Jeremy Otte, our director of outreach & education, and board member Ron Mohorek were on the The Morning Blend on TMJ4 this morning talking about Parkinson’s and our upcoming Symposium!
Thanks to Amada Senior Care for including us!
Joe & Patty Schlicher presented with Tulip Award
Four years ago, Joe & Patty Schlicher took over a community golf outing that had been held for many years to support WPA. Together with their friends and family, they have held the “Movers & Shakers Classic” golf outing in Elkhorn as a way to raise awareness and money for WPA.
Joe & Patty’s support is evident through their work year-round, not just at the golf outing. They were instrumental in starting a Rock Steady Boxing class at the Geneva Lakes Family YMCA, and they started a support group for people with PD and caregivers in conjunction with the Boxing class. Patty also joined WPA’s newly formed Caregiver Committee to help us expand our programming.
Joe & Patty were surprised with the Tulip Award at the Movers & Shakers Classic on June 2. The award recognizes a worthy individual, couple, or family who have shown dedication and a commitment toward helping people with PD and educating the public about PD.
We are so grateful to Joe & Patty for the work they have done to promote hope, community, support, and resources for people with PD and their loved ones!
8 Early Parkinson’s Disease Symptoms That Are Too Easy to Miss
This movement disorder is more treatable when caught early, but Parkinson’s disease symptoms can appear quite differently from one person to another. Talk to your doctor if you’re worried about any of these signs.
Changed handwriting
If your handwriting starts to go from big and loopy to small and cramped, this could be one of the earliest Parkinson’s disease symptoms. “Teachers with Parkinson’s will notice students complaining that they can’t read their handwriting when they write on the blackboard,” says Deborah Hall, MD, a neurologist at Rush University Medical Center in Chicago. Look for letters getting smaller and words crowding together. Many patients have slower movement and trouble with repetitive tasks, like handwriting.
Reduced sense of smell
If you’re having trouble smelling pungent foods or no longer pick up your favorite scents, see a doctor. It’s not the most common symptom of Parkinson’s, but Dr. Hall says patients who suffer a loss of smell report it being the earliest sign they experience. The link between reduced sense of smell and Parkinson’s isn’t clear, but one theory is that the clumps of the protein alpha-synuclein, found in the brains of all Parkinson’s patients, may form in the part of the brain responsible for smell before migrating to other areas and affecting motor function.
Trouble sleeping
If you were once a peaceful sleeper, but now toss and turn, flail your limbs, or even fall out of bed, those sleep problems could be Parkinson’s disease symptoms. It’s normal to have an occasional restless night, but talk to your doctor if you or your partner notices extra movement when you’re in a deep sleep, or if you start sleep-talking. More research is needed to discover why disturbed sleep and Parkinson’s are related, but one theory is that the degeneration of specific regions of the brain stem that can cause disordered sleeping may play a role in other Parkinson’s disease symptoms.
Constipation
If you’re not moving your bowels every day, or are increasingly straining, this can be an early sign of Parkinson’s. The disease alters the body’s autonomic nervous system, which controls processes like digestion and bowel function. Constipation on its own isn’t unusual, but if you’re experiencing other symptoms like difficulty sleeping and trouble moving or walking, talk to your doctor.
Depression
Much has been made of the link between the late comedian Robin Williams’ Parkinson’s diagnosis and ongoing battle with depression. Sometimes patients can develop depression after learning they have Parkinson’s, but it’s also common for people to be depressed years before they start to exhibit physical symptoms, says Michele Tagliati, MD, director of the Movement Disorders Program at Cedars-Sinai Medical Center in California. “Parkinson’s is characterized as a movement disorder because of a lack of dopamine in the brain, but there are also low levels of other neurotransmitters like serotonin, which are intimately related to depression,” he says. Parkinson’s patients who are depressed tend to feel apathetic and generally disinterested in things they used to enjoy, compared to feeling intensely sad or helpless, as is common in primary depression. “They lose pleasure in the simple things of life, like waking up in the morning and buying the paper,” says Dr. Tagliati. Treatment for depression includes counseling, antidepressant medication, and in the most extreme cases, electric shock therapy.
Tremors or shaking when relaxed
Shaking can be normal after lots of exercise or if you’re anxious, or as a side effect of some medications. But a slight shake in your finger, thumb, hand, chin, lip, or limbs when your body is at rest and your muscles are relaxed could signal Parkinson’s disease symptoms, according to the National Parkinson Foundation. About 70 percent of people with the disease experience a resting tremor, and it can become more noticeable during stress or excitement. These are the most common symptom and often tip people off to the disease, but when Parkinson’s patients think back they realize they experienced loss of smell, disturbed sleep, or anxiety before the tremors began.
