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Why Walk? I Hate Walking!
My name is John Pepper. I am a Parkinson’s patient. My Parkinson’s disease started in 1963, when I found that I could not throw a ball properly. However, I was only diagnosed with Parkinson’s in 1992, when I developed a bad walking gait.
Why did it take twenty-nine years before I was diagnosed?
I am neither a doctor nor a gym teacher. Having said that - since diagnosis - I have taken note of every news item I could find, concerning Parkinson's. Many news articles claimed that certain types of energetic exercise can and do affect the progression of Parkinson’s Disease
What has been my experience regarding exercise?
I spent twenty-two years, from 1970 to 1992, going to the gym, for one hour a day, six days a week, doing aerobic exercises and weight-training exercises.
For the next two years, after diagnosis, I increased the gym to 90 minutes - doing 60 minutes of aerobic exercise on the treadmill, step climbing and bicycle machines; and then, thirty minutes on various other weight-bearing machines.
During those two years, my condition continued to slowly get worse. After two years in 1994, I gave up the gym entirely, and gave in to my wife, Shirley's, request to join her at Run/Walk for Life. Within three months, my performance had improved quite noticeably. That was the first time it had shown any improvement for many years. That was the turning point in my Parkinson’s Disease!
What actually happened, since giving up going to the gym?
At Run/Walk for Life, I only did aerobic walking for three sessions a week, having started at twenty minutes a session, which increased by five minutes every second week. At the end of three months, I was walking for 45 minutes a session. The reason for doing only walking every second day was to give my muscles a chance to recover, after each exercise session. I was only allowed to walk every second day. In the past, I had been doing the same exercise every day, thus, not giving my muscles a chance to recover. They ended up eating up muscle tissue, in order to get the required energy they needed. The result was, my muscles got smaller and my fatty tissue grew larger. Not a good situation!
Energetic Walking Produces a substance Called GDNF!
What produces GDNF (Glial Derived Neurotrophic Factor) and why is it produced?
The body has a survival system, which is only activated when it thinks the body is under attack, or in danger. When we are under attack, or in danger, we either stand up to it and fight for our life, or we run away from it - the fight or flight syndrome - of which you must have heard.
The body produces this Growth Factor in every area of the body, which repairs the damaged tissue, if and when required. GDNF repairs damaged brain tissue, whereas the Growth Factor produced in the liver produces liver tissue etc. Our problem is that we have damaged Glial cells, which are neurons, that produce dopamine. When the GDNF repairs some of the neurons, we produce more dopamine and we start to get better. However, as we have not done anything to stop the Parkinson's from killing off more glial cells, we have to continually try to produce enough GDNF to stay ahead of the Parkinson's.
In other words, we have our own, built-in, repair kits!
What is the optimum time we should walk?
The optimum time for exercise has been found to be three, one-hour sessions, at maximum effort, per week, with a one day rest between sessions.
Why does more than one hour not produce more GDNF?
I don't know, but many tests have been done, and that was the result.
Why is walking or running the best form of exercise for this purpose?
It keeps our pulse-rate up to maximum level and maintains it there until we stop. Other forms of exercise tend to be stop-start, and cannot be sustained at any level, for the required one hour. If we were boxing, it would be just as good, but we could not sustain that for a full hour. As most Parkinson's patients have problems with balance, I would recommend walking, but running is just as good. Walking on the open road is better than walking on a treadmill, because we have to think about the surface on which we are walking and where we are going - whereas, on a treadmill, we merely have to put one foot in front of the other. This came out of many of the studies. The best results are produced when the brain is kept as active as the body. I assume that the condition required by the body to, produce the GDNF, would involve both the brain and the body.
Guess why I choose to walk?
I get lots of patients telling me that they don't like walking. It is boring! To me, it is not half as boring as the thought of being unable to move very well, or go anywhere, while living from one dose of medication to the next.
I have to concentrate so hard on walking properly, that I don't have time to get bored. It is so important to me, that I would not care if it got boring, as I enjoy my quality of life, even at the age of seventy-nine (2014).
We all have to make our own choices!
Either we do nothing, take our medication and put up with our Pd; or we exercise regularly and honestly, take the minimum medication and enjoy the benefits, by living a full life.
The choice is all yours!
Rhythmic beat may help Parkinson’s rehab
Copied from The Northwest Parkinson’s Foundation Weekly News Update
Walking to an audible beat may be useful in rehabilitation for people with Parkinson’s disease and similar disorders, a study shows.
futurity.org - Researchers studied the effects of various metronomic stimuli (a mechanically produced beat) on fifteen healthy adults, ages 18 to 30. Walkers participated in two sessions consisting of five 15-minute trials in which the participants walked with different cues.
In the first, participants walked at their preferred walking speed. Then, in subsequent trials, participants were asked to walk to a metronomic beat, produced by way of visuals, sound, or touch. Finally, participants were asked to walk with all three cues simultaneously, the pace of which was set to that of the first trial.
