People often post to this forum wanting advice on how best to treat their Parkinson's. Ideally, this would not happen, and they would instead go directly to their doctors. But, what if they can't afford to see a doctor, or the waiting list is very long, or the consultation period is too short, or the relationship with the doctor has broken down, or the doctor hasn't kept pace with recent developments ... ? I assume that if someone asks for advice, it is because they feel they are not getting the best treatment from their doctors. And, given this it is reasonable for them to ask for advice, and for us to give it.
Can I urge people who seek advice to give as much information as possible in their initial post. At the very least:
- their reason for seeking advice;
- their diagnosis;
- their drug regimen (the time, the drug, the dose);
- their diet, including times of eating;
- their exercise;
- their age, gender, years since diagnosis;
- things they have tried in the past;
- other medical conditions;
- a general overview of their symptoms.
Giving this information will improve the quality of the advice that is given.
Let me repeat, if you can, it would probably be better if you saw a doctor.
I'd be grateful, if other people would comment on the list and suggest other information that should form part of an initial post asking for advice.
John
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johntPM
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Good post! I have meant to do this kind of posting and never got around to it.
Every newbie should read this. So many times people ask for advice without saying what they are taking or describing symptoms. All too often members here trying to be helpful respond without getting this information first.
John,
I have asked people to do this in the past when contacting Dr. C, sometimes they do and sometimes they don't. You can't make people do what they don't want to do, even if it is for their own benefit. Another consideration is that some people feel the information is too personal to post on an open forum and in this day and age, I understand the hesitancy to post such personal details. Sometimes it is a judgement call on the part of the person inquiring, does the possibility of finding useful health information outweigh the inconvenience of posting their personal health status?
Along this line of thinking, I contacted Dr. C last week to ask him if it would be easier for him to work with email patients if they fill out a basic form that will answer the questions he most commonly needs to know and he said it definitely would and it would cut down on his time having to ask patients information they didn't give him in their initial inquiry to him. Based on his reply, I made a list of basic questions and fill in the blanks. I sent this to him and asked him to review it to see if it would cover what he needs to know and if not to make any changes he would like to and send it back so I can post it to the "thiamine primer page" and future email patients will be able to use it for their initial consult with Dr. C and this in turn should be better for the patient and Dr. C. He told me that he is going to ask Marco to make the changes that he wants and will send it back when it is ready. When he does, I will add it to the forum. Here is a copy of the questions I sent him and what he is in the process of revising.
I imagine this page or similar could be used by anyone who is looking for more detailed replies to their questions on the forum and of course, not every item needs to be answered, only the ones that would apply to the question they are asking, but when sending the information to Dr. C, just like any doctor, the patient information stays between you and the doctor and in the case of HDT is likely to save time on both sides!
ENGLISH :
PATIENT INFORMATION
DATE :
1. NAME :
2. AGE :
3. WEIGHT :
4. HEIGHT :
4. APPROXIMATE DATE OF DIAGNOSIS WITH PD? :
5. APPROXIMATE DATE OF FIRST SYMPTOMS OF PD? :
6. CURRENT LIST OF ALL PD SYMPTOMS THAT YOU ARE AWARE OF? :
7. CURRENT LIST OF ALL MEDICATIONS AND DOSAGE YOU ARE TAKING? :
8. CURRENT LIST OF ALL VITAMINS, SUPPLEMENTS AND ALTERNATIVE TREATMENTS YOU ARE TAKING AND DOSAGES? :
9. CURRENT LIST OF ALL OF YOUR HEALTH ISSUES OR DISEASES?
10. WHAT IS THE CURRENT LENGTH OF YOUR "ON TIMES" AND "OFF TIMES"?
11. CURRENT LIST OF ALL SUBSTANCES THAT YOU ARE ALLERGIC TO?
12. ARE YOUR PD SYMPTOMS WELL CONTROLLED AT THIS TIME?
13. DO YOU CURRENTLY USE A CANE, WALKER OR WHEEL CHAIR ?
14. PLEASE WRITE ANY OTHER INFORMATION THAT YOU FEEL IS RELEVANT TO YOUR CURRENT HEALTH SITUATION HERE :
15. PLACE A PLUS SIGN (+) IN FRONT OF EACH NUMBER BELOW THAT APPLIES TO YOU.
1. tremor
2. constipation or other digestion issues
3. brain fog
4. insomnia or difficulty falling asleep or staying asleep
5. inability to smell or taste
6. instability when walking
7. dizziness or lightheadedness
8. pain in joints
9. pain in muscles
10. inability to write, use a keyboard or mouse
11. slow movement
12. can't walk
13. muscle cramps
14. dyskinesia
15. freezing
16. anxiety
17. dementia of any type
18. bradykinesia
19. dystonia
20. shuffling
21. depression
22. apathy
23. inability to get up from a seated position without assistance
24. visual problems
25. hallucinations
26. despair
27. dry eyes
28. inability to use either hand or arm effectively
29. inability to focus or concentrate for any length of time
30. foot or leg drag
31. stooped posture
32. problems with swallowing or drinking
33. bladder issues
35. unable to move around in bed without great effort
36. tremor that you feel internally
37. lost facial expression or inability to smile
38. always grabbing on to stationary objects in order to maintain balance
Note: Italian neurologist will help you via internet without charge.
I was diagnosed in 2012. In six years the Parkinson's symptoms became disabling. All this time I tried many of the standard Parkinson meds trying to find the right fit. I researched on Google for alternatives. Then (2017) I found B1 and Doc Costantini. He is a wonderful doctor and human being (charitable). He has office in Italy. If you want to travel to his office for an appointment, he has office exam fee. IF you cannot or do not want to travel to Italy, he will help you via internet without charge. He does not sell medicine or supplements or any product. He speaks only Italian but has associate doctor and staff with English language.
… he said that even if they couldn't come to his clinic, he could still try to treat them via email. He said he needed a copy of their medical records and short videos of them talking, pull test, walking, writing. Note: upload your videos to YouTube and then share with Doctor Antonio Costantini. He said the videos were not for him, but rather for the patient to watch every now and again so they could have a basis for comparison as time passed.
Help spread the good news. Copy and paste facebook group across the World Wide Web:
Good idea John and Art, but we still have the problem of people who come on next week won't know about this thread. I guess the only thing to do is refer them to it, although a lot will not get referred. I'll try contacting the HU administrator again for Art's idea of a read-only page. They never replied to my last efforts, tho. (Apparently, the young, millennial nerds who write code for this site don't feel the site can be improved by their listening to the people who use it.)
I use Neurotalk/Parkinson's for posts that I want to be easily searched for, etc. It's really nice to have a thread lasting 10+ years, being added to every couple of years as new information becomes available. its disadvantage though is that it currently only gets about 10% of the posts of this forum.
Hi John. That is very sensible but not easy to do. Such information is very personal and private and some f us would be too embarrassed to put it all out there. The post would be very lengthy as well.
One of your questions was what if they can't afford to see a doctor? My response to that is to ask the question, "Why do they need to see the doctor if they have already been diagnosed?" If they have not been diagnosed then they have no alternative.
If they know they have Pd and they are short on funds then the best thing that they and anybody else can do is start to exercise. That is the only known way to slow down or even reverse Pd and it COSTS NOTHING!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Slowing the Progression of PD (adapted from a book)
Parkinsons Registry
