One of the most important Videos a PwP can watch

[FMundo]

When I was diagnosed with Parkinsons I asked my neurologist what I would "die of."

"Oh," she answered cheerfully, " . . . the usual things. Heart Attack, Cancer. " Later in our conversation she said, " Folks with Parkinsons do not get a pass on all the life threatening and terminal illnesses that other people get."

I didn't believe her. I did some research. In fact, 70% of PwP's die from inspiration pneumonia. Another 10-20% die as a result of complications due to falls. My uncle, with Parkinsons died from pneumonia, my grandfather from a head injury sustained in a fall on the stairs as he exited a restaurant in Cambridge.

So it appears to me that "You'll die from heart attack, cancer or other common maladies" is.... foo foo. At least that's what the statistics (as well as my personal experience) are telling me.

Inspiration pneumonia - pneumonia which results from food getting into the lungs as a result of swallowing the wrong way.

As I'm doing everything possible to extend my life I decided that in addition to rigorous exercise (60 minutes on an exercycle per day, 15 minutes of additional exercise), taking LDN to substantially increase my bodies endorphin production... I would look into this swallowing business, to see if there was a way to address the "swallowing problem" which led me to this video created by Roxann Diez-Gross of the Children's Institute of Pittsburg. (It provides understanding about the "how" of swallowing, and makes me think that some "cognitive understanding" ... and perhaps some exercises or brain training may be one of the most important things I can do to extend my longevity. I should probably add a Speech Pathologist on my support team, right up with my neurologist in importance.

Here is the video:

vimeo.com/62903648

[Hidden]

Thank you

[Hidden]

inspiration for me from this video:

1. take a breath before swallowing

2. upright posture during swallowing

[FMundo in reply to Hidden]

Wouldn't you think that Parkinson's being the second most popular neurological problem that Neurologists would make it a point to become knowledgeable in this area and to consider imparting this knowledge, in some way, to their patients and as important part of their provision of care ? .... ?.... ! ! !

[Hidden in reply to FMundo]

Wouldn't you think that my neurologist, at the time he is giving me the news that I have Parkinson's, would recommend further reading on my part? Instead he advised that I should not turn to the internet where I may be misled. He also advised me that DBS may cause more problems than good, pointing to MJF's experience.

[FMundo in reply to Hidden]

I have found that the internet is chock full of people who have the disease and who are sharing valuable information and insights. Suggestions that people avoid looking on the internet is not wise advice, unless you are dealing with a patient who takes a ostrich type posture toward the disease

Fortunately there is a tidal wave of 60 and 70 year olds who grew up with or have become computer savy when they were younger and more mentally agile and adventurous. We will wash away this posture which is not constructive for most people nowadays. If you need to do advance planning, have family considerations, dependents and people who are about you or worse are dependent on you, you owe it to them to understand the course of illness and know more than your neurologist can tell you. The internet is a key resource.

I look to fellow travelers, PwP's in Support Group, Exercise Group, direct observation and conversation with those people, books, discussion with a caregiver who went the whole trip with a partner, and for the future specialists who will address specific problems as they arise.

Frank

[Hidden in reply to FMundo]

Good for you Frank! keep going

[racerCP in reply to FMundo]

Bless you for this video. I was wondering why I sometimes dribble in my sleep and food leaves an excess of liquid in my mouth. I wil go to speech/swallowing therapy soon. Thank you. I get all my useful information from this website.

[joesoap583]

The one thing we can be very sure of is that we will all die - of something. So Parkinson's leans towards certain issues, but whatever you suffer from there will invariably be an increased risk of something.

I live my life enjoying the present day, I don't spend time worrying about what the future might bring. I've got Parkinson's - big deal.

[Hidden in reply to joesoap583]

Oh yea Stage 1 what a wonderful time of life, it was

And your PD may not progress much more past it. I hope you are correct and that it does not.

Denial is ok for a while yet but eventually it will start to interfear with planning while there is still time to act . Just in case you end up like the rest of us , watch the video.

Be happy 8D

[cjsg in reply to joesoap583]

Always hope and pray for the best, and plan for the worst. I do this in every aspect of my life.

[BillDavid]

FMundo, thanks for the Post. Agree that it is important for each PwP to watch.

The video is one of a series from the Davis Phinney Foundation, google their website, this and several other videos are available.

When I was first diagnosed 10 years ago, my question was would this be life limiting.

Was told it would not be. I will soon be 74 years old, statistically I probably will make it. Another case of not providing information to those with PD. Pretty clear that falling backwards has future, never thought about aspiration pneumonia as a concern.

When I asked about life limiting, think it would of been obvious to describe the life taking issues that would come in play. Some one should have a comparison of life taking events for PwP and others without the disease. Wonder what else would come up?

Posture always comes up as a major issue.

BillDavid

[Tiger101 in reply to BillDavid]

Hi, when you say "Pretty clear that falling backwards has future" what do you mean. I recently see my husband newly diagnosed with PD kind of lean back while standing.

[JohnPepper]

Thank you! This has been very informative.

I often tell patients that they have to concentrate properly, when they are eating, otherwise they may tend to talk, when they are busy swallowing. I have done this myself and it is very dangerous.

The video is very concise and gives us a better understanding of what we should and should not do, when eating and swallowing.

I will pass this on to all my contacts.

John

[metacognito]

VERY useful info - thanks for posting. I recall hearing that 'choking' poses a lingering threat to PwP but it seems to be well-understated in terms of its potential to become one of fatal consequence. Certainly worth keeping in mind.

[michaela13]

Thanks for the video.

[serg]

Good video I need to work in my swollowing

[margie]

Thank you for this information and the video. Please remember:

Parkinson’s disease is the 14th leading cause of death in the United States, according to the Centers for Disease Control and Prevention’s annual analysis of mortality data.

[JWebb994]

I have seen this before and was so amazed to learn so much about swallowing, which we just take for granted.

[FMundo in reply to JWebb994]

I believe that the next Michael J Fox Webinar is about swallowing... certainly worthy of a watch . . . I find it amazing that since the majority of PwPs expire as a result of poor swallowing (from inspiration of food into the lungs causing pneumonia) ... that there isn't more focused attention on the topic.

Certainly those people who have assumed the responsibility for caring for and supporting us and MD's .... should give the topic more attention. Then again we particularly should be concerned with the process.

[JWebb994]

I often drink out of cans and I have noticed that one thing I do .. is try to get that last drop out. When I do that I also inhale, sort of breath it in! I think I have always done that but now that I have Parkinson's, I end up choking on it. Lots of coughing!

[Tiger101 in reply to JWebb994]

My husband uses a straw except when drinking water. I wonder if this helps. However, I do see him complain about coughing as soon or after he starts eating.

[Hidden]

When having my teeth cleaned, I spoke to the dental tech about the risk with too much saliva production with Parkinson's. When the dentist came in she told her. The dentist was interested and said she would put that information for review.

[oceanflower]

Thanks for this!