When life gives you lemons -you make lemon meringue pie…
For the last few weeks, i have been so excited about going to South Dakota to a Parkinson’s retreat in an abbey and all i could think was ..running up a hill singing “the hills are alive with the sound of music…” from one of my all time favorite musicals and beloved character because it not only happens to bear my name sake but is the first movie i recall seeing with my grandfather as a child in Mexico.
But as usual, when I get too excited about something as of late PD always rears its ugly head. so perhaps i should have written how do you solve a problem like PD?
That’s the million dollar question, although no solution as of yet we have to still find a way to make margaritas, pies, lemonade and whatever else you can think with the citric juices of lemons that sometimes having a chronic illness leaves us with.
Although, the theory of PD being immunological is not proven, I am a firm believer that at least in those of us with LLRK2 phenotype do seem to have a higher propensity for getting immune based illnesses like UC ( Ulcerative Colitis), and other immune mediated disease like thyroiditis and diabetes. ever since i been diagnosed with PD my immune system has been more chaotic than ever leaving me more and more prone to any and all viruses and bacteria circulating about which for the average healthy person would not even have a minimal reaction. But for me a common viral upper respiratory infection it leads to a whole cascade of problems and a new one this time around.
As all of you who live with PD and other chronic illnesses very well know it takes twice as long to recoup from any minor illness than normal people do. One way i have learned to cope with this is make sure start treatments ASAP, drink lots of fluids, rest and take extra vitamins, and levodopa to decrease length of illness which typically works fine. this was the strategy since i got sinusitis infection over 10 days ago knowing full well that i have a huge list of commitments and especially looking forward to traveling to see old friends, meet new ones and run up the hill although with the cough and bronchitis I developed i figured i would be more like a slow crawl. nevertheless, I was optimistic surely I would be all back to normal in more than 10 days time.
Well, little did I know that Maria an unsolvable problem by itself combined with my old pal Parkinson’s would come in to wreak as much havoc on me as it did in Puerto Rico. I am always amazed how many new symptoms of PD I am discovering as a patient that I never knew as a doctor specializing in this disease. I have treated many a MS, stroke, and spinal cord injury patient with dysautonomia- in other words dysregulation of the autonomic system. This is where a mild or seemingly innocuous event like a viral infection can trigger a whole host of responses from the body worst than infection itself. typical triggers are dehydration and bladder infection. Even in the multi system atrophy (MSA) patients who commonly have this problem, have I ever seen such an exaggerated response.
In Parkinson’s patients the dysautonomia is usually confined to abnormal functioning of bladder. But, never in my years of treating patients have I seen a full blown decompensation of organs which are regulated by autonomic system..means all the organs which secrete substances like the pancreas, heart, bladder, sweat glands, gut and so on. So i am experiencing horrific chest pain , breathing problems with increasing mucous production, severe palpitations, increased heart rate, nausea, increased tremors, and profuse sweating. Even though I am freezing to death feeling like I am inside an ice box. so in the middle of 80 degree weather, I am looking ridiculous, as per my daughter, because on top of all my layers of clothing I have a coat and walking around with a faux fur blanket trying to keep warm. Plus, I am trying to keep my sugar from dropping by forcing down food.
When patients with this problem have an infection they have an exaggerated response of dealing with infection as was my case- having higher fever, increased exaggerated sweating, chills and rigors. But, interestingly and another one for the books is that my cold symptoms were much more unilateral making me think i had a thalamic stroke (organ in brain involved in temperature regulation) or a lesion in my spinal cord. but, after consulting with 2 other movement disorder specialist we came to conclusion it was most likely the PD; although never seen as affecting one side more than another- hence unsolvable Maria problem.
But, as I am always an optimist, I feel that my misadventures have once again left me with a new lesson to impart to all my fellow Parkinson’s patients. should you ever have this problem – don’t panic. But, if having symptoms need to talk to doctor ASAP because it can potentially be life threatening. We treat symptomatically. This means lots of hydration, high salt diet, head elevation, sometimes requires iv fluid replacement and medications to increase blood pressure like midrodine, flurocortisone.
And of course treat underlying cause which triggered problem in my case upper respiratory infection.
On the positive side, I am hoping that all the sweating has shrunk my waist line a bit or at least partially counteract the effects of the steroids given to me – which thankfully helped to increase my blood pressure and my sugars to prevent me from crashing.
So instead of running a a hill– i will stay home and do conferencing via skype discussing how to solve a problem like me and pd.
To learn more about dysautonomia go to…