PD Community Blogs
We’ve searched the “blogosphere” for creative, informative and educational blogs that might be of interest to you.
Kate Kelsall: Shake, Rattle and Roll
Kate was diagnosed with Parkinson’s disease in the mid-1990s. In addition to being an activist for Parkinson research, she is a co-facilitator of a DBS support group in Denver.
Here’s a few more blogs that are worth checking out.
- Studio Foxhaven: Parkinson’s Journal
- About Parkinson’s Disease: Natural Healthy Concepts
- Shaky Paws Grampa
Voices from Parkinson's community
Date: Mar 20, 2017
The Parkinson Association of the Rockies has created a new segment on our bi-weekly enews called, "Ask the Parkinson's Expert". Every enews we ask the community to submit a question they may have for a Parkinson's doctor, a selected question will then be answered and featured on the next enews.
All questions are confidential. Not all questions can be answered, so please notify your physician for immediate attention.
Q: "My husband has a really hard time with the levodopa-carbidopa needed to manage motor symptoms from Parkinson's. When he takes the drugs, he is so tired he needs to nap and is generally in a drunken state for hours. He is normal when not taking the drugs (except for motor symptoms). Our docs tell us this is not common but does happen. We have tried different dosage amounts and timing, but nothing has worked and this has been going on for a couple of years. It is ruining our quality of life and stressing our marriage. Do you have suggestions that could help us??"
A: "This is an uncommon situation but one which definitely comes up and can be fairly problematic. If you are in a position where you do not yet need levodopa or can manage your symptoms with exercise/physical therapy/occupational therapy this may be your best bet and I do have some patients who primarily manage their PD without medications because of side effects for quite some time. Unfortunately, this is not always a good long-term solution.
In some people this is a transient side effect and if they stick with levodopa (often for a few weeks to months) or go up on it slowly it may become less problematic. Unfortunately, other people seem to have this as a long-term side effect. It sounds like you may have tried taking other doses (e.g. Smaller, frequent doses) and/or formulations (e.g. Sinemet CR, rytary) which can help for some people. There are other formulations in development (e.g. patches, nasal spray, accordion pill) and in clinical trials. If you are interested you might want to check foxtrialfinder, CNI, or the University of Colorado Movement Disorders Center to see if there may be research you could participate in. If you have not yet tried MAO-inhibitors (e.g. rasagiline, selegeline) or dopamine agonists (e.g. neurpro, ropinirole, pramipexole) these may be worth trying but are usually less effective than levodopa and dopamine agonists can also cause drowsiness.
Other tricks which can help is to try to make an effort to exercise or be active around the time you take the levodopa as it seems the side effect of drowsiness is more pronounced if one is resting or still as opposed to active. Alternatively, some people find taking a planned short power nap can help them avoid disruptions from the drowsiness and allow them to enjoy the rest of their good on time. Lastly, one could try taking another supplement (e.g. Caffeine) or medication (e.g. Amantadine, a stimulant) to try to treat the side effects of the levodopa.”
- Dr. Brian Berman & Dr. Benzi Kluger, University of Colorado Hospital
Date: Aug 18, 2014
I'm sure you've all heard by now that Robin Williams was in the early stages of Parkinson's before he committed suicide and that he was currently experiencing a very serious episode of depression. While it would be beyond presumptuous to try to diagnose from afar what he was going through at the end of his life, I think that it is still important to open a discussion about this topic.
From the perspective of the Parkinson's community, I think the most potentially damaging element of this story is that the general population could equate Parkinson's with a death sentence or come to believe that suicide might truly be a viable option to consider, particularly in the earliest stages of the disease. To be sure, it is normal to experience situational depression when receiving a life-changing diagnosis such as Parkinson's disease. However, it's also critical to recognize that the process of the condition will itself often amplify symptoms of depression and other psychological conditions (including apathy as well as anxiety). Most importantly, I want to highlight the fact that there are treatment options particularly because the link between depression and Parkinson disease is so intertwined within the neurochemistry of the brain.
