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To list members: The Nova Scotia Division of the Parkinson Foundation of Canada produces a regular Newsletter primarily aimed at Parkinsonians and their families in this province. The current Newsletter, however, contains an extensive summary on many issues currently under active discuion on the list. It was prepared because not many of our members have access, as yet, to the Internet. We thought others might find it useful as well. There is also a brief update on the trial fetal transplant program at the Victoria General Hospital in Halifax. We will try to pass on regular updates from time to time on this line of surgical research. ==================================================================== From the Newsletter, Nova Scotia Division, Parkinson Foundation, Vol. 7, Number 2, March-April, 1995 NEWS "ON-LINE": A NOVA SCOTIA PERSPECTIVE by Elaine Peers and Moira MacPherson There are so many interesting things happening in the world of Parkinsons that we don't know for sure where to start. With all the mass media coverage, everyone is interested in the inside story on "pallidotomy"; so we'll update you on that. Of course most everyone in the Maritimes has heard that another three years of studying the technology of implanting neural tissues into the brain has begun again at the Victoria General Hospital. Dr. Mendez is the newly arrived neurosurgeon who will lead the "transplant team". He has studied fetal tissues implanting (as well as pallidotomy) in Sweden with the surgical teams which are leading the World in both of these surgical techniques. Speaking of the World - The Internet is proving to be an advanced communications network that allows for a "grassroots" kind of information exchange. Of course the mass media is publicizing the "bad" things about it, but as in all things, there are people who will use anything for their evil purposes. For the rest of the people, Internet allows the instant sharing of information. The conversation about Parkinsons on this World-wide computer network is fantastic. OTHER SOURCES OF INFO It is not just the information on the Internet that we want to share with you. Our long standing sources - newsletters from other Parkinsons organizations - have lots of interesting articles too. Particularly interesting are several in the most recent copy of Movers and Shakers. That is the newsletter published by the Young Parkinson's Support Network of California. We will pare the articles to the essential details since we are trying to cram 30 pages