“We found that the auditory cue had the greatest influence on human gait, while the visual cues had no significant effect whatsoever,” says Ervin Sejdic, an assistant professor of engineering at the University of Pittsburgh, who reports findings in the journal PLoS One.
“This finding could be particularly helpful for patients with Parkinson’s disease, for example, as auditory cues work very well in their rehabilitation.”
With illnesses like Parkinson’s disease—a brain disorder leading to shaking (tremors) and difficulty walking, — a big question is whether researchers can better understand the changes that come with deterioration.
“tentimes, a patient with Parkinson’s disease comes in for an exam, completes a gait assessment in the laboratory, and everything is great,” says Sejdic. “But then, the person leaves and falls down. Why? Because a laboratory is a strictly controlled environment. It’s flat, has few obstacles, and there aren’t any cues (like sound) around us.
“When we're walking around our neighborhoods, however, there are sidewalks, as well as streetlights and people honking car horns: you have to process all of this information together. We are trying to create that real-life space in the laboratory.”
In the future, Sejdic and his team would like to conduct similar walking trials with patients with Parkinson’s disease, to observe whether their gait is more or less stable.
“Can we see the same trends that we observed in healthy people?” he says. “And, if we observe the same trends, then that would have direct connotations to rehabilitation processes.”
The team feels that visual cues could be considered as an alternative modality in rehabilitation and should be further explored in the laboratory. Additionally, they plan to explore the impact of music on runners and walkers.
Funding for this project was provided, in part, by the University of Pittsburgh, the University of Toronto, and Holland Bloorview Kids Rehabilitation Hospital.
http://www.futurity.org/health-medicine/rhythmic-beat-may-help-parkinson%E2%80%99s-rehab/
More about Walking
My name is John Pepper. I was diagnosed with Parkinson’s disease in 1992.
Why can I walk properly, when I focus my full attention on each move?
Not having had any medical training and not being a scholar, I have to give my answer as a person with Parkinson’s disease - I don’t know!
Why is walking so important?
Here I am on safer ground! In 2006, the results of a lengthy scientific study, done in the USA, gave the answer to this question. These results were announced at the First World Parkinson’s Conference, held in Washington, DC. So why do we all not know about this important development?
Certain types of energetic exercise can slow down or even reverse Pd.
These results should be displayed on the walls of every neurologist in the world!
This was the reason why my Pd took so long to be diagnosed, in 1992, about twenty-nine years after my first symptom appeared in 1963.
Read all about this type of exercise and what I had been doing since 1970, which slowed down my Pd. My book, ‘Reverse Parkinson’s Disease’ tells my whole story, so that others can benefit from knowing what I did, in order to overcome my Pd. In a nutshell, I think that fast walking, MAO-b inhibitor medication, and stress control were responsible for my improved health! To tell the whole story in an article is just not possible.
This is the most exciting story for all Pd sufferers. It is the first story of REAL HOPE we have ever had!
The real question is:
Why don’t neurologists tell their patients about this good news? Why indeed!
The Five Most Important Actions Needed to Take Control of Parkinson’s Disease
I am not a doctor, I am a Parkinson’s Patient with 51 years of experience. These are the actions, which have helped me:
1. Regular Energetic Exercise
2. An MAO-b Inhibitor as the only Medication
3. Learn how to Take Conscious Control of all movements
4. Manage Stress Levels
5. Adopt a Positive Attitude
John Pepper
4 Morning Tips for a Calm and Joyful Day!
Copied from The Northwest Parkinson’s Foundation Weekly News Update
Elisha Goldstein
Psychcentral.com - How we start the morning often sets the stage for how the rest of the day unfolds. Of course life throws us curve balls in the middle of the day, maybe you get a stressful email or someone rear ends you with their car or you lost that deal that you were looking forward to. Anything can happen in the present moment, but how we start our day can often affect how we greet those challenges.
Here are four tips to start your day that will help you with the inevitable ups and downs that you get handed.
1. Mindful Check-In – It’s good to begin the day simply noting where you are starting the day from. How is your body, what emotions are present, is your mind calm or already racing off to work? If you’re lying in your bed, you just note that, getting a sense of the body feels comfortable or tense. Are you feeling calm, anxious, annoyed, or maybe neutral? What is on your mind?
2. Prime Your Mind for Good – After a brief mindful check-in, one way of inclining your mind toward resiliency and even opening up to the good of the day is to consider an intentional gratitude practice. What in your life right now do you have to be grateful for? It could be something simple, like waking up on the right side of the bed, to having a roof over your head, to having a good cup of coffee in the morning. Just practice inkling your mind to the good in life.
