Showing posts with label group. Show all posts
Showing posts with label group. Show all posts

PD Apathy is very real

I brought up Parkinson's Apathy to a group last week and was surprised I received a lot more response than I expected. Just knowing 5 or 10 other people also struggle with PD apathy is reassuring and helps me to not feel so alone with my long list of symptoms.

PD apathy is very real. I struggle to accomplish even the smallest tasks and I beat myself up because I have a ton of things that need to get done, all with a high priority. But I freeze up mentally when I think about it. The list grows and months go by on the calendar.

In an ideal world there would be a person who can help someone who's cognitively challenged to do things. Like a "task rabbit" but they are also trained in psychiatry or psychology. Someone who understands we're not being lazy. The neurons just don't connect to accomplish the things we need to do.

I try making lists, then lists of lists and it's not helping.

By the way, I'm calling this apathy but the inability to accomplish things might be another issue. The days pile up, turn into months and years.

How do you deal with the apathy–feeling of being stuck in quicksand, surrounded by a brick wall?

A few suggestions from the group were: 

  • Reduce clutter, make neat piles
  • Set realistic goals
  • Break tasks down into smaller tasks
    • ie: Clean Kitchen becomes wash dishes, put dishes away, mop floor, clean cabinets. 
  • Remember to take time off! If you're having a bad day, unplug and relax. Don't struggle to accomplish something every day.

I know, It could always be worse.

Pandemic Social Isolation, a familiar feeling

Some of you with chronic illness will relate. When you are forced to stay home due to your illness, cannot make long range plans, often forced to cancel last minute. 

People do not want to stand too close to you just in case it is contagious.  

Assholes talk behind your back, “do you think he has it?"

Say insensitive comments, "Looks like he had a stroke" or "He’s so full of shit.” 

Your usual support network is cut off, spending days, weeks, even months at home. Anxiety. Depression. Fear. Loneliness.  

POST PANDEMIC and the world gets the green light to go.


After the pandemic your life goes back to ‘normal’ which is pretty much how it’s been during the pandemic. Only getting out to go to doctors or pharmacy. Phone calls are trying to get prescriptions covered or make doctor appointments. 


And there are those lists. "If you make a list, it might be easier to accomplish things". I'll add that to my list right now.



Preparing for a 5K race

I’m preparing for a 5K walk to raise money!  Yesterday on my walk I discovered it’s exactly 5K or 3.1 miles from the apartment to the East River and back.  Today I took a different route only walked about 2.3 miles probably because there were more food options. What takes so long to prepare pan fried dumplings anyway? 

I’m going to plan a route with faster service so I can pick up the pace a bit. The event is in a few weeks and I’m supposed to be able to complete a 5K walk in about an hour.   I know I can do it!

SUPPORT my 5K Walk, even better JOIN ME on the walk, virtually. 

Please visit my personal page https://foxtrot.michaeljfox.org/spring/yonewyork.



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

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.