In one of the greatest comebacks in sports history, Oracle Team USA won eight straight races to win the 34th America’s Cup 9 races to 8 after being down 8-1 to Emirates Team New Zealand. Watching them race over the last three weeks you realize what team work it takes to sail a 72 foot catamaran with a 150 foot ‘wing’ sail at speeds over 40 miles an hour on San Francisco Bay. In fact, at the end of the winning race today, the Team USA helmsman Jimmy Spithill tweeted a comment from his interview after the win “On your own you’re nothing but when you’ve got a team like this around you, they make you great”.
I feel the same way about dealing with Parkinson’s, you need a team to make you great. The team includes your Movement Disorder Specialist, your regular doctor and should probably include a physical therapist, an occupational therapist, a speech therapist and maybe a nutrition specialist. As you can see, it takes a village to deal with the many symptoms and issues with Parkinson’s disease, just like raising a child.
But as important as your medical team is, the support of my wife, my children and their spouses, my grandchildren, my sisters and a multitude of relatives and friends is just as needed. I am lucky to have their support, words of encouragement and positive thoughts. As Jimmy Spithill said, I would be nothing without the support of my ‘TEAM’. Thank you all for all you do to help me weather this journey.
I’ve had about a week on the new dose of medication three times a day and continue to see good improvement in walking and balance.
This weekend our friends Tom and Marilyn visited from Colorado and we had a great time on the lake cruising, swimming, and catching this shot of the harvest moon rise on the water. A grand time was had by all.
One last reminder, don’t forget the Michael J Fox show premieres this Thursday 9/26/2013.
“Time and again people with Parkinson’s have to fight against the old stereotype that the condition is just a tremor.”
“This basic misunderstanding has sentenced people with Parkinson’s to a life of hurtful comments, being refused service in shops and even being shouted at in the street, all because people have mistaken their speech or movement problems – a common symptom of the condition – for drunkenness.”
Steve Ford, chief executive at Parkinson’s UK
I heard these quotes during an interview on BBC Radio the other night and then looked it up on their website. The story is accompanied by a video interview which can be read and seen here. They recount a study conducted in the UK showing that PWP suffer discrimination because of symptoms other than tremors including the slow gait and balance issues that sometimes make me look like I’ve had one too many before 10 am. I’ve noticed people looking at me like I might be drunk as we walk into the grocery store and it appears from this study that even if I wore a shirt that said ‘I have Parkinson’s’ they still might think I was inebriated.
Thanks to the National Parkinson’s Foundation, I carry a card that helps to explain the symptoms and covers various drug interactions in case I need emergency care.
The non-tremor symptoms such as slurred speech, facial mask (unable to show expressions), freezing in place, and tipsy gait among others are the little known part of this disease for the general public. I did not realize how complex this disease can be until I starting researching after my diagnosis but I certainly have a greater understanding now. I hope that readers of this blog do too.
I had a follow up visit with the neurologist last week and he decided to double the medication dosage from .125 to .25 so I have started the increase with my midday dose and then will add the morning and night doses over the next week or two. The one thing we have already noticed is my soft voice gets stronger after the .25 dose and the balance problems decrease so I am hopeful that .25 three times a day will result in reduced motor symptoms too. I also received a prescription for physical therapy which we hope will help with the gait issues among others.
I’ve also started a spreadsheet to track symptoms after reading a blogpost by another PWP on the Michael J Fox blog. I think it is an excellent idea and should be very helpful when meeting with the doctor. And speaking of Michael J Fox don’t forget his show premiers September 26th.
I find myself uttering this remark far too often already 🙂 Unfortunately it was the first of my noticeable symptoms and the one that is still present, even with the improvements from the medication. While my normal walk in the county park next door has gone from 42 minutes down to 37 minutes since I started the medication, I still have my slow times during the day. I guess even the walk is still slow, used to be able to complete in 34 minutes a year ago.
There are many research studies that show exercise helps to slow the progression of PD symptoms so I have been exploring some options in addition to my daily walk. I have found that the local Tai Chi group has weekly Health Recovery sessions so we plan to give that a try in the next week or so. The instructor said the Health Recovery class is for students who want to address particular health issues with Tai Chi, and also for those who are not able to take the regular beginning class. The class focuses on a number of exercises rather than on learning the Tai Chi set. She also indicated that many PWP are able to take the beginning class depending on the severity of their symptoms. So we’ll start with the Health Recovery class to see how my balance issues effect the training and go from there. Will give you an update in a future post.
