Welcome to Dr. C’s Journey with Rigid Parkinson’s Disease
Before I delve into the diverse range of topics I plan to write about, let me introduce myself.
I was diagnosed with a type of rigid Parkinson’s disease (PD) in my early 60s. It is an idiopathic form, and hard for others to see. I experience the symptoms of rigidity, inaccurate muscle aiming, and slowing of movement, along with some non-motor symptoms and quite a bit of pain.
I have a good response to Sinemet (carbidopa-levodopa), but still see a slow progression in my symptoms. I see the effects every day of my life. I have been on a journey to make sense of what is happening and to attain a high quality of life in the face of PD symptoms. This column will share my journey and the insights I’ve gained along the way.
I am also a researcher and writer (see: www.DrC.life).
After years of hearing, “You look fine, I don’t see the PD in you,” while having the worst of the symptoms under medication control, I thought it was time to put pen to paper. I have a unique background that combines clinical experience helping people with the ability to reframe things so that they may be viewed in a new light.
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In this column, I will discuss new ideas and things you haven’t heard before. But mostly they will be ideas that are reframed. This is the result of my struggle to make meaning out of rigid Parkinson’s disease and what it is doing to my life. Hopefully, the information will help you to make sense of some experiences you might have in connection with PD.
The unique perspective that this column will bring to the topic of attaining quality of life with rigid Parkinson’s disease is one I believe will be of interest to the reader. I have a Ph.D. in rehabilitation counseling and I specialized in the treatment of cerebral-neurological disorders. I have helped people attain a higher quality of life after terrible things happened to their brains.
I am also a scientist, and during the past five years, I have conducted extensive research on the ideal rehabilitation plan for a person like me, with early signs of PD. I have put such a plan in place for my own life, although it’s not as perfect as I would like, and I am struggling with things like cutting back on ice cream.
I think that tackling the disease head-on with a vigorous rehabilitation plan makes as much of a difference in the quality of my life as medication does. (I’m not saying to replace the medication, but rather to enhance it.) My plan includes the following:
- Five to 10 hours of light and hard exercise per week.
- Fifteen to 20 hours of mental-stimulation activities per week.
- An ADA house (one that meets standards set by the Americans with Disabilities Act) close enough to receive support from family.
- Decreased stress, a healthy diet, and doing fun things.
Those are the basics of the plan, which is quite flexible. A lot of fine-tuning happens when the basic plan is applied specifically to the needs of a person, like you, the reader.
Any rehabilitation plan needs to consider where a person falls within the spectrum of Parkinson’s symptoms. In a treatise on PD by Stewart Factor and William Weiner, the authors speak to the importance of understanding the non-motor symptoms associated with PD and the necessity of early intervention.
“Dr. C’s Journey with PD” is personal, but it also will address these two points and various aspects of the PD spectrum. In each column, I will try to leave readers with something that might improve their quality of life with Parkinson’s.
Next week: Parkinson’s disease as a spectrum.
***
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.
About the Author
Comments
Ann Perkins
I look forward to your column. It is rare to see a brain specialist come to terms with being a PWP. Your perspective will be of interest.
Dr. C
Thanks for the positive feedback. I don't think I would call myself a brain specialist, but rather a rehabilitation therapist who focused on injuries to the brain. The difference is probably subtle.
herbert krohn, md
i like dr. c's column a lot.
i appreciate the absence of religion.
Dr. C
Thanks for the positive feedback, being the "new kid on the block" you can be sure it is well appreciated. I am not averse to religion, there is research to suggest that faith is important to the healing process. At some point I'll do a column on faith maybe add in a discussion on the placebo effect.
K. A. Daly
Dr. C, Surely you forgot Navy Seal and concert violinist.
Dr. C
I am thinking that this is humor in regards to my "renaissance man" mini-bio. I am always wary of listing accomplishments knowing that some folks could be put off by it.
Felix Nedorezov
Dr. C, I'm looking forward to reading your eclectic posts. BTW do you have any problems with your balance and gait? Any suggestions improving these would be highly appreciated.
Dr. C
The issues surrounding movement and PD are fairly complex, but I will be touching on them in the columns to come. I can say that the biggest health risk in connection to balance and gait problems is falling. One of the best ways to minimize that risk is to keep your core body in really good shape (note the number of hours of exercise mentioned in my column). I'm going to do a column on exercise at some point.
jeanne nemlich
My husband was diagnosed 5 years ago with late onset Parkinsons. Dr. C's column has helped me to explain to family and friends more about the non-motor symptoms that he experiences than most other columns that have come my way. Thanks....
Dr. C
Thanks for the support. I am hoping that the information in the future columns with be illuminating.