At the most basic level, Parkinson's is a result of a problem in dopamine regulation. For those with the condition, not enough dopamine is produced in the substantia nigra (a structure in the midbrain) and as a result, there is a suppression of movement, energy and activity. All of this results in systemic effects at all levels including mental health. To be sure, that is a significant oversimplification of what happens, and the influences of the lack of dopamine firing are complex. However, neurons work together in a complex system and when the dopamine cells stop "firing" as frequently (due to loss of the dopaminergic cells), it has an impact on other cells in the vicinity. To quote one of my favorite doctors in Colorado, Dr. Avi Kurtz, “If you have a dopamine firing problem, you have a serotonin firing problem and a norepinephrine firing problem and a whole cascade of other neurotransmitters are affected (not to mention the influence of fatigue, pain, changes in cognition, among others).”
I think that this is an opportunity to bring awareness to the Parkinson's community that depression is often a biochemical fact of life with the disease. We should be helping to get people with Parkinson's past the societal stigma of pharmacological treatment, as well as educating them as to how incorporating high intensity physical activity together with medication is likely to produce the best treatment outcomes. To the general population, it's an opportunity to educate them about the link between depression and Parkinson disease.
However, the most important opportunity here is to highlight the fact that the vast majority of the people that we see with a diagnosis today have been or will be living with the disease for decades. And of these, the vast majority of them are still able to live full and happy and productive lives. I don't say this to minimize the terrible nature of the disease but just to remind people that Parkinson's disease isn't some kind of death sentence. To be sure, it is a difficult disease to live with. But in my little corner of Colorado, we have a whole community of people living well with the disease and I've got to believe that is the case for most of the other Parkinson's communities around the US and beyond.
Feel free to use any parts of this or even just the idea to help get the message out through your community. Please do what you want with this information and don't hesitate to reach out to me if there is anything I can do to help you.
Sincerely, John Dean, MA CCC-SLP
Here are some resources that I've reviewed recently that I think have been helpful.
1- Karl Robb
Blogger and author of "a Soft Voice in a Noisy World", Karl Robb wrote a piece in the New Republic about the loss Robin Williams
Check out his blog as well as his book if you haven't already, he is a very insightful writer
2 -Diane Cook
Colorado's own Diane Cook was recently featured on a newscast on this topic
3 - Davis Phinney Foundation
The Davis Phinney Foundation for Parkinson's (www.DavisPhinneyfoundation.org) has a webinar from one of their Victory Summit's on the topic of depression
Additional reference materials on this topic (and many others) can be found in their "Every Victory Counts" manual, which is just getting ready to be released in its third edition
In the meantime, you can download the "Mood and Behavior Worksheet" from the second edition Of "Every Victory Counts"
4- Parkinson Association of the Rockies
The Parkinson's Association of the Rockies has a staff social worker, Cari Friedman who is an excellent source of information in general and has specific training in relation to this area.
5 - The Michael J. Fox Foundation
The Michael J. Fox Foundation has a section on their website highlighting these topics
We recently did an interview with Dr. Benzi Kluger MD MS, Clinic Director for the Movement Disorders Program at the University of Colorado, on the topic of nonmotor symptoms. Not only did we talk about psychological symptoms and Parkinson's disease but we also had a nice discussion about the palliative care clinic that he founded there a couple years ago (among the first, if not the first, program of this type in the US).
Diane has been a great friend to the Parkinson's community and I would expect her to do a show on this topic sometime soon.
She has a unique experience and perhaps a different perspective because her husband just passed away from the disease and had a terrible experience at the end of life
She recently did an interview with Linda Ronstadt (who was diagnosed with Parkinson's disease last year). Although Parkinson's disease was not the primary focus of the show, they definitely get into the topic, particularly in the last third or so.
Date: Aug 12, 2014
Date: May 14, 2014
The Cheyenne PD Support Group applied for and was awarded a PCORI grant to study 'Quality of Care for the Wyoming Parkinson's Community'.
At this point, we are really just doing research on feasible ideas on which to do research.
