ditto what Enzo said, and I'd like to add...I'm glad we on the same team and that i can call you friend...yahoo --give em you know what!!!

My wife said tonight:After how I was feelingYou know you are less of a jerk since being diagnosed with p.dMy reply I'll take the jerk back EJB

My mother (carol) has parkinson's (advanced) she is 68 years old and was diagnosed at age 60. Sometimes I just don't know what to do for her, and wonder if there is anything else out there that may help her. I feel so lost at times. Please help !

Very inspiring. I will share your story with my PD groups.

Hi Krystin,
I'm glad you're finally being correctly treated for Parkinson's. I have friend with it and I told him about Protandim. Have you heard of it from Life Vantage? check out:
http://www.mylifevantage.com/LisaN
It has been Dr. McCord's life work to study Free Radicals and the link between Oxidative Stress and several diseases that we become more prone to as we age. Last week I was at a Life Vantage conference in San Diego and was overjoyed to hear a lady tell me that her husband's Parkinson's symptoms had completely gone away after about 4 months of being on Protandim. It is a supplement of 5 All Natural Ingredients. I'd be happy to tell you more about it if you would like to e-mail me. Dr. Perlmutter, a neurologist highly recommends it because it has been shown to increase your levels glutathione by 300%--very important for Parkinson's patients! Good Luck to you, Krystin!

I just finished a massage and my masseuse told me that I am not nurturing my left side of my body. As I think about PD, I realize that I have been letting negative feelings about the disease become dominant. I need to be more positive and nurturing of myself as well as those around me. God bless you Kyrstin. By the way I think your name is special, is it Swedish?

Hi Sandy,
Have you researched into MS? I'm not a doctor and I know it's the last thing you want to hear but from what you're saying about the lesions, it sounds indicative of MS. Before I was diagnosed, I researched MS as well as PD as possible culprits. I also have 2 friends who have MS that I can put you into contact with if you'd like. My email is krystinradke@yahoo.com. Please email me so I can give you more information and we can chat. Best of luck to you.

Hi Carol,
I would recommend a support group for her and also for your benefit. Being a caregiver is a very difficult job and I commend you on what you are doing for your mom. Go to the home page of the APDA and click on the "Info and Referral Centers" tab at the top of the page. Select your state and you will find a list of chapters in your area who can direct you to support groups, respite care, etc. My email is krystinradke@yahoo.com. Please feel free to email me for anything, anytime!

Hi Jean (cont.),
I can tell you that PD is considered a "designer disease", meaning everyone has their own variations of the symptoms, speed of progression, and response to medications and treatment Please, please, please don't ever think that it's not worth it. Take it from someone who has had those exact thoughts. Rather than start a support group, maybe you can join one that is already established. You have obviously done so much for others in your fibromyalgia group; you deserve to have a group to help carry you through the tough times. I'm not going to lie I meet each day with a bit of cynicism in the back of my mind but that's normal. The important thing is to drown that cynicism with something stronger- faith. It's going be a rough road but the journey means so much more when you fight the good fight and enjoy the success of your labors. My email is krystinradke@yahoo.com. Please keep in contact with me. It will be good for the both of us.  Take care.

Hi Rose,
I agree. The problem I had was that some doctors were too proud to admit that I might be right. I came to the table with the classic symptoms and because I was so young, they didn't even entertain the idea. As a matter of fact, I haven't met anyone as informed as the group of people I went to a PD conference with in GA. It was amazing the specificity of the questions they asked the speakers. I was so proud to be part of their crowd! At that particular conference, I met several people with DBS and heard how it had dramatically changed their lives. I keep current with DBS updates because I suspect that I may choose that option for myself in the future. Good luck and please keep me posted on how you are doing. krystinradke@yahoo.com.

Hi Larry,
Your comment brought on an "A-ha!" moment for me. I am right hand, right foot dominant and I never thought that my left leg/foot acted up so much because of the possibility of neglect. I agree with you in terms of staying positive and nurturing oneself. The mind is so powerful and we tend to forget that positive thinking can overcome a lot more than we give it credit for. As for my name, as far as I know I don't have any Swedish in my lineage and I think my parents were just being creative.  Thank you for the compliment!

God bless you Krystin & your children. My the way, hope you applied for child support from your ex husband.

Im glad you got your story out there sis. Keep on keepin' on. You know I am always here for you. Love you!

