Posted 06 January 2013 - 09:59 PM
I get a lot of the same or similar comments to those I have been reading in this thread. Like, "for someone nine years into a diagnosis, you are doing remarkably well." And, "don't worry, it doesn't show."
Look,I know the bulk of these comments come from people who mean well and, as a rule, I take them in the spirit they are given. But, once in a while, a well placed missile launched by a Well Meaner hits its target and the pain it causes can be palpable. I usually swallow the pain, pick myself up, and move on. This time, I decided to vent because I was totally crushed by, of all people, my own doctor and I sensed, instinctively, that there would be understanding here. There was--and I thank you all for it.
Posted 14 April 2013 - 12:34 PM
Posted 17 April 2013 - 12:16 PM
Just yesterday, someone I hadn't spoken to in many years contacted me. In the midst of updating her on what I'd been up to the past few years (along with job changes, gossip about people we know in common, her grand baby, getting older, etc), I mentioned I have PD. My friend no doubt meant well, but said, "With all the money and research going on, you should have a cure for that in the next few years!"
It was one of those pause moments.
Do I say, "listen honey, I've been living with this for years now, don't you think I would know about a possible cure coming down the pike?" Or do I say, "unlikely given that there have been very few new treatments in the last 50 years or so." Or, "impossible since they don't even know how this disease really works yet."
Instead, I said "I sure hope so because I somehow have to get through the next few years, and that isn't always easy!"
I agree with you, Kevin, that it would be great if people had a better idea of all the nasty hidden consequences associated with PD instead of thinking only of tremors. And even with tremors, until and unless you've had the exhausting and unpleasant experience of dealing with them, you would have no idea how debilitating they can be.
I'm hoping that MJF's new show will touch on all of this. The media is a powerful educator and he has a rare opportunity to really help our community gain the understanding and support we need.
MJF: Are you reading our posts?
Posted 18 April 2013 - 02:05 AM
I have had a terrible time with depression, apathy and anxiety as part of my world of symptoms over the years. A few years ago the depression was seriously bad - suicidal depression. I went to my primary care Dr for a regular physical and my cholesterol was lower than usual and her off hand remark was that depression must be good for my cholesterol level. I was so upset with her for treating the depression like it was no big deal - thankfully she wasn't the one treating it. I changed Drs after that.
Posted 18 April 2013 - 02:43 AM
These insensitive physician stories remind me of my experience with my second neurologist. I fired my first one because she was 45 minutes late to the appointment (no explanation or apology--if I had been the one who was late, the physician would have charged me!), moved my arms a bit, watched me walk, told me I had PD (I didn't have any idea what it even was), and then directed me to a website.
Believe it or not, the second neurologist was worse. He proceeded to do a mini-mental status exam on me (without explaining that he was going to it and obtaining my consent) by asking me a series of questions about baseball. I know baseball about as well as I know how to pearl dive. Not at all. So after the second question (Dr: "Tell me what is in this man's closed glove." Me: "I don't have any idea. A sandwich? A carrier pigeon? A bone? Chewing gum? "), I said, " If you are trying to assess my cognitive status, why don't we talk about the book I am reading. Have you read Kant's Critique of Judgment? How do you believe reflective judgments differ from determinative judgments? ". When he didn't answer, I said, "I think we can both agree that my cognitive status is fully intact. So can we move on to discussing how I can live a rich, full life with PD?"
Needless to say, I didn't return.
Posted 18 April 2013 - 09:44 AM
I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.
Posted 10 July 2013 - 03:38 PM
- First - it REALLY REALLY hurts. This is not your average injection. the needle is attached to a sensor which indicates when the needle is in the deep muscle tissue. But to do this the Dr. must move the needle around in the muscle to find optimal spot. And this is not a one injection deal either. I was doing 14 on each side.
- Second - you will not see any change immediately
- Third - you will however see a change at about the 10-14 day mark.
