Communication with People Suffering Parkinson’s Disease (PD). Some Observations from Pete-1. A Contribution to World PD Awareness Day

This post is primarily aimed at those of us who do not have PD.

I may have a tremor or I may be slow or I may become immobile for a while as though glued to the floor.

But for a person suffering PD that's about all there is - isn't there?

Well, erm no. In fact the one thing that marks a person as suffering PD for most is the tremor or shaking and that is one symptom that I don’t have. There are many problems that remain invisible to those outside my orbit or even to those within it. If I count up the number of signs and symptoms that I have to work around then I get up to 40 and I am nowhere near the total possible

A collection of symptoms commonly experienced by those with PD affect the way we interact with the rest of the world. One of the first may be a "masked face", a deadpan expression that expresses nothing at all. We don't often smile or grin or make any type of meaningful expression without concerted effort. When normally a facial expression conveys so much more than we are aware of. And that deadpan expression may be construed as being rude or disinterested or perhaps lofty.

Most people are aware of body language at least to a small degree but it is not commonly known that the words used in conversation with someone only constitute about 7% of what passes between them. The other 93% is often hidden from direct or conscious awareness. This 93% is body language, tone and volume of voice and one more, odours too may play a part.

With these tools of communication many subtleties are permitted in normal conversation. But what of these tools for the victim of PD?

The first that springs to my mind is the softness, the quiet whispery voice that we develop and quite often we are oblivious to those listening but for them it is really trying. Fatigue and breathlessness can mean that sometimes I run out of breath and am unable to finish a sent.....

One of the first symptoms for many is the loss of a sense of smell - this, though not particularly significant does impoverish our lives and encourages the feeling of distance or remoteness with others as we fail to share the same awareness of our shared environment.

And there's more, we PD people sometimes drool or dribble if you prefer. This is because we do not automatically remove by swallowing an accumulation of saliva until an overload occurs. This is liable to be embarrassing and although not an invisible symptom is not obvious in the same way as a tremor and also helps to mark out a PD person as different.

Cognitive symptoms may arise, for example I sometimes struggle to find the right word and may well settle upon a word that does not convey the meaning quite as I intended. For some this problem gets worse and may be exacerbated by also developing hallucinations.

Some people suffer much worse cognitive difficulties with memory problems and maintaining an attention span long enough to sustain a conversation. Incidence of depression is higher than normal with 40% suffering from “the blues”.

So if I can't communicate effectively with people verbally how about if I write things down? - that's a good idea . . . . well isn't it? Erm no! my handwriting is all but illegible. "But couldn't you use a computer" - ah well yes but not at the counter of my local corner shop. Any other written / typed word has to be very carefully checked because my typing has so many errors included.

After minimal exertion I get so fatigued with a back aching so much in a way that is not so much painful as it is distressing that all I can think of is sitting down so that I can rid myself of this discomfort, this distress that accompanies my fatigue.

With all these problems I'm sure I'm quite hard work to talk to. Hard work to the extent that I wouldn't blame you if you diverted your attention away from me.

One last problem that has an effect on communication in only a minor way is my vision. Which tends to be a little blurry and most of the time I am unable to automatically keep both eyes converged upon any object that I am looking at. This means I have double vision and I walk around seeing two of everything. This effects communication because it is a distraction for me. It is something I have to work on rather than allowing my brain to automatically see and interpret the world before me. So I am not able to listen to you as well as you might hope.

In summary the list of symptoms that interfere with normal communication are:

1. Expressionless face

2. Whispery quiet voice with little cadence.

3. Loss of sense of smell

4. Drooling

5. Cognitive impediments

6. Illegible handwriting

7. Fatigue

8. Double and blurred vision. And one more

9. Is day time sleepiness and insomnia at night.

So when you are telling me a really exciting story well I'm sorry but I may just want to drift off to sleep now.

Add to these the ever present distraction of all activities made more difficult and a general feeling of malaise such that much of our energy is focused on doing things as normally as possible rather than giving you the attention you deserve.

