(38) MY PD: positive reflection & activities.

😀 Smile with me: Tremor Knower 😀

Because of my tremors, the following rumours are not true:

(:-) The local SPCA is hiring me to pat their dogs; and 

(:-) a local fireworks company is hiring me to light matches quickly.

Labeling my PD

Parkinson's Disease (PD) rattles me on a daily basis. My monthly Parkinson's Disease (PD) out-poring in this blog releases part of my agitation, the completed post being the equivalent of a mild sedative. (Sigh!)  

When trying to define a PD moment or to describe my response to it or to share a strategy, it is authentic. What I'm grappling with is a broad label which will aptly describe this. Are there such labels? Does it matter if there aren't and I or you create them? Let's go down this rabbit hole, dear reader, to see if...

YIN & YANG My PD is something cold and dark inside me. In previous posts I have described my PD as experiencing a terrorist strike on my health and having my body hijacked. It's a scary space in which to be. While such thinking about my PD becomes a source of negative energy representing a cold, dark part of my life, writing this blog from a first person perspective (that is, subjectively) also allows me to view my PD from a distance (almost "objectively") and to accept my circumstances! 

In short, my Blog transforms the stark, dark, cold reality of my PD into stories that are a source of positive energy, that make me feel bright and warm when published. Maybe I'm reading too much into my writing but what I'm expressing is a set of feelings that exist as a pair of opposites, like the notion of Yin & Yang.

In the principle of Yin & Yang, where positive and negative elements always coexist (like the PD in me), the ideal is to find a balance between the dark (Yin) and the light (Yang) as an increase in the one means a decrease in the other. I have found the semblance of balance via a monthly blog, that sort of falls into the category of Yin & Yang! There certainly is a co-existence of the 'positive' and the 'negative'! So maybe this is apt...            

 

PINKY & BRAIN In Post 16 I assumed my PD struggle was represented by laboratory mice, where my PD is "the character Brain, while my resistance and fightback is represented as Pinky. The more PD (that is, a Brain) tries to convince me that I am on a downward spiral, the more I resist and present a conscious fightback so that my muscle memory (driven by a Pinky) responds appropriately." 

This appears to be another label and it resembles Yin & Yang. In addition, the Pinky (alter ego = "other I") & Brain (ego) analogy connects the "subjective", first-person perspective of me, as information source and a parkinsed person, to the "objective" nature of the the completed product, this Blog.    

I will allow you, dear reader, to decide whether Yin & Yang or Pinky & Brain is the more appropriate label to describe my PD. (While both are apt, I'm leaning toward one. If you have an opinion, then PLEASE EMAIL IT TO ME, together with the request below.) The reason I am engaging you in this process is my growing sense of frustration with my hijacked state. Walking is increasingly becoming an issue so I have to use greater amounts of will power each week to walk outside and to exercise inside. And, remember, I have been more sedentary this year! 

REQUEST: paint-by-numbers project

I'm still prone to procrastinate, something that you also may be experiencing, so let me make this request. A month ago I bought my first paint-by-numbers kit - containing numbered pots of paint with corresponding numbers on a printed picture on canvas - and it is still on my bookshelf. I'd like to complete this project before my next post. Sharing this info may energise me into doing it, so please read on! 

👀  REQUEST: PLEASE EMAIL ME this following question BY 30 NOVEMBER 2022: Ari, is your paint-by-numbers project complete? Each reader who sends me this reminder (just put the question in the Subject line of your email) will receive a copy of the completed picture by email. OK?  <ari.naidoo@gmail.com> 👀   

MY PD: November 2022

I'm frustrated and still trying to be realistic about being parkinsed. I understand that I need to deal with this new reality. 

I'm proud of my academic qualifications, namely, five degrees and a diploma. However, after I retired, these qualifications and the title of "Dr." are not part of my new context of a parkinsed husband, father and grandfather. Facilitating learning in classes of academic staff, both online and contact, is part of an expired reality that is in the past. My new reality is learning how to survive with Parkinson's and without drugs, so let me PRESS THE RESET BUTTON now and get "undepressed". 

Let me share some observations that, upon reflection, make me feel a whole lot better. Some activities have been mentioned in previous posts but let me re-remind myself and you, dear reader. I will start with the video of an exercise song (please turn up the volume) sung by Julien the lemur in the movie Madagascar. His picture is below.

Here's my list of observations involving a range of my activities in which I have 'to move it'.

PHYSICAL ACTIVITY: Walking

As described in post 37, I try to walk outside for at least 10/20 minutes three times a week. Outdoor walking with my caregiver is followed by 20 minutes of stretching indoors. When the weather is poor then I cycle indoors on my mini bike (reviewed in post 19). 

