There is no known connection between drug abuse and either Parkinson's disease (PD) or multiple sclerosis (MS). There was a particular illegal opiate-like intravenous drug used in the 1980's, which caused an irreversible condition that looked like PD, but that has not appeared again. As for the question about MS, I have seen patients with both PD and MS, but this is a rare occurrence. There is no known link between the two diseases or drug abuse and the development of either disease.
Many people with PD suffer from "overactive bladder." People who have an overactive bladder need to go to the bathroom more frequently than normal and have to get there more quickly. These symptoms are referred to as urinary "frequency and urgency" and can be very problematic due to the motor problems (e.g. slower movements) of PD. There are medications to treat overactive bladder that can be very effective, but not everyone responds the same. Complicating matters, urinary frequency and urgency in men may occur with an enlarged prostate gland, and, unfortunately, the medications to treat that problem are different and often work against the medications used to treat overactive bladder. Another difficulty is many of the medications for overactive bladder cause side effects that can be even worse than the bladder symptoms, such as impaired memory, confusion, blurred vision, dry mouth and constipation. Because of these challenges in treating overactive bladder, it is important to get expert input on both evaluating and treating bladder symptoms in PD.
Parkinson's disease (PD) and Huntington's disease (HD) are very different disorders and generally look quite different; however, in young people, they may look the same. Children who develop HD may appear to have very young onset PD, in which case the early signs begin with progressive slowing down, changes in facial expression, or possibly a tremor at rest.
HD, unlike PD, is always inherited, meaning one of the parent's of the person with Huntington's must have had the disease. It may not always seem that way if the parent died before they began to show symptoms of the disease.
HD causes a movement disorder that mostly involves extra, random, jerky movements called chorea, as well as dementia and behavioral problems that can be highly variable from individual to individual. The behavioral problems in HD are sometimes due to the fact that, as the disease advances, the ability to communicate diminishes. So, for example, behaviors such as spitting while eating may be the patient trying to convey that they are full. In instances like that, solving the meaning of certain behaviors can help to eliminate the problem.
Guillain-Barre syndrome is an acute inflammation of the nerves that provide sensation and muscle activity. It may follow specific types of infection, and develops over hours to weeks with slowly ascending numbness and weakness, starting in the toes. It then begins to recede, and patients begin to recover, which can take anywhere from as little as a few weeks to as long as a few years. Recovery is usually excellent, but not always completely back to normal. You should talk to your neurologist about the options available to manage the pain that you're still experiencing.
There are different approaches to beginning medication for people with PD. These differences have to do with the age and severity of the patient, as well as what the doctors believe works best. What you need to know is that there is no single "right" drug to give, and depending on the circumstances, different experts may suggest very different treatments, such as no medication, Sinemet, Mirapex, Requip, Azilect, L-Dopa, ect. They may also change medications based on how the patient responds. The cardinal rule of treating the symptoms of PD is: If the medicine isn't working, either a higher dose is needed or it is time to switch to something else.
There is a new medicine recently approved by the FDA for multiple sclerosis (MS) called Gilenya or fingolimod. MS is thought to be an autoimmune disease which attacks the central nervous system, and most of the anti-autoimmune drugs used to treat MS are given via injection or infusion. Gilenya, however, has some of those drug properties, but is much easier for patient to take because it is in pill form. There are also several similar drugs in experimental trials. I suggest visiting the National Multiple Sclerosis Society's web site which provides much more comprehensive information about ongoing research trials for MS.
Pain is common in PD and manifests in a wide variety of ways. Aching pain in the thighs is one of the more common complaints. I recommend stretching exercises which help, but certainly don't work all of the time. The usual medications for PD are often helpful. If the pain is worse at night, he might talk to his doctor about using a dose of long acting carbidopa-levodopa upon turning out the lights at night. The long acting pramipexole or ropinirole may also be helpful. By improving the pain, sleep may improve. There are a number of sleep remedies which your doctor can discuss with you. The cardinal rule of treating the symptoms of PD is: If the medicine isn't working, either a higher dose is needed or it is time to switch to something else.