With these symptoms and more, getting more intense over time, the failure to communicate as normal leads eventually to social isolation. Talking to people is just too much effort and in any case we don’t want to burden other people with our communication difficulties, far better to stay at home out of the way --- out of sight out of mind!.

PD World Awareness Day - 11th April 2015

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  • Perfectly stated. I have been trying to think of a way to tell "others" (non PwP's) what it's like to have PD, because I believe, 99% of "others" have no idea what we go through. I thought about sending an email to friends & family asking "How many symptoms does PD have? Then when they tell me the number they believe, which is probably around 5 - 10 symptoms, then write back & ask them to list those symptoms. I imagine the majority could not list those, let alone the 40 you mention. But then I ask myself, what is the purpose of doing this, is it going to sound like whining? Maybe, but what I'm really wanting to do is exactly what you did....explain why we are the way we are, why we give a blank expression, why we can't find the words to make a decent conversation, why we sometimes want to be alone. I believe if more people understood PD, they might be able to better understand us and not distance themselves.

  • very good explained! thank jou

  • Spot on explanation which delivers the message😊

  • My last post about communication with someone with PD failed to mention the worst symptom. I suppose that is because I did not think it had an effect on communication. But it does and that is because it is so distracting that communication with the PD person is probably going to be reduced to using a series of grunts instead of words.

    This symptom is that phenomenon known as “Gait Freezing”. This problem is far worse than a quick first glance would reveal. Most would think this is where you are unable to take a step as you are glued to the floor. The real problem though is that gait freezing may occur whilst you are in motion. This means that you are likely to have a fall and that could mean serious injury`.

    So, next time you are crossing a road, imagine how that would be if at any step you may suddenly stop. It means that someone coming close to you may throw you off balance. It means that you could be blown over by a sudden gentle gust of wind. It means that progress along the pavement, around the shop or across your lounge at home are very daunting

    When I am like this, even when at home, I have to hold on to things while I plan my next move, plan how I shall get through the gap between the sofa and the coffee table. I have to remember to point my foot in the general direction of travel and plan where to put down my foot as the step completes. And I have to rock back and forward until I have built up a bit of momentum before taking that step.

    What this means is that getting about can be terrifying and so exhausting that communication is impossible. The PD person is going to use every bit of concentration into not falling.`

  • Pete-1

    Have recently came across a solution to Gait Freezing that I recommend you consider. Our problem with Freezing is a matter of control of walking. Get a copy of the DVD MOVE IT! An Exercise and Movement Guide for Parkinson's Disease by Kevin Lockette PT. It can be purchased at "www. parkinsonsmoveit.com" or Google "Ohana Pacific Rehab Services". Their phone number is (808) 262-1118.

    Kevin points out that for PWP walking for us, is similar to the situation of a pilot flying an airliner.....both have automatic pilots.....for us the automatic walking control from the Straitum located deep in our Brains. What needs to be recognized, is that pilots flying airliners, are trained to fly without the automatic pilots, fly using hand controls ("hand fly"). Should the automatic controls in an airliner fail, the pilots turn them off, and takeover control of flying by ("hand flying"). The point Kevin makes is that pilots are trained up front to "hand fly" to safely deal with the malfunction of the automatic controls. Recently, there have been several airliner crashes, it which the competence of the pilots to actually "hand fly" the aircraft has been questioned, because they get little actual time practicing flying without using the automatic controls.

    A person gets up and walks about with out thinking about it. The control is automatic. With PD, eventually most Patients disease progresses to the point where the production of dopamine declines to where the Striatum malfunctions, automatic walking fails, freezing occurs, the person often falls (crashes) resulting in serious injury. Kevin points out that there is something missing from this picture for the PWP! As a major safety issue, PWP need to be trained to walk without using the Striatum (the automatic walking control). This requires "Conscious Walking" which is the equivalent to "Hand Fly" for the Pilot.

