Mar 17 - Dr. Atiya Kuan, Board Certified MD in Sleep Medicine, talks to us about PWP (People with Parkinson's) and sleep issues.
Apr 21 - Dr. Fen Li Chang gives an update on Parkinson's issues since 2000.
May 19 - Dr. Heidi Musgrave talks on Depression and Dementia.
Jun 16 - Disasters and Disabilities. This program is rescheduled from January. A panel from the Red Cross, Police, Fire, and other emergency agencies will present how PWP can handle
emergencies.
Editor’s Note:
The caring and sharing sessions have proved to be very popular, giving us the highest numbers in attendance compared to other meetings. Our support group has found this to be a valuable experience in understanding this thing that we all have found living with us, called Parkinson’s.
The following information is vague with the intention to protect the privacy of the person who has shared and we want members to know that what they share with the group is confidential.
We want to acknowledge the willingness of people in each group to share, even if it was the first time meeting the other members. There is something about sharing with others who have the same challenges in life, that make people open up and share things they might have never shared. This is what we are all about. If you have never attended a caring and sharing meeting, watch the newsletter to make sure you catch the next one. You’ll be glad that you did.
February Meeting
There were 27 or 28 people with Parkinson’s in the caring and sharing group. 17 people participated in the discussion. We had a large number of first-time visitors, most of which were active in the discussion.
There was a wide range of topics, several of which elicited further sharing from the group. Issues with medications and with physicians were two of the items that drew a large response. There was some focus on ambulation issues such as freezing and balance.
The subject of attention from doctors had several people asking about or sharing their own experiences with their medications.
There was a variety of medication discussion with feedback requested and suggestions given by other group members. There appeared to be some further discussion in smaller groups after the meeting ended.
The Caregivers gathered for the Roundtable in February. The discussion covered a wide range of topics which were interesting and informative.
We welcomed several new caregivers and friends to the group. Those present who have been involved with PD for a long period of time were able to be of some help in answering questions and concerns.
Everyone was sincerely concerned for each other’s problems and we hope everyone feels comfortable in asking any of us for help and support.
A NOTE FROM DAN SPANGLER
Turnstone’s Casino Night is fast approaching. It’s March 12, 2011, 7:00 pm – 11:30 pm. at Turnstone, 3320 N. Clinton, Ft. Wayne. There will be fun and there are games for the whole family. Food too! Tickets are $25 in advance, $30 at the door.
Turnstone’s Corvette Raffle is coming soon. Information to follow in future newsletters.
The Annual Golf Outing is September, 8, 2011. More on that to follow also.
Turnstone’s disAbilities EXPO is set for Saturday, May 7, 2011, 10:00 AM – 4:00 PM at the War Memorial Coliseum in Ft, Wayne. There will be lots of display booths of interest, speakers, a fashion show, adaptive sports demos, plus much more. Also, your support group will have a booth. Contact Jennifer Neher (260-483-2100, ext. 263) and become a volunteer for the EXPO.
TURNSTONE IS A SPECIAL PLACE for people with Parkinson’s. I encourage you to support these and other Turnstone fundraising activities throughout the year. Their support for us is unsurpassed: Rooms for exercise, and support group meetings; use of the fitness center and aquatics program, and all of this at a very nominal cost. What a bargain! Let’s all be supportive.
CAREGIVERS' CORNER
by Ed Gatke
Preventing Caregiver Burnout
TIPS AND SUPPORT FOR FAMILY CAREGIVERS
Outside the world of paid work, the people most prone to burnout are caregivers—people who devote themselves to the unpaid care of chronically ill or disabled family members. The demands of caregiving can be overwhelming, especially if you feel you have little control over the situation or that you're in over your head.
If you let the stress of caregiving progress to burnout, it can damage both your physical and mental health. So if you are caring for family member, it's essential that you get the support you need. The good news is that you're not alone. Help for caregivers is available.
Family Caregivers: What you should know about burnout
Providing care for a family member in need is a centuries-old act of kindness, love, and loyalty. And as life expectancies increase and medical treatments advance, more and more of us will participate in the caregiving process, either as the caregiver, the recipient of care, or possibly both.
Unfortunately, caregiving can take a heavy toll if you don't get adequate support. Caregiving involves many stressors: Changes in the family dynamic, household disruption, financial pressures, and the sheer amount of work involved. The rewards of caregiving — if they come at all — are intangible and far off, and often there is little or no hope for a happy outcome.
As the stress piles up, frustration and despair take hold and burnout becomes a very real danger. But you can prevent caregiver burnout by following a few essential guidelines:
· Learn as much as you can about Parkinson's Disease and about how to be a caregiver as you can. The more you know, the more effective you will be, and the better you'll feel about your efforts.