Thanks Kari! Love you, too. Thank you for everything. xoxo

What is Protandim? I am a caregiver. My husband has put his head in the sand with his Parkinsons. I read everything I can about the disease. He has had the disease for nine years and is slowly getting worse. His walking and
his back are terrible. We have tried
everything for his back. Does anyone
else have this problem? It is not a disc problem.

thanks for writing this We all need support for this condition,thanks again ,Gary

My wife, who has PD, and I have just read your story on the American PD site and found so interesting. It took the medical people here in Wells, England 5 years to diagnose her PD at the age of 67. Like you she was so relieved. Then last we could begin to understand how to live with this. We laugh when we say there are now three of this in our marriage We belong to a PD group in Bath and find our monthly meetings helpful and sadly always meet people worse off than she is.
Thank you for sharing your story with us.
Bill & Hazel Twentyman.
P.S. We have 3 American grand children who live in NJ as our son married an american girl.

You are a brave and beautiful woman; your story is inspiring in whatever our challenges are and I'm fortunate to call you my friend.

Your welcome Gary! It is always my pleasure!

Hi Elaine,
My ex-husband and I share in supporting the children, in fact he's always done so. What I meant by single parent was the stark transition into being on my own, only having my children half time, and when I did have them, it was difficult because I was struggling in caring for myself. I just didn't want his part in this to be misconstrued. The anxiety, depression, anger over not knowing, etc. ultimately led to our divorce. He loves our daughters dearly and I'm lucky to have a semi-simple divorce. Is there such a thing? :)

Hi William,
Yes, PD find a way to slither into a marriage, doesn't it? I'm from New England and would love to visit soon. Interestingly enough, I've traced my father's lineage (Chadwick) back to 1260 in Rochdale, England. If I make it out there, maybe you and your wife could show me around!

I love you Roxanne, my friend! Friends like you are hard to come by and are the ones who have helped me through! Thank you!!

My story is similar to Krystin's, but with a different twist. I was diagnosed with PD shortly after noticing my symptoms; cramped handwriting and loss of balance. But the more I learned about PD, the more I believed the diagnosis was incorrect. After research I believed I actually had MSA (a Parkinson plus syndrome) but when I mentioned this possibility to my neurologist he told me I was wrong. So I went to the MAYO clinic where I was diagnosed with MSA. Krystin is absolutley correct that no one knows youR body better than you, so trust your instincts.

A few quick suggestions -for Carol or anyone else who doesnt know how to help someone with PD:
Don't baby the person. Encourage him/her to get out, do things, help others. Even a phone call can help someone else.Or a casserole . Or a plate of brownies!

See/read good things. Helps take emphasis off self.

Go to a mild gym class. Coordination and all that good stuff. There is a wonderful book with exercises esp for PD by David Zid:DELAY THE DISEASE. www.delaythedisease.com

Warmest greetings from Spain, good luck and God bless you all! Barbara

Thank you, Krystin. My left arm tremors and my neighbor down the road has a tremor in his right arm.
I was diagnosed with PD 3 years ago. I'm 76 and so far have no other symptoms. I am curious about
Barbara's question about nausea. I have had bouts of nausea and projectile vomiting. I take Sentimet
but can't tell if it does much good. I lowered the dosage the neurologist prescribed because my appetite diminished and I lost quite a bit of weight.
That has improved. Physical therapy did wonders for my spirit and my shoulder, which was becoming atrophied from the constant tremoring. Yesterday a friend told me about a new medication (natural, I think) that was positively affecting PD. I would love to email you as soon as I hear from her exactly what the name of the medication is and exactly what it does. If you email me, I will see that you get that information. I lived in the Walnut Creek area for many years. My ex- is still there. Thanks for what you are doing for all of us!

I was told even ones with severe PD symptoms can go to several different doctors and get several different opinions. I have mild symptoms and have been diagnosed with Parkinsonism. Still do not know what to think, but the meds, vitamins, cpap, and other treatments seem to work somewhat so will stick with my doc. I started with tremmoring in L hand and still do some with my head. Also deal with Pain and extreme fatigue. It is good to have a diagnosis then we can have a point to work from. Enjoyed your letter. It was helpful.

Thank you for sharing your story. It was like reading my own story on the symptoms, to the diagnose, to the treatments. I am 47 and now seem to have terrible back problems. I have gone through physical therapy, chiropractic care, cortizone shots, and massage treatments for sciatica. I too, Barbara Favreau have same.

Hi Gina,
I will bring up back problems at my next group meeting on Feb. 19th. I will let you know what I find out. Take care!

Hi Terri,
There are so many treatment options out there that it's overwhelming! It's trial by error process but eventually we find something that works for each of us individually. Keep fighting! We are fighting right there with you!

Krystin, after observing you, and seeing NO visible signs of P.D. I now understand your frustration with your lack of diagnosis. It took a movement disorder specialist to find it. My neurologist would have just frustrated you further. To Barbara Favreau
The bad back comes from walking with his spine not in alignment. A chiropractor and a physical therapist should work wonders. Good luck! P.S. I have NEVER heard of P.D. causing nausea. Nor has my Neurologist, but some of the medications sure can!