The whole reason for PCORI grants is to make sure that the ideas being researched are ideas that have been brought up by 'shareholders' of the PD community. Those shareholders being: the PD patients themselves, their caretakers and family, the medical personnel and tertiary medical personnel (such as physical therapists, massage therapists)
PLEASE! WE NEED YOUR IDEAS!
Please see the attached information on the PCORI research grant here.
Date: Apr 07, 2014
The Global Community Conference on Parkinson's Disease; Beyond the Limits, was held on March 2-4, 2014 in Keystone, Colorado at the Keystone Conference Center. The Parkinson Association, Teva Neuroscience and HealthOne presented the Global Community Conference as a one of a kind conference wihich aimed at bringing renowned experts in Parkinson's and related disroder out of their labs and classrooms for a unique opportunity to connect with those intersted in Parkinson's Disease care and managment. The conference provided a unique opportunity to connect the researchers who are working to solve some of the more global issues associated with Parkinson's Disease to come into cotact and have conversations with people living with the disease.
Below you can find some of the slides of the presetantions from some of the renowned speakers we were lucky enough to have present at the conference. Note: We will be updating the blog when additional slides come in.
Sleep & Fatigue, by Benzi Kluger, MD
The Dynamic Family, by Jane Barton, MTS, MASM
Complementary & Alternative Medicine, by Lisa Corbin, MD
Make Exercise Medicine - Top 10 How To's, by Becky Farley, PhD
Nonmotor Symptoms in Parkinson's Disease, by Aaron Haug,MD
Caring Conversations, by Nora Reznickova, MD
Lewy Body Dementia, Parkinson's Sleeping Bear, by Helen & James Whitworth, Authors
Psychological Issues & Managment, by Benzi Kluger, MD
Date: Apr 03, 2014
Parkinson’s disease is among the Social Security Administration’s (SSA’s) listing of impairments, which means there are clear-cut eligibility criteria for qualifying for disability benefits.
The Blue Book
To meet the SSA’s listing for the condition, which appears in Section 11.06 of the Blue Book, you must experience one of the following symptoms, and your symptoms must affect at least two of your extremities:
- Serve muscle rigidity
- Uncontrollably slow movement known as Bradykinesia
As a result of your symptoms, you must also have:
- Long-term issues with gross and dexterous movements
- Pronounced issues with walking, standing, and moving about
Recent and thorough medical records are the key to proving your disability. These should include:
- A detailed statement from your doctor summarizing your case
- Documentation of any tests, including neuroimaging results supporting the diagnosis
- Records of past and present medications and their affects
For more information on medically qualifying with Parkinson’s disease visit: http://www.disability-benefits-help.org/disabling-conditions/parkinsons-disease-and-social-security-disability
The Compassionate Allowances Program
The SSA’s Compassionate Allowances (CAL) program ensures rapid review and virtually unchallenged approval of disability applications for certain medical conditions. Parkinson’s disease is not among the listing of CAL-approved conditions, but there are similar conditions which are:
- Shy-Drager Syndrome
- Neurologic Orthostatic Hypotension
- Shy-McGee-Drager Syndrome
- Parkinson's Plus Syndrome
- Striatonigral Degeneration
- Sporadic Olivopontocerebellar Atrophy
Collectively these conditions are known as Multiple System Atrophy (MSA) and they are quite similar to Parkinson’s disease and often seen in conjunction with it. They are in fact so similar that they are often diagnosed as Parkinson’s and are considered by many to be variants of the same disease: Parkinsonian syndrome.
MSA can be extremely challenging to diagnose and to differentiate from Parkinson’s. Only specialists that are exceptionally familiar with all types of Parkinsonian syndrome are typically able to make the distinction.