· Know your limits. Be realistic about how much of your time and yourself you can give. Set clear limits, and communicate those limits to doctors, family members, and other people involved.
Accept your feelings. Caregiving can trigger a host of difficult emotions, including anger, fear, resentment, guilt, helplessness, and grief. As long as you don't compromise the well-being of the care receiver, allow yourself to feel what you feel.
· Confide in others. Talk to people about what you feel; don't keep your emotions bottled up. Caregiver support groups are invaluable, but trusted friends and family members can help too. You may also benefit from seeing a therapist or counselor.
Warning signs of caregiver burnout
Once you burn out, caregiving is no longer a healthy option for either you or the person you're caring for. So it's important to watch for the warning signs of caregiver burnout and take action right away when you recognize the problem.
Common warning signs of caregiver burnout:
· You have much less energy than you used to
· It seems like you catch every cold or flu that's going around
· You're constantly exhausted, even after sleeping or taking a break
· You neglect your own needs, either because you're too busy or you don't care anymore
· Your life revolves around caregiving, but it gives you little satisfaction
· You have trouble relaxing, even when help is available
· You're increasingly impatient and irritable with the person you are caring for
· You feel overwhelmed, helpless, and hopeless
10 Tips for Family Caregivers
· Caregiving is your job and respite is your earned right. Reward yourself with respite breaks often.
· Watch out for signs of depression, and don't delay in getting professional help when you need it.
· When people offer to help, accept the offer and suggest specific things they can do.
· Educate yourself about your loved one's condition and how to communicate effectively with doctors.
· There is a difference between caring and doing. Be open to technologies and ideas that promote your loved one's independence.
· Trust your instincts. Most of the time they'll lead you in the right direction. Caregivers often do a lot of lifting, pushing, and pulling. Be good to your back. Grieve for your losses, and then allow yourself to dream new dreams.
· Seek support from other caregivers. There is great strength in knowing you are not alone.
· Stand up for your rights as a caregiver and a citizen.
Source: National Family Caregiver's Association
TIPS TO MAKE YOUR LIFE BETTER
by Ed Gatke
As many as 70% of people with Parkinson’s experience sleep problems during the course of their disease. This negatively impacts daytime functioning and quality of life for patients and their caregivers.
The first step in decreasing sleep disturbances is recognizing the problem and reporting it to your doctor. With further evaluation, many of the sleep disturbances associated with PD can be effectively treated. These include:
• Difficulty sleeping through the night. This typically originates in the “wearing off” of medications and the recurrence of PD symptoms. Readjusting medications my alleviate this.
• Excessive daytime sleepiness, with frequent dozing or napping. Patients find it almost impossible to stay awake during sedentary activities like reading or watching television; and, in severe cases, during active tasks like driving. Napping may lead to an inability to sleep at night, further complicating the problem.
Daytime sleepiness can be the result of a nighttime sleep problem, such as sleep apnea -- an interruption in breathing that prevents a restful sleep and reduces oxygen in the blood. This should be evaluated by a sleep expert. Other culprits may be Parkinson’s (e.g. pramipexole (Mirapex) and Ropinerole (Requip), carbidopa/levodopa (Sinemet) and non PD medications. Adjusting dosages, switching to other medications, or using mild stimulants, such as caffeine or modafinil (Provigil), may improve sleep patterns.
• REM sleep disorder (RBD), part of Parkinson’s disease itself, causes people to unknowingly “act out” their dreams in their sleep, kicking, hitting or choking their spouse. There are effective treatments for RBD if it is recognized.
• Visual hallucinations while awake. These usually are a side effect of medications used to treat PD. Patients experiencing hallucinations have a reduction in dream/REM sleep during the night. The use of “atypical” antipsychotic medications, clozapine and quetiapine may help.
Adapted from an article by Cynthia L. Comella, MD, ABSM. Professor, Department of Neurological Sciences, RUSH Medical College, Chicago.
Dr. Comella was one of the presenters at the Chapter’s 2008 Symposium in Indianapolis.
Three Elderly Ladies
Three elderly ladies were discussing the travails of being old. One said, "Sometimes I catch myself with a jar of Mayonnaise in front of the refrigerator, and can't remember if I need to put it away or start making a sandwich."
The second lady chimed in, "Yes, sometimes I find myself on the landing half way up the stairs, and can't remember if I was on my way up or down."
The third lady responded, "Well, I'm certainly glad I don't have that kind of problem, knock on wood." She rapped her knuckles on top of the table and said, "Oh, that must be the door. I'll get it."
Improving Sleep Hygiene
• Go to bed at the same time each night.
• Set wake up time for the same time each morning regardless of sleep difficulty the previous night.
