My struggles with Parkinson’s are getting worse despite my best efforts

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My body is not feeling well. What am I going to do with it?

What happened to me?

My quality of life was deteriorating due to my neurological problems. In addition to poor fine motor skills on the left side and slow movement, I was constantly tired. It was a fatigue that no amount of quality sleep could ever satisfy. Also, I had internal tremors (not visible to the naked eye, but still felt so weak and shaking). I thought for sure that there had to be some sort of “natural” solution to help cure what was hurting me – one that didn’t involve prescription drugs.

My initial approach was to go to physiotherapy and occupational therapy and continue my exercise regimen (weight, yoga, cycling, walking). This plan did not seem to slow the progression of the disease or relieve my symptoms. My depression and lack of motivation (other symptoms of Parkinson’s disease) also bothered me.

I can’t fight this alone, so drugs are an option

In March 2016, I finally agreed to try Azilect (rasagiline), a prescription medication. Two weeks later my symptoms had not improved and I felt worse (dizziness and nausea). So, stop this medication and move on to the next one, ropinirole. This time it only took a few hours for me to become extremely ill with vomiting and a severe headache. I immediately stopped this medicine.

My neurologist and primary care doctor thought I should focus on treating my symptoms of depression with prescription medication. In August 2016, I tried Viibyrd (vilazodone HCI), an antidepressant. Within weeks, I was suffering from intense and bloody nightmares every night without any improvement in my symptoms. At this point, I decided my PD symptoms might not be such a bad thing and refused to try other medications.

I can’t fight this alone, but drugs are not an option

In October 2016, I attended a weeklong plant-based diet workshop. My diet was in need of a serious overhaul. It was time to see if changing my eating habits would make a difference in the quality of my life. I was already a vegetarian, but still loved my dairy products. I also liked sugar, pasta and bread. These foods are known to potentially cause inflammatory reactions in the body. Also, I have read that the neurodegeneration seen in PD is accompanied by inflammatory processes. If I added these two theories together, I believed that a change to a vegan diet with no gluten, no added sugar, and no added sugar might help my symptoms of PD.

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A holistic doctor at the herbal diet workshop I attended suggested that I review the Hinz protocol for treating my PD. Dr Marty Hinz developed an amino acid therapy that used the natural dopamine powder of the Mucuna pruriens (velvet bean) in conjunction with other amino acids. I found a neurologist in New York who endorsed this approach. After returning home from the workshop, I maintained a strict diet and struggled with the Hinz protocol. I say “struggle” because I was very nauseous. The doctor had to repeatedly adjust the strengths of the amino acid capsules and Mucuna pruriens powder in an attempt to eliminate nausea and obtain symptom relief. In addition, the cost of this protocol was in the hundreds of dollars per month and was not covered by insurance. I could bear the cost if my stomach was relieved and my PD symptoms improved. However, it was not to be. After six months, I gave up the Hinz protocol.

Losses and adjustments

I was starting to get very good at making adjustments when a symptom of PD was hurting me in some way. For example, I find it hard to put my coat on with my left sleeve first, so now I put my coat on with my right sleeve first. Or, since I don’t know where to put my pierced earrings, I just make sure I have a mirror handy to see what I’m doing. While waiting in a cashier’s queue to check out, I make sure I have my money ready so I don’t dig into my purse and delay the queue. Wearing satin pajamas makes it easier to move around in bed at night. Paying attention to all of my movements is essential so that I don’t stumble, step through things, or let things fall into my hands.

If my PD is no longer progressing, I feel I can cope with the losses it has inflicted on me so far. However, sometimes when I wake up in the morning I think to myself, “What simple task will escape me today?” PD is a disease of loss, the loss of some of life’s most mundane things that many of us (myself included) take for granted. These include:

  • Hold a purse or newspaper firmly under your arm
  • Folding laundry
  • Tie up shoes
  • Button up a shirt
  • Put on a seat belt
  • Zipper a jacket
  • Open a package
  • Cut a salad

These are crazy tasks that everyone does almost every day. Many of us with PD can no longer perform these daily rituals without assistance. If PD hasn’t totally crippled us, some of us may still complete the task unaided, but it requires intense focus and concentration on our part. It’s almost like we’re a kid again.

Still in trouble

We are now in mid-2017. I continue to struggle with the worsening of my PD symptoms and still am not taking any prescription medication.

All of the snake oil solutions online make it even harder to get relief from my symptoms. On more than one of my PD related blog posts, some unscrupulous people have responded with comments about the great herbal or vitamin supplement that “cured” their PD. There are so many crooks there, people and businesses preying on those who desperately need help. I think I can speak for many of us with PD when I say that we want to believe that there is one thing that can help our symptoms or cure our disease, however, it is so difficult to separate it. who works and what doesn’t.

Although I continue to exercise, meditate, and maintain my vegan diet, I fully realize that I need more help.

Stop the roller coaster, I want to go down!

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To note: The news of Parkinson’s disease today is strictly a disease news and information site. It does not provide medical advice, diagnosis or processing. This content is not intended to be a substitute for professional medical advice, diagnosis, or processing. Always seek the advice of your doctor or other qualified healthcare professional with any questions you may have regarding a health problem. Never disregard the advice of a medical professional and do not delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of The news of Parkinson’s disease today or its parent company, BioNews Services, and aim to spark discussion on issues relating to Parkinson’s disease.

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