To be eligible under CAL, you must have a formal diagnosis of MSA, not Parkinson’s. You must also be able to support your claim through appropriate medical records, which include:
- MRIs of the brain showing abnormalities consistent with the disease
- Physician notes, documenting progression of the disease and lack of response to available treatments
- Neurological exam notes from specialist appointments
- Activities of daily living (ADLs) report(s) completed by a caregiver or relative, documenting the affects of symptoms on everyday life
Financially Qualifying for SSD Benefits
There are two disability programs the SSA runs:
- Social Security Disability Insurance (SSDI)
- Supplemental Security Income (SSI)
Medically qualifying is only half of the process. You must also meet the financial/technical eligibility rules in order to receive benefits through either or both programs.
- For SSDI, you must have worked in the past and paid Social Security taxes. Those taxes amount to “work credits” and you must have a minimum number of work credits from the previous 10 years of your employment. You must additionally have earning from employment no higher than $1,070 per month (as of 2014).
- For SSI, you must have very limited income and other financial resources, including assets, as this is a need-based program. 2014 limits are set at $721 per month, but only certain sources of income/resources are “counted”.
You can learn more about SSDI and SSI benefits here: http://www.ssa.gov/disability/
Submitting an Application on Behalf of Someone Afflicted by Parkinson’s
The first step in filing a claim for SSD benefits is to complete the SSA’s application. This can be done online at the SSA’s website, or by making an appointment to complete your application in person at the SSA’s local office in your area. Filing online is often the fastest method for initiating a claim, but you will need to follow up at the local office to submit medical records and other supporting documentation.
It is also important to note that SSI applications can only be completed locally. Online application for this program is not available.
Keep in mind as well that the application for benefits is just one aspect of the claim you will file. Thorough medical records are also necessary. Additionally, ADL reports completed by you, the applicant, and by his or her doctor are also crucial.
When applying for benefits, either for yourself or on behalf of someone with Parkinson’s, you will want to consider consulting an attorney or Social Security advocate. Someone more familiar with the process can help you collect the necessary medical records and can assist with the initial application and any appeals that may be required.
Social Security Disability Help
Date: Mar 06, 2014
By Aaron Haug, M.D., Blue Sky Neurology
Tremor gets the most attention. It is often the resting tremor that first brings Parkinson disease (PD) to someone’s attention. It may be that people with Parkinson’s (PWP) ask their physicians about it, or their physicians may be the first to notice it, but resting tremor is often the symptom that leads to the diagnosis of PD.
Because tremor is the most obvious symptom for many PWP, it can sometimes remain the center of attention for too long. While tremor and other motor symptoms certainly can cause functional disability and should be treated optimally, it is often the nonmotor symptoms of PD that cause a significant portion of the discomfort and disability for PWP.
Nonmotor symptoms can affect a wide range of bodily functions. This two-part article will present some of the most common symptoms and their treatments. Not everyone will experience all of these symptoms! It can be overwhelming to see all of these symptoms listed one after the other, but it is important for PWP and their loved ones to be aware of these symptoms so that treatments can be considered.
REM Sleep Behavior Disorder (RBD). Normally, a person’s body is paralyzed during sleep. In some PWP this safety mechanism is lost, and they can unknowingly act out their dreams. This is often noted by the bed partner as kicking or punching behavior. Treatment with clonazepam, a benzodiazepine, can be very effective.
Restless legs syndrome (RLS). RLS is described as a creepy-crawly, achy, tight, or restless feeling in the legs, which is usually worse in the evening and briefly relieved by moving the legs. Many of the medicines that are used to treat tremor and motor symptoms (levodopa, pramipexole, ropinirole, rotigotine) are effective for RLS, and clonazepam can also be effective. Opiate or opioid-like medicines (such as hydrocodone, oxycodone, or tramadol) are sometimes used in more severe cases.
Insomnia. Difficulty falling asleep or staying asleep is common in PWP. An important part of treating insomnia is good sleep hygiene. This includes behaviors such as setting a regular bedtime; not drinking caffeine after noon; and not drinking alcohol in excess. If one has been in bed for more than 15 minutes and is not falling asleep, it is advisable to get out of bed, do something boring (like read the phone book), and then try again. As far as medicines, melatonin is a supplement available over-the-counter that can be very effective in PWP. Prescription medicines such as clonazepam and Ambien can be effective but are not meant to be used long-term. Medicines that contain diphenhydramine (i.e. Benadryl, which is an ingredient in medicines such as Tylenol PM or Advil PM) should generally be avoided as they can cause confusion in older patients, and this problem can be more prominent in PWP.
