Exercise

You’ll start hearing this a lot. Exercise is the best way to slow PD progression.
Join a gym, do yoga, boxing, dance, etc. PD specific exercise classes work better for me.  Even if you’re not feeling so great, go to the class anyway because just getting out into the social setting is good for your mental health.

I'm more likely to have an excuse to avoid exercise than go do something so the PD specific groups are smaller and more supportive to go even if I'm not feeling so good.  Going to a gym tends to be a negative experience for me, too many "A Type" exercise people saying things like "it hurts but it's a good hurt."

A few Parkinson's specific exercise programs I know about near New York City

PD Treatment

Parkinson's Disease can't be cured, but medications can help with the symptoms. In some cases, Deep Brain Stimulation (DBS) surgery may be suggested. Your doctor will probably also recommend lifestyle changes, especially exercise.

]You may find run into some scams online that claim cures. The cure may involve going to another country for the cure. It may be about people taking a bunch of vitamins and herbs for the cure. There is no cure for Parkinson’s disease. People don't die from having PD, but you can die from PD complications such as choking, falling, infections, and skin cancer. 

The gold standard is carbidopa levodopa which takes various forms, time released pills, pumps, injections. There are also other meds that work with carbidopa levodopa. It's all a balancing act that you and your movement specialist will continue to adjust over time.  Don't let someone else's treatment affect your own decisions because everyone is different.

Team Fox NOLA: Pedal for Parkinson's

Join Team Fox NOLA as they cycle away those holiday pounds with star instructor, Jeff Schiffman! Get a healthy jumpstart to the New Year before we indulge in king cakes and daiquiris with a 50 minute ride while fundraising for this important cause. Registration fee includes: bike, shoes, towel, and class fee.

100% of all money raised will go directly to research for finding a cure for Parkinson's disease!

Refunds will not be available. If you register and can no longer attend, please let us know so we can open your bike up to another registrant. Please visit teamfoxnola.org to learn more. 



Medication Off Times

I'm told I am lucky to respond to Sinemet and have been taking it since 2012.  The bad part is the medicine is only effective for 3 hours, and then it wears off pretty quickly. I've tried extended release and am currently taking Rytary which is supposedly longer lasting with a mellow wear off but it only lasts 3 hours and wears off quickly too.

The time while meds aren't working is called the "Off Time." For me this involves stiffness, neck and shoulder pain, lower back pain and a bit of anxiety.  I've described my "off time" as walking in a swimming pool, when I try to move my legs or arms there is a lot of resistance. Oh, it's not relaxing like lounging in a pool.

Tell your movement disorder specialist if you're having off times. Keep a log of when they occur and for how long. 

Your doctor may change doesages or the timing.

There are other options too. Injections, pumps and brain surgery. My doctor thinks I'd be a good candidates for deep brain stimulation (DBS). DBS is a type of surgery in which a device is implanted in the brain to deliver electrical pulses and decrease the motor symptoms of PD.
Everyone responds differently to the various PD treatments. There is no one solution that works for everyone. As PD progresses, your doctor will adjust meds and treatment options.

Unity Walk

Parkinson's Unity Walk Join thousands of members of the Parkinson’s community as we walk together in New York’s Central Park to raise funds and awareness for research.

The 25th Walk will be hed o Saturday April 27, 2019.

unitywalk.org



#PUW2019

Traveling with PD

My wife planned a great trip which involved three countries, trains and planes. She built in down time for my rest. So now it's the big day, we're off to the airport. I've got this. I can do it.
So away we go. Trip of a lifetime. Planning for months.

On the first night of our 3 week trip I have a meltdown and ruined the trip. After the fact I realized I was feeling like felt prior to beginning the PD medication. Angry, screaming and obsessing. I also appeard to be disinterested (masking) in things.

I remained this way for the first 10 days (through two countries) and when I got off the train in country #3, I felt my meds suddenly kicked in. Releasing an unrealized grip on me. 

Whatever was going on had stopped and I felt okay again. Two weeks to adjust after a 7 hour flight? Jetlag was the official diagnosis.

So here are some recommendations to help reduce your own travel stress:


  • Take direct flights if possible
    • Less stress, quicker, better to sleep on the flight
  • Get an aisle seat on the plan for those urgency times
    • Be sure to drink fluids and walk around while on the plane - yes it will make you pee that's why an aisle seat is good.
  • Keep at least one day's dosage of medication in your pocket or purse.
  • Carry all of your medications with you while traveling, just incase your luggage is lost or delayed.
  • Pack enough medications to last the entire trip plus enough for an extra week, just in case.
  • I switch my medication times to local times but check with your doctor for professional advice.
  • Make sure all medications are labeled and in their original labeled containers.
  • Write down the names of your doctors, insurance company (better yet copy your insurance card, front and back), emergency contact, and medications. Keep with your passport, in your wallet or purse.
  • Get a doctor's note explaining your diagnosis and the medications traveling with you.
    • Just in the event you get questioned about all those meds
  • Carry identification stating that you have Parkinson's disease.
  • Use a "fanny" pack or backpack so that you have your hands free to balance as you walk, especially if walking any distance.
  • Pack snacks and carry a water bottle to take medications.
  • Plan to do nothing your first day
    • Going out the day you arrive in a crowded, strange city that speaks a foreign language can turn a "simple" task into a stressful ordeal, leaving you exhausted, dehydrated and starving.
  • Plan downtime during the trip too. Relax and do nothing. Even little things can become a big thing in a foreign land. This may be hard for the "Type A" traveler.
Medications in pill or other solid form must undergo security screening. It is recommended that medication be clearly labeled to facilitate the screening process. Check with state and country laws regarding prescription medication labels.