Derek Marshall
I happen to know Dr. C, and another of his many accomplishments is his knowledge of geology, which is enormous. Just ask him about Herkimer diamonds...
Dr. C
Thanks for the support my friend.
Stephen Duffield
I must be your twin, as I am sure you were writing about me.
Regs, Dr. D
Dr. C
I am glad the column resonated with you. I hope you will enjoy the ones to come.
Mike
This sounds good to me. Diagnosed some 5 years ago it took me a while to deceide where to go and what was "good for me" may not help others. But ...... I chose extreme exercise and diet, to back up medication after 2 years hard work running and learning to ride a bike. I am pleased to announce that I have qualified to represent GB in 2019 at the ETU sprint duathlon championship in Rumania. I will not give in to PD .It's just part of my life.
Dr. C
Has hard exercise made a difference in the quality of your life? Do you think it had slowed the progress of your PD? Has it helped with balance and gait problems?
jean mellano
I cant believe I typed an entire response and the website lost it since I submitted without my email and name... jeez...
I can so relate to your situation. I was diagnosed with PD in my early 60s. Most say I look fine, but I feel like crap all the time. I have some rigidity, poor fine motor skills, bradykinesia, extreme fatigue and lack of motivation. i have a decent response to Sinemet (although sometimes i wonder) I too see the effects every day of my life.
I have also become a writer after my diagnosis and have a column on this site.
My plan is similar to yours..
Prior to my diagnosis, I was a dancer and a cyclist and I practiced movement my entire life. Now, I fight through the fatigue to at least try to accomplish the following:
--Boxing for PD 2x/week (can be intense), yoga class 2x/week, meditation 2-3x/week, weightlift and balance exercises 3x/week, power hour class (interval train) 1x/week, PT 1x/week, try to walk (1 mile) or cycle(5-6 miles) 1-2 times/week. In my mind, movement/exercise is the most important weapon we have in fighting this disease.
-- 4-6 hours/day on my computer writing or doing graphic arts work
-- minimize my stress by not over committing myself
-- I am a vegetarian and try to eliminate dairy and gluten as much as possible.
-- massage 1x/week for rigidity and stress reduction
As for having fun, nothing in life is fun for me anymore :-(
I look forward to your column. Can I subscribe to it, or is there a link to it on this website?
Dr. C
Jean: Excellent response to my first column. Nice to have a kindred spirit out there. I read your boxing column and your thoughts on how it helped with core body strength - something I am a strong advocate of to help prevent falls. The rest of the items on your rehab plan are GREAT! As for "fun" - well, I hope to have some columns on apathy, getting stuck (to be covered in part two weeks from now), pain, fatigue (planned for 3 weeks from now), and depression. Right know I think it's a mixed bag of stuff that needs clarification for folks so that they can move toward a higher quality of life.
Subscribe? Not a clue. I do know that they said they were going to try to publish my column on Fridays. Maybe someone else will read your comment and provide more info on this then I have.
jean mellano
hi dr. c, i really am looking forward to reading your columns.try going back to the person who recruited you to write for this website. I had mine added to the Columns list pull down (on home page top line links after I wrote a few columns. There are 2 of us on this list now.
Vickey Reilly
This resonated with me today, I'm looking for folks who have embraced more than just a 'take this pill' methodology. Synamet aftereffects are worse than my current symptoms. I eat incredibly well, exercise intensely 5-6 hours a week and always feel better if I miss a dosage. I'm interested in seeing more thoughts on exercise and the newer gut research. I'm a CRC/MRC and hope to find your insights helpful.
Dr. C
It's so nice to get these encouraging responses. I think you will find the columns to be interesting. I want to do several pieces on exercise because I believe its the one most important thing you can do to help with PD. But I also think that the path to including exercise is different for everyone. Diet is also important and again we face the issue of individual needs when trying to put healthy changes into place. What I am going to do in the columns is first lay down a foundation of information that applies to most folks with PD. From there we can look at rehabilitation specifics.
Thomas Chambers
I am an full time caretaker of my lovely wife Sharralyn who was diagnosed Atypical Parkinsonism/Parkinson. My wife fell an blew her hip out an had total hip replacement on top of the disease and all the symptoms tat go with it. What I have noticed is the dementia has set in and she is seeing her imaginary what ever. She is enrolled in home health and is showing improvement. The Sentiment does not work for her. She has gone from 4 to 5 and now down to 1. She has no bladder control. Her eye lids stay close when she becomes tired. This of course is due to the cognitive problem with the brain. She has dizziness, in balance problem, and many othe symptoms related to this disease. She goes in an out as her brain continues to shut down. The progression is horrible to watch. I have accepted the inevitable and go on with my life the best I can. One other symptom I forgot to mention was loss of smell. She is getting stronger from the hip replacement and shows improvement daily. I am great full for this.
