Never Say This To People With Parkinson Disease
Hope For All
Not Just Old People
The youngest person with PD I have met is 26 years old. He is hospitalized because of the violent tremors and breathing problems. I have met teachers, nurses, doctors, and some very young people with PD. I am blessed as I can walk and function. I am able to reason and work part time, if only a few hours. I have composed a list of what I think it takes to get though.
* be tough
* mind straight
* keep your focus on what you love
* find a neurologist you can communicate with
* take the right medication
* do your physical therapy
* never give up
I know another person who was 42 when they diagnosed her. The big myth is Parkinson's is for old people. Many people have family members who have this disease, but that is not true in every case. I have not one person in my family that I know of that had Parkinson.
When you are first diagnosed it is very strange. There are five stages to the disease. The doctors can only treat the symptoms of the disease, there is no cure. This has been the most humbling experience of my life.
I Live By These
You have to be tough to get though. There is nothing I can do to change it. I try and keep my mind straight, and if something is not right I let it go. I focus on what I love, Jesus, family and my guitar. I have also found out the guitar keeps the big tremors silenced. I wonder if that would work for other PD patients.
I have finally found a Neurologist I can communicate with. It took me 3 years but it was worth switching doctors. I can ask this doctor anything, and I can call him if I need him. Take the right medication, even if it means getting a new doctor. Who really knows, some may do better without the medication. Only you can answer how you feel.
Do your physical therapy, and remember to be as active as you can. Exercise is extremely important with PD. Remember you are strong so never give up. One last thing, I never compare myself to other PD people. If one person can walk a mile and I can only walk to the mail box, a hundred feet, I am grateful for what I can do.
What You Never Ask
I went to the dentist and his first question was, How is the dementia? I do not have dementia at least not yet. The aging process can cause just as much dementia in people without Parkinson. I have a friend that also has Parkinson, and she told me, no one ever ask me how I am just how is the Parkinson. I try and remember what she said and ask how the person is not the disease.
Are you on drugs? No, I just take my prescription drugs. I wonder how many other PD patients have been asked this questions. My friend I was with got so mad and I told her it is fine. I really can not waste my time worrying about what others think.
I was in the hospital last month from sever pain from cramps. A friend came to visit and the first thing she told me was she has watched me go downhill the last 3 months. It does not hurt, but reminds me to build up and never tear down.
Books on Parkinson
- Parkinson Secrets - Treatment tips for patients & caregivers -- ParkinsonSecrets.com
Parkinson's disease treatment tips and secrets for patients, family members, and health care providers are provided on this site. This website addresses what Parkinson's patients can do to improve their lives while they wait for the cure.
- Addicus Books – Books to Educate and Comfort
Books to Educate and Comfort
We provide health information from top experts in their fields and offer insight to those who want to live well with chronic illness or disabilities, provide informed support for loved ones with health concerns, and improve their daily lives with sma
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Some Helpful Things
1. exercise - walk, ride a 3 wheel bike,
2. keep active, music, playing the guitar seems to keep the resting tremor calm
3. stay social
4. call people
Try and get a new hobby and share it with others. Read everyday to keep informed of what is happening near you. The disease has brought some positive changes, increased my faith,hope, peace and love of others.
Parkinson's Treatment 10 Secrets is one of the better books I have read. It was given to me by a parishioner from the church I attend. I was very grateful for the book as it makes the most sense. They have a wonderful department at the University of Florida where Dr. Okun works. I am very fortunate to live close to Gainesville. Updated, January 31st. 2017. I started my treatment at Dr. Okun's clinic and so far it seems to be the best movement center. I had my first visit in January and found the Doctors to be great. I have learned I must always have a neurologist that specializes in Parkinson's.
The book is written for the common person and you do not need to be a doctor to understand it. Everyone wants their dreams and hopes to continue no matter how old. When you hear those four words it can crush you if you let it. You have Parkinson Disease.
PD patients have good and bad days. Take advantage of the good ones.