Unfortunately the combination of your symptoms does not point to any specific syndrome that I can think of. Your description makes me think it may be a disorder of the muscle cells rather than the nervous system itself. I'm sure you've tried a number of medications, which is a hit or miss sort of approach unless someone can identify the abnormality. I suggest seeing a neuromuscular specialist and that you bring him or her a video of your affected extremities during an episode of cramping and disfigurement. This is the most reliable way to show them, especially if you aren't sure if you can induce an episode during the exam. It is probably crucial for the doctor to be able to see exactly how the spasms occur.
Amyotrophic lateral sclerosis (ALS), known in the lay community as Lou Gehrig's disease (after the famous NY Yankees' baseball star), is an uncommon disorder that affects the nerve cells in the brain and the spinal cord that control the muscles. Agent Orange was used in the Vietnam War. I am not sure if it was used in the Korean War. However, between five and 10 percent of ALS cases are thought to be inherited. Unless your father had an affected parent, it is unlikely that you will inherit this disease.
Botulinum toxin (and there are now four different ones available in the U.S.) is the best treatment for torticollis. There are experimental protocols for treating it with brain surgery, but these trials are not widely available. The oral medications for torticollis are far less helpful than botulinum toxin and cause far more side effects.
Many Parkinson's patients report that their PD started immediately after a precipitant, such as surgery, trauma, emotional upset, etc. For example, a patient in my clinic today told me their left arm tremors began as soon as they suffered an injury in which they pulled a tendon in their neck. No one knows exactly how to interpret these types of reports, but we do know that PD symptoms worsen with stress.
My own opinion is that certain stressors "unmask" latent PD. That is, the PD was present in the brain but not yet at a level to cause symptoms, and the stress made it temporarily worse, thus bringing it to the patient's attention. One might also argue, in this particular case, that the anesthesia had something to do with it. There is emerging evidence that general anesthesia may cause some worsening of Alzheimer's disease, but Alzheimer's and PD are very different, and we do not have the same evidence of a causal relationship between anesthesia and PD.
Unfortunately, falling is something that occurs in many patients with PD. It is most important to understand the serious risks associated with falls. Even small injuries can produce major functional declines.
A home with stairs is often a big problem. Most PD patients do not have problems walking upstairs, but have serious problems going downstairs. PD patients tend to lose their balance going forwards, and a fall down the stairs is obviously much worse than up.
The Visiting Nurse Association can perform home safety assessments, which are paid for by Medicare. The assessment is paid for, but any recommended home modifications are not covered by insurers.
Physical therapy, Tai Chi and other exercise programs may prove to be very helpful in improving balance, walking and fall prevention. For some people, there may come a time when assistive devices, such as canes or walkers may be needed. There is some data that shows increasing vitamin D levels can result in reduced falls, but that data is related to older adults who do not have PD.
One way to know is if there is something clearly abnormal about your movements. Movement disorders typically involve tremors, slowing and/or clumsiness of movement, alterations in walking and balance, sudden jerks, tics and sustained abnormal postures. If you think you are having strange or disordered movements, you should first discuss it with your primary care physician. Many movement disorders are simply caused by side effects of routinely used medications, while other changes in movement may simply be due to aging.
Chronic cough is a common problem in PD. For one thing, people with PD often are not able to swallow perfectly, so that occasionally saliva or water may trickle down the trachea (windpipe), which will cause a chronic cough. Secondly, people with PD often have a weak cough so that they never fully clear the sputum produced in the lungs. This remaining sputum is, therefore, always present, and may trigger the lungs to produce more, which needs to be coughed up. PD may be the cause of the chronic cough; however, there are other conditions that may be contributing to or causing the coughing, such as rhinitis or post nasal drip.
It could be depression, but it could be other things as well. If he is depressed, he would probably be showing symptoms of sadness or irritability, too.
One of the difficulties in dealing with the many symptoms of PD is that each one can have many different causes, and sometimes each one has more than one contributing factor. Most people with PD have sleep problems.