PHYSICAL ACTIVITY: Facial
It's a good idea to do face stretching exercises daily to attempt to counter the standard, expressionless "angry face" worn by those of us with PD. It helps if you are able to do these facing a mirror, preferably while seated. When you start to "feel" you are on the right track you can also do them lying down, with someone watching you if you are prone to choking. Naturally, the number of repetitions will depend on what is manageable. 

I like to start with (1) an exaggerated smile with closed mouth, cheeks pulling upwards, followed by (2) an exaggerated sad face pulling my lips and cheeks downward (not pouting), after which I will (3) puff up my cheeks by filling them with air (lips still closed) and repeating (1) and (2) with air-filled cheeks. Then (4) frown as hard as possible creasing the forehead followed by (5) un-frowning and finally (6) moving both ears backwards and (7) forwards, which can be more difficult than it app'ears'. REPEAT>>   

Then I do few tongue exercises by (8) sticking out my tongue straight ahead without curling the tip, followed by (9) stretching the tongue to the right, to the left, upwards and downwards. REPEAT>>

PHYSICAL ACTIVITY: Stretching

These are standard but the transition time of each set and the time between (1) and (2) as well as (3) and (4) will depend on how much strain is placed on various muscles and how well you cope. 

(1) Both arms are stretched in front of me in line with my shoulders ensuring I look at my hands with outstretched fingers then (2) both arms stretched above my head while tilting my head upwards to look at my hands with outstretched fingers. Then (3) both my arms (hands with outstretched fingers) on either side of my body (right/left arm to my right/left side) till they are parallel to my corresponding shoulders. Then I move my wrists so my hands move first in (4) a clockwise then (5) an anticlockwise direction.   

PHYSICAL ACTIVITY: Hands

The simplest is for me is to (1) stretch both arms out in front of me then (2) at the same time quickly close the fingers of each hand tightly after which I then (3) open both fists quickly by flicking out all fingers on each hand and flexing them simultaneously. This action must be done using as much speed and energy as possible. REPEAT>>

Another is to repeat the above (1) but (2) I slowly move the thumbs inwards so they are touching each palm, then slowly move the second fingers so they cover the uppermost part of the thumb followed by slowly doing the same with the third fingers, ring fingers and pinkies, slowly making a fist. Then slowly reverse the action by moving the pinkies outward and straightened, followed by the ring fingers, third fingers, second fingers and thumbs until both fists are open hands. This action must be done using slow, deliberate movements. REPEAT>>

PHYSICAL ACTIVITY: Feet

In a seated position I straighten the knees and (1) raise both feet out in front of me and off the floor. Then I (2) curl the toes then point and stretch them. I repeat (1) and (2) and then rotate my ankles so my feet move first in (3) a clockwise then (4) an anticlockwise direction.   

MENTAL ACTIVITY:

All my current mental online exercises have been described in post 37 and I'm still enjoying them.  

CUEING: standing & walking from a seated or stationary position

Here I remember the name of a shampoo called "Head & Shoulders" as part of my cueing phrase ("cueing" was covered in post 27). Standing from a seated position is by far the most challenging action for me to complete. Floor covering (carpets, tiles, gravel) is critical as is the kind of chair and its weight. The greater the resistance between the floor and me seated in a chair, the greater my effort and level of anxiety to complete the action of standing up. 

In order to stand from a seated position, I ensure (1) my thighs are as far forward as possible on the seat with my bum at the edge and (2) my feet are as far back under the chair as possible. Then (3) I use the sides or armrest of the chair as a support surface to move myself forward, continuously saying to myself head-over-shoulders then head-over-heels and I initiate the intention to stand. To complete this intended action, before I stand (4) I fixate on a mark/spot/line/pattern on the floor or wall in front of me. This is called "spotting" (covered in post 7 - to assist me with balance when dressing). Often, I stand and walk. 

If I'm stuck then I use the popular emergency exit recommended by occupational therapists, which is to rock forward and backward until I have enough momentum to lift myself up and then initiate "spotting".    

"Cueing" has also become valuable for unfreezing me. When in the shower there are times when my right hand (my right side is the slower side) is unable to reach under my left armpit. So I have to say to my right hand "unfreeze" and without fail, it does! Another instance is when I stand up and turn to walk. My movement is jerky and unsure. I have noticed that, once standing, if I "cue" the right foot to move first and I indicate its direction and then do the same for the left foot, I do not falter in my steps when walking.  

Conclusion

At what stage of PD am I? I can only guess that it's advanced and I'm s-l-o-w-i-n-g down. No sweat, the worst case scenario is...errr...that it's advanced, so, let's keep fighting the good fight, right? 

Oh, you owe me an email before or by the end of November. I look forward to it (even if it's not in English). Till next time, dear reader, I... 