You are responsible for displaying, handling, and repacking the medication when screening is required. Medication can undergo a visual or X-ray screening and may be tested for traces of explosives.
The Transportation Security Administration (TSA) set up the TSA Cares helpline to provide travelers with disabilities, medical conditions and other special circumstances additional assistance during the security screening process. Call 72 hours prior to traveling with questions about screening policies, procedures and what to expect at the security checkpoint.
Go and enjoy!

PD Support Groups

There are PD groups for support. Some specific to YOPD, men, women or care givers.  Get on the mailing lists from the movement disorder department at local medical centers. Search around.

I’ve wondered for a long time why there is only one young onset (YOPD) support group and why it has such a small turnout. I think I figured out the reason. Apathy and lack of Initiative--two issues associated with PD which probably keep people from getting their butts out the door and to support groups.
I know of several groups but can't ifnd their websites.  I'm trying to avoid putting email addresses and phone numbers in my artiles to reduce the number of calls and emails organizers receive.


Getting the diagnosis

Years before the movement issues, my symptoms started before anyone would think I might have Parkinson’s Disease (PD). One non-motor symptom at a time. Never connecting the dots. Loss of smell. Constipation. Paranoia. Disproportionate Anger (rage). Choking. 

Then suddenly I went from easy going, "ready to go anywhere" to having anxiety over the weirdest things. It's when acorns started piling up on my front walk that several people told me I was nuts. I saw a few psychiatrists and therapists. These specialists have a well earned stereotype of attracting the crazy people into the field of psychiatry and psychology. My favorite treatment was from a therapist who moaned on in my sessions that she had to get over issues too, she was too short to be a super model. And her solution to my panic attacks was to snap a rubber band on my wrist. That's all. If I get a panic attack, just snap the rubber band and like shout the preacher in Alabama, "anxiety be gone!" By the way the rubber band idea didn't work. The anxiety was connected to a lack of dopamine. There really is a long list of common symptoms for PD each on their own could be many things. 

If you’re new to the PD world, here are just a few non-motor symptoms associated with PD:

  • Mood disorders (depression, anxiety and irritability)
  • Cognitive changes (problems with focused attention and planning, slowing of thought, language and memory difficulties, personality changes, dementia)
  • Hallucinations and delusions 
  • Orthostatic hypotension (a drop in blood pressure when standing, light-headedness) 
  • Sleep disorders (insomnia, excessive daytime sleepiness, vivid dreams, talking and moving during sleep, restless legs syndrome) 
  • Constipation 
  • Pain 
  • Fatigue 
  • Vision problems 
  • Excessive sweating 
  • Dandruff (seborrhea dermatitis) or oily skin 
  • Urinary urgency (frequency and incontinence) 
  • Loss of sense of smell 
  • Sexual problems 
  • Weight (loss or gain) 
  • Impulsive control disorders (binge eating, excessive shopping or gambling) 
  • Soft voice 
  • Masking (no facial expression) 
  • Drooling or excessive saliva 
  • Speech 
  • Small handwriting
  • Choking 
  • Swallowing problems
The non-motor symptoms have a long lead in time, at least a decade before classic motor related symptoms appear.

In 2012 things got really bad. The motor symptoms began. I was shuffling my feet. I had extreme stiffness in my neck and shoulders. I couldn't walk two blocks without stopping to rest my back.

My wonderful wife and my primary care doctor did the detective work.  They put everything together, all the symptoms and insist I see a neurologist.  By the way, my wife also found the primary care doc! I am lucky, she not so lucky. A PD caregiver's life is no picnic.

The neurologist ran some motor tests but the real test was when the doctor prescribed a trial of Sinemet (Carbidopa-Levodopa), my symptoms were better right after taking this med, the neurologist diagnosed it as Parkinson’s.

PD or Young Onset Parkinson’s Disease (YOPD) which is the label I was given because the diagnosis was before 50 years old, affects everyone differently. You may or may not get tremors. You may or may not have a slow gait. Etc. It’s all so variable. 

Find a movement disorder specialist (a neurologist who has a specialty in treating PD) that you like, don’t worry about switching doctors. My first movement specialist wasn't the greatest match, the second guy was great and stuck with him for a few years. At a seminar on PD treatment options I met a cool young doctor and made an appointment to see him. I am glad I checked out my options because he's great and I feel very comfortable with him. 

Note that it’s not uncommon to change your PD doctor a few times.