Stiffness and slowed movements
Watch for an abnormal stiffness in your joints along with muscle weakness that doesn’t go away and makes everyday tasks like walking, teeth brushing, buttoning shirts, or cutting food difficult. If you no longer swing your arms when walking, your feet feel “stuck to the floor” (causing you to hesitate before taking a step), or people comment that you look stiff when you haven’t been injured, the National Parkinson Foundation suggests seeing a doctor.
Softer voice, or masked face
Doctors say that a softer voice or masked, expressionless face is a common sign of the disease. Some patients with Parkinson’s disease symptoms may also talk softer without noticing or have excessively fast speech or rapid stammering. Parkinson’s causes disruption of movement, including facial muscles.
New Medicare Cards
When you’re enrolled in Medicare, you’ll get your red, white, and blue Medicare card in the mail. If you’re automatically enrolled, you’ll get your red, white, and blue Medicare card in the mail 3 months before your 65th birthday or your 25th month of getting disability benefits. Your Medicare card shows that you have Medicare health insurance. It shows whether you have Part A (Hospital Insurance), Part B (Medical Insurance) or both, and it shows the date your coverage starts.
Be sure to carry your card with you when you’re away from home. Let your doctor, hospital, or other health care provider see your card when you need hospital, medical or other health services.
New Medicare cards are coming
Medicare is mailing new Medicare cards to all people with Medicare now. Find out more about when your card will mail.
View an example of the current card.
10 things to know about your new Medicare card
- Your new card will automatically come to you. You don’t need to do anything as long as your address is up to date. If you need to update your address, visit your mySocial Security account.
- Your new card will have a new Medicare Number that’s unique to you, instead of your Social Security Number. This will help to protect your identity.
- Your Medicare coverage and benefits will stay the same.
- Mailing takes time. Your card may arrive at a different time than your friend’s or neighbor’s.
- Your new card is paper, which is easier for many providers to use and copy.
- Once you get your new Medicare card, destroy your old Medicare card and start using your new card right away.
- If you’re in a Medicare Advantage Plan (like an HMO or PPO), your Medicare Advantage Plan ID card is your main card for Medicare—you should still keep and use it whenever you need care. And, if you have a Medicare drug plan, be sure to keep that card as well. Even if you use one of these other cards, you also may be asked to show your new Medicare card, so keep it with you.
- Doctors, other health care providers and facilities know it’s coming and will ask for your new Medicare card when you need care, so carry it with you.
- Only give your new Medicare Number to doctors, pharmacists, other health care providers, your insurers, or people you trust to work with Medicare on your behalf.
- If you forget your new card, you, your doctor or other health care provider may be able to look up your Medicare Number online.
For Caregivers: Dealing with Caregiver Guilt
Caregivers often carry around undeserved guilt, believing that they aren’t doing enough for their loved ones. This guilt can make the caregiving role even more stressful than it already is. One might ask why a caregiver feels guilty when they’re doing such a courageous job. Here are some reasons:
- Resentment for personal time lost – It’s normal to feel like you’re missing something when so much of your time is taken up taking care of someone else. The caregiver thinks that they shouldn’t feel this way.
- Unresolved issues – Many times, there are issues stemming from childhood or arguments in the past that hinder the caregiving process. Many caregivers feel guilty about this.
- Comparing yourself to others – Some caregivers will look at another caregiver and think that they could never accomplish what that other person did.
- Knowing placement is inevitable – There can be tremendous guilt involved when a caregiver has to place their loved one in assisted living or a nursing home.
- Dealing with your own issues – You may be dealing with personal or health problems yourself, which takes away from your caregiving responsibilities.
Ways to Cope with Caregiver Guilt
- Acknowledge the guilt – It’s normal to feel guilt from time to time. Once it’s recognized, we are better able to deal with it.
- Look at the bigger picture – Although you may be stressed with a particular situation now, it will not last forever. Look at the sacrifices you make for your loved one and realize that you are doing a great job.
- Accept that you’re human and have flaws – All of us make mistakes from time to time. Some of us may be good at the physical aspects of caregiving, while others may be better able to handle the emotional toll. Recognize your strengths and don’t focus on the negative.
- Make time for yourself – This is easier said than done, but it’s a must! Even if it’s just an hour or two a week, go out and have coffee with a friend, catch a movie, attend a caregiver support group, or just curl up and read a book. Taking time out helps you put your situation in better perspective.
