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Old 06-26-2011, 08:11 PM   #21
jdkempel
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Default am I sick

Friday I got a diagnoses of early onset parkinson, just my family physcian, he stated it on my sleep patterns, constant pain, tingling and numbness in my hands feet and other areas of skin, and a slight shaking in my left hand, and jerky movements when he moved my arms. Plus as he called the face mask.
He started me on Mirapex 1mg a day. and wants to see me again in 10 days to see how the drug is working, and said if this drug helps then it is almost a sure sign it is parkinsons.
Kinda scary
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Old 08-23-2011, 03:10 PM   #22
Sisterhood3
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Hi Kathy - thanks for this - I don't know if our Canadian Drs know about this up here or not - the Glutathione - I will do more research on this for my sister - she was diagnosed 5 years ago as having PD and started taking the Prolopa (combo of Levodopa + Benserazide) ever since. We think the fact she took an overdosage of thyroid meds for 12 years is what started all of this for her. Now she has come off of both and needs 24/7 care now. As a family we are scrambling to figure out what's what now. We also totally believe in doing it alternatively, and no more drugs. I am also beginning to believe that my sister's history of having a heavy metal toxicity buildup in her body has something to do with all of this too. Am putting together the pieces as well trying to figure out our next steps here for her. Right now the family is trying their best to look after all of Tamra's needs, but they are quickly fading energy-wise and emotionally. There has to be some natural detox centre we can take her to for the physical labour help. Thanks for your info on Glutathione.

Laurie


Quote:
Originally Posted by kathy otoole View Post
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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Old 10-26-2012, 12:47 PM   #23
david@daubarchitect
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Default grasping for data

My wife was recently diagnosed with PD.
We have been married for 25 years.
Come to think of it, I can not remember a time when her sense of smell was working. She's been using antidepressants (ADs) for 12 yrs; effexor, mostly.
Lots of people - more and more each day - have been using ADs. Somewhere, I managed to see a page where it was stated that PD incidence has been climbing at an alarmingly high rate; then, I lost the page. I can not help but think that AD use, prior to PD diagnosis, without insight into the underlying emotional trauma (blocked by AD use, without therapy) might result in somaticization, ie a conversion disorder. Chronically, that could be one pathway to development of PD. I am sure there are others. I would be interested in studying that a bit.

So.......I now ask for a very big favor please.

1. First of all, please forgive me if I am threadbusting. This is my first post on NTSG, although I have been lurking for several weeks. If there is a better thread, just redirect me.

2.I asked them if they could please direct me to a source of data on the increasing incidence of PD. Surprisingly hard to find!

This is what they sent me:

[41] American Journal of Epidemiology [2003] 157 (11) : 1015-1022 (S.K.Van Den Eeden, C.M.Tanner, A.L.Bernstein, R.D.Fross, A. Leimpeter, D.A.Bloch, L.M.Nelson)

[42] American Journal of Epidemiology [1995] 142 (8) : 820-827 (R.Mayeux, K.Marder, L.J.Cote, J.Denaro, N.Hemenegildo, H.Mejida, M.X.Tang, R.Lantigua, D.Wilder, B.Gurland, et al)

[62] The Canadian Journal of Neurological Sciences [1984] 11 (1 Suppl.) : 156-159 (A.H.Rajput)

Here is the question: Would you please help me to obtain these articles?
I have done some physiological research, so I think I will be able to understand them.

Thanks.

Great working on this challenging condition with you all.

David
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"Thanks for this!" says:
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Old 11-09-2012, 11:41 PM   #24
daniscott
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There's been some research linking caffeine with slower progression of Parkinson's. My Dr. recommended I start getting a moderate amount of caffeine daily.
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Old 05-28-2013, 06:11 PM   #25
mshakes
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Hey Guy's - I'm a total newbie to everything and feel so overwhelmed. I'm a 40 year old male (if you couldn't tell from my avatar) and was diagnosed for a 2nd time with PD two weeks ago. They put me on mirapex 3 times a day (1 MG each) and Primidone. I've had tremors for a long time but first it was RLS, then Essential Tremors, and now finally Parkinson's. I've been for a DAT scan as well as numerous MRI's and I am sorry to ramble....

I guess, I am NOT ready to handle this. It's scary and now the tremors in my right hand are constant. I feel like everyone is staring at me, and my kid's are starting to see things they have never seen.

Thanks for having me here, I promise, I'll pull it together.
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Old 03-14-2014, 04:38 PM   #26
topsycat
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Default New to Parkinson forum

I am new to the forum and figuring out how to post a message.

I was diagnosed with PD in Jan of 2013, but had symptoms long before then.
Using only Sinemet, four times a day. Tried Azilect, but my BP went to high levels and I stopped. My Neurologist is not a movement specialist. I live near El Paso, Texas.
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Old 04-23-2014, 09:55 PM   #27
mcolo
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[QUOTE=jeanb;106005]I recently sent this email to someone newly diagnosed with PD.