Thank you Dianna!

Your story is very familiar with my own story. Your persistence for a diagnosis is one of desperation that is true with many people. I am happy to see that you can share your experience for others who follow in your shoes.

Hi Mike,
As far as I know, dystonia is quite common with PD. I just so happen to experience severe dystonia in my left foot which can be quite disabling, but I also feel it throughout my whole body to some degree. I, too, am finding that I am having more "breakthrough" symptoms while consistently taking my meds and that is just the progression showing itself, I suppose. Keep in contact with your doctor and talk about maybe adjusting your meds a bit. We need to be constantly ready to follow this thing around and bring it down as it changes!

Kystin, I have known you for about one year and have noticed your tremors, cramping, and you taking your Sinemet durning our meetings. I have people tell me that they don't see any symptoms with me. I explain to them (You learn to hide them.) You have good days and bad days. Every day is a fight. Timing my Medication, diet, exercise, acupuncture, even praying. We do everything we know to get us thru the day and look for new answers to get us thru tomorrow. This is why we network. To share knowledge.
Thank you for your tireless commitment to PD.

We found out about 1 year ago that my husband has Parkinson's. He is very depressed and does nothing around the house. He basically goes to play bingo and that is it. I truly wish that I was inside his body so that I could understand how he feels. He asked me the other day if I was going to put him in a nursing home if her needed 24 hr care. I told him that was not an option. My husband is 64 and retired, the Dr says that he has had this disease for the last 13 years. This is almost as long as we have been married.

Hi Ken,
It's nice to have a friend like you who just "gets it". I don't even have to explain much, if at all. It's so difficult to get people who don't have PD to truly understand the day-to-day experience. Thank you so much for everything that you bring to our group. I look up to you!

I cannot believe doctors are not recognizing the very basic symptoms of PD! You do learn to cope with the symptoms and timing of medication, diet, exercise and prayer is so important, so education yourself! I recommend a book titled "Parkinson Disease Treatment Book" written by J. Eric Ahlskog, MD, Mayo Clinic Parkinson Specialist, Oxford University Press.

Thanks for sharing your story. Your struggle to obtain a diagnosis is familiar, and every YOPD patient I've talked to has had that same problem. I wish you all the best in the future!

www.shakymommy.com

I tried taking co q10 daily, about a year ago, but with no improvement, or affect, in my P.D., that I noticed. It only hurt my wallet, with its cost.

Thank you Kyrstin for sharing your story and for inspiring others. I was also diagnosed at 35 and is still hasn't sink in yet. I've been on Ropinirole for a year now, but I don't think it's working anymore. I am leaving my email for any suggestions on trying new meds. Your opinions would be much appreciated. Also if there's anybody within the Hispanic community out there, please email me, I feel that I am the only Latina in the whole world with this illness. My email is queta70@yahoo.com Thank you.

Krystin, wow, so much of your story sounds so familiar... almost like de ja vu. My wife was just diagnosed with PD a few days ago--on her 41st birthday--after having endured the symptoms and test after test for close to seven years now.

My wife thought she was having panic attacks or going crazy. Six neurologists, a bunch of MRIs (every new doctor wanted one), a lumbar puncture, a psychiatrist, and lord knows how many other tests. Maybe it's MS...nope, not that. Well, what about PD? Doesn't look right. Chronic Lyme Disease? Or maybe you're ARE crazy...not a lot of answers, and no two doctors really agreeing.

Her final neurologist--a movement disorder specialist--has been watching her for four years and was just waiting for the FDA to approve the new "DaTScan" so he could give it to her and bin her in the "psychogenic tremor" category and send her to a psychiatrist. The carbidopa was just having a "placebo effect," the movement disorder specialist (a professor of neurology, mind you) said. Trouble was, my wife already went to a psychiatrist on her own initiative and the psychiatrist strongly disagreed...we really felt like we were between a rock and a hard place...and all the while the symptoms have been progressing.

And as the spouse--especially, as a man, because we're there to fix things (that's what we all think, anyway)--it's extremely frustrating.

So, she went through the DaTScan two weeks ago and the results changed her movement disorder specialist's tune... Parkinson's Disease, unquestionably, he said. At this point, you don't know whether to be upset to have such a diagnosis, or happy to have a diagnosis at all, with a way forward and a chance at some more cutting-edge therapies... and most importantly, she finally feels like she's being taken more seriously by the doctor.

Thanks for sharing your story...it's nice to know that there are others out there who've gone through the same frustration. You've really provided me some encouragement today.