We also discovered that the National Parkinson Foundation sponsors a retreat every October for newly diagnosed PWP (less than 5 years) and we were able to get into this years offering at the Kripalu Retreat in Stockbridge, MA. The retreat is the third week of October and covers many topics including yoga, nutrition, medication, exercise, etc. The retreat is designed for both the PWP and their caregiver so we are excited we are able to attend.
It’s been a busy couple of weeks since my last post, Mara had her second successful cataract surgery, we celebrated grandson Jacob’s 9th birthday and enjoyed a brief trip to Pickwick Landing state park in the southwest corner of Tennessee to meet up with good friends from Colorado who were attending a family reunion. And of course we enjoyed many sunsets from the screen porch and a relaxing boat ride on the lake. I may be slower but Life is good!
PS Don’t forget the Michael J Fox show, premiering September 26th!!
I know this is my second post in less than 30 days! I think I have too much free time on my hands while practicing this social distancing routine! Today I will catch up with what’s happening in PD School 2020 and talk a bit about how I have implemented what I’ve learned so far. If you aren’t aware of Dr. Mischley’s PD School 2020 you can read more about it my posts here and here. And check out the coupon offer at the end of this post!
The last lesson I covered was lesson 3 so I will quickly catch you up on lessons 4, 5, 6 & 7 just touching on highlights and things I found interesting. Lessons 4 and 5 cover the topics of food and nutrition. Lesson 4 discusses what to eat and lesson 5 discusses when and how to eat. In lesson 4 Dr Mischley covers foods that are “Good” for PwP and also foods that are “Bad” for PwP. The data to support the designation comes from the ongoing longitudinal research trial she runs at Bastyr University.
The good foods below are listed in order of decreasing impact, that is fresh vegetables had a greater impact than fresh fruit and so on.
Fresh vegetables
Fresh fruit
Nuts and seeds
Fish (not fried)
Wine (yessssssssssssssss!)
Olive oil
Coconut oil
Fresh herbs
The bad foods below are listed in order of greatest negative impact.
Canned fruit
Diet soda
Fried foods
Ice cream (noooooooooooo!)
Canned vegetables
Beef
Pasta
Soda
She also discusses how eating can impact medication absorption particularly when you eat protein just before or just after taking your meds. Various diets are discussed and her recommendation is go as vegan as you can and follow the Mediterranean diet.
Lesson 6 discussed the laboratory tests she requests for her patients. Several of the tests are not normally requested by your neurologist or PCP and some are not covered by insurance or Medicare. She notes at the end of the lesson that she is working on trying to set something up to provide the test to any PwP at a reduced rate (she hopes around $500 instead of $2000).
I was interested in this lesson because she pointed out that most PwP’s are low in both vitamins D and B12. A B12 deficiency can result in neuropathy, cognitive decline and loss of sense of smell. In addition tremor, trouble walking and balance may also be effected. Vitamin D deficiency can result in constipation, falls and balance issues, depression and cognitive decline.
I have been taking both B12 (120mg) and D (2000 iu) supplements for the last several years. My PCP tested me for both vitamins this year and I was within range as far as the lab was concerned. Dr Mischley provides her recommended reference range for the tests and I am below her recommended range in both. I was particularly surprised at the vitamin D result with all the sunshine I get here playing tennis, etc. Looks like I need to increase my supplement amounts of both vitamins.
She covers several other lab tests she conducts and why and I think you will find this lesson very interesting.
Lesson 7 discusses gut and intestinal health. This lesson includes a presentation by Dr Samantha Evans who practices with Dr Mischely in Seattle. Dr Mischely provides the introduction and overview pointing out that 50% of the dopamine neurons are located in your intestinal tract. She also discusses the need for gastric acid to breakdown food and medications. She points out as we get older the gastric juice becomes less acidic and recommended taking our medication with a glass of water mixed with 500 mg powered vitamin C to increase the acid level.
Dr Evans discusses how much of what happens in the intestinal tract impacts PwP’s. She discusses SIBO (Small Intestine Bacteria Overgrowth) and Leaky Gut and how it impacts PwP, particularly medication absorption issues.
So there are a few highlights from lessons 4,5,6, and 7. The next class is Do I need to take supplements? and will be available on the 28th of the month.