Dr. C
Thanks Tom for posting such a moving comment. The losses associated with PD, for patient and caregiver, is a serious matter. I see it being written about in various ways throughout this publication. Support for the caregiver is also very important and I hope you have a network in place. Keep posting and ask questions if you have any.
Dr. C
I hope that the columns will be of some benefit to you and your family. PD can be rough on everyone. Compassionate blessings to you and your loved ones.
AUDREY SIDLO
you mention ice cream to me that means to try & give up sugar?
Dr. C
I think diet changes are important, but this falls outside of my area of expertise. The ice cream issue is just a personal one - an allergic response, but also a craving.
W-t-P
Thanks for the post, which is both fun and useful to read, and good luck struggling with our common problem. I would be particularly interested to learn about the mental-stimulating activities that you mentioned; hope you plan to address this in details in the upcoming posts.
Dr. C
Keep an eye out in the columns to come. I will address the topic of mental activity in many different ways.
WWMerritt
My Mother diagnosed with Parkinson 07/2012 and Feeding GI Tube May 2014 experience the horrors of Rehab and roller coaster of Long Term Care Nursing Homes. It has been horrible and she never received speech and swallowing therapy at Nursing Home. Medicare said they never denied access. The Staff refuse to follow proper Feeding tube Bolus GI Feeding techniques in and out of ER hospital for Pneumonia, not elevating, no even wearing gloves, washing their hands. Traumatic. family inquired and meetings with Medical Director for proper positioning elevation, range of motion, rotation to prevent bed sores and skin tears. Parent is 88 and Oral Care and basic Eye Drops for infections and UTI were ignored and now family is being bullied by Administration and Staff because we are always there daily and doing the bathing,cleaning oral care. Seeking Support and Legal search for Negligence. Those families please do not place your Love Ones in these facilities without a team going 4 Shifts daily and please try to get advance home SKILLED care and read and watch YOUTUBE for Preventive Care and JOURNAL and take the love ones to Specialist and Experts, NEVER wait in LPN RN CNA to help they will not tell you the truth. DO NOT LET YOUR LOVED ONES SUFFER like my Mother has never been given more than a couple of Tylenol since 2014 when she got her Feeding Tube surgery. They bully and threaten even the POA. Please help us PRAY for LEGAL INVESTIGATIVE TEAMS and others with Parkinson and Feeding Tubes are neglected in Rehab and Long Term Care Nursing Homes Eastern NC
Dr. C
You point out some very important issues concerning nursing care (not my area of expertise) and rehabilitative services for patients in nursing homes. Perhaps other readers will chime in here and add some suggestions to the ones you so adequately articulated. I hope to write about my experiences with rehabilitation of the brain and how that may apply to Parkinson's.
Kusum
I like to keep on reading your articles and responses. Currently I cannot reveal why. But I am certain, this will be benefiting to me.
Ganeshan Kalembeth
We are all struggling and coping with what best is good for each with a lot of support from family and others. I find my levodopa medication no more effective perhaps reached wear off stage.Added rasagline but still of not much help.I follow a very strong exercise regime which is what keep me going despite a hard job.
Looking forward to your column which I am sure will bring new perspective and direction.
Nora Beatrice Ramsden
I am 86 and was diagnosed with PD 5 years ago. I struggle with apathy, sleep problems, rigidity and pain and other problems! I am looking forward to encouragement from your column!
Manuel Frausto
I am 79 yrs old with PD since 8 yrs ago has progressed with all types a medication and supplements and exercise. I have heard of stem cell therapy. Have you heard of any one trying that approach?
Dr. C
This is a medical treatment so it falls outside my area of expertise. But I do know that the field of stem cell research is advancing.
Reijo Kivilehto
Are there any studies with objective to find the root cause of "Brain diseases"? The method can be big data analysis. James Parkinson ollected the observations for study from 3 patients and 3 passers by.
It seems to be possible to create a questionnaire for patients to describe different symptoms and incidents before
the diagnosis.
The questionnaire helps to rank the symptoms.
Dr. C
I know that there is quite a bit of research being done on Parkinson's disease and quite a bit of debate about its nature versus Parkinson like symptoms due to other causes. Add on top of that the problems of early detection (something I am addressing in my columns). "Root cause" of brain disease, all brain disease? You might get a start on that if you did a study as large as "The China Study" (by Campbell and Campbell) that looks at diet and certain diseases. But the brain is such a plastic organ, designed to change in response to the input (or lack of) provided, so nailing down specific features I think will be a careful balance of universal versus patient specific. I have pondered on the questionnaire idea, but my plate doth overflow already. Perhaps other readers will chime in here and add their input. Thanks for the wonderful post.
