Yesterday, I listened to a very informative lecture called Taking Care of Parkinson’s Disease Do’s and Don’ts, which helped me further understand many things about my father’s PD.
It was given by Dr. Shilpa Chitnis, a movement disorder specialist/neurologist in coordination with The Parkinson’s Voice Project in Richardson, Texas.
For those people who may have a hard time understanding Dr. Chitnis’ accent, or simply need the medical jargon broken down into laymen’s terms, I took notes and want to try to present them to anyone needing to know this information.
At the end of my post, I will insert the link for the actual lecture for those interested, I also shared it on Facebook.
One of the most important take aways I got from this lecture is that Dad needs to see a movement specialist, not just a neurologist; reason being, not all neurologists get the extra training for Parkinson’s Disease.
There was many more important tidbits you may not know including some common myths and misconceptions. Like you can be diagnosed with Parkinson’s even if you don’t have a tremor.
Levodopa is considered the “gold standard” medication to treat Parkinson’s but there are others that might work better for you depending on a number of factors. Response to Levodopa is one of the criteria for the clinical diagnosis of PD.
Dr. Chitnis recommends caffeine as a protective factor in the prevention of PD
A common question she gets is, “Why is there no cure yet with all the research and foundation work on PD?” her answer was because the initial trigger is still unknown.
Her theory is that poisons/toxins from one’s environment in which they were raised is likely a contributing factor. She was raised in Louisiana (as was my dad) where fishing was a common practice and pesticides were in the river.
Parkinson’s is also known as Lewy Body Disease because of the increased amount of abnormal deposits of a protein called alpha-synuclein or Lewy Bodies that build up in the brain.
What are some of the more common symptoms of PD?
- shuffling gate
- stooped posture
- swallowing difficulty
- loss of sense of smell
Studies have shown that exercise helps symptoms of this multi-symptom degenerative disease. The more you can move, the better you feel.
Which symptoms of PD affect the quality of life?
- Lack of Levodopa responsiveness
- Intractable (hard to control) tremor
- Wearing off of medication
- Non-motor symptoms (depression, anxiety, etc)
- Dyskinesia (abnormality or impairment of voluntary movement)
- Sleep problems (these last two symptoms usually appear before the initial diagnosis)
The reason it is important to see a neurologist with extra training in PD is because they have the knowledge and experience necessary to offer holistic and individualized care.
Not everyone who is diagnosed with PD sees a movement disorder specialist because there aren’t enough of them.
Lack of funding for fellowship training and limited exposure to the specialty during residency holds doctors back from becoming specialists.
When you do get in to see a movement disorder specialist:
- Bring an extra set of ears (this is especially handy for people like my dad who is hearing impaired)
- Write down all of your symptoms
- Bring all of your medications or a list of the medicine you take
- Write down all of your questions
- Be prepared for a longish day including testing (if this is the initial visit)
In my dad’s case, I would tell the specialist he has already had many tests and has seen several doctors who should be working as a team, but are not necessarily doing that. To me that is the biggest frustration, not getting all the doctors to come together and compare notes, etc.
If you do not feel comfortable with your MD, find another specialist in your area. (I just might do that!)
Here she inserted several helpful websites which I will include at the end of my notes.
MRI of the brain-Does not diagnose PD but rather compliments the diagnosis along with clinical tests.
DaTScan-a diagnostic test where a radiopharmaceutical agent is injected into a patients veins in a procedure referred to as SPECT imaging. The agent (loflupane 123 injection) distinguishes Parkinson’s from essential tremor.
Hospital Visits are Challenging for PD Patients
The reasons for this are:
- Not getting prescribed medicines on time
- Find out if you can bring all of your meds in their bottles
- There are multiple reasons for worsening of PD while in the hospital, infections should be sought out and treated
- Medication list should be updated and checked for contraindicated medications
Dr. Chitnis advice is to prevent the need for hospital visits by taking good care of yourself and taking all of your medications in the proper fashion. If you must go, have the nurse call your movement specialist with any questions.
In the Case of Necessary Surgery
- Try to connect your surgeon with your movement specialist
- The commonly used Propofol has been reported to cause dyskinesia’s in PD patients with and without movement disorders
- To avoid symptom exacerbation and other adverse effects, it is recommended that the usual drug regimen continue until just before the induction of anesthesia. This is especially critical in patients taking Levodopa because of the drug’s short half life.
- During procedures with extended anesthesia, Levodopa can be administered via a nasogastric tube.
- Choose anesthetic agent carefully because they have been known to cause morbidity in PD patients due to drug interactions.
- Avoid changing furniture, arrange rugs and cords and use night lights to make it easier to get around
- Don’t be resistant to help from family and caregivers
- Avoid multitasking while walking
No one diet is perfect for PD but following a Mediterranean diet is the best choice for optimal health-low salt
Get dermatology screenings because melanoma occurs frequently in PD patients
Living Well With Parkinson’s Disease (PD)
- So you’ve been diagnosed with PD
- Be an effective partner with your doctor
- Assemble your multi-disciplinary team
- Exercise, exercise, exercise and exercise!
- Healthy diet is ESSENTIAL and so is plenty of WATER!!! Most experts agree on this!!
- Go to the restroom when you CAN not when you HAVE to
- Don’t ignore the importance of good sleep
- Sign up for clinical trials
- Become a strong advocate for yourself and others with PD
- Join a support group
- Plan for the future
- Empower yourself with the best knowledge about PD
- Together we can fight Parkinson’s Disease!
- Coordinate your meds with your whole team so everyone is aware of your PD
Movement disorder society journal is recommended reading
Minimize naps and try to increase exercise for quality sleep
Go to this link for the actual lecture: https://youtu.be/RHa4aXTBQM
Other helpful websites:
I hope this helps someone out there who is either dealing with their own PD or a loved one-like I myself am. In my dad’s case, another symptom he deals with is loss of the ability to speak. This came on so gradually that none of us was aware it was related to PD.
The Parkinson’s Voice Project based in Richardson Texas is a professional care oriented team specializing in speech strategy and execution. Find them here: https://www.parkinsonvoiceproject.org
Let me know if you have any unanswered questions and I will try to find the answer, also, let me know if the link to the lecture does not work, I will fix it!