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Old 11-16-2008, 04:59 PM   #11
reverett123
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Default Have at it

Both a rational response and good therapy in my opinion. Might kick a little furniture around, too.

Seriously, though, there are far worse things to have. In 2000, I went to a neuro convinced that I had a brain tumor.

Do try to let the negative energy out in some way. That's one of the things that gotus into this exclusive club, anyway. In between these episodes, this is a good place to hang out. Good people and lots of support.


Quote:
Originally Posted by Kuaila View Post
I'm newly diagnosed & and want to SCREAM.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 11-28-2008, 03:49 PM   #12
Frenchlaw
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My diagnosis is about 1-1/2 years old, and I suspect that I should think it is tragic, but I don't - maybe the anti-depressants are interfering with my ability to feel strong emotion. Yet though my right hand shakes like a leaf, I have problems taking notes at a business meeting and transcribing a phone number can require the effort it took Melville to write "Moby ****", and there are days that I think I need to use my arms to lift my legs up the subway station steps, I still haven't gotten it in my head that I have a condition that will prevent me from doing what I plan to do with my life. I've gotten no worse since my diagnosis. I've said nothing at work. I wish I could scream, because I am under the distinct impression that my inability to do so is more of a sickness than my PD. Kuaila, other than the label put on it, if you're under good treatment, what is making you so angry/frustrated?
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Old 11-30-2009, 08:08 PM   #13
jeanb
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Unhappy Scream away

Quote:
Originally Posted by Kuaila View Post
I'm newly diagnosed & and want to SCREAM.
Kuaila,

Recently an old high school friend wrote to me about my "being allowed to suffer for the instruction of us all." He is very religious and I know his intentions were good. But it led to my screaming (alone at home) that I had enough suffering in my life thank you and I wished it would end.

I believe sometimes you need to scream and should scream (in an appropriate place ) I have done this and then I go back to being as positive as I can be.

You are not alone. We are sorry you have joined the club that no one wanted to be a part of.

Good luck to you.

Jean
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Old 02-22-2010, 02:40 AM   #14
firethightheater
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Default I have a probable diagnosis but

Quote:
Originally Posted by Kuaila View Post
I'm newly diagnosed & and want to SCREAM.
the neurologist still wants me on sinemet for two weeks for diagnostic purposes....then if it proves true ...on something lighter since my
symptoms are mild....anyway i had a horrible onset of meralgia paresthetica that pushed back my start date with sinemet since I don't want to mix it
with all the pain medication I'm on....the pain is receding somewhat with
exercise and epidurals
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Old 04-25-2010, 12:26 PM   #15
jmeyer
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Hello, I am writing this in the hope someone could point me in the right direction.

My wife (49) has been experiencing intermittant at rest tremors in her left leg since dec 2009. Initially her primary care physician said this was possibly stress related etc. This month she experienced pain in her left ankle that would get better over night but become worse during the day. In addition to this her tremor became more pronounced. Her primary care physician recommended seeing a neurologist.

So... we made an appt with a neurologist at a neurology group suggested by her primary care physician. The neurologist performed various in office tests and prescribed blood work and an MRI and a follow up visit in 6 weeks. All of the tests came back normal and the MRI was clear with no tumors etc. The neurologist says he feels she has early stage Parkinson's and has not given us any information or recommendations other than we should see him in six weeks.

I've read countless websites articles etc about PD, but I'm at a loss as to what we should do for the next six weeks while we wait for the next appt.
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Old 04-25-2010, 07:13 PM   #16
jeanb
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Book movement disorder specialist

jmeyer -- if your neurologist was not a Movement Disorder Specialist -- then find one and make an appointment asap. This is a neurologist who specializes in Parkinson's and Parkinson's-like illnesses. They are the best around.

for my initial diagnosis - the neurologist did the same thing - an mri to see if I had a brain tumor - when I did not - then the PD diagnosis.

But I switched to an MDS - she knows her stuff. It's best to see an expert.

Sorry to hear your wife joined the club no one wants to join....

Good luck.
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Old 04-25-2010, 10:37 PM   #17
jmeyer
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Quote:
Originally Posted by jeanb View Post
jmeyer -- if your neurologist was not a Movement Disorder Specialist -- then find one and make an appointment asap. This is a neurologist who specializes in Parkinson's and Parkinson's-like illnesses. They are the best around.

for my initial diagnosis - the neurologist did the same thing - an mri to see if I had a brain tumor - when I did not - then the PD diagnosis.

But I switched to an MDS - she knows her stuff. It's best to see an expert.

Sorry to hear your wife joined the club no one wants to join....

Good luck.
Jean, thank you for the quick response.This has been quite a shock to us as my wife has always been healthy and very active. Being told matter of factly to come back in six weeks without any other guidance was also a shock. That was a week ago and I have been researching PD ever since. The amount of information available is staggering and it is difficult to sort through it all.

We will begin to look for an MDS in our area. We are in rural NW NJ but very close to NYC and other major hospitals in NJ.