It is possible your husband has sleep apnea, a syndrome in which people stop breathing during stages of deep sleep. This causes their sleep to "lighten" to a less restful level, or to frequently wake up for a few seconds in order to breathe again. People with sleep apnea rarely recall awakening, often snore a lot, and appear as if they sleep very heavily. They may sleep 10-12 hours at night and then fall asleep again over breakfast. The possibility that he has sleep apnea can be investigated with a sleep study (polysomnogram).
Another problem for PD patients is boredom. If they cannot physically do the things they like to do, they may sit and read or watch TV and fall asleep. If he falls asleep at home during the day but not while he is in a situation where he is socializing, this may be a plausible explanation.
Many people with PD develop changes in the brain that are similar to the changes seen in people with narcolepsy. In narcolepsy, people who are otherwise healthy have a great need to sleep a lot and have disrupted sleep cycles. Similar changes may occur in people with PD, although the disorder is not exactly the same as narcolepsy. The end result, however, is a need to sleep during the day, despite having a good night's sleep.
Finally, the medications we use to treat the motor symptoms of PD, especially the dopamine agonists (mirapex, requip) may make people very sleepy, and, of course, many medications used for other purposed may cause sleepiness as a side effect.
Because there can be many different causes for your husband's tiredness, it is important to have him thoroughly evaluated to see if the reason can be determined and treated.
The "baby steps" are unfortunately common in PD. This usually represents a decline in the response to medication, although it may simply occur when people with PD are tired. It probably represents either a mild progression of the disease or a mild change in the brain's response to the medication.
There is nothing new that I'm aware of concerning myoclonus. There are a few drugs that are usually helpful, and I'm sure you've tried some of them. I will note that sometimes people with myoclonus have to take these drugs at higher than the usual doses than they are used in treating other conditions. Talk to your treating physician to see if a dose adjustment will help.
"Freezing," as you may already know, refers to situations when someone with Parkinson's feet suddenly stick to the ground and won't move, in spite of the fact that their upper body feels ready to go. Patients often say that their feet "froze," hence our use of the term. It most commonly occurs when first starting to walk or when turning to move in another direction. Aside from being very annoying, freezing also increases the risk of falling.
Some patients only freeze when they are, as they describe it, feeling "off," meaning it occurs when their medication is no longer working. Rarely do patients report freezing they feel their medications are working well.
There is no medication known to fix this particular problem, although sometimes rasagiline helps. Occasionally amantadine or an adjustment of other PD medications works, too, but no medications are available that reliably treat freezing.
Hopefully that will change in the future. In fact, a neurologist at the Providence Veteran's Affairs Medical Center is currently piloting a treatment using a special device for physical therapy, but the treatment is in the early experimental phase right now.
Deep brain stimulation (DBS) sometimes improves freezing. Given that DBS requires surgery and is not reliable to treat the particular problem of freezing, DBS is not used to treat freezing problems alone.
Exercise is good for anyone with PD who is able to do it. I recommend walking and stretching, but all types exercising is good for PD. It is important to try to do exercises involving the legs. If walking is a problem, an exercycle that works the legs would be the next best thing. There is an exercise program offered at the University of Rhode Island for people with PD called BIG (as in moving big), and you can get information on this by contacting Maryellen Thibodeau, RN, director of the APDA Information and Referral Center at (401) 736-1046.
You did not make a wrong decision. The only medication that we try to postpone starting is carbidopa-levodopa (Sinemet) because of the potential for long-term side effects, especially in younger patients like yourself. The only reason to avoid any of the other PD medications is the possibility of side effects while you're actually taking the drug.
Further, having decided not to start medications sooner would not have caused more harm since none of the medications have been proven to slow the disease progression, and, with the one exception of rasagaline (Azilect), there is no reason to think medications work better when started earlier.
Treating PD is NOT like treating cancer where there is a "window of opportunity" that, if missed, makes the outcome much worse. Having said that, you have probably been feeling slower and stiffer all along than you would if you had been taking one of the dopamine agonist drugs (pramipexole or ropinerole).
