The Fair Oaks Support Group met on January 25th. Our speaker was Dr. Ejaz Shamim, a neurologist and movement disorder specialist specializing in Parkinson’s and who also treats several members in our group. Dr. Shamim began by passing out a printed copy of a power point presentation for us to look at and refer to later. Rather than reiterate what was in his handout, he began by taking questions on a wide range of issues and problems from the group. (See the synopsis below.)
Walk, walk, walk. If you can do one thing to help with your Parkinson’s it would be exercise and walking, but mostly walking. For many people it seems to slow down the progress of the disease, while conversely being bed-ridden seems to speed the disease’s progress. Walking can help people with gait problems, depression, sleep problems, and improve general physical fitness. According to Dr. Shamim, it is the one best thing you can do to help yourself to slow the disease and lead a longer and better life.
Here are some of the questions Dr. Shamim dealt with during the meeting:
Question: What arena holds the most promising potential for Parkinson’s Disease (PD)?
Answer: It’s hard to say because we don’t know the real cause of PD. We can treat the symptoms but we can’t stop the progression or cure the disease until we know what causes PD.
UVA is testing a new treatment that is a less invasive alternative to DBS. However, it’s a very selective study; subjects are picked who have no other medical problems. They are seeing positive results but have no idea of the long-term effects.
GDNF therapy (genetic therapy) has not been helpful yet; they’ve discovered you can’t really manipulate genes to change the brain much. Fetal transplant therapy was tried first but the results were horrible leading to tumors and death. Then stem cell therapy was tried at Columbia in NY. They put precursor cells in the brain. A decrease in symptoms resulted but again tumors resulted. They don’t have a way to control the stem cells once inserted. Another study has tried to use secretions from stem cells like vitamins for your brain cells. Study participants showed an 8% improvement but the improvement was not perceived by the patients. In other words, the doctors saw the 8% improvement sustained over time but it wasn’t perceptible to participants. Another very small study on GDNF testing, currently denied by the FDA, has moved forward because the neurologist doing the study is using himself as the ‘guinea pig’. The surgery component was successful but there are no results yet. All these studies need to address both efficacy and tolerability.
Another area which holds promise is neuroprotection. PD affects the frontal lobe of the brain which is why many people with PD suffer with depression. It is estimated that over 80% might have depression. A major problem is that medicines that treat depression exacerbate PD symptoms.
Neuroprotection currently is the best PD treatment beside carbidopa/levodopa. PD patients used to quickly progress and die but the advent of carbidopa/levodopa in 1962 changed that and by 1968 it was being used worldwide. Neuroprotection can include drugs such as rasegiline, selegiline and deprenyl, but can also be life style changes such as walking, exercising, staying cognitively active, and socialization. Tests show that exercise activates some of the same parts of the brain that the medication does.
The doctor stressed the importance of walking. Once you quit walking, you tend to spiral down medically.
As an aside, he added that the flu shot was critical in anyone over 60 for similar reasons. If you have PD, it’s harder to bounce back from being bed-ridden. So, keep walking! Also, if you have gait abnormalities, medications don’t help which is why you should work to keep walking. Use a cane or walker if necessary to keep you moving. Transcranial Magnetic Stimulation is a new treatment to help with gait problems.
Dr. Shamim spoke of two types of Parkinson’s: tremor dominant (like Michael J. Fox) and rigid dominant (like Mohammed Ali). Tremor dominant tends not to respond to the medication as well, but tends to progress at a slower rate, while rigid dominant is the reverse. It tends to respond better to medication, but also tends to progress at a faster rate. At the University of Maryland, Dr. Rich is looking at how the type of PD might affect treatment choice. Dr. Shamim also discussed the possibility of a genetic link with PD (as well as an auto-immune component). Kaiser is studying 600 Parkinson’s patients, with an eye towards genetic predisposition triggered by environmental factors. One can go to www.trials.org for ongoing trials.
Why does DBS work?
The first thing that happens with PD is the destruction of brain cells that produce dopamine. The networks and pathways in the brain are how movement is coordinated. PD tremors have a characteristic electrical frequency and disrupting the pathway and dampening the abnormal signals can stop or reduce the tremors.
What about Blood Pressure?
People who took certain blood pressure meds (calcium channel blockers and ACE inhibitors) seemed to develop PD later in life. He also explained orthostatic hypotension (why you can get dizzy standing up.)
What is Orthostatic Hypertension?
When you go from sitting to standing, your heart beats faster to compensate for the change in gravity to get blood to your brain, but the body adjusts. With some people, however, their heart rate and blood pressure don’t adjust when they stand up so they can get dizzy or even pass out. For these people, it can help to drink large quantities of water, possibly add salt to the diet or wear compression socks to the knees. There’s not a good therapy for the problem and Sinemet can make it much worse. The winter 2013-2014 issue of the PFNCA’s newsletter, has an article on Parkinson’s Disease and Orthostatic Hypotension by Dr. Stephen Grill. Check out http://www.parkinsonfoundation.org/education/our_newsletters.html
Sometimes my Meds don’t work. So, don’t make me mad!
When a person affected with PD gets angry, stressed or frustrated, their meds can stop working. Also, there seems to be an obsessive/compulsive component to PD which can also lead to meds not working. When meds don’t work for PD symptoms, there are other medications available to help you cope. These meds should be carefully monitored, though, because some are addictive or have other undesirable side effects. Use them as needed but as little as possible. However, try lifestyle changes first. Meditation can help.
Can my PD affect my sleep and can poor sleep affect my PD?
Sleep has two components: REM and non-REM. REM provides the most restful sleep and when you have the most vivid dreams. Around the age of 60, REM starts to deteriorate so many use sleep aids. Unfortunately, sleep aids bring on non-REM sleep and mess up the sleep cycle meaning the person wakes up tired. This can bring on psychiatric symptoms and PD symptoms worsen. Again, the drugs on the market to help with sleep have other side effects which can worsen PD symptoms and can be addictive so they should be used with care.
How does PD affect vision?
Vision problems result because PD meds cause muscles to relax, resulting in the double vision many report.
Music therapy with a specific beat can help with gait problems. Ballroom dancing and marching bands seem to help.
Tai chi is good for balance.
Sometimes seemingly unorthodox treatments can be effectively used, such as when Dr. Shamim used botulism for a patient with excessive saliva.
Protein Redistribution Diet – PD symptoms don’t bother you at night so eat your protein then.
The caregiver’s burden is huge which is why it is important for them to also take time to care for themselves.
Autopsies can lead to donations to brain banks. Johns Hopkins and Emory have large brain banks they use for study and testing. A problem is that the brain must be harvested within 24 hours to be useful.