I have recently been diagnosed with parkinson's disease. I am female 58 years old. My dr. just gave me a look and gave me a pamphlet and some meds. I need to find a new doctor. In the mean time i have been searching the internet and am really scared. Most info found on the internet is doom and gloom. This has really upset me. Any thoughts on this would be appreciated. Thank you.
Internet search parkinson's disease, scary - Cure Parkinson's
Internet search parkinson's disease, scary
Written by
dmariel
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32 Replies
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The doc had little choice. I first accepted the dx stoically. Later I cried. Search my profile for further interest in what I discovered and decided on this journey.
I have had Parkinson for 8 years now, and it is tough condition to be diagnosed with, but it is not all doom and gloom. Since diagnosis I have written 2 books, started a new food business with my son visit grannymarys.co.uk. , got married again, and I able to walk, run , and exercise.
The great news is with the meds out their now without correct choice to suit you, you will lead a good life.
So buckle up, and face this challenge with a positive mind - and never stop fighting. It is not Easy but do not slip into 'why me' - rejoice in the fact that it is the best of the bunch when it comes brain diseases!
Call for Dopamine Hero. One of my characters in my new book.
Bless you, be strong.
Alistair Sutherland
Matlock
U.K
Hi Alistairs, thank you for the nice message. It was nice to get it as i am going to bed and was freaking out, your response has calmed me some. Thanks again, all the best to you.
Donna
Detroit Michigan
USA
Hi dmariel. Have I spoken to you already? I don't keep a record of my HU posts. Would you like to speak to me by email? My email address is johnpepper@telkomsa.net. I have been able to reverse my symptoms and now live a normal life medication-free. Not everybody will be able to do this, for various reasons. I don't charge for what I do and I have been able to help a lot of Pd patients.
Don't panic! You will soon realise that how your PD develops is different and individual to you and thinking positively definitely helps. As does exercise. Whatever happens you will find that a period of exercise that you enjoy will enervate you. I do yoga, tai chi, Dance for Parkinson's and Nordic Walking. I love them all and feel that they help slow the symptoms. I was diagnosed at 61 in 2012 and am pleased to say that people still tell me I don't look like I have PD. Of course it changes your life but not completely. Keep positive! Penny U.K.
Do you take meds penny ?
Yes I do - all the normal ones such as Half Sinemet CR, Rasagiline, as well as a back up Madopar if I need a quick surge of energy.
Did you mean to use the word "enervate" inyour post?
Hi dmariel there is a lot of info on the net not all of it good or Helpful.
You might like to look at
cureparkinsons.org.uk/the-n...
This are all organisations with a positive approach to the disease and have a wealth of info you can download.
These days people don't die from Parkinson's
Have the mantra Parkinsons is living with me not me living with Parkinsons I am in control of PD not PD controlling me.
Learn to live in the here and now ,be mindful,you can't change what's happened you don't know what the future hold so try not to think about it or worry about it ,live for the moment and love every minute
are you really any different now than you were before you were DX with PD, you need to stop thinking about what tomorrow MIGHT bring, you will make your self worse with stress, Because everyone is different with parkinsons, you might not ever get what you are reading about. Be aware of what COULD happen, but that does not mean it will happen. I started tremors in my late 30s and I am now 61. During those years I was DX with different things and the meds that I was given never helped. years later a doctor said he could not rule out PD and sent me to a MDS and he told me it was PD. Please see a MDS!!
It is definitely a journey to acceptance. I was diagnosed almost 2 years ago at the age of 54. There are still days when I cry and others when I don't believe I actually have Parkinson's. But there are also many more days when I'm able to focus on the good things in my life in the here and now, my wonderful friends and family, and the many heroic people with Parkinson's that have come into my life. Yes, there are challenges and yes, it is unfair but no one gets through this life unscathed. One of the best things you can do for yourself is to find a neurologist who will listen to you and work with you as a partner in your medical treatment. I actually went to a movement disorder specialist to confirm my diagnosis and his response was , " Yep you have Parkinson's but you're not even to stage one . You're gonna live a long life. Here's some Sinemet to take three times a day. Go get a physical therapy assessment. I'll see you in six months. " Needless to say I found another neurologist that provided me with more information and compassion. I found it very helpful to take advantage of the specialized programs that are offered for people with Parkinson's such as LSV T big and loud, support groups and boxing. I also have a great physical therapist who helps me deal with my back and stiffness issues by using different treatment modalities such as hot needling, deep tissue massage, laser treatments and ultrasound. And as many people in this group attest to, daily exercise seems to help me more than anything. Remember you are not alone in this journey! Welcome.
Hi, I'm also a 58 year old woman, diagnosed at the age of 55. I'd echo many of the posts here - this is not a wonderful thing to be diagnosed with but its not the end of the world. I was tested for a variety of things and believe me, when PD was diagnosed it was a relief! I'd be very judicious about using doctor Google - it'll scare the life out of you. I get much of my information from this forum, where people generously share their actual experience and what works for them. My neuro isn't great and my PD nurses worse but I found a fantastic physio with a particular interest in PD. Exercise is absolutely key.
I've had to make some adjustments but I'm still working, driving, active and busy. I worried desperately about the future until it occured to me that I could get run over by a bus tomorrow (I'm the optimistic type) and all that worry would have been wasted. Now is what counts.
I agree - when I received a PD diagnosis my reaction was, oh, then there are medications for these symptoms I am having.
