Ok, so I am a PWP. The neurologist said "you have Parkinson's take these pills and I'll see you back in (3) months?!?!

I was diagnosed on the morning of April 10th of 2009, at the age of 52.. In February of 2009 I finally admitted that my symptoms were something to be addressed not written off as fatigue, stress or whatever reasons I had been using to that point. My symptoms were only on my left-side, a very slight intentional tremor in my left hand, could no longer type with both hands, my toes on my left foot dropped in mid step causing me to stumble and fall alot, and a marked slowness of movement. I feared that maybe I had had a stroke. After a week in the hospital being tested for NPH, CAT scanned, MRI's, x-rays, ect.. Drs decided it was probably PD and refferred me to Neurology at USC. Since then I have seen a different Neuro each time and all I know is what I have read on sites like this one. I am currently taking Mirapex and Sinemet. I guess I am a bit overwhelmed, confused, and scared. Any suggestions as to where I go from here?

22 Replies

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  • Everything you say is a normal reaction to such a lifechanging diagnosis. It sounds to me as though you need to meet other people who have the condition but who have had time to come to terms with it? What's it like there for support groups and such like?

    I have in the back of my mind the name of a book which might help you to move forward, but I'll have to go and find out which brain cell is currently remebering that piece of information and get back to you. :)

  • Every thing you need to know about PD by Lianna Marie

  • I have only met (1) other person with Parkinsons. He was at about the same as me as far as symptoms. He told me about some websites. He was quite informative. I never really started looking for a support group until recently, I think I was afraid that going would be like admitting defeat. I will be going to my first one this Wed. Thank you for responding and I would be interested in the book.

  • OK, brain cell located. The book is called Self-Management of Long Term Health Conditions: A Handbook for People with Chronic Disease. by Kate Lorig.

    It sounds a bit dry but it really does help you reflect on what is important to you and how to achieve goals. In Britain/England we are lucky enough to have what is called Expert Patient Programmes which are free and work with groups of Carers and people with long term conditions to talk through difficulties and help us to take control rather than be controlled.

  • Thank you very much I'll check Amazon right now,

  • I was diagnosed at the age of 46 and at that time I was in the advanced stages; therefore easily diagnosed. I spent three years with one neurologist who tried different forms of medication. Then I moved and began going to a clinic that specialized in Parkinson's Disease. I would highly recommend that you find a neurologist that specializes in this field. What an extreme difference. I went through some therapy, found the right combination of meds for me, and I have noticed a remarkable change. You are not alone as you will soon find out! Hang in there!

  • The correct meds and neurologist are VERY helpful!

  • I am 37 yrs old have had tremors since 2005 and diagnosed PD in oct 2011. I am arming myself with knowledge on this i almost com to terms with it. It cost me my relationship but I won't bow to the disease.

  • My son has Parkinson's and only found out last year. Like everyone else we could not find a lot of information and even less within this area that knew about the disease. We did find out about our local support group and attended. We have joined the National Parkinson's team , been trained in some teaching on lots of Parkinson's issues and research and clinical studies, and are lobbiest for the Pan organization to get funding for research and clinical studies through government funding. We work to to get laws changed to better benefit pwp.. We are learning and teaching how to get information to people like yourself and your family. A support group is a wonderful way to start. On line contact the Parkinson's web site and they can send you a lot of free information. If you need information about any of this please get in touch with me and I will be glad to supply you or anyone the information. My e-mail is snead_jackie@yahoo.com. There is a bunch of people who really care and can help in so many different ways. We are speaking at several of the support groups in North and South Carolina. You are not alone.

