My Parkinson’s Treatment Conundrum

My Parkinson’s Treatment Conundrum
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I was diagnosed with Parkinson’s disease in November 2015. Since then, I have explored both allopathic and naturopathic solutions.

From a naturopathic perspective, I immersed myself in Parkinson’s disease summer school, which dedicates a week to strategies to improve Parkinson’s outcomes. I also consult with a naturopathic doctor every few months. From a traditional medicine perspective, I consulted with 11 neurologists, seven of whom were movement disorder specialists.

To find the right treatment therapy for me, I have done the following:

  • Consulted with general neurologists, movement disorder specialists, and a naturopathic doctor
  • Educated myself with online courses and webinars
  • Conducted online research
  • Joined Facebook groups focused on Parkinson’s disease

I have finally concluded that no single treatment solution is for everyone. We all have unique and distinctive symptoms and different metabolism. I have traveled a rocky road over the past few years trying various medications and therapies for symptom relief.

My allopathy vs. naturopathy conundrum

As much as I am resistant to the idea of taking medications, I have learned to accept that I must take them to allow me to work out. My goal has always been to use exercise to ease my symptoms and slow disease progression.

The neurologists and the naturopathic doctor I consulted agree that exercise is one of the most important therapies for treating Parkinson’s.

Allopathic and naturopathic doctors sometimes have different opinions about using supplements and prescription drugs. My naturopathic doctor (ND) believes supplements can enhance the impact of prescription drugs. Also, she believes they might allow for the possibility of lower dosages of medications.

One of the movement disorder specialists (MDS) I visited did not approve of most of the supplements the ND recommended. He indicated there were no large-scale trials conducted that confirmed or denied how the supplements might interfere with the drugs or other body functions.

I respect the opinions of both the MDS and the ND and work closely with both of them to come up with a treatment plan we all can agree to.

The beauty is in the balance

I now realize that symptom relief is not achieved with an all or nothing scenario.

After much trial and error, I have come up with a combined naturopathic and allopathic approach that works for me. This solution allows me to accept and adjust to my “new normal” with no side effects and some symptom relief. This is the list that works for me and may not be appropriate for you. Always consult your doctors before making any changes to your health regimen.

My list includes:

  • Frequent exercise
  • Eating a plant-based diet
  • Massage
  • Physical and speech therapy
  • Carbidopa/levodopa
  • Neupro
  • Selegiline
  • Vitamins B12, C, and D3 (based on blood test deficiencies)
  • Fish oil
  • CoQ10
  • Glutathione
  • Infrared light therapy

My way of thinking may have hindered my progress to reach this point. After all the therapies I had done, I expected to feel like I did before I was diagnosed. Because I have a disease of the brain, that is unlikely to happen. Plus, as one ages (I am five years older now than I was when diagnosed), sometimes it is difficult to determine if a symptom (balance, slow movement, cognitive issues) is age-related or caused or accelerated by Parkinson’s disease.

Of course, this current regimen will need tweaking as time goes by. Dosages may have to be increased, not because the drugs lose their efficacy, but because Parkinson’s is a progressive disease.

My conclusion

As a person with Parkinson’s, the ball is in my court to find the right solution for me. Because we all have a different manifestation of the disease, everyone with Parkinson’s must find their unique treatment plan. It helps to arm ourselves with knowledge about our condition. We should not be afraid to challenge our treatment professionals. After all, we have the most experience in knowing how Parkinson’s affects our bodies.

“The conflict between preventive health and conventional medicine is not an either-or situation. For example, we will always need emergency rooms and people will always require health care services; yet it has become clear to me that the approach must be natural, it must be preventative, and must be individual.” – James L. D’Adamo

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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12 comments

  1. Vincent says:

    There was an news article on ABC Australia called

    “Tasmanian red light helmet treatment for Parkinson’s ”

    The red light dampens inflammation and gives the brain a chance to heal. Take a read, but you’re doing a lot of things right.

  2. Bill Berkowitz says:

    Hello, Jean —

    … I think this is more of a personal note than a comment for publication, but I did want to say that I have been greatly appreciating your posts over the past few years — not only for their substance, but for their level and supportive tone, as well as for the spirit behind them. It’s made a difference in my life, as I’m sure it has in the lives of many others. Thank you. Always looking forward to more. And wishing you the very best in times ahead.

    ~~ Bill

    • Jean Mellano says:

      hi bill
      thank you so much for your words of encouragement. i have always said to myself if i can impact just one person with my writing, I will have done my job. Writing positively helps bring me up when I am in a pit of despair. I wish you all the best

  3. Helen Botti says:

    Hello Jean, I know how I got Parkinson’s!!! When I was a fifty-year old lady going back to college for more education, having only a high school diploma, I got real sick with a Bad Flu, a severe cough, fever and never seeing a doctor, I almost dropped out at my courses. Yes, I did finish my two-year degree but it took me 2 and half years. Then, after I was diagnosed with H. Pylori a Bacterium that hides in the folds of your stomach for many years which travels to the brain through the Vegus Nerve pass the BBB and started killing off my Dopamine. So the situation is worse now, thirty years later, because I was diagnosed about five years ago with shacking in my right thumb. I have been seeing the Specialist in the field and getting all the medications, exercises and good diet. How can you help? Helen