- Fourth - the side effects of the botox are wicked. I experience severe head droop for about 2 weeks. This means I can't hold my head up on my own. I spent alot of time with my hand under my chin. There is also an issue with swallowing that can be caused by the paralyzation of the muscle.
Smile every day and laugh at least once at something the PD is now causing you to do. I personally love the "left" turns that happen as I walk. The smile really works - it makes everyone worry what you have been up to!
Posted 27 November 2013 - 10:32 PM
I realize this is an older post but it took me years to figure out the neck pain issue so I hope you see this and it helps- I thought my neck pain was due to an unrelated brain condition I have undergone surgery for, then to a cervical spinal fusion I had a year later for a herniated disk at C5-C6 and that I was just going to have to manage it for the rest of my life. Then after 5 weeks on Mirapex, the stiffness started to go away and it was wonderful. I had to switch meds to Requip because the Mirapex started interfering with my breathing but once I reached my maintenance dose of Requip the pain has drastically subsided again. About 20% of YOPD's I learned, have a pain syndrome associated w/ PD- it often affects the muscles of the neck. Massage also helps- check to see if you have massage school nearby- I get weekly massages by students for only $20 a pop- for an hour- I ask them to concentrate on my neck and shoulders. It really helps. Best of luck.
Posted 28 November 2013 - 03:00 AM
its funny you all have had some source of neck pain, that's why I was getting so frustrated, because I would complain about neck pain, and they would do my mri of my neck and it was perfectly normal, they gave me vic. at first, and then slowly we are now on Norco for the pain, yet now that its been thirteen years and I read these post, I think wow why didn't the drs. put it together before we did. Nuts right. any how sorry you all have to go through this its so not fun. Bless you all and your families for the Holiday Season...Sarahjo
Posted 28 November 2013 - 06:06 AM
Posted 28 November 2013 - 07:46 AM
Yes, I've had severe stiff neck and headache for a long time. I'm not sure if mine is due to Lyme or PD (or both).
Posted 29 November 2013 - 01:12 AM
i was just commenting to my husband and a really good friend that i really have never had head aches and yet about two years before dx, they were coming on more often, and then closer yet to dx, they were almost weekly, the pain was at base of head down the neck and into my shoulders, and also in my hips and down my right leg. i heard it was my sciatica, to pulled muscles, over use etc. but i do feel for the dr. (and you all know my story, i had some bad raps with drs.) but now talking openly with the neuro i have now, i feel for them cuz believe it or not there are ppl that just want to take meds for no no no no reason at all, (this just blows my mind) here we have to take them just to function and ppl want to be in state of high, (crazy) any how, why i feel for drs. cuz they have to weed through and put two and two together, i feel so sorry for the newly dx, and those on here and not on here that are just trying to figure out what in the world is goin on with their health. back to subject at hand, its amazing how the whole neck shoulders, and so on tie together...
Posted 01 December 2013 - 10:39 PM
Drug seekers cause most healthcare workers to become calous over time, and there are far more of them than most people would care to believe unless they are in the medical profession themselves.
It's funny (ironic) that this post has been resurrected. In reading back through it I've noticed some posts mentioning things that have happened to me in the past week. I've been having neck and shoulder pain for a couple of years now, but around the first of September it became really severe. I went to two other doctors before going to my local neurologist who ordered an MRI and an EMG/nerve conduction study on my right arm. As it turns out, I have really "severe" carpal tunnel syndrome requiring surgery in the next week or two, a protruding disk at C6-C7 that is compressing the nerve that innervates the tricep muscle and is causing a lot of my neck and shoulder pain as well as making my arm very weak and which also requires surgery, and finally several thyroid nodules (one of which is so large that it is deviating my trachea to the right and which is going to require a biopsy and surgical removal). That's THREE surgeries!!!!!!!?????!!!!!! Needless to say, I'm on medical leave and short term disability right now and will probably be off until March 1st - if I'm able to return at all. If I do, I'm pretty sure my days in direct patient care are now over. I think my body hates me....lol!
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