Quick timeout for some fine print! Before I discuss how I have implemented parts of these classes I just want to remind everyone I am not a medical practitioner and you shouldn’t rely on the information below as an alternative to medical advice from your doctor or other professional healthcare providers. If you have any specific questions about any medical matter you should consult your doctor or other professional healthcare provider. You should never delay seeking medical advice, disregard medical advice, or discontinue medical treatment because of information on It Is What It Is .
And we are back.
I have enjoyed these classes and have started trying to put some of what I have learned in to practice. In lesson 2, Dr Mischley discusses the success she has had with treating dyskinesia with high doses of DHA fish oil for 30 days and then adding CDP Citicoline twice a day to improve absorption of Levadopa. Since we eat salmon 4-6 days a week, I decided to test taking the CDP Citicoline as she recommended (2 250 mg capsules twice a day).
I began the test on February 2 and tracked the effects daily through April 4. As she mentioned in the lesson, my dyskinesia actually started getting worse because the supplement was improving the uptake of the medication and after 3 weeks I started to slowly reduce the amount of Sinement,Rytary and Mirapex over the next two months. My goal was to reduce my levadopa intake, reduce dyskinesia and not increase off periods.
By April 4 I had reduced the Mirapex from 1.5 mg to .5 mg (67%) and my Sinement from 2.5 tablets 3 times a day to 2 tablets 3 times a day (20% reduction). My dyskinesia is barely noticeable and off episodes are unchanged. I believe I could stop taking the Mirapex completely except the .5 mg helps reduce my restless leg syndrome which I had before my PD diagnoses but went away with the Mirapex which is also prescribed for restless leg.
I have also tried to do a better job of not taking meds too close to mealtime particularly high protein meals. And I have reduced my dairy intake, even ice cream! I’ve ordered some powered vitamin C which should arrive next week and I will test out taking medications with water mixed with vitamin C. Now if I could just figure out how to get Dr Mischely to remove ice cream from the bad food list!!
Just In!! It’s Parkinson’s Awareness Month and Dr Mischley is offering a coupon for $50 off the PC School for this month (All 24 courses for $100). If you haven’t signed up or have friends or relatives that might find this program useful, please send them this link to the course and the coupon code: AWARENESS. http://pd-school.teachable.com/
I know this is my second post in less than 30 days! I think I have too much free time on my hands while practicing this social distancing routine! Today I will catch up with what’s happening in PD School 2020 and talk a bit about how I have implemented what I’ve learned so far. If you aren’t aware of Dr. Mischley’s PD School 2020 you can read more about it my posts here and here. And check out the coupon offer at the end of this post!
The last lesson I covered was lesson 3 so I will quickly catch you up on lessons 4, 5, 6 & 7 just touching on highlights and things I found interesting. Lessons 4 and 5 cover the topics of food and nutrition. Lesson 4 discusses what to eat and lesson 5 discusses when and how to eat. In lesson 4 Dr Mischley covers foods that are “Good” for PwP and also foods that are “Bad” for PwP. The data to support the designation comes from the ongoing longitudinal research trial she runs at Bastyr University.
The good foods below are listed in order of decreasing impact, that is fresh vegetables had a greater impact than fresh fruit and so on.
Fresh vegetables
Fresh fruit
Nuts and seeds
Fish (not fried)
Wine (yessssssssssssssss!)
Olive oil
Coconut oil
Fresh herbs
The bad foods below are listed in order of greatest negative impact.
Canned fruit
Diet soda
Fried foods
Ice cream (noooooooooooo!)
Canned vegetables
Beef
Pasta
Soda
She also discusses how eating can impact medication absorption particularly when you eat protein just before or just after taking your meds. Various diets are discussed and her recommendation is go as vegan as you can and follow the Mediterranean diet.
Lesson 6 discussed the laboratory tests she requests for her patients. Several of the tests are not normally requested by your neurologist or PCP and some are not covered by insurance or Medicare. She notes at the end of the lesson that she is working on trying to set something up to provide the test to any PwP at a reduced rate (she hopes around $500 instead of $2000).
I was interested in this lesson because she pointed out that most PwP’s are low in both vitamins D and B12. A B12 deficiency can result in neuropathy, cognitive decline and loss of sense of smell. In addition tremor, trouble walking and balance may also be effected. Vitamin D deficiency can result in constipation, falls and balance issues, depression and cognitive decline.
I have been taking both B12 (120mg) and D (2000 iu) supplements for the last several years. My PCP tested me for both vitamins this year and I was within range as far as the lab was concerned. Dr Mischley provides her recommended reference range for the tests and I am below her recommended range in both. I was particularly surprised at the vitamin D result with all the sunshine I get here playing tennis, etc. Looks like I need to increase my supplement amounts of both vitamins.
