What advice would you give to someone who is going through the diagnosis process, or has just received their 'official diagnosis'?
I agree to learn as much as you can, whether through books or groups like this one or through organizations like the Michael J Fox Foundation or the National Parkinson's Foundation. However, always keep in mind that everyone reacts differently to Parkinson's; don't assume the worst. Also, don't assume that things will only get progressively worse. My experience was that I was diagnosed 5 years ago, and my worst year was 3 years ago. At that time symptoms such as fatigue, body pain, depression, anxiety, and digestive problems made miserable! Some days I could hardly get out of bed and I was afraid to plan to attend any social events or take any trips. Then my neurologist and I started working on one thing at a time. I now take the lowest dose of an antidepressant each day, half of the lowest dose of a med. for my anxiety when needed, a prescription to help with the pain (which may be Parkinson's or Fibromyalgia - the diagnosis for this doesn't matter to me; I just know I now don't hurt!). I also saw a gastroenterologist who helped me figure out how to deal with my digestive problems. Since then things have gotten better and better! Once I started to feel better I started to take classes like T'ai Chi Chih, and I firmly believe that exercise plays a huge part in my well being. My husband and I even took a trip to Great Britain and Ireland this summer and had a great time - something I would not have believed possible 3 years ago!
Good luck, and remember that there can be a full and rewarding life after the diagnosis! Don't give up!
Jack, all of the suggestions you made are valuable! Because I also have other medical conditions, as do many of us, I have quite a list of meds, so getting them organized was definitely step #1. I have come up with little tricks to remind myself to take my meds and also to let me know that I have done so. I find that at times I ccouldn't remember if I took a pill or not. Some people use a checklist that they mark each time they take their meds. Now I move the bottles in such a way that I know that I have taken that pill - for some I turn the bottle over, for others I move them to a different spot. Whatever works for the individual is fine.
@A MyParkinsonsTeam Member
A few months after I was diagnosed (late diagnosed) I got hold of aa wonderful book The New Parkinson's Disease Treatment Book, by a Mayo researcher & clinician, Dr J. Eric Ahlskog, PhD, MD..
Just one of the things I learned:: the part of our brain that initiates walking is not the same part that helps us continue to walk. That is a reason for the foot freezing that occurs followed by the ability to continue OK until or unless a turn, or stop or doorway intervenes.
I am sure you can get from local library.
Good luck, los of fine, supportive people here who do understand.
@A MyParkinsonsTeam Member, Of course you are right by pursuing information. Undoubtedly, you will come up with a few ideas and strategies that will help to minimize or mask the symptoms. Along with that, you need to take care of yourself through good nutrition, plenty of exercise and rest when you need to. Get support from your family and friends, get a doctor that knows what he or she is doing, and using a little prayer time and trust helps too. My doctor says that all of my symptoms are there because of the PD. That being said opens a big bag of issues because my symptoms may be different than yours. I guess what I'm saying is that getting the research and reading help, always remember that there is no magic bullet or instant remedy that fixes everything. Good luck and best wishes to you.