    When I saw that on the DVD, I thought wow, I can learn to safely deal with Freezing. At this point in my PD, I have not experienced this out of control walking. I have got together with my PT, and she has taught me IGNORE AUTOMATIC WALKING, to instead substitute Conscious Posture and Purposeful Movement as instructed by Kevin on the DVD. "Conscious Walking" requires a lot of focus on what is going on, preplanning, etc. And systematic execution of the preplan. Like a pilot getting a check ride of hand flying once in a while. I occasionally practice "Conscious Walking" and periodically get a "checked out" on it by my PT.

    Pete-1, this has been around for years. No one would be allowed to pilot an airliner without being able to "hand fly". An obvious safety issue. Yet as Patients with PD.......WE ARE NOT INFORMED THAT SIMILAR SAFETY TRAINING IS AVAILABLE......to deal with failure of our automatic walking.

    Let alone be supported in getting this training, Any one with PD who connects with a PT, should not be turned loose until they are trained in safe alternatives to dysfunctions of our automatic walking control in our Striatum.

    Obviously, our personal safety, when automatic walking control fails is not important, in the bigger picture of the PD world. I find this outrageous!

    Another thought, look up the "Agility Ladder" (see DVD, Delay the Disease, by David Zid). Can be a big help with freezing.

    Be safe!

    BillDavid

  • Hi BillDavid, Not had time to devote to you post yet.

  • HI Pete i like how you explain the PD issues, which i have some off you describe and others that i don't have it is possible that i will have the 40 that you mention ones that i progresses my PD?

  • Oh so true!!

    One o my colleagues listed 235 different symptoms of PD.

    Your list is a description of myself plus a couple more.

    However we shouldn't complain to much as I haver lived with it for 16year and most of contemporaries with PD are the same or worse shape than I am!!

    We are celebrating World Parkinson's Day with a table at an Australian football Match which will expose us and PD to a group of 150 senior Business men and women.We just hope that they are in a generous mood.

    The things you do for awareness!!

    Well lets hope for the coming of the breakthrough in research

    John Silk

  • I must have been over enthusiastic yesterday! The number of PD symptons should read 135 not 235.

    My apologies

    John S

  • Hi johnasilk, Only another 95 to make my collectors album full then.

  • Well said!

  • Thanks Pete. My worst symptom is not being able to swallow my food properly. It's embarrassing to eat out. And i always have to make sure i have something to drink or I'll choke.

  • Try bending your neck down towards your chest when you chew and swallow

  • Polyanna007

    Dear MKTBOB55

    Will try this Today!

    I love this thread as it really gives good tips,insight, anf the ability to count your blessings. After reading others problems. I know I will probably incur some of same symptoms , but with these bits of History of others it Really give mr Hope and how to try what others have been helped with. God bless each of you for input.

    Have a great life and keep up the tips that have helped you.

    Polyanna 007

  • Very disagreeable symptom by the sounds of it. Does this occur only when swallowing a food parcel Or can it also occur when clearing you throat?

    is this problem enough to totally spoil a meal? As an overweight person one could look upon this, that is losing some weight as some minor compensation fopr the enjoyment of eating is taken away from you.

  • Pete, I actually had lost a total of 30 pounds. I'm not sure why because i ate all along with the breast cancer, chemo, and Parkinson' s. I was normal weight, always on the thin side, so now I'm underweight. I really believe the swallowing problem is caused by the sinemet because I don't have it early in the morning or late at night. I've learned how to cope with it, but it's very annoying. Thanks for your concern.

  • You nailed it!

  • Pollyanna 007

    A double Amen to Rob dean!

  • Hello Pete-1;

    Your article is excellent!!

    May I use it?

    Have you considered using it on fb?

    Hugs and love to you for a good day.

    Eva

    :)

  • Hi 12stargate:-

    Thank you for your appreciation of my post. Regarding using it on FB I have already cut and pasted the whole text and pasted it into the "Update Status" field that FB presents to you when first log in. I don't suppose that is the best way to use FB for such a post, I don't use fb a great deal so I just guess (what to use on FB, mostly.

    Anyway if you are able to use my post for some useful use then that is just fine, please go ahead.