Speech therapy is useful for many people with PD, particularly when they are willing to put in the time practicing the exercises that are part of the program. So far, only the Lee Silverman method of speech therapy has experimental data to support its use with Parkinson's disease patients, but other forms of therapy may still be helpful.
In Rhode Island, we are lucky to have a professor of speech pathology at the University of Rhode Island, Leslie Mahler, PhD, who received her doctorate in speech pathology by studying how Parkinson's affects speech. Dr. Mahler provides speech therapy to patients with PD and other neurological disorders.
Unfortunately, there is less research on speech therapy in PD than on other aspects of the disease, partly because it isn't well understood how the disease impacts speech and because the medications that help to treat slowness, stiffness and tremor are usually not helpful for improving speech. More research on the speech-related aspects of PD is, at this time, an unmet need in the world of PD.
The Rhode Island Chapter of the American Parkinson's Disease Association is wonderful resource that helps connect people with Parkinson's disease to the services they need. I encourage you to contact Maryellen Thibodeau, RN, director of the APDA Information and Referral Center at (401) 736-1046. While the RIAPDA does not currently have a program to directly assist with the cost of medical equipment, they will be able to direct you on how to get donated equipment for your mother.
If your mother has Medicare, they generally pay 80 percent of the Medicare-allowable charges for equipment costs. If she has Medicaid, they typically pay for the entire cost. Obtaining medical equipment under these insurances generally requires forms to be filled out by the patient's treating physician to justify the need for the equipment. You can contact your mother's insurance company directly for more detailed information on how to get coverage for the cost of equipment. The Department of Elderly Affairs may be another valuable resource.
This is a more complicated question than it may appear. In most cases, Parkinson's disease (PD) is "sporadic," which means that no one else in the family has it. However, there are many people who have PD that also runs in the family. There have been a very small number of genes that clearly cause PD, in which the disease is passed down from one generation to the next. The number of families with this sort of PD is extraordinarily small.
There are other genetic causes of PD which have recessive inheritance patterns, meaning they may skip generations. Most authorities think that PD is generally caused by either a combination of multiple abnormal genes, or single genes that are considered to be permissive genes. In the case of a person with a single permissive gene, it is thought they will only develop PD if something else "triggers" the gene, such as a particular infection.
There are many large, sophisticated genetic studies on PD that have taken place and continue to be performed. While several identified genes are linked to PD, few actually cause the disease.
Finally, in the case of sporadic PD, for instance if you have PD but no one else in the family has it, your children have only a slightly increased risk of developing the disease, about two in a 100. The risk without having a parent with PD is about one in a 100.
In his 1817 monograph, The Shaking Palsy, when James Parkinson wrote about the many motor symptoms of PD, he claimed the "the senses and intellect" remained "uninjured." Unfortunately, this turned out not to be true for everyone with PD. There is an increased risk of dementia in people with PD compared to people of the same age without the disease. In addition, in most PD patients there are other changes that can be detected on sophisticated neuropsychological testing that may not be evident in the challenges of daily life. For example, very early on in PD, people suffer a decline in executive functioning, which is a theoretical term describing the ability of the brain to plan and perform tasks.
People with PD have more trouble "multitasking" than they had before they developed the disease. For example, they have more difficulty doing complicated tasks, such as cooking difficult dishes that call for heating one thing up while something else cools, and yet something else requires constant stirring. People with PD often also develop distortions of visuospatial perception and misjudge distances or fail to interpret complex patterns.
As the disease progresses the risk of memory problems and thinking problems do increase. Some PD patients also develop slowness of thinking, even when their memory and thinking processes are intact, which can be misinterpreted as dementia.
Although I have never seen anyone who developed PD under the age of 18, it is, unfortunately possible to develop PD as young as 13. Since there is no diagnostic test for PD, there are a number of rare disorders that must be considered before concluding that the problem is in fact PD. Some of these can be tested for, but not all.
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