Excessive Daytime Sleepiness. First, try to improve nighttime sleep with the strategies above. If sleepiness persists, brief naps can be very helpful. If these measures are not enough, medicines such as methylphenidate (Ritalin), modafinil (Provigil), or armodafinil (Nuvigil) are often used.
Anxiety and Depression. These symptoms are both common in Parkinson disease. This is partly because levels of brain chemicals involved in mood, such as serotonin and norepinephrine, are decreased in PD along with dopamine. Counseling and talk therapy can be helpful and are worth considering before prescription medicines. Benzodiazepines, such as clonazepam, can be helpful for anxiety. There are many medicines that can be helpful with depression as well as anxiety: fluoxetine (Prozac), sertraline (Zoloft), citalopram (Celexa), escitalopram (Lexapro), paroxetine (Paxil), buproprion (Wellbutrin), venlafaxine (Effexor), desvenlafaxine (Pristiq), mirtazapine (Remeron), vilazodone (Viibryd), and trazodone.
Dementia. Memory loss and changes in thinking can occur in PWP. Cholinesterase inhibitors can improve thinking and memory in some PWP; these include donepezil (Aricept), rivastigmine (Exelon, Exelon patch), and galantamine (Razadyne). Occasionally PWP with dementia can become agitated or have hallucinations. Quetiapine (Seroquel) and clozapine (Clozaril) can be helpful for these symptoms. Other antipsychotic medications, such as haloperidol (Haldol), risperidone (Risperdal), aripiprazole (Abilify), olanzapine (Zyprexa), and ziprasidone (Geodon) should be avoided as they can make the motor symptoms of PD worse.
In the next issue, autonomic nonmotor symptoms such as orthostatic hypotension, overactive bladder, erectile dysfunction, and gastrointestinal symptoms will be discussed. Again, although not everyone will experience these symptoms, it is important to be aware of them so that treatment options can be considered and discussed.
Date: Dec 16, 2013
By Aaron Haug, M.D., Blue Sky Neurology
This is second article in a two-part series discussing nonmotor symptoms in Parkinson disease (PD). Although it is often tremor that first brings PD to someone’s attention, the nonmotor symptoms of PD can cause a significant portion of the discomfort and disability for people with Parkinson’s (PWP). Not everyone will experience all of these symptoms, but it is important for PWP and their loved ones to be aware of these symptoms so that treatments can be considered.
Date: May 05, 2011
Spring time in the Rockies. What does that mean to you? One can use the analogy of Parkinson's and Spring. The weather is unpredictable in the Spring. There are beautiful days outside. Sometimes, storms which vary in severity. There can be an extreme range of temperatures and conditions. Sound familiar with your own case of Parkinson's. Each one of you may have different extremes on any given day of symptoms. Some days, you may feel like you can't go out because of your symptoms. Other days, nothing can stop you from exploring the outdoors.
Date: May 24, 2011
People with PD can get better... and stay better longer with exercise!
That is the MOTTO of the Parkinson Wellness Recovery (PWR!) Project – a project sponsored by NeuroFit NetWorks (www.nfnw.org). The PWR! Project was started in October 2009 when Dr. Becky Farley, a researcher, LSVT® BIG inventor, physical therapist, neuroscientist, and Parkinson’s exercise specialist opened a model community-based neurofitness center for people with PD in Tucson, AZ…
Date: Jun 24, 2011
Is your brain less agile and your memory less reliable? Compared to last year, are you more easily confused and slower to process information? While these types of cognitive changes are common in individuals with Parkinson’s disease, they are also part of the normal aging process. A significant number of the elderly live with some memory deficiencies, collectively known as age-associated memory impairment.