CARL HERRON
MY HUSBAND IS A VIETNAM VETERAN AND HAS PARKINSON SINCE 2016 HE IS TAKING MEDICATION FROM THE VA THEY ALSO SUGGESTED DBS TO HELP WITH THE TREMORS WE LIKE TO HEAR FROM SOMEONE THAT HAS DBS DONE AND TO LET US KNOW IF THAT IMPROVES THE QUALITY OF LIFE PLEASE REPLY
PHIL O
I had DBS done 5 years ago, and I can say it has changed my life. With only minimal adjustments after the initial set-up period, most of my PD symptoms have been reduced by 90% or completely eliminated. The VA has good results with DBS, but it takes patience to get the full benefit, so don't expect instant results after the DBS is activated. It took almost one year of adjustments and finding a neurologist proficient in DBS adjustments to achieve the excellent results I have enjoyed for the past 5 years. DBS is not a cure for PD, but it can keep symptoms under control with fewer meds, and quality of life for me has IMPROVED after DBS and continues to improve. I still take meds, but I sleep better, drive cars, play guitar and keyboard,and do most repairs and maintenance on real estate I own.If your husband makes it through the physical and mental tests required to qualify for DBS, he should go for it. I would do it all over again if I had to, the benefit is that good. Go on You Tube and search DBS and watch some of the videos of PD patients with their DBS turned off, then turned on. The difference will amaze you.
VALERIE MATTHEWS
Dr. c.
I was diagnosed with Multiple Systems atrophy parkinsons at the age of 67. I live in Canada and am unable to even get to a neurologist for 2 year waiting list. I am 71 years old now and my disease has advanced fast in the last year. I excercise every day on my recumbent bycycle and i do weights. I find that it helps some but not always. I have no balance and have no upper body strength. When I fall my husband must pick me up and help me back to my walker. I fid my eyesight is going double and I am unable to read with both eyes. I find it easier if i shut one eye and read with only the other. I am really looking forward to reading your columns. I am currently waiting on a list to see a neurologist.
Fredrick Boling
I am a retired surgeon, retired writer, aged 92, who developed Parkinson’s about 6 or 7 years ago. We have only 1 neurologist available who knows less about my disease than I. My attending internist is retiring and is of no help, other than signing prescriptions. I am typing this by hunt and peck, having been a very fast typist, but that is all in the past. I have 3 novels published, a collection of shot stories and many articles to my credit. I am a Christian , saved by Jesus when I was 11 years of age. I am unable to go to church for about 2 years. I have no (0) balance – am unable to reach beyond my immediate position, am totally dependent on my wife and children for everything. I have been on Home Health Care for 2 years after 2 weeks in a Rehab hospital, a fall breaking 3 ribs and 5 days in the hospital. I have a Foley catheter due to urge incontinence and 2 TURPs. I have the care of 2 excellent physiotherapists who are keeping me active in spite of all my problems. I am truly blessed. Thanks, Doctor C, for writing a column that will lend much to those suffering this horrible disease. I look forward to reading them.
Dr. Fredrick Boling
Dr. C
Your comment was so moving it brought tears to my eyes. God bless you in your difficult journey.
PHIL 0
For my PD, DBS has provided me with a very high quality of life which has stayed high since 2013 when I had DBS done. I would not hesitate to recommend DBS to anyone who can pass the rigorous physical and mental tests required to qualify for the surgery. Post-op results are not immediate, so patience is required as adjustments are made to DBS and meds maybe over several months. A Neurologist proficient in DBS adjustments is a must to get optimum results long-term. After 5 years with DBS I can say it provides consistent symptom management along with less meds than before DBS.
PHIL O
I just saw a You Tube video showing a precision surgical robotic system called, the Mazor Robotics Renaissance Guidance System which provides pre-op software, and a Robotic Surgical Arm that can place the DBS electrodes in the precise area of the brain so accurately that DBS surgery that took 6 or more hours is reduced to under one hour, with better and safer outcomes for the patient and medical professionals. It has been in trials since 2013, and Medtronc is the US distributor. Medtronic developed the first FDA approved DBS system and the Renaissance can be used in many surgical procedures that require high precision using Intraoperative Computed Tomography without microelectrode recording. The patient is asleep the whole time, and complications such as excessive bleeding, etc are significantly reduced. This System is a game changer for any DBS candidate, and patients requiring high precision surgery. It also reduces surgical cost to the patient.