Have you or anyone you know had any success with supplements for treating or reducing symptoms? My wife is quite active and is interested in going the "natural" route for as long as possible before going on any medication.
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Old 02-21-2011, 06:25 PM   #18
Susan27
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Hello, I suspect that my husband is about to be diagnosed with PD. He has an MRI this week and then we will go from there. I thought that he had frontotemporal dementia until he started having tremors in both hands and legs. He has difficulty standing in one place and balance is a concern. He can't sleep at night and has been clinically depressed for two years. Has anyone else had personality changes like noted in frontotemporal dementia but had it turn out to be PD?
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Old 02-23-2011, 05:15 AM   #19
hutch
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Default e-mail to Michael J Fox

Quote:
Originally Posted by jeanb View Post
I recently sent this email to someone newly diagnosed with PD.
Hello---do you have an e-mail address in which I could send an e-mail that would possibly go directly to Michael J Fox? Thanks for any info. Hutch
--------------
I was 51 when diagnosed in January 2003. I had a tremor in one finger, did not swing my left arm when I walked, and lost my sense of smell 20 years before. When an MRI came up clear (no tumor) I got the diagnosis of parkinson’s.

I went through months of angst and denial – but the diagnosis was correct (unfortunately). But you can help yourself. This does NOT have to be as terrible as you fear. Here are some things I’ve learned in dealing with this disease, and for your health – I recommend you start them now:
I think I wrote my reply in the wrong place---sorry. My question is: Do you have an e-mail address which will get to Michael J Fox directly? Thank you for any info you can give me. Hutch

There is a lot of evidence that EXERCISE can help – so an overweight couch potato like me now walks, swims and bikes (nearly) every day. Do anything – everything you can do starting NOW: yoga, tai chi, weight training, walk, treadmill, bike, etc etc – every day – do as much as you can and start now. While there is nothing proven to slow the progression, exercise may help, plus there are supplements and foods that have shown that they may help (eat/take them now):

• Dark berries (blueberries, blackberries, raspberies, etc)
• Dark grape juice
• Curcumin supplements (an ingredient of curry) has shown to be very good for the brain
• Coenzyme Q10 in mega doses may slow the progression – try to take 1200mg per day
• Eat broccoli (!)

IF you get a PD diagnosis, the NIH is looking for people with early PD – not on PD medication yet. Whatever the diagnosis – do NOT let doctors start you on pd medications until you think about clinical trials. There are trials going on right now for substances that may be neuroprotective. (I have participated in 5 trials so far…)


www.pdtrials.org
www.clinicaltrials.gov

here is a bulletin board for people with pd –http://neurotalk.psychcentral.com/forumdisplay.php?f=34
Hi---Do you have an e-mail address that would allow me to send an e-mail that would get to Michael J fox. I just want to let him know how much I admire and appreciate all his work he is doing and let him know how much he has helped me to continue fighting my many battles with other neurological diseases. Thank you for any info you can give me. hutch
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Old 06-20-2011, 07:16 PM   #20
kathy otoole
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I was 51 when diagnosed in January 2003. I had a tremor in one finger, did not swing my left arm when I walked, and lost my sense of smell 20 years before. When an MRI came up clear (no tumor) I got the diagnosis of parkinson’s.

I went through months of angst and denial – but the diagnosis was correct (unfortunately). But you can help yourself. This does NOT have to be as terrible as you fear. Here are some things I’ve learned in dealing with this disease, and for your health – I recommend you start them now:

There is a lot of evidence that EXERCISE can help – so an overweight couch potato like me now walks, swims and bikes (nearly) every day. Do anything – everything you can do starting NOW: yoga, tai chi, weight training, walk, treadmill, bike, etc etc – every day – do as much as you can and start now. While there is nothing proven to slow the progression, exercise may help, plus there are supplements and foods that have shown that they may help (eat/take them now):

• Dark berries (blueberries, blackberries, raspberies, etc)
• Dark grape juice
• Curcumin supplements (an ingredient of curry) has shown to be very good for the brain
• Coenzyme Q10 in mega doses may slow the progression – try to take 1200mg per day
• Eat broccoli (!)

IF you get a PD diagnosis, the NIH is looking for people with early PD – not on PD medication yet. Whatever the diagnosis – do NOT let doctors start you on pd medications until you think about clinical trials. There are trials going on right now for substances that may be neuroprotective. (I have participated in 5 trials so far…)


I have a brother that has had parkinsons for, I'm guessing 10 years. He's tried a lot of different things and was on several or many different drugs. He was on the one that begins with an "L" that almost everyone ends up being on. Anyway, I gave him a book by a doctor in Florida who was having real success using intravenous glutathione. It took him over a year and one half years to go, but he finally did. He is now doing the intravenous glutathione and has remarkably been able to go off of the harsh drugs he was on. I know he's still using some drugs, but the glutathione actually works!!! It is not a gimmick and it is so definitely not a placebo affect. Some insurance companies are starting to actually cover it. I'm just SICK that the major parinson's associations are not aware of this and promoting it, etc. The last I heard, his neurologist thinks he has halted the parkinsons, but I find that really hard to believe and am not suggesting at all that it did. (it may have, but I honestly don't know and am not at all claiming that it did. the jury is still out) BUT I am saying unequivically that the glutathione has improved his life dramatically and he has difinitely gotten off the harshest drugs. I wish I had more exact info to write here so I could give more intelligent information. I am having surgery in a couple of weeks and will be off work for about 8 weeks. It will be my mission to get more exact information and to then call, email, and send faxes to these associations and find out why, why, why, they are not aware of and looking into the glutathione. I was rudely brushed off a couple of years ago when I called one association to seek info on the glutathione. I'm livid that they blew me off because I then slacked off on pushing my brother to find out about it, etc. He could have been on this quite a while ago. Anyway, I wanted to really try and get people to be aware of it and PLEASE check it out because it is real, even tho it sounds too good to be true. I love my brother dearly and it's been crushing me to see him going thru what he has been going through and watching my mother having to watch her son go through this. I would NEVER write what I have written if I didn't know and see for myself that it really does work.
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