She covers several other lab tests she conducts and why and I think you will find this lesson very interesting.
Lesson 7 discusses gut and intestinal health. This lesson includes a presentation by Dr Samantha Evans who practices with Dr Mischely in Seattle. Dr Mischely provides the introduction and overview pointing out that 50% of the dopamine neurons are located in your intestinal tract. She also discusses the need for gastric acid to breakdown food and medications. She points out as we get older the gastric juice becomes less acidic and recommended taking our medication with a glass of water mixed with 500 mg powered vitamin C to increase the acid level.
Dr Evans discusses how much of what happens in the intestinal tract impacts PwP’s. She discusses SIBO (Small Intestine Bacteria Overgrowth) and Leaky Gut and how it impacts PwP, particularly medication absorption issues.
So there are a few highlights from lessons 4,5,6, and 7. The next class is Do I need to take supplements? and will be available on the 28th of the month.
Quick timeout for some fine print! Before I discuss how I have implemented parts of these classes I just want to remind everyone I am not a medical practitioner and you shouldn’t rely on the information below as an alternative to medical advice from your doctor or other professional healthcare providers. If you have any specific questions about any medical matter you should consult your doctor or other professional healthcare provider. You should never delay seeking medical advice, disregard medical advice, or discontinue medical treatment because of information on It Is What It Is .
And we are back.
I have enjoyed these classes and have started trying to put some of what I have learned in to practice. In lesson 2, Dr Mischley discusses the success she has had with treating dyskinesia with high doses of DHA fish oil for 30 days and then adding CDP Citicoline twice a day to improve absorption of Levadopa. Since we eat salmon 4-6 days a week, I decided to test taking the CDP Citicoline as she recommended (2 250 mg capsules twice a day).
I began the test on February 2 and tracked the effects daily through April 4. As she mentioned in the lesson, my dyskinesia actually started getting worse because the supplement was improving the uptake of the medication and after 3 weeks I started to slowly reduce the amount of Sinement,Rytary and Mirapex over the next two months. My goal was to reduce my levadopa intake, reduce dyskinesia and not increase off periods.
By April 4 I had reduced the Mirapex from 1.5 mg to .5 mg (67%) and my Sinement from 2.5 tablets 3 times a day to 2 tablets 3 times a day (20% reduction). My dyskinesia is barely noticeable and off episodes are unchanged. I believe I could stop taking the Mirapex completely except the .5 mg helps reduce my restless leg syndrome which I had before my PD diagnoses but went away with the Mirapex which is also prescribed for restless leg.
I have also tried to do a better job of not taking meds too close to mealtime particularly high protein meals. And I have reduced my dairy intake, even ice cream! I’ve ordered some powered vitamin C which should arrive next week and I will test out taking medications with water mixed with vitamin C. Now if I could just figure out how to get Dr Mischely to remove ice cream from the bad food list!!
Just In!! It’s Parkinson’s Awareness Month and Dr Mischley is offering a coupon for $50 off the PC School for this month (All 24 courses for $100). If you haven’t signed up or have friends or relatives that might find this program useful, please send them this link to the course and the coupon code: AWARENESS. http://pd-school.teachable.com/
I know this is my second post in less than 30 days! I think I have too much free time on my hands while practicing this social distancing routine! Today I will catch up with what’s happening in PD School 2020 and talk a bit about how I have implemented what I’ve learned so far. If you aren’t aware of Dr. Mischley’s PD School 2020 you can read more about it my posts here and here. And check out the coupon offer at the end of this post!
The last lesson I covered was lesson 3 so I will quickly catch you up on lessons 4, 5, 6 & 7 just touching on highlights and things I found interesting. Lessons 4 and 5 cover the topics of food and nutrition. Lesson 4 discusses what to eat and lesson 5 discusses when and how to eat. In lesson 4 Dr Mischley covers foods that are “Good” for PwP and also foods that are “Bad” for PwP. The data to support the designation comes from the ongoing longitudinal research trial she runs at Bastyr University.
The good foods below are listed in order of decreasing impact, that is fresh vegetables had a greater impact than fresh fruit and so on.
Fresh vegetables
Fresh fruit
Nuts and seeds
Fish (not fried)
Wine (yessssssssssssssss!)
Olive oil
Coconut oil
Fresh herbs
The bad foods below are listed in order of greatest negative impact.