    • Jean Mellano says:

      hi Helen, I am not a medical professional so I cant offer any help. I can say for myself, exercise is the best thing for easing my symptoms and potentially slowing progression; specifically Rock Steady Boxing. We are all affected differently by this disease in terms of our symptoms and how we react to different treatments/remedies. It is indeed a lonely journey trying to finding a good quality of life with Parkinson’s

  4. Shannan says:

    It is wonderful to hear that you took charge of your treatment plan and incorporated several things to try to manage this horrible disease. I’m 39 and was officially diagnosed in November 2014,symptoms that were recognizable started around January 2011. I had bilateral DBS surgery in October 2019 and everything was going well at first then all of a sudden I started developing other, new symptoms, and they were appearing and worsening rapidly. I now have a slur to my speech that comes and goes, I already had Dystonia in my right foot and ankle and now I have this weird toe drag, and my right hand wants to close on me with my fingers cramping. My balance has gotten weirdly off where all of a sudden I’ll lose my balance backwards. I’m not dizzy or anything and I just start falling backwards. My balance is more off in general due to the toe drag, stiffness, and foot Dystonia and I can’t carry anything with even a little bit of weight, not heavy,heavy, it will challenge my balance and I usually fall. We’ve tried different programming adjustments and at first it seemed when we went higher, that would bring out these newer symptoms and going lower or turning off they would go away but I still struggle at any setting managing my normal symptoms of whole body stiffness, especially in the knees down, right foot Dystonia and lower back Dystonia and medication is unpredictable when it will work and how well. The symptoms that have been managed since DBS are tremor in my right leg and hand and terrible Dyskinesia. My movement disorder neurologist and my surgeon are discussing the need to do another surgery on the left side only and either replace the current wire in the current target area but move the positioning slightly or moving to a completely different target area on the left side. It’s just frustrating that this disease affects so many so differently that every case is unique and special and a lot of trial and error to find out just what works for that person. I know I may never be exactly the way I was and functioned pre-parkinson’s but I just want to get through a day where it doesn’t take every ounce of energy to do simple tasks, to be able to work out to possibly help my symptoms, and to be able to play and have fun with my very active 4 yo daughter.

    • Jean Mellano says:

      Shannan, I am so sorry for your struggles. It seems as though you have been hit hard with a multitude of symptoms. For me, I don’t know what ‘normal’ feels like any more. Hang in there and stay strong. Pd is an ongoing battle that we will have to endure for the rest of our lives. Some days we will feel up to the task more than others

  5. T Sewlall says:

    I was diagnosed with PD in August 2018.I was 56 years old then. Currently I walk for about 1.5 hours a day and this helps me a lot. My cramping stopped, muscles are not so tight, Still able to do a lot of things. Physio helps me a lot. Having no family history of PD and being exposed to Spray painting fumes and Welding fumes gave reason for me to look deeper into my diagnosis. My online research highlighted the fact that there is a link between PD and exposure to chemicals and welding fumes.
    In South Africa there is no Auhority or a Research centre that has investigated this link. Do any of you know as to where I can contact a Specialist in the PD research dept anywhere in the world so that I can contact this person for advise. Thank you

    • Jean Mellano says:

      Unfortunately, I have no contact info for u. From what I understand, pd cause could be genetic, exposure to chemicals, trauma, gut issues. I believe Michael j fox website probably has the most current info. In my situation, I believe my pd was triggered by the emotional trauma of my late husbands death. Some of my neurologists agree. I have two friends who also have pd and they each experienced severe physical traumas. Bottom line, I don’t think anyone knows for sure what causes pd,probably one of the reasons we have no cure. I think exercise and diet are the best remedies for me as I fight this disease.

  6. Carole Stukan says:

    I have drug induced Parkinson’s Parkinsonism I guess is probably the right definition from taking antipsychotic meds as I was misdiagnosed with bi polar started having movement issues and myoclonus with Dystonia symptoms Second opinion said major depression not bipolar I believe the meds depleted the dopamine from my basal ganglia whatever was left the meds depleted the rest as I may have been predisposed my grandmother had it too now on low dosage of an antidepressant doesn’t seem to help my overall symptoms I have sleep myoclonus real bad jerk all night always tired my gait I feel like I’m walking in quicksand I have oromandibular Dystonia teeth falling out jaw opening and not closing List
    goes on then came covid 19 had an appointment with a movement disorder specialist but has been postponed 3 times due to COVID outbreak my current neurologist won’t help me unless I see a movement specialist first so here I am a year later with no one to help me and no medication yet symptoms are getting worse sleep myoclonus is really bad oromandibular Dystonia in my mouth and jaw areas hard to eat and swallow lots of anxiety and more depression teeth falling out list goes on I wonder if I will ever get to see a movement specialist who can help me before I end up in a wheelchair or worse I feel your pain and send prayers to all of us unseen sufferers thanks for listening

    • Jean Mellano says:

      Carole, I am so sorry for your struggles. You certainly have more than your fair share of symptoms to deal with. Is it possible for you to get a telemedecine appointment with an MDS? Perhaps that would get you to seeing an MDS quicker. Stat strong,

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