  • Good deal Pete!! Did you post it under you fb page or HealthUnlocked?

  • it was posted into the group "Parkinsons Disease Awareness Group". Was that a good guess?

  • Hi Pete;

    I went to that site and 'liked it.'

    I did not see your picture nor your post.

    Where do I find it there?

    Do you have you own private fb account

    I do. Look under Eva Gabrielle.

    I am considering posting my symptoms there, but I am afraid I

    will lose all my friends if I do! :(

    What do you think?

  • Hi 12stargate, I don't know, I don't really speak FB very well.

  • Helo 12stargate.

    I've just had another look. The main post was at the bottom of the list / page. Having looked at it it is now at the top.

    Also my second relevant post about gait freezing was not on FB but it is now. Have you been able to locate either one or other or both?

  • I hold Parkinson's awareness seminars in our subdivision twice a year. I live in a 55 plus community of over 1000 residents. Do you have a guess of how many people show up to my free seminar ( It is in our newsletter and private e-mails are sent as well)? 10.

    So many people aren't interested in attending. I have snacks and water. I

    have a question and answer time and try to get them involved. I have pamphlets and even give out the tulip pins to those with Parkinson's that attend.

    I get feed back from those that attend of nothing but compliments.

    I have ask some people as to why they are not interested. They said it doesn't effect them. It's sad.

  • Still, Margie,

    Still,Your seminar may be invaluable for up to 10 of them. So to just 1 person if you carry on as if you had a packed hall then that is appropriate. Or to put it the otherway around If you had 1 attendee then it is not their fault that they are the only one and they should feel entitled to receive the seminar as though it is a well attended event.

  • Margie, if I lived in your community, I would definitely attend!

    Leilani

  • Marie, some of the issues of PD do have crossover with other conditions that are not Parkinson's, especially with older people. It sounds like your seminars are useful, so perhaps extending the remit outside of PD would bring you more people. You could still include the Parkinson related info. Most older people fear falling for instance as they know recovery times get longer and exercise, diet and other issues can also be relevant. It's great you are doing this anyway, and there are blessings in small responses as well as well attended events. ☺️

  • Yes, I don't give up. I include diet, falling, safety in the home and etc. This is a very active community . I am hoping to rally more individuals. Most people know me through my activities here. When it comes to health issues, they seem to shy away.

    I continue my calling of making Parkinson's Awareness my goal. I believe in being upbeat on trying to slow down Parkinson's through exercise, meditation, and fighting depression. Thank you for your reply. I truly am grateful.

  • that certainly puts it all in a nut shell. pete, thank you very much for tying up the loose ends. and is a very excellent description of what it's all about.

    thanks so much pete. . sincerely, judam9

  • Thank you for your encouraging feedback.

  • Well said Pete. Here's an excellent link to a talk on exactly what you're talking about. davisphinneyfoundation.org/...

  • Thank you - bit tired just now so I will tackle that link later.

  • Everyone should read this!

  • thanks - a great read

  • My brother is just like you described, it really sheds light on why he is this way. I always feel guilty not calling him more often or visiting. I have it now but not near as bad. My biggest problem is shortness of breath. Does anyone know what to do for this?

  • Hi Pete. I should have got you to write my book for me. This is so well-written and so true that I wish I had been able to say what you have said.

    Well done! You are a brave and sensible man.

    I hope you don't, in fact, withdraw into a shell and remove yourself from the world around you.

    I really wish I were able to help you.

    Kind regards

    John

  • Hi Pete. May I have your permission to send this post to my list of contacts please?

    Kind regards

    John

  • John,

    Thank you very much for your kind words regarding my post. Please feel free to use it as you will.

    Pete

  • Really well said, Pete. The cognitive part so fits me. I can't even follow and remember emails long enough to respond to them, which really troubles me. It takes me hours to respond to them. I feel so stupid now. Where did the old me go? Gone forever.

  • Pete, very nice explaining reg'g to PWP i still have some sintums of PD however I'm fitting against this condition and waiting for a cure

    MB Regards

    Serg

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