Canned fruit
Diet soda
Fried foods
Ice cream (noooooooooooo!)
Canned vegetables
Beef
Pasta
Soda
She also discusses how eating can impact medication absorption particularly when you eat protein just before or just after taking your meds. Various diets are discussed and her recommendation is go as vegan as you can and follow the Mediterranean diet.
Lesson 6 discussed the laboratory tests she requests for her patients. Several of the tests are not normally requested by your neurologist or PCP and some are not covered by insurance or Medicare. She notes at the end of the lesson that she is working on trying to set something up to provide the test to any PwP at a reduced rate (she hopes around $500 instead of $2000).
I was interested in this lesson because she pointed out that most PwP’s are low in both vitamins D and B12. A B12 deficiency can result in neuropathy, cognitive decline and loss of sense of smell. In addition tremor, trouble walking and balance may also be effected. Vitamin D deficiency can result in constipation, falls and balance issues, depression and cognitive decline.
I have been taking both B12 (120mg) and D (2000 iu) supplements for the last several years. My PCP tested me for both vitamins this year and I was within range as far as the lab was concerned. Dr Mischley provides her recommended reference range for the tests and I am below her recommended range in both. I was particularly surprised at the vitamin D result with all the sunshine I get here playing tennis, etc. Looks like I need to increase my supplement amounts of both vitamins.
She covers several other lab tests she conducts and why and I think you will find this lesson very interesting.
Lesson 7 discusses gut and intestinal health. This lesson includes a presentation by Dr Samantha Evans who practices with Dr Mischely in Seattle. Dr Mischely provides the introduction and overview pointing out that 50% of the dopamine neurons are located in your intestinal tract. She also discusses the need for gastric acid to breakdown food and medications. She points out as we get older the gastric juice becomes less acidic and recommended taking our medication with a glass of water mixed with 500 mg powered vitamin C to increase the acid level.
Dr Evans discusses how much of what happens in the intestinal tract impacts PwP’s. She discusses SIBO (Small Intestine Bacteria Overgrowth) and Leaky Gut and how it impacts PwP, particularly medication absorption issues.
So there are a few highlights from lessons 4,5,6, and 7. The next class is Do I need to take supplements? and will be available on the 28th of the month.
Quick timeout for some fine print! Before I discuss how I have implemented parts of these classes I just want to remind everyone I am not a medical practitioner and you shouldn’t rely on the information below as an alternative to medical advice from your doctor or other professional healthcare providers. If you have any specific questions about any medical matter you should consult your doctor or other professional healthcare provider. You should never delay seeking medical advice, disregard medical advice, or discontinue medical treatment because of information on It Is What It Is .
And we are back.
I have enjoyed these classes and have started trying to put some of what I have learned in to practice. In lesson 2, Dr Mischley discusses the success she has had with treating dyskinesia with high doses of DHA fish oil for 30 days and then adding CDP Citicoline twice a day to improve absorption of Levadopa. Since we eat salmon 4-6 days a week, I decided to test taking the CDP Citicoline as she recommended (2 250 mg capsules twice a day).
I began the test on February 2 and tracked the effects daily through April 4. As she mentioned in the lesson, my dyskinesia actually started getting worse because the supplement was improving the uptake of the medication and after 3 weeks I started to slowly reduce the amount of Sinement,Rytary and Mirapex over the next two months. My goal was to reduce my levadopa intake, reduce dyskinesia and not increase off periods.
By April 4 I had reduced the Mirapex from 1.5 mg to .5 mg (67%) and my Sinement from 2.5 tablets 3 times a day to 2 tablets 3 times a day (20% reduction). My dyskinesia is barely noticeable and off episodes are unchanged. I believe I could stop taking the Mirapex completely except the .5 mg helps reduce my restless leg syndrome which I had before my PD diagnoses but went away with the Mirapex which is also prescribed for restless leg.
I have also tried to do a better job of not taking meds too close to mealtime particularly high protein meals. And I have reduced my dairy intake, even ice cream! I’ve ordered some powered vitamin C which should arrive next week and I will test out taking medications with water mixed with vitamin C. Now if I could just figure out how to get Dr Mischely to remove ice cream from the bad food list!!
Just In!! It’s Parkinson’s Awareness Month and Dr Mischley is offering a coupon for $50 off the PC School for this month (All 24 courses for $100). If you haven’t signed up or have friends or relatives that might find this program useful, please send them this link to the course and the coupon code: AWARENESS. http://pd-school.teachable.com/
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