    

(30) The Good, The Bad, The Smugly: reflections

PD: The Bad

In my last post (29) I emphasised the importance of MOVEment for those of us who are parkinsed and I will do it again at the end of this post. When we're inactive for extended periods then our joints become stiffer, we lose the confidence to move and, after what is often unnecessary rest, we are in the grip of inaction. Well, that's certainly what happens to me! This thought (inaction: when an action is expected but doesn't happen) got me thinking about recent events. In post 30, I will unpack specific occurrences: firstly, after my Covid vaccinations and secondly, when I've had alcohol. 

COVID VACCINATIONS: the first occurrence of my Parkinson's Disease (PD) worsening was immediately after my first Covid vaccination. Besides having a sore arm and slight headache, I observed later that the vaccinations appeared to have protected me from severe Covid, which was good.

However, my PD symptoms also appeared to worsen, which was bad. For about a week after the vaccinations my tremors were severe. I was unable to exert partial control over the tremors as I am generally able to do.

Also, my right leg was more immobile than usual as I was dragging my right foot (NB: my PD started on the right side) when walking and I appeared to be freezing more regularly when attempting to rise from a seated position. I would literally be glued to my seat. Naturally, this generated much anxiety, resulting in more frequent freezing of such movements. I started to believe I was in a downward PD spiral and maybe my ten-year drug-free regime had been a huge mistake. 

After subsequent Covid vaccinations I observed the same results: increased tremors and temporary freezing of my right side. The Covid vaccines appeared to have triggered something that affects my conscious control over some of my PD. 

ALCOHOL: I have observed that whenever I had my favourite tipple my legs and arms would start to freeze while I was seated. The impact was the same as having a Covid vaccination: glue and seat! To ensure that I did not go to bed in this state I used to drink alcohol late in the afternoon rather than at night. My current Ayurvedic regime has made me more cautious about alcohol. I have also cut back on another favourite, my daily coffee, now opting for it weekly.

PD FALLS: in tennis, "unforced errors" are when players lose points as a result of their own, personal pressure resulting in their making errors when there's indirect opponent pressure. So, I will adapt that for PD. If I have fallen as a result of my foot being caught on a table leg then it is a "forced fall" and my fault. However, if I fall as a result of my PD causing me to be off-balance, then it is an "unforced fall" and not my fault. Whilst being parkinsed I have had an equal number of both "forced" and "unforced" falls. My last was an "unforced fall" a few weeks ago - that resulted in a sore shoulder, sore bum and a severely bruised ego - and the previous fall was 18 months before that, so 👍...

PD: The Good

After years of ignoring suggestions that I consider yoga - mainly because I am stiff, overweight and unfit - I have listened to my Ayurveda doctor who has recommended two yoga breathing exercises. In addition, my brother has recommended chair yoga. I do this chair yoga on alternate days and the two yoga breathing exercises twice daily and Dance for PD in between. The chair yoga is ideal for PD people so I am envious of the Kruger National Park giraffes below because as browsers they are able to move their necks, knees and spine in a way I cannot.

 

👌  CHAIR YOGA, specifically Gentle chair yoga has been a revelation. The 25 minute session of a range of muscle stretching and controlled breathing is becoming a powerful part of my tool box of confidence. I believe that although I am only 60% successful at completing each action, immediately after completing a chair yoga session I have had consistently greater success and confidence with the following: walking; putting on my sandals; rising from a seated to a standing position; or turning onto my side in bed. When I am unable to execute any of these four actions, what follows is freezing, tremors and unnecessary anxiety. And freezing, tremors and anxiety should be experienced as little as possible when one has PD. 

👌  YOGA BREATHING EXERCISE: the alternate nostril breathing technique is useful - if you are curious, then the short video link provides a brief introduction. Alternate nostril breathing can lower stress and improve your lung capacity. Therefore, your oxygen intake increases as does the amount of air exhaled. Breathing in and out through the nose is generally healthier than inhaling/exhaling through the mouth. 

PD: The Smugly

I have become unashamedly smug about the following four focus points in my life so I will share them.

PHYSICAL EXERCISE: my current walking action is my default stance of slightly bent knees and a slight stoop (no, dear reader, not a doorstep or threshold). The chair yoga appears to be correcting this for a few hours after exercising, so I am hopeful. I believe the yoga breathing is part of a long term plan to relax and assist my nervous system. All these are attempts to counter the effects of PD. Wish me luck!

HYDRATION: since my prostate reduction surgery in May 2021 that allowed me to stop taking two chronic medications (yay!) and weaning myself off regular coffee and alcohol I am drinking a lot more water (yay!).

MENTAL EXERCISE: reading, doing word games and crosswords as well as writing these posts - this is my 30th post (yay!) - has kept me sane and mentally fit. 

COMMUNICATION: I try to stay in touch with family (mostly in Durban), friends and acquaintances (in the country and abroad) because their presence is present. What a gift.  

Move it!

In the animated movie, Madagascar, there's a song called "I like to move it..." - in keeping with my present drive here's a YouTube video clip to make us smile. Till next time, dear reader...