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https://www.michaeljfox.org/news/young-onset-parkinsons-disease
PD is a Motion Disorder. Don't stop moving. Exercise is the only thing known to help slow the advancement of PD.
Your brain has a reservoir of chemicals that will last approximately ten years. Declines and plateaus occur.
Exercise, Exercise, Exercise.
Diet: Watch out for PROTEIN. It interferes with the absorption of Levodopa. Dairy products can really be a problem.
Keep on lights at night. Keep lights dim. Lights help prevent falls and can help minimize hallucinations.
Join a support group. They are not complainers, they are explainers.
GAD - General Anxiety Disorder. This is a biggie. Talk to your Doctor. Use meds but, also learn meditation to help control GAD. Learn what triggers your anxiety and take steps to minimize it before it happens.
Speech Therapy or dilation of the esophagus by a Gastro Dr. can help with swallowing issues. A teaspoon of honey may help a pill slide down the throat easily.
Use a pill crusher and add med to food or drink for quicker absorption or if swallowing is difficulty. It is okay to crush most meds. (Does not include Extended Release {ER} version)
Medications have side effects and "side effects are okay." Be wary! Observe and keep a journal of what happens when you take a med.
Benefit versus risk. Which is worse for you, the PD symptom or the side effect that happens when you take a medication. Just a few of common side effects:
hallucinations: may be visual and/or auditory
impaired thinking
personality change
sleep disorders
double vision
Sunlight may be the answer to a sleep disorder. Circadian rhythms might be out of sync.
Financial assistance. PD medicine can be costly, and it is for the rest of your life. Contact drug manufacturers, many have assistance programs.
WARNING: There is a 2-year waiting period between receiving disability and receiving Medicare. This means No Insurance for two years.
After a surgery with general anesthesia, there is a phenomenon that may occur: Music, playing over and over, but it is not really there.
Intimacy - Yes, please. It is okay. Discuss with physician or psychologist if problems occur.
Difficulty using computer? For Windows users, learn about "Ease of Access" in the Settings menu. Computer will read to you, type text as you talk and magnify screen.
Caregivers: Give them a break. As much fun as you are to take care of, your care partner needs their own time. A few hours a day, week, month or whatever you agree upon, be considerate and gracious.
Remember:
IT IS YOUR BODY, YOUR MIND, YOUR CHOICE
Go to parkinsons.org and get an AWARE IN CARE kit for your boyfriend and Top 10 Caregiver Essential Resources.
If you need any info or support at anytime, I am always willing to help. I have dealt with PD for 18years.
https://danceforparkinsons.org/
If you watch the first video that pops up, you'll notice people with a variety of strengths and limitations, standing or sitting. That's one of the great aspects of the movement, that it can be adapted to individuals individually even though they're in classes.
Scroll down to about 1/2 of the page and you and your BF can try out some classes at home and see if they help him and/or if he's comfortable with them.
Here's a schedule; I believe they've been streaming videos due to CV 19.
https://danceforparkinsons.org/resources/dance-at-home
If he can devote time to moving, he can postpone a lot of trouble. Falls are prevalent when the disease advances - it’s called “The Falldown Disease”. It’s also a muscle wasting disease. Boxing, running, building muscle all help prevent falls and will do him a world of good down the road.
My Dad was diagnosed when he was 88, he’s probably had it for 15 years. So Rock Steady couldn’t help him. Now, at 93, he’s still in pretty good shape, for his age and diagnosis. He walks with a walker, has troubles with speech and swallowing (muscles involved). He’s had a lot of falls but has never been injured beyond some bruising, but he was diagnosed at an advanced stage.
Try to not borrow trouble. Don’t look at what might happen in 5 or 10 years, or even next month. Take one day at a time. Keep a positive outlook. Keep your neurologist or movement disorder doctor as your partner, find one you really like.
if you type “Parkinson’s” into a search engine, you should be able to find some forums to join, they are a wealth of information.
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