--------------
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 take all of these and find them helpful
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Old 09-21-2014, 07:53 PM   #28
squeakmeow12
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Default help?

hi there, so the past 7 months have been torture. pd is in my family, dad has essential tremors but they didnt hinder the amount of disability i have been in starting back in 2012, and then popping up again and not going away since july 2014.

it all started with a ruptured ovarian cyst that got me sick for 10 days but i have a high tolerance for pain as i grew up and worked in classical arts and there you are taught never to complain about anything ha ha. so eventually i go to the ER they find some free fluid, the ruptured cyst, acute uti with cystitis, i get a pelvic infection and couldn't leave my bed for almost 2 months. the bf was a god send taking care of me.

i got sent to a gyn oncologist by the er, he said wait out about 6 weeks and i should start to get better. as soon as i started to get better, i wake up in scorching pain at 6 am one day barely able to breath or move, my friend from finland was visiting sleeping in the same room and i was looking like i was about to die and obv feeling like it too, i barely made it to the bathroom gasping for air and then ****** out blood. i have no idea to this day why that happened and none of my doctors seem to have an explanation other than i might have been dehydrated thus possible kidney stone. gyn onc didn't really go about the office visit well after telling me to come in to save me another ER trip.

I get referred by bff's mom to her gyn, very well sought after in the area with long term patients. he wasn't supposed to see me as i am 24 and typically doesn't take patients under 35 but did due to my circumstances. they found a hemorrhaging cyst on the other side this time, and referred me to a surgeon for a much suspected inguinal hernia.

i get to the surgeon long story short had bilateral inguinal hernias, they were repaired laparoscopically at the end of june. they told me the first month is typically when you have the worst pain, after that recovery gets much better, faster, and moving around is easier. while my low back pain ceased immediately after the surgery, the months went by and i was not better. my legs were shaking up stairs, my stomach began to feel within the past month or so like i reherniated myself, i got tremors mainly in the R hand, but then spread to the left arm and both sides are and legs as well as my head and neck ( head and neck usually only when im super stressed or emotional or tired or missing meds etc).

in 2012 i was dx w/ bilateral ulnar nerve entrapments on both elbows, loose ligaments, a tfcc tear on the right wrist, mild carpal tunnel, bilateral cubital tunnel. i had ulnar nerve entrapment release surgery on the right side with suspected focal dystonia. i couldn't use my right arm for three months before i had the surgery. i had tremors before surgery, and after i would get them occasionally if i had played my instrument too much, or overused my arms. i also couldn't button anything before surgery, and immediately after i could button things it was like magic.

but starting in late march when i initially got sick and misdiagnosed with PID, after 11 ultrasounds, bilateral unexpected hernia surgery, getting put on birth control to shrink the cysts and prevent another painful rupture, the following specialists:
2 gyns,
gyn oncologist,
internal med pcp,
gen. surgeon,
hand specialist/surgeon,
old neurologist,
current neurologist/mds,
rheumatologist,
current neurologist/mds's senior who only specializes in mds,
ongoing shrink,

the following tests since end of july:
-new eeg
=myoclonic* new, uber light sensitive per usual im epileptic,
-new mri w. w/o contrast
=all normal
-new emg and nerve conduction studies bilateral on arms and up to neck,
= previous ulnar nerve surgery didn't do anything (obviously bc i cant button crap or do normal things more so on the R but also on L on bad days too)
= everything abnormal out of range for everything bilaterally
-blood tests to check medication levels
= all in normal ranges,
-10 vials drawn at rheum.'s + xrays
= Vit D2 (mine was 18) & B12 deficient
-now on 50,000 IU D2 rx per week,
-1000 mcg/day B12,
=mild osteopenia in hands,
=confirmed tremors in upper extremities and knees
-trial of primidone for initial dx of essential tremors
= didnt work increasingly more depressed as the days went on
-decreased adhd med
= no difference in tremors they got worse
-senior mds impromptu comes into apt bc neuro wanted me to see him and get his opinion,
=finds cogwheel both arms,
=dystonias,
=confirmed ET in arms and legs
= stop the primidone,
=have me get a 24 hr urine collection for copper
=ceruloplasmin blood test to rule out wilson's disease,
=started a trial of carbidopa-levodopa this past wednesday.

for the first time in months i have been able to move around a little more easily and the nausea is ceasing. I have a DatScan first week of October, neuro explained to me that CLpa is used to treat symptoms of PD even if it isn't necessarily PD itself.

I still don't have a clear cut diagnosis. but the CLdpa is working in reducing symptoms, D2 & B12 supplements, walking, friends, and reiki are starting to help.

Has this long grueling testing process happened to anyone else? does anyone have any insight? I currently live alone and I am combating some previous psych. issues-my social support is getting stronger, but there are so many people my age that don't really understand flaking out on me is not ok because their help with chopping up food so i can eat is how i can eat and if they cant be honest and tell me they cant show up i suffer and i suffer a loooooooot. anyone with some insight please help.

i just want to have some sort of response if they put me on this hefty med because i may have PD- my symptoms have crippled me off of it and even on it they are not completely gone. I am significantly more happy because i can move and getting out of bed isn't as painful but still-i use radical acceptance everytime pain tries to get the best of me. I never thought this would happen to me, im accepting never producing or playing my instrument again i cannot hold my bow, my doctors know this. thank you in advance i know this is a long and complex post. i am glad you are here and grateful for any response you can lend or advice.
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Old 01-06-2015, 10:00 AM   #29
agility lady
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I was tested for everything under the sun within last 3 year's and we have ruled out everything. I can't tell if my doc thinks I am too young for a diagnosis, since symptoms aren't bad...mild for most part. Or if he thinks I am nuts. My dad has PD, his dad did to. I really would just like physical therapy prescribed for now. Wonder if getting a diagnosis worth it yet?
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