Then later, a supplement I started taking for the PD - N-acetylcysteine - relieved a condition that has caused me far more misery than the PD. So the net for me so far is a plus.
what brand do you take
Hello ParkBear.....did you mean that N-acetylcysteine made your symptoms worse ?? "relieved a condition that has caused me far more misery..." or do I misinterpretate that sentence ??
Because, there's a lot of information about the benefits of N-acetylcysteine...??
Yes, it is scary, and the basicfficiently medication hasn't changed since the 1960's, it is used much more efficiently these days. However, it is not all doom and gloom. I have achieved many things since diagnosis, things that I would never have done before. I'm not saying I am glad I have parkinson's, but it is important to remain positive. The amount of funerals I attend helps me retain my perspective.
Mariel, a few thoughts: I am also 58 and was diagnosed four years ago with Parkinson's. A good podcast and website is michaeljfox.org and read his book Lucky Man. I would visit a few support groups and find one you like. Find a "movement disorder specialist" they usually practice in larger cities. Blessings to you
First, let me apologize for the delay in responding to you. A diagnosis of Parkinson's disease can be terrifying, especially since most people are not intimately familiar with the details of the disease. I am rapidly approaching my 65th birthday and was diagnosed almost 20 years ago. For me, the diagnosis initially came with a wave of relief because I had been having severe back pain for almost a decade prior to the diagnosis and no one could find the source of the problem. I was beginning to think that it was all in my head. Thus, suddenly having a concrete diagnosis caused me some relief.
I had deep brain stimulation surgery in 2008. Since that time I have not been on any Parkinson's medication. This is certainly not the norm. Most people after surgery initially reduce their medication but over time symptoms to worsen and medication needs to be adjusted.
For me the biggest challenge has been living day to day while trying to minimize my symptoms. There are some valuable resources available to help control your symptoms without medication. In many cases, just simply concentrating on doing things that were previously unconsciously controlled can make a huge difference. Something as simple as counting your steps as you walk and improve your gait. I have learned that monitoring the pressure on the soles of my feet does wonders for my balance. There is an interesting book written by a man named John Argue called Parkinson's Disease and the Art of Moving. John taught acting classes and had been approached years ago by a woman with Parkinson's disease who asked him a fascinating question. If you can teach an actor to walk differently, talk differently and move differently for a role why couldn't you do that for someone with Parkinson's disease? He developed a series of exercises to increase body awareness and if taken seriously, can be remarkably helpful. I met John years ago when I was involved in a local Parkinson's organization. I had been doing many of the things that he espoused in his book on my own because I had recognized the same issues. It can be challenging to have to think about moving your body every waking minute. As my symptoms have progressed I have come to feel as though I am detached from my body and operating it by remote control. It is certainly not an ideal situation but it is far better than being confined to a wheelchair or bed.
For some people, medication is extremely effective in controlling their symptoms. That was unfortunately not my case but I have known many people who have done very well with Parkinson's medication. You need to find a doctor who will listen to you and be open-minded. No two Parkinson's patients seem to respond the same way to medications and finding the right mix for you might be time consuming and frustrating but the results can be worthwhile.
In terms of support, you will find some of the most generous and sympathetic people you could ever hope to meet on this website. If you are up to it, give John Peppers fast walking routine a try. Exercise is extremely beneficial in the concentration required to do the fast walking will likely improve your symptoms as it has done for John.
Before my diagnosis with Parkinson's disease I was a typical type a personality. I thought I could control everything around me and was wound very very tight. Parkinson's disease has changed my perspective on life dramatically. I have come to appreciate the present much more and worry about the future much less. If you can accept that there are certain things that you simply cannot control while still working to improve those things that you can control you will find this disease much easier to deal with. There are many aspects of Parkinson's disease that can be changed with some work and concentration. Of course, not everyone can achieve the same results but any improvement can be valuable.
Please feel free to contact me if you have any specific questions or if there is anything I can do to help you. I have been very lucky to have a supportive family and understanding friends. There is no reason to take this journey alone.
Where are you from?
from manchestet NH
my suggestion is to stop looking on the internet at all the scary stuff and focus on watch you can do to help yourself! remember this is designer disease and it affects everyone differently you may never experience most of what you read.
Best wishes
First learn all you can about PD. Since you are going to change neuros, I strongly suggest you look for a Movement Disorder Specialist ( a neuro who specializes in PD).
If you go to the National Parkinson's website you can request free information.
Everyone's journey is different. The people on this forum are caring and well informed so come back to visit and read their posts.
Yes. Definitely find a new doctor. I had exactly the same experience when I was diagnosed 10 years ago. The doctor told me he diagnosed PD, gave me a pamphlet and told me to search the Internet for more information and he rushed off to his next appointment. I switched to an internationally famous clinic and am satisfied with my care there. They are willing to work with me on treatment and supportive of my efforts to use alternative treatments. They actually read and comment on alternative treatments I bring up. Although I don’t bring up the scammers who peddle supplements in order to maintain my own credibility. I think my current relationship with the clinic is about the best I could hope for in terms of a mainstream provider.
in reply to danfitz
2012, I first accepted the dx stoically. In my case the neurologist suggested I not go to the internet for info. I did. Later I cried. Search my profile for further interest in what I discovered and decided on this journey.
I think I should clarify what I mean by “supportive”. The neurologist does not recommend in any manner the alternative I am interested in. They merely read and comment on the alternative. I use them as a sounding board for my use of the alternative. I don’t expect them to endorse any out of the mainstream treatment but I greatly appreciate the feedback they provide. Given all the strictures our legal system places on medical care I think this is the best I can hope for. If you are talking to a mainstream provider about an alternative do not expect them to prescribe a course of treatment.
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