Valuable Advice for Parkinson’s Disease ‘Newbies’
You have been asked to speak to a group of newbies in the Parkinson’s world. You have been asked to share with them wisdom you have gleaned from walking this journey of having Parkinson’s disease. What will you tell them? This is what I might say:
- You must exercise! Exercise! Exercise! This is probably the most important piece of advice anyone can give or receive regarding dealing with Parkinson’s disease.
- Leave your pride in the doctor’s office. Accept help.
- Find a movement disorder specialist as soon as possible. There really is a big difference in the type of care you will receive.
- It’s quite easy to be anxious about your diagnosis. It is not a death sentence, and many, many people with Parkinson’s disease have gone on to live very productive lives after being diagnosed.
- You will find you are stronger than you ever imagined you could be.
- Make your health a priority.
- Take someone with you to your doctor’s appointments to help you remember what you wanted to ask and to help you remember what the answer was!
- Fight for your life. There will be hard days, bad days, and oh, so great days. Relish the great ones and fight through the harder ones. You will get through!
- Don’t spend quality time focused on what you can’t see or can’t know: the future. Don’t regret things from the past. Focus on living in the now.
- You are not alone in this journey. There may not be a cure yet, but there is definitely a community.
- Everyone wears the coat of PD differently.
- PD is sooooooo unpredictable.
- Try not to begin more than one medication at a time so you are able to tell how you are reacting to it.
- Some friends will leave your circle of friendship because they can’t relate or understand what you’re now going through. That will leave room for new friends who do or want to understand.
- Find out as much as you can about Parkinson’s but don’t believe everything you read.
- Time is precious. Make the most of it, starting now.
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What advice or encouragement would you offer someone who is newly diagnosed with Parkinson’s disease?
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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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Comments
Steven Sorenson
I agree with the advice on exercise and would suggest a goal of one hour per day focused on your range of motion.
I would add to your list to be prepared for a range of issues related to continued employment and/or retirement:
1) employers to treat you differently, including encouraging early retirement, whether your savings will support it or not
2) disability income coverage payouts which at 30 to 40% below your current wage barely cover COBRA premiums
3) disability payments which are difficult to reconcile and frequently off the promised schedule
Prospective and current employers eliminating you from the candidate pool due to ADA clause allowing employers from standard rules when continued employment with accommodations for your handicap 'places an undue hardship on the business'.