- Know that you are making the best decision for you and your loved one at that time – This can be hard to accept, especially if you’ve made a promise to a loved on in the past that you can no longer keep. A change in a situation may force you to break that promise, but realize that the promise was made under different circumstances. You are making the best decision with new circumstances.
- Deal with unresolved issues or accept them for what they are – Many times, we may be taking care of someone who we resent, for many reasons. You can choose to try and resolve those feelings from the past to allow you to care for that person fairly. You can also choose to allow someone else to care for that person because you know you cannot rightfully do so. Either way, this is something you need to consider if your past with that person is an issue for you. Talk to a professional if necessary to make the best decision for both you and your loved one.
- Reach out for support from family and friends; seek caregiver support groups or professional help to work through your feelings of guilt. Know that you are not alone in your caregiving journey and the help is available. Most of all, remember that you are doing the best that you can!
Deep Brain Stimulation for Parkinson Disease
This article appeared in the Spring 2018 issue of The Network magazine.
Deep brain stimulation (DBS) is an advanced therapy for patients with Parkinson disease (PD) suffering from complications of carbidopa/levodopa treatment. It has been FDA approved for use in PD since 2002 and for tremor prior to that. DBS involves the surgical implantation of a device with electrodes that deliver electrical signals to specific areas within the brain. Once the electrodes are placed, they are then connected to an implanted pulse generator (battery) which is placed under the skin, typically in the chest. When the device is activated, it delivers regular electrical pulses to that area of the brain and results in improvement of PD symptoms. The exact mechanisms of how DBS improves symptoms are not known. However, we do know that it disrupts pathological signals that occur within the brain of PD patients.
Currently, DBS is approved for those patients with a diagnosis of idiopathic PD, who have had symptoms for four or more years and suffer from motor complications that are not controlled with medications. Motor complications refer to the medications not lasting as long (wearing off), levodopa induced dyskinesias (extra, abnormal and involuntary movements) and dose failures.
Individuals who would not benefit from DBS are those with atypical forms of PD, those with signs of dementia and those whose symptoms do not improve with levodopa. Depression and anxiety do not preclude someone from receiving DBS, but these should be addressed, treated and well controlled prior to proceeding.
The process of implanting DBS for patients is a lengthy process. It involves careful pre-surgical screening, two or three surgeries and many follow up programming appointments. The first step is what is called an “Off/On Test.” For this test, the patient comes to an appointment with the neurologist after not taking PD medications from the night before. The patient is then examined in this “Off” medication state. Then, the patient receives a higher than usual dose of carbidopa/levodopa and then re-examined once those take effect.
The next step is to have a formal neuropsychological evaluation performed. This evaluation typically takes about a half of a day and includes extensive testing of memory, language and other cognitive abilities. Once these two preliminary evaluations are complete, most DBS centers hold a multi-disciplinary case conference to discuss these results and the patient’s candidacy for DBS surgery. If there are no contraindications to surgery, the patient will meet with the neurosurgeon who reviews the procedure and the potential risk of surgery. Often times, an additional pre-operative medical evaluation is also required to screen for other medical conditions that could pose additional surgical risks or potential complications. The patient also receives a pre-surgical MRI of the brain to assist with placement of the DBS electrodes.
Most centers perform DBS implantation in two or three individual surgeries. After the DBS device is implanted, the patient then returns to the clinic to turn the device on, typically after three or four weeks. The number of programming appointments needed varies from one patient to the next but can take 6-12 months to reach optimal settings. The battery is checked at routine follow-up appointments and depending on which device is implanted, the battery will need to be replaced from time to time.
Not all symptoms of PD will improve from DBS therapy. The general rule of thumb is if particular symptoms improve after taking carbidopa/levodopa then those symptoms can be expected to improve with DBS. The caveat to this rule are refractory tremors. Tremor in PD can often be resistant to carbidopa/levodopa, but responds well to DBS. In addition, DBS can significantly reduce problems with medication wearing off and dyskinesias. Walking difficulties in PD can be varied and complex. Some of these may respond to DBS but many do not, including balance. Therefore, patients should consult with their DBS physician prior to surgery in regard to their specific walking issues.
Symptoms that are unlikely to improve with DBS are those symptoms that worsen with levodopa, balance, memory problems, speech and swallowing difficulties. DBS can also allow the reduction of some of the PD medications, although it is not realistic to expect to stop all PD related medications after surgery.
It is important to understand that DBS is not a cure however, it is very effective at treating many motor symptoms of PD and improving quality of life.
Ryan T. Brennan, D.O. is an assistant professor in the Department of Neurology at Medical College of Wisconsin.
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