3. Bring Presence to the Morning Activities – When you’re in the shower, be in the shower, not solving problems at work already. When you’re making breakfast for you or your family, consider the intention of that being to take care of yourself and others through the day. Put some love into your food. If there are pets or other family members in the house, before you leave make sure to say an intentional goodbye, looking into their eyes
4. Red Light Practice – As you drive to work use red lights as an opportunity to just check in, pressing the reset button if traffic has got you flustered or just using it as an opportunity to get centered and focus on what matters. You can make the choice to listen to your favorite music, intentionally plan the day out in your mind, or just have a quiet drive for a change. If you take public transportation you can do the same thing every time the bus, train, or subway stops. If you work from home, try this before turning on your computer. Exposing yourself to choices and acting on them just feels good and primes your mind for the rest of the day that you have choices in how you want to respond to situations.
Try these four things each morning as an experiment to see how your life changes.
As always, please share your thoughts, stories and questions below. Your interaction creates a living wisdom for us all to benefit from.
http://blogs.psychcentral.com/mindfulness/2012/12/4-morning-tips-for-a-calm-and-joyful-day/
Take a Walk in The Park
04/28/2013
Walking improves stamina, energy, heart health, strength, and balance. As a form of exercise walking may even alter the physical and brain changes that occur with Parkinson’s over time. Walking can also help the mind and the soul. Research tells us that exercise including simply just walking, can protect our thinking abilities as we get older and protect from disease…
· Reduce cognitive decline that can happen with aging
· Reduce the risk of developing Alzheimer’s disease a form of dementia that attacks memory and thinking skills
· Reduce the decline executive function in Parkinson’s. (Learn more about executive function.)
Walking can also be good for our emotions and our soul. We have long known that exercise can help our mood and treat depression. A walk in the park is like getting a double dose of therapy.
John Muir, a naturalist and nature lover once wrote,
“In every walk with nature one receives far more than he seeks.”
In a time when many of us are flocking to gyms, joining exercise classes or getting on the treadmill to get in ‘their exercise’, we may be missing an opportunity to move and feel well. Researchers evaluating the effect of walking on our mood showed that a walk in the park improved mood more than a similar walk in the shopping mall. Our environment affects how we feel, think, move and behave. Think about a walk in the park on a beautiful sunny day and the feeling and experience that comes to mind
· The fresh air sharpens the senses and clears the mind of clutter
· The marvel and good natured fun of watching nature
· The stress dissolving effect of the peaceful calm of a gentle breeze
· The sense of hope and anticipation that comes with the first spring buds.
· The reflection of days past and what brings joy to us in life as we watch the sun set
· The challenge and sure footedness of walking that is gained from walking on uneven ground
· The chance to slow down, share your walk and connect with a loved one
· The energizing feel of the sun
· The joy and reminder that little things like a bird’s song or child’s laughter are important in life
· The soothing effect of the sun’s warmth on our back
The benefits of nature are available to us all. The power of exercise in Parkinson’s, healthy aging and emotional wellbeing are undisputed. Enhance this power by taking your next exercise activity outdoors. Whether you take a stroll in your wheelchair in the park, take a walk around the block or a short stroll in your backyard, the benefit of nature is priceless.
Author: Monique Giroux, MD
Copyright 2013 Northwest Parkinson's Foundation Wellness Center
Sexually alive with Parkinson’s Disease – A new perspective on sexuality
1. A new perspective on sexuality: An ongoing journey
We are born sexual beings and we die sexual beings. What keeps on changing throughout our lives, is how we speak, express, enjoy, hate, develop, stunt, grow, and adapt our sexuality throughout our lives.
Nelson has said about sexuality:
“We are being called and given permission to become body words of love.”(1)
This statement fills me with hope: It helps me to realise that in spite of the worst possible scenario, our bodies and our being can still be vehicles of love, closeness, tenderness and passion. We can choose to adapt and change our journey although we are different.
I have been privileged to experience this with my husband in our marriage of 31 years, his journey with Parkinson’s disease, and even more, sitting with patients who had to go through:
A spinal cord injury and adjust to new ways of caressing because of his paraplegia;
A stroke that robbed the ability to walk and talk but touching with one hand remained as well as the ability to relax when the healthy side of the body was caressed;
The woman with the second mastectomy whose husband had to nurse her wound and his own anxieties and after her death, give himself permission to enjoy a new relationship after years;
the patient who struggled with ED after his radical prostatectomy and hormone treatment and decided not to take medication for ED, because their relationship has stabilised on a limited level of intimacy after her chemotherapy; for him adapting in their sexual relationship was accepting that he could still be healthy, exercise and masturbate when needed.
Others with extra-marital affairs, sexual abuse, MND, amputation, grief, depression, bipolar mood disorder, Premature ejaculation, ED, Vaginismus, Lack of desire, Anorgasmia. Everyone of these patients made their individual decisions to adapt/ not, to use medication and counselling/ or not in moving on in their lives.
In moving on, we need to remind ourselves of some basic facts:
Our biggest sex organ
Our biggest sex organ is our skin. Laura Berman reminds us:
”The right touch can be as intimate and erotic as sex itself”(2)
But to allow our erotic minds to stay alive, we need to get our most important sex organ, our brain, on our sides.
