed to be slowing a bit in my left hand (I thought it was carpel tunnel). I was also having balance problems that I didn't have during my first pregnancy. I fell 3 times while coming down stairs. And my middle two fingers on my left hand didn't squiggle right when I sang the "Octopus" song with my pre-schooler. I knew there was something wrong but I decided to wait until after I gave birth to find out what it was. I knew that I was not going to accept any treatment for any problem while I was still pregnant.
My OB-GYN reassured me that I was "o.k." and kept telling me that `every pregnancy is different'. Her job at that point was to keep me calm until the baby was born. I ended up having a c-section so my trip to the primary care doctor was delayed a couple of weeks longer. I developed sciatica on my left side after giving birth (my leg got worse after the baby arrived). The PT I was sent to told me that there was something else going on with my left side that wasn't related to sciatica. He felt a lot of stiffness on my left lower back/upper hip area.
Once I got the all clear signal from the OB-GYN (post partum check-up) she promptly sent me to my primary care physician. My appointment with the primary care physician went quickly. He noticed right away that one shoulder didn't move when I shrugged my shoulders. He told me that I didn't have carpel tunnel (which I thought I might have developed). So off to the Neurologist I went. This appointment also went quickly. It went so quickly that I didn't believe him when he delivered the diagnosis to me. I was still a lactating mom so I didn't come back to see the neurologist after being diagnosed.
After a couple of weeks his office called me and asked me to schedule an appointment for treatment. I told them that I wasn't going to accept any drug therapy at that time due to breast feeding. I knew that there wasn't a cure for PD so my thoughts were why bother coming back? A few hours later the neurologist called back and asked if I would consider participating in clinical trials for Young Onset PD at the Parkinson's Institute in Sunnyvale. They were interested in newly diagnosed patients who had not yet started drug therapies for a study. I didn't know there was an `institute' for my disease. He told me that I would be re-evaluated by a doctor who specializes in movement disorders and that I would get a 2nd opinion. I was in their office a couple of weeks later.
My care and treatment from the Parkinson's Institute in Sunnyvale has been excellent. The staff is caring, compassionate, and dedicated. I noticed right off that they were paying attention to what I was saying & wanted to know every detail about how I was doing, feeling, etc during my appointments. They wrote everything I said down in their notes. I was impressed by their dedication to helping people with PD. They were very knowledgeable from the start. I came into their office with amazing cures and treatments I had found on-line or that friends had emailed to me. They knew about all the different stories circulating and quickly answered my questions. I agreed to participate in a clinical trial. Every test they could give me to rule out other diseases was given prior to my start in the study. I was given extra medical care without cost to me. The study I participated in ended a while back but I still go to them for treatment. I am so pleased with the level of care that I have/had received while participating in a clinical trial that I can't say enough about it.
I highly recommend that EVERYONE check into what is available to them in their area. Find a research center and see if there is a study that you are able to participate in. For those not aware, there are plenty of studies going on that don't involve taking another pill! If you aren't happy with the level of care you are receiving from your doctor, seek out a new one that specializes in our disease!!
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