Me and PD.

davect01

Hall of Famer
Thanks to this thread I am going to talk to my doctor. Thank you. I've noticed loss of smell, and I have a running joke with God about making me drop something every single day, just because She can. I attributed the balance walking in a straight line to the stroke several years back, but I will have Doc Malabre check me out for PD. Thanks. Yes, I too hate thinking there might be a medical issue - this thread is a good gentle humorous nudge to get checked.
 

davect01

Hall of Famer
Thanks to this thread I am going to talk to my doctor. Thank you. I've noticed loss of smell, and I have a running joke with God about making me drop something every single day, just because She can. I attributed the balance walking in a straight line to the stroke several years back, but I will have Doc Malabre check me out for PD. Thanks. Yes, I too hate thinking there might be a medical issue - this thread is a good gentle humorous nudge to get checked.
P.D. can be a bit hard to sense at the beginning as it starts with what just seems like some minor annoyances. And the same early symptoms can often be from something else.

A doctor who is familiar with neuro diseases is the best resource and can help you narrow down what is going on.
 
P.D. can be a bit hard to sense at the beginning as it starts with what just seems like some minor annoyances. And the same early symptoms can often be from something else.

A doctor who is familiar with neuro diseases is the best resource and can help you narrow down what is going on.
Great. I am scheduled to see my neuro guy in a month or so anyway. Regular check-up after another stroke-like (but not a stroke) incident.
Thanks.
 

bilzmale

Super Moderator Emeritus
Jul 17, 2010
124
Perth, Western Australia
Bill Shinnick
As mentioned last week the motor or movement symptoms of PD are what most non-sufferers recognise. However, they are just 'the tip of the iceberg' as the non-motor symptoms are not obvious but are the lived reality of PD. Basically, any muscle group can be affected including speech and swallowing, bladder and bowel as well as the autonomic nervous system involving involuntary actions like breathing, blinking and so on. (My GP used my blink response changes as one of his preliminary diagnostic tests.) As well, many other brain-controlled functions can be affected as the chart below summarises.
Each person's set of symptoms is different and I liken it to being dealt a hand of cards in a poker game or bridge if you prefer.

Subscribe to see EXIF info for this image (if available)
 

bilzmale

Super Moderator Emeritus
Jul 17, 2010
124
Perth, Western Australia
Bill Shinnick
20 minutes left of Friday and just time for another post. I want to talk about fatigue, one of the non-motor symptoms. At least 50% of PD sufferers have trouble with fatigue and it is rated in the top 3 worst symptoms by 58% in another study. Tiredness is eased by rest and sleep but fatigue tends to persist. It will vary day by day and even hour by hour. It may be a result of motor symptoms, like stiffness and slowness, making the muscle groups work harder or even against each other. It may be made worse by disturbed sleep due to difficulty changing position or needing to use the toilet. It can be affected also by depression which I have struggled with for over 20 years.

It can be helped by exercise (that universal panacea), by pacing oneself, by planning, organising and delegating non-essential tasks. Fatigue for me is my second most troubling symptom.
 

Briar

All-Pro
Oct 27, 2010
124
Scotland
Karen
I’ve suffered a type of fatigue once in my life time. One day I was fit and healthy, the next I was beyond exhausted. Overcoming the urge to lie down took real effort. It was like gravity was fighting with me. I felt completely drained and my blood pumping through my body just felt fuzzy. Beyond the obvious physical difficulties the extreme exhaustion caused I found even talking and listening to people took real effort, like I had to fight through thick brain fog to grab a word and pull it to the surface. It was an awful time. This went on for a period of months and then thankfully resolved. It was following the sudden death of my brother so it was grief/stress related. I think it took about a year before I finally “breathed”.

I can only imagine the effect your fatigue has on your quality of life. Keep strong and make most of your good days!
 

bilzmale

Super Moderator Emeritus
Jul 17, 2010
124
Perth, Western Australia
Bill Shinnick
The non-motor symptom of PD that I find is my number one bugbear is Apathy. Again like so many of the symptoms not everyone with PD will experience at all or to the same degree. I describe it as 'my get-up-and-go has got up and went'. Medical opinion still varies over whether apathy is a thing or just part of depression and it is not easy to measure on a scale. Estimates in research vary a lot but it seems up to 40% may experience it.




Apathy is defined as a lack of motivation. In PD, it shows up in three forms:
Cognitive. Loss of interest/curiosity in new things.
Emotional. A lack of passion or reaction to news or situations that normally would evoke an emotion.
Behavioral. Trouble initiating activity, a need for others to prompt one to complete tasks.

I have been treated for depression for over 20 years and can tell the difference between my depression self-talk (I want to die); and my apathy self-talk (It's too much trouble). Add that to fatigue and I'm a real bundle of joy to be around some times. :roflmao:

No wonder sometimes PD sufferers are considered to be self-absorbed and lazy. Treatment is difficult but again exercise is encouraged and some medications seem to lift apathy while others can make it worse. Having a regular routine and maintaining social and hobby links do help.

I said apathy for me is currently the worst aspect of my PD. I am managing the motor symptoms for now although I realise they will continue to worsen but apathy seems to have sucked a lot of my self identity out of me and I do not recognize the person I'm becoming.
 

bilzmale

Super Moderator Emeritus
Jul 17, 2010
124
Perth, Western Australia
Bill Shinnick
...... but apathy seems to have sucked a lot of my self identity out of me and I do not recognize the person I'm becoming.
That got a bit heavy and I surprised myself. My major coping strategy is to 'intellectualize'. I research obsessively, believing the more knowledge I have the better I will understand and cope.
That sentence tells me I've been ignoring/denying my emotional response.

I've spent the last fortnight digesting that insight and the black dog has been off the leash for most of that time.

But I'm back.
 

davect01

Hall of Famer
That got a bit heavy and I surprised myself. My major coping strategy is to 'intellectualize'. I research obsessively, believing the more knowledge I have the better I will understand and cope.
That sentence tells me I've been ignoring/denying my emotional response.

I've spent the last fortnight digesting that insight and the black dog has been off the leash for most of that time.

But I'm back.
A good support system of those who understand (as much as an outside observer can) can make a massive difference. Not to say that this will solve all your bad days and moods, but it can be a good check and balance.
 

Briar

All-Pro
Oct 27, 2010
124
Scotland
Karen
I wonder if any of our younger selves would recognise the people we have become today. Life’s experiences and challenges make us change in so many ways that I some times wonder who it is that’s looking back at me in the mirror.

Hang in there. We might not physically be with you, but we are still with you.

You know life sucks at times but it always throws in the good with the bad.
 

Briar

All-Pro
Oct 27, 2010
124
Scotland
Karen
This puts me in mind of a conversation I once had with someone about absolutes. He asked me if I believed there were such a thing as absolutes in life. After much thought, I said there were no absolutes but, of course, as soon as I said this I realised that I’d just made one.

So, what I’m badly trying to say, is that I do see the point you are trying to make.

Going back to my original comment, I will rephrase it to say *generally* life throws in the good with the bad.

Just try not to focus on the bad and let that be what defines you.
 
Last edited:

Latest threads

Top Bottom