Parkinson's Movement
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Living with an Uncertain Future

We know Parkinson's is incurable and progressive. What we don't know is how it will progress in our lives. How fast will my symptoms progress? Will I be like other advanced cases I've seen? What should I expect as a caregiver?

There are no clear answer, but there are lessons to make the most of our path to the future.

I have faced health obstacles could have stopped me if lessons hadn't been learned. I became legally blind the day my son was born. Later I was placed o dialysis when my kidneys failed. Parkinson has now impacted my lungs to the failing point.

But life hasn't ended and neither have m dreams to make a difference.

Please join me for the complete story on Facebook "Parkinson Lessons from an Uncertain Future"

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What's the URL? I tried to find it on Facebook, but had no luck...

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facebook.com/groups/2917262...

sorry the first option didn't work but I would appreciate comments

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I'm very experienced at speaker, but not at social media. The group was suppose to be public. I hope it is, but I welcome you to the group and will get to work on the discussions section

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Just watched the four points talk, great stuff, especially the last ten minutes or so. You look pretty good to me - very much a living man! Bravo!

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Thank you. I am going forward. My lung function decreases by 3% per month. I am at 45% capacity. I don't know how much I need to function.

I find myself in an uncomfortable position. I've taken the time, effort and expense the make the talk. However, no one hears a tree fall if it's in middle of no where.

So I find myself trying to start is fire not to warm myself, but that the flame can warm the lives of others.

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Bart, you are the real mensch! With all the adversity you have faced and overcome, you are a credible role model. Splendid talk--it kept me interested the whole time. You have a gift for public speaking. The life story you have to tell, your demonstrated resiliency, and your fourth point, that we always have the ability to CHOOSE a positive attitude, no matter how grim our circumstances, will be an inspiration to many. Bravo!!

P.S. Your other three points--DISCIPLINE (do what you can do today, don't be a slouch), SERVICE (other people need you), and DEPENDENCY (you need other people)--are also well worth imbibing.

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Thank you for the confirmation. I had questioned if the lessons were impactful enough

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YouTube link

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YouTube search Bart Tuma

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viewing now...I made it to 24 minutes/Parkinsons, so, I will stay for the remainder.

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Does that mean it was too long. Didnt know where to cut

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of recent I read of lung volume issues due to Parkinson's. I have low capacity lung as of early this year. I had Pulmonary Volume Test, I think I will ask for another test and discover if I am declining in function.

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Doctors tell me that I have paralyzed phrenic nerve effecting one lung, on my right side.

I had PFT-Pulmonary Function Test over one year ago. Last week I had another PFT and this test indicates my lung condition has declined.

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I hope the progress is slow, does it impact the other lung? What caused the nerve damage? Is it related to parkinsonism

Very interesting

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Only one lung effected. Does not appear to do harm to other lung. Unknown cause other than by Parkinson's. There is a medical code for Parkinson's and lung problem.

Respiratory dysfunction in Parkinson's disease.

Abstract

The parkinsonian syndromes include idiopathic Parkinson's disease, parkinsonian syndromes secondary to several known causative agents, and parkinsonian syndromes associated with more widespread CNS lesions and extensive neurologic deficits. They constitute movement disorders with a similar constellation of symptoms: rigidity, tremor, bradykinesia, gait impairment, and postural instability. All of the parkinsonian syndromes are associated with excess morbidity and mortality from respiratory causes, and all can produce the pattern of pulmonary function impairment consistent with neuromuscular disease. In addition, the parkinsonian syndromes can produce upper airway obstruction and abnormalities of ventilatory control, both of which can be life-threatening in those with MSA. The medications used to treat these disorders can also produce respiratory disease. A syndrome of L-dopa-induced respiratory dysfunction has been described, which may be a heterogeneic disorder of choreiform movements of the respiratory muscles, rigidity-akinesis of the respiratory muscles, or abnormal central control of ventilation, all related to the drug. In addition, the ergot-derived dopamine agonists can cause pleural and pulmonary fibrosis.

ncbi.nlm.nih.gov/pubmed/786...

Doctors tell me that I have paralyzed phrenic nerve effecting on lung, on my rigt side.

I had PFT-Pulmonary Function Test over one year ago. Last week I had another PFT and this test indicates my lung condition has declined.

What does the phrenic nerve do?

The phrenic nerve is a nerve that originates in the neck (C3-C5) and passes down between the lung and heart to reach the diaphragm. It is important for breathing, as it passes motor information to the diaphragm and receives sensory information from it.

Unilateral and bilateral diaphragm paralysis may be caused by motor neuron disease, myopathy, inflammatory myositis, phrenic nerve injury, viral infection, cervical spondylosis, malignancy (cancer), or may be idiopathic.

UNILATERAL PARALYSIS

Most patients with unilateral diaphragmatic paralysis are asymptomatic and require no treatment (image 1). The prognosis is good in this setting, and the paralysis is of little clinical relevance in the absence of new or underlying pulmonary disease

uptodate.com/contents/treat...

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Thank you for the info. My situation is this The swallowing problem with the aspiration pneumonia is well known with Parkinsonism The neuromuscular restrictive lung disease is not usually associated. My university pulmonologist states that is very little written about it, and my neurologist Parkinson specialist. Thinks it is unrelated. The only importance is if the cause would be something that can be treated. So far all testing doesn't show a link to another disease. So no treatment. I have new pulmonology functiontesting on the 19th. It goes down now about 2% a month which would take me to 46% if the decline is consistent. I don't know at what percentage it becomes a crisis ie oxygen supplements don't help that much. I use a special sleeping device beyond a CPAP since my CO2 builds up over 60% at night.

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