Our most important sex organ is our brain:
Parkinson’s disease is the result of Substantia Nigra Cells that stopped producing Dopamine, leading to the motor and non-motor symptoms. But the rest of the brain is still working and can help one to adjust.
Understanding and discussing the illness, accepting it and and it’s effect on sexuality, is part of accepting and moving on. It leaves one with more choices, especially if normal functioning, sexual responses and differences between men and women as well as the effect of ageing on sexual responses are taken into consideration.
2.Sexual functioning
Sexual functioning depends on the neurological, vascular and endocrine systems allowing sufficient blood supply to and from genital organs, a balanced hormonal system and a healthy emotional state. Sexual functioning is influenced by psychosocial factors, family and religious background, the sexual partner and individual factors such as self-concept and self-esteem. Sexuality can be changed by aging, life experiences (e.g. abuse) and various illnesses and their treatments.(3) (Verschuren, et al,2010)
Sexual response
Sexual response has identifiable stages – desire, arousal, climax, and resolution which are accompanied by bodily changes.
Desire occurs when we see, smell, hear or experience emotions that trigger sexual energy and sexual potential is awakened.(4)Loving sex
During sexual arousal the heart rate quickens, cheeks flush and pupils dilate.
A woman’s nipples become erect and blood flow to the genitals increase. In the woman the vagina becomes moist (vaginal lubrication), the clitoris ( which is 10-12 cm in length) fill with blood. The speed of response by the clitoris depends on whether it is stimulated directly by touch, fingers, mouth or erect penis or indirectly by touching of other erogenous zones.
Because of its position, the clitoris is not stimulated directly during intercourse, so movements of the penis on its own are often insufficient to excite the clitoris to orgasm. Additional touch by fingers or mouth (masturbation by the partner or self) may be necessary to reach orgasm.
As sexual excitement increases the vagina lengthens and distends and the colour of the vulva change from pink to dark purple. During orgasm the vagina and uterus contracts 3-15 contractions at 0.8 second intervals. Women may have multiple orgasms or experience arousal without achieving an orgasm. After orgasm, the body relaxes and the vagina and clitoris return to normal, resolution.(4)Magic of sex
A man’s response to sex starts in the brain when he is aroused by something real or imagined. (predominantly visual stimulation or conditioned experiences).
The penis becomes erect and internal and external body changes occur. A “sex flush” that may appear over his abdomen, chest, neck and face, nipple swelling and increased heart rate, breathing rate and blood pressure. A feeling of “inevitability” is experienced two to three seconds before ejaculation and a drop of fluid may form at the urethral opening of the penis prior to ejaculation.(secretions from Cowper’s gland)
Orgasm occurs with simultaneous muscle contractions and rhythmic contractions of the penis and ejaculation. Orgasm and ejaculation are two separate processes and may, or may not occur at the same time. One can occur without the other.
During resolution , the penis becomes flaccid following intercourse and the man will not get another erection for some while.
3. Ageing and sexuality
The majority of older people still find sex thrilling and energy –giving; neither heir desires or capabilities vanish. Sex may wane a little in frequency and vigour, but not in sweetness and satisfaction.(4)
In both sexes, the sexual impulse declines with age but the general pattern differs in men and women. A man’s sex drive reaches a peak in late teens and thereafter gradually diminishes. A woman’s sexual feeling reaches a maximum much later in adult life, is sustained on a plateau of responsiveness which tends to decline in her late 60s. Much research support the existence of a strong sexual urge in 70- and 80-year old women and men.(4)
Goodwill, caring, thoughtfulness, a desire to comfort and shared intimacy keep long term relationships alive and mutual respect and affection help couples to remain close.(4)
Sex and the older man
Until about the age of 50, men’s sexual responses stay stable. This is due to the testosterone levels remaining consistent through to his midlife.
Changing in sexual activity need open honest discussion to maintain a loving relationship.
· Desire levels drop according to testosterone levels
· Arousal changes – erections become more unreliable, erectile dysfunction more common; 40% chance of ED over the age of 40, 50% if over 50. ( MMAS; Feldman et al)
· Orgasms are less intense and frequent.
· Orgasms are prolonged.
· Orgasms may happen without ejaculation
· He may need days rather than hours before he is ready for intercourse. The resolution phase prolongs (5)
Coping with the changes, may need more active involvement from the partner. Changing the emphasis of sexual activity to longer and stronger foreplay, more tactile stimulation including caressing, rubbing, cuddling and the use of different sexual positions. The partner becoming more active as initiator.
Erectile dysfunction may be the indicator of other health issues, especially endothelial dysfunction, causing cardiovascular disease. Medical evaluation to rule out underlying cardiovascular disease, DM, Testosterone deficiency or a neurological disease is crucial.(5 )
Sex and the older woman
Studies show that women have a more stable sex drive than men. Women over sixty-five continue to seek out, and respond to, erotic encounters, have erotic dreams, and continue to be capable of orgasms, even multiple ones. (5)
She can however expect the following sexual- response changes:
· Decreased desire
· Arousal takes longer because vaginal blood flow and genital engorgement are reduced; vaginal lubrication is delayed and reduced in quantity.