• Follow the “20 minute” rule: When unable to sleep in bed for 20 minutes, get up and do a “boring” activity for 20 minutes, then return to bed. If unable to fall asleep in 20 minutes, repeat the process.
• Avoid eating heavy evening meals.
• Avoid caffeine after noon.
• Avoid alcohol in the evening.
• Write down “worry” issues to avoid ruminating at night.
• Exercise early in the day, not in the evening.
• Get plenty of light during the day.
• Limit napping to 20-30 minutes, 1 to 2 times per day.
• Do not nap in the evening.
Taken from the PAACI website
Sleeping Problems in Parkinson’s Disease
Presented by Xabier Beristain, M.D.at the 2010 PAACI symposium
Dr. Beristain began b citing a statement made by James Parkinson in 1817, noting sleep trouble with Parkinson’s, “Sleep becomes more disturbed; the tremulous motions of the limbs occur during the sleep and augment until they awaken the patient. (in the final stages of the disease there is) constant sleepiness, with slight delirium and other marks of extreme exhaustion.”
How common is sleep disturbance in PD?
Two thirds of Parkinson’s Patients will have sleep trouble. Whereas, the incidence is 46% of diabetics, and 33% of healthy individuals (based on a study of 245 patients). Early awakening and sleep fragmentation (awakening and reawakening during the night) are the most common complaints. Problems with sleep become more apparent with advancing Parkinson’s Disease. The frequency of sleep disturbances in PD is likely underestimated.
Causes of sleep impairment in PD.
Primary causes are degeneration of brain structures regulating sleep/wakefulness. Secondary causes are motor involvement, autonomic problems, depression and anxiety. Tertiary causes are effects of medications. Age related diseases may include sleep apnea, restless leg syndrome, heart and lung disease
Types of sleep disturbance in PD.
Insomnia: sleep-onset insomnia is not the most typical type of insomnia in PD.
Excessive daytime sleepiness: the incidence could be as high as 44% according to one study and might be related with more severe disease and a likelihood of cognitive decline. Medication, especially dopamine agonists may play significant roles, and “sleep-attacks” have been described.
Parasomnia: REM behavior disorder enacting dreams while asleep. The presence of this finding before the onset of PD may predict PD in the future in up to 50% of males. REM behavior disorder can also be seen in Lewy Body disease and multisystem atrophy. Periodic limb movements of sleep are more common among PD patients and can disrupt sleep.
Management of sleep in PD
You need to examine sleep hygiene/habits. Consider associated sleep apnea, nocturnal urination, pain and the effects of medication. L-dopa at a low dose helps sleep, but at a high dose has an awakening effect. The medications modafinil/armodafinil may help excessive daytime sleepiness. Lonazepam is used for Restless Legs. You may need bladder medications for nocturnal urination issues that disturb sleep. Clonazepam is used for REM behavior disorder. There are also sleeping aids over the counter and by prescription.
Dr. Beristain concluded by saying that the management of sleep disturbances can be a challenging one and will require multiple changes in different areas, including time and amount of your PD medications, good sleep hygiene, correcting associated problems that my include depression, pain, and sleep apnea, and the judicious use of medication to alleviate insomnia, excessive sleepiness or abnormal sleep behaviors.
TEN COMMANDMENTS OF GOOD SLEEP
A good night's sleep is essential for effective functioning during the day. The following general guidelines are suggested to get a restful sleep.
I. THOU SHALT NOT STAY IN BED TOO LONG. (Most insomniacs spend too much time in bed waiting for sleep)
II. THOU SHALT AVOID DAYTIME NAPS. (Daytime naps usually cause poor sleep at night)
III. THOU SHALT MAINTAIN THE CIRCADIAN CYCLE. (Waking up at the same time every day helps in maintenance of circadian rhythm)
IV. THOU SHALT AVOID STIMULANTS AFTER LUNCH. (the stimulant effect of caffeine and colas may remain for hours)
V. THOU SHALT NOT TAKE A TODDY BEFORE BEDTIME. (Alcohol helps in sleep onset but causes frequent awakenings and reduces the amount of total sleep time)
VI. THOU SHALT NOT GO TO BED HUNGRY. (Tryptophan-containing foods, like milk or tuna, may be helpful)
VII. THOU SHALT NOT SMOKE. (Cigarette smokers and people trying to quit have poor sleep)
VIII. THOU SHALT EXERCISE REGULARLY (Vigorous exercise now and then may cause insomnia)
IX. THOU SHALT KEEP THE BEDROOM AT A COMFORTABLE TEMPERATURE (Extremes of temperature disturb sleep)
X. THOU SHALT KEEP THE NOISE DOWN.(Snoring spouses and airplanes disturb sleep.)
From the Neurological Institute