  • I remember being newly diagnosed. Its a tough place. The thing I had to do most of all was just to let it sink in and then try to assess what the impact was, how to deal with it and what to do. All quite overwhelming. Personally I didn't read anything, look up anything, or engage the PD world. I wanted to just be me, not what I may be or could be, the me I am. I wanted to make the transition without projecting forward a scenario which remains unknown. Will I still walk? will I loose my speech and all those other things which we may encounter. What happens to me like you will be personal, and in time. One thing I did and still do invest in is being a 'smart patient' and that means I invest time and effort into my health care team. My GP, PD nurse and Consultant. I focus on good communication, accurate information, working together and optimising my well being. This investment is worth it as I am going to be a patient for a very long time. I also am interested in getting treated for the things that impact me, not the things that look as if they do. What I mean is it would be easy to say that improving my walking would be a focus, and yes of course it is important. Not as important as however my inability to read books, word blindness and memory fade. Its down to me to make that clear and as such help those looking after me, look after ME and not patients like me. In your shoes I would go back to the clinic and tell them exactly what you have written, exactly. It is after all pretty unacceptable for any care system to be uncaring. Something you will need to adjust to is spending time looking after 'you', humans are not too good at it. We seem to spend most of our time looking after everyone else. Now however it is crucial that you put yourself first, after all the better you are, the better you are for everyone else! Wishing you all the best and a very Merry Xmas.

  • Keep looking for neurologist who specializes in PD. and dont settle for current status

  • Good advice!

  • Thank you all for your comments. Now I at least have a couple of paths to follow. I have not taken the time fo focus on myself, instead I have been working overtime trying to convince friends and family that "I AM NOT Broken", fearing all along that indead I may very well be. Thank you all, what a nice bunch of people. Merry Christmas

  • My husband was diagnosed with Parkinson's when he was 60, he continued to work full time as a chauffeur until he was 66, and occasionally as a mace-bearer until he was 70, and he is now 72. We make sure we go out as much as possible, and we belong to the local group of Parkinson's UK and also an informal local group of PD patients and their carers. We have also taken part in an ongoing research study into the rehabilitation of Parkinson's patients (using a mixture of physiotherapy, occupational therapy and speech therapy). All these things have been, and continue to be, interesting and useful. You are not alone, and can learn a lot from your fellow patients.

  • Come to this site every day. You will feel better.

  • I was recently diagnosed,as well. I am finding that hard exercise, besides being beneficial, is a good release. Also finding PT helpful, especially with balance.

  • I joined this site abour a week ago and I LOVE it...... I am here every day and each time I get information . encouragemet or much needed attetude adjustment. I still try too hard to be "unbroken" and schedule too many things into my day. It seems to me that I'll be "Giving In " to the disease if I take that much needed nap or rest in the middle of the day. I;m learning to take better care of myself. Thanks for all your stories and suggestions. Let's keep coming back.

    Maria

  • I now visit this site a couple of times per week and always take away something. I am going to the gym 3x per week. My husband commented that he thinks I am walking a bit faster. And I feel slightly more stable. I went to my first support group (I cried), I don't talk about PD with anyone in my life except in passing with my husband, so it was kinda like reality shock. Thanks for the support, feedback and everything. May you and yours be blessed with health, wealth and happiness in the New Year." I'll be back..."

  • Have lived with PD for almost 10 years now. My advice to all is: 1. Learn about each of the 38 available medications used for treating PD, their side effects, what they are used for, and especially how to get off from using each. 2. Make changes one at a time and keep an accurate daily log so you can track what works for you and why. 3. Learn about supplements as well. 4. Find a good support group and contribute to get the most out of it and to help others. 5. Find a good PD exercise program as exercise has been found to be the best medicine of all for people with PD. 6. Keep in mind that 36 treatments for PD are currently being reviewed by the FDA; some actual cures for PD. Remember, we could have a worse neurological disease. Don't give up, and never surrender!

  • Thank you, I appreciate the advise. I consider myself a reasonably intelligent human being, that being said, I find alot of sites to be sooooo technical that I walk away more baffled than informed. Can anyone recommend some sites? And I promise... my giving up is not an option.

  • Hi Deanne, try pd junction,i,v been on there for almost two years and have found it very informative and helpful it has some lovely people and was set up by a lovely lady called jacqui.

  • Hi Deanne, I get more help on this site as from the Neurologist and he is costing me a lot of money! I hope you are well. I have been diagnosed when I was 59 (now turning 63) and although my husband decided he is not up to care for a PWP, and we got divorced, I have been fine. Still doing what I did before being diagnosed and the only symptoms are tremors, mostly my left hand. Look up the member JohnPepper, and try to get his book. It motivated me and is worth reading. Regards

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