· Reaching an orgasm takes longer due to a decrease in vaso-congestion of the clitoris and vagina, as well as decreased sensitivity.
· Decrease of breast and nipple erection.
· Orgasmic capacity is retained- even multiple orgasms are still possible.
· The number and intensity of vaginal contractions is reduced.(5)
The availability of a partner and the opportunity for regular sexual activity are the most important factors influencing sexual behaviour. Masturbation is instrumental in keeping alive an older woman’s sexuality and sexual identity, and it will keep her physiological responses in good working order (especially during widowhood).(4)
Managing changed sexual response may need more use of fantasy, openness about the kind of sexual touches that turns on and using additional lubrication or vaginal hormonal cream to prevent painful penetration and using hormonal replacement.
Use leisure time for leisurely sex, give more attention to foreplay and introduce something new like oral sex, sex toys, masturbation, new positions to increase arousal and desire.(5)
A satisfying relationship is crucial to enhance sexual responses.
4. Sexual dysfunction
Sexual dysfunction is not uncommon in the general population. It is linked to risk factors such as age, smoking, DM, CVD, other chronic diseases, menopause and ageing in the
male. It is multifactorial in chronic, neurological disease.
Sexual dysfunction in Parkinson’s Disease
Sexual dysfunction is common in PD and associated with depression and relationship dissatisfaction.
Women: 75% difficulties with arousal &orgasm
50% low sexual desire
Men: 70% erectile difficulties
40% premature ejaculation
40% delayed orgasm (6)
In the general population without health problems, estimates of sexual problems vary from 10-52% of men and 25-63% of women.(7)
5. Sexual function is interfered with by typical PD symptoms
1. Muscle rigidity, bradykinesia and clumsiness in fine motor control affect the ability to undress, touch and caress and indirectly the willingness to initiate. The slowness of movement , tremor or rigidity may interfere with practicalities of lovemaking.
Undressing your partner with PD can become a necessary but also playful part of foreplay.
A hot bath or shower before lovemaking, may lessen muscle stiffness and tiredness.
Changing roles: the woman becoming the more active initiator if the man has PD
The man spending more time to make his female partner with PD feel safe before caressing and touching.”Studies suggest that feeling safe may be the most important factor in determining whether or not a woman reaches orgasm.”(2)
2. Sexual functioning may be worse in late evenings, especially with daytime scheduling of medication.
Rescheduling night time lovemaking to mornings could overcome this problem.
If you do feel sexual attraction, even if it is at a bad time for medication, follow your desire. Additional lubrication, or extra stimulation with a vibrator may surprise both of you.
3. PD medication can lower sexual desire or can enhance desire.
It is more often the associated depression, fatigue associated with PD or relationship strain that cause a lack of libido.
Increase in desire may occur with levodopa and deep brain stimulation.
4. Tremor , dyskinesias can be enhanced during sexual arousal.
Accepting this as a compliment rather than a “put off” may bring some humour and a change in attitude.
Switching your side of the bed, may enable touching and caressing with “the better side”.
Use positions that will lessen the strain on stiff muscles (side by side)
5. Hypersalivation and sweating
Has never been a turn on!!! Shower/ brush your teeth/ suck a sweet.
6. The mask–like face may reduce the appeal for the partner. Subjectively it influence the self–image of the partner in a negative way.
Deliberately practise open eye kissing, smiling while you caress.
Try to look into your partner’s eyes while you have an orgasm.
7. Men can have problems getting and keeping an erection.
Causes: lack of dopamine/ anti-depressants/performance anxiety/ other physical causes.
8. Treatment of ED:
Sildenafil 85% efficacy in PD patients with depression
Tadalafil & Vardenafil are also effective.
It enhance the response to sexual stimulation. The partner remains crucial.
Sildenafil should be taken 1 hour before intended sexual activity.
Often the larger dose needs to be used.
A longer time of onset is needed because of slowed gastrointestinal mobility.
It can be used once / twice per week.
9. Contra –indications for PDE5I
Nitrates
Retinitis pigmentosa
History of priapism (prolonged erection)
Hypotension
Coronary artery disease
10. Non-responders to oral treatment
Intrapenile injections of Alprostadil
Taught under medical supervision
Vacuum-device : rarely adopted by elderly
Difficulty placing / removing bands, bruises
11. Ejaculation problems with PD
Rapid ejaculation: SSRI like Sertraline/ Paroxetine
Rapid ejaculation linked to ED: Sildenafil may help both
Delayed ejaculation: ejaculation is a reflex
Increased stimulation with a vibrator
Share this information with the partner
Decrease marital tension , embarrassment
12. Women may experience vaginal dryness
Use additional lubrication to prevent pain with penetration.
Give more caressing/ foreplay.
Use a vibrator for clitoral stimulation to ensure an orgasm.
13. Women may struggle with urinary urgency and incontinence
Empty the bladder before lovemaking
14. PD symptoms worsen at night / sleeping apart reduces opportunities for spontaneous sex
Talk frankly and openly about sexual needs. Communication is the best remedy for all relationship problems.
Consider outercourse if intercourse is not an option.
15. Depression and the use of anti-depressants in PD are common.
Both are associated with higher frequency of Sexual dysfunction.
PDE5I are recommended for arousal problems( ED or lack of lubrication)
16. High prevalence of Testosterone deficiency in elderly PD patients
20-25% of males over 60 years
Depression, fatigue, decreased libido, ED, decreased work performance
Respond to testosterone treatment.
Motor and non-motor symptoms of PD improved with daily transdermal T-patch.
17. Hypersexuality in PD
Rare side-effect of Dopamine agonists, Levodopa, Deep brain stimulation.
Discuss adjustment of dosage / medication with your neurologist.
18. Issues for the person who has PD
Besides the effect of the condition and the medications, sexual problems may develop because of a negative body image, reduced self-esteem, depression and grief, anger and stress.
Open communication and understanding are
Can you ride a bike? Then you're a marvel
Copied from The Northwest Parkinson’s Foundation Weekly News Update
A runner-up in the Wellcome science writing prize considers the extraordinary human ability to cycle
Catherine Hess
www.guardian.co.uk - Most of us remember our first proper bike. It's a rite of passage, symbolising our transition from "little" to "big" kid. Even more exhilarating is the day we take our first ride without stabilisers. What most of us don't realise is just how complex the art of riding a bicycle actually is. So complex, in fact, that researchers are just beginning to investigate how on earth we manage to propel ourselves, constantly rocking back and forth with the movement of our legs, on two skinny wheels; simultaneously navigating movement in multiple planes while trying to avoid countless obstacles.
Most extraordinary is what the act of riding a bicycle can tell us about the human brain. In 2010 researchers from the Netherlands published a dramatic case study in the New England Journal of Medicine. Medical researchers at Radboud University in Nijmegen examined patients afflicted with Parkinson's disease, a neurological disorder that results in tremors and involuntary muscle movements. In severe cases, Parkinson's affects balance, co-ordination and limb control and can leave patients unable to walk or carry out basic tasks.
One such patient, a 58-year-old man, suffered from what researchers call "gait freezing". He was incapable of walking to the extent that he required visual guides to help him move one foot in front of the other and was unable to turn while walking. After a few steps the patient would lose his balance and would require his wheelchair.
Astonishingly, however, this patient could still ride his bicycle. Flawlessly. Video evidence, submitted with the published case study (and now available on YouTube), shows the patient, with severe tremors in his arms, shuffling slowly and unsurely down a hallway while being guided by another individual. After several steps he begins to stumble forward until he falls to the ground.
In a second video he is seen riding a bicycle with perfect movement and balance, the marked tremors in his arms are gone and he pedals at a consistent pace and with perfect balance and co-ordination. He cycles away from the camera, turns around and cycles back, slowing, stopping and dismounting perfectly. Once dismounted, however, he is again incapable of walking.
This phenomenon is called kinesia paradoxica. While the mechanisms involved are still not understood, the knowledge is invaluable. It may lead to new forms of physical therapy and exercise for people with Parkinson's disease or other neurological disorders that affect movement, co-ordination or balance.
Currently, the "bicycle sign" is being suggested as an effective and inexpensive way to differentiate between Parkinson's and the rarer atypical Parkinson's. One way in which the two diseases differ is in the ability or loss of ability to ride a bicycle. Individuals with Parkinson's who were able to ride a bicycle before the onset of symptoms retain the ability to cycle. Those with atypical Parkinson's do not.
But how is it possible for a man to ride a bicycle when he is essentially wheelchair-bound? More importantly, how does anyone adapt to the sensory whirlwind that is bicycle riding? Research teams at the University of California, Davis in America and the University of Delft, Netherlands, are trying to find out. What they have discovered is surprising.
While we take it for granted that riding a bicycle is as easy as, well, riding a bicycle, it turns out that it is anything but. Led by Professors Mont Hubbard and Ron Hess, American researchers are attempting to model human-bicycle interactions in a similar manner to pilot-aeroplane or motorist-car interactions. However, there are many more physical and neurological processes involved in riding a bicycle than driving a car.
Riding a bicycle involves continuous use of all the human's primary sensory capabilities, visual, vestibular [balance] and proprioceptive [the awareness of one's body and limb positioning]," says Hess. "The latter involves sensors in the arms providing information about steering inputs. What is more interesting though is the ability of the trained cyclist to ride a bicycle 'hands-free'."
Recent research at the University of California, Davis has demonstrated how subtle body leaning by the cyclist enables this behaviour.
"Imagine trying this control technique in an automobile or an airplane," says Hess.
The goal of this research is to understand how the cyclist interacts with both the environment and the bicycle and to develop bicycles that maximise performance, whether the rider is a Tour de France cyclist or a disabled cyclist needing greater stability or control.
What is clear from research into both the human brain and the bicycle is that despite the bicycle's simplicity we have yet to fully understand how it is that we manage to control it, and what is happening in the brain when we do. Our first wobbly bicycle ride, then, is a more remarkable event than we ever imagined
How pedal power could ease Parkinson's: Cycling can improve connections in brain regions linked to the disease
Copied from The Northwest Parkinson’s Foundation Weekly News Update
Scans revealed pedalling boosted connections between brain regions linked to movement
Fiona Macrae
www.dailymail.co.uk - Cycling could help ease the symptoms of Parkinson’s disease, scientists believe.
The exercise improved connections between brain regions linked to the disease and boosted patients’ co-ordination and balance, research has shown.
Exercising on a bike is ‘an effective, low-cost therapy for the disease’, one researcher said.
Some 120,000 Britons have Parkinson’s. Symptoms include tremors, speech problems and a gradual slowing down of the body.
As the disease progresses, speech and balance can be affected and some sufferers become wheelchair-bound.
High-profile patients include Michael J Fox, who was just 30 when he was diagnosed with the condition, and Muhammad Ali.
US neuroscientist Jay Alberts began the research after noticing improvements in his companion, a Parkinson’s patient, after a long-distance tandem ride across Iowa.
Dr Alberts, of the Cleveland Clinic Lerner Research Institute, Ohio, said: ‘The finding was serendipitous. I was pedalling faster, which forced her to pedal faster.
'She had improvements in her upper extremity function, so we started to look at the possible mechanism behind this improved function.’
In the study, he carried out a series of scans on the brains of 26 Parkinson’s patients who used exercise bikes three times a week for two months.
Some pedalled at their own pace, while others undertook ‘forced-rate’ cycling, in which they were made to pedal faster by motors fitted to their bikes.
The scans revealed pedalling, particularly vigorous pedalling, boosted connections between brain regions linked to movement, the annual meeting of the Radiological Society of North America in Chicago heard.
Researcher Chintan Shah, also from the Cleveland Clinic, said: ‘The results show that forced-rate bicycle exercise is an effective, low-cost therapy for Parkinson’s disease.’
The scientists are now studying how patients fare with exercise bikes in their homes. They also want to see whether other forms of exercise such as swimming and rowing have similar benefits.
The charity Parkinson’s UK welcomed the research, saying the balance and co-ordination can be badly damaged as the disease progresses.
However, it also cautioned that not all patients will be capable of exercising intensely.
Dr Kieran Breen, the charity’s director of research, said: ‘While it is too soon to encourage people with Parkinson’s to get on their bikes three times a week on the basis of this study, we do know that exercise can be beneficial.
‘A regular exercise routine can help those with the condition to not only improve their general fitness but can also help to improve movement and balance as well as other symptoms of the condition such as anxiety and depression.’
"Key to Staying Active -- Stay Active!"
Copied from Northwest Parkinson’s Foundation Weekly Newsletter
PR Newswire - "Do what you can until you can't. Then do something else," Parkinson's disease patient advises.
After 12 years with Parkinson's disease (PD), 57-year old Bill Schmalfeldt has this advice for newly-diagnosed Parkinson's patients.
For Schmalfeldt, that means writing. By early 2011, the progressive neurological disorder had affected his voice. Since writing and recording podcasts for the Clinical Center at the National Institutes of Health in Bethesda, Md., was the biggest part of his job, Schmalfeldt said he felt he had no other choice than to seek early retirement.
"I have trouble walking, I have trouble talking, but I can still write pretty well," Schmalfeldt said. "If you can't do what you did, you do what you can do."
In addition with maintaining a news/opinion website, "Turning Over the Rocks", Schmalfeldt has penned three books on the topic of living with PD. "Put On Your Parky Face" begins with the challenge of getting diagnosed with what Schmalfeldt called "an old guy's disease at the tender age of 45" at a National Parkinson Foundation (NPF) clinic in Miami on Jan. 31, 2000. Seven years later, while working for the NIH, Schmalfeldt volunteered for a clinical trial at the Vanderbilt University Medical Center in Nashville.
"The idea was to see whether or not it was safe to perform deep brain stimulation done earlier in the course of PD and whether the operation could be tolerated by the patient," Schmalfeldt said. His book tells the story of his involvement in the experiment and ends the day Schmalfeldt retired, March 13, 2011. "Seemed to be a good place to wrap things up," he said. But he still had two books lingering in his dopamine-deprived brain.
"You Never Miss the Dopamine Until the Brain Runs Dry, Volumes 1 and 2," are a series of humorous essays about such things as freezing of gait, how to react to the way people react to a disabled person and other bits of Parky Wisdom, Schmalfeldt calls it.
"The day will come soon enough where you can't do what you love anymore," Schmalfeldt said. "Until then, do what you can. Stay active."
Nearly a million Americans have Parkinson's, according to the NPF.
Schmalfeldt's books are available on Amazon.com.
Lifestyle Changes
Dear Reader,
William here, I want to tell you John Pepper's story as he related it to me. John's story is a story of passion and excitement that I want to share with everyone, especially those that suffer from Parkinson's disease.
In 2002, John wrote his first book – “There IS LIFE After Parkinson’s Disease” - but doctors complained that the title claimed that his Parkinson's disease was now in the past, and he was therefore cured, even though he says he is not cured – so he changed the name of the second edition to - “There IS LIFE After Being Diagnosed With Parkinson’s Disease”.
In his book, he claimed that:
“Nobody would ever know he still has Parkinson’s Disease”.
To put this claim to the test, John consulted another eminent neurologist, who said that:
“You do not have Parkinson’s Disease. There is no cure for Parkinson's disease, therefore you never had Parkinson's disease”
This neurologist did not carry out a proper clinical test on John. He mainly based his opinion on John’s outward appearance, which certainly did not look as if he had ever had Parkinson's disease. But, as he states quite clearly in his book, he still has many of the symptoms of Parkinson's disease, but because he has been able to overcome most of the movement problems, he is now able to live a perfectly normal life, providing he maintains his new life style regimen.
After selling 700 books, without any advertising, other than by word of mouth, he decided to change the name of his book to – “Reverse Parkinson’s Disease” – because of the success his story has had with patients, who have read his book and taken the bold steps he has recommended, in order to change their life style.
Why not find out what those lifestyle changes are?
All of John’s recommendations are common-sense solutions to general health problems, and cannot do any harm to anyone, unless their doctors have advised them not to do any meaningful exercise.
If John’s recommendations are all common sense, then why don’t more doctors recommend that Parkinson's disease patients take his advice?
That is a good question!
Do any of John’s recommendations get used for the treatment of other health problems?
Yes! They do!
Speech Therapists use some of these solutions and Cardiologists use others, to treat people with heart problems! Business people use other solutions to improve their business skills!
Why don’t Neurologists routinely recommend these solutions to
their Parkinson's disease patients?
The only answer John can come up with, as a layman, is that only a Parkinson's disease patient knows what he/she is capable of doing.
Parkinson's disease is a movement disorder, and part of his regimen involves strenuous exercise, and who would think that that would be a possible solution?
What type of strenuous exercise is John recommending?
You will have to read his book to find out how he came to the conclusion that walking was the single best exercise to do for Pd. He also does other exercises for strengthening his core muscles, but the answer to this question has to be put into a routine that most Parkinson's disease patients will be able to follow, without injuring themselves.
John has been there! He knows what is possible for a dedicated
‘Couch Potato’ like him to do!
John also knows that unless the Neurologist insists on his patient carrying out these life style changes, or the patient knows for certain that other patients have successfully done it, then the patient will never commit to this routine. It is much easier to take pills and accept what the future has to offer!
Why does John not claim to be cured?
Because he is not cured! If he stops his routine, due to other health problems, of which he has several, then his Parkinson's disease starts to deteriorate again. If ever he stops exercising, or whenever he got clever and stopped taking his medication, during those ten years after being diagnosed, then his condition got appreciably worse.
Why does John no longer take
any Parkinson's disease medication?
John’s Parkinson's disease is at the stage where medication is no longer needed, providing that he continues with his new lifestyle regimen.
Thank you for reading this story,
William Ainslie (John's Personal Trainer)
More about Sleep
My name is John Pepper. I was diagnosed with Parkinson’s disease in 1992.
Insomnia is a very common symptom of Parkinson’s disease. It has a very real affect on patient’s lives, which can prove to be very difficult to treat!
Why is insomnia so difficult to treat?
Medication is the obvious route to use, when faced with the inability to sleep! The problem that I faced was that my body became accustomed to whatever type of sleeping tablet I took, with the result that I had to continually increase my dosage, in order to be able to sleep. That was no good for anybody. There was also the problem of possible addiction, which I did not want or need.
I did find that there are some off-the-shelf medications that worked, but I was not happy about taking any regular medication for sleeping, because all medication is toxic, and the body has to cope with enough problems without any unnecessary medication.
I found that when I cut out any daytime ‘dozing’ or ‘cat-napping’, my night time sleeping became a lot better. I have now got to the stage, where I get five to six hours a night, without any medication, and that appears to be enough for me.
I have to avoid watching TV during the daytime, as that sends me to sleep very easily. I also have to avoid anything else, which causes me to fall asleep.
I did find that if I read a book, during the night, when I was unable to sleep, I often was able to go back to sleep again. I organised my bedside light to be positioned above my head, facing away from the other side of the double-bed. I did the same for my wife’s light. In that way, I did not disturb her, when I read during the night.
I found that walking also helps me to sleep better. Walking also helps in other ways with the progression of Pd.
Why not get a copy of my book, ‘Reverse Parkinson’s Disease!’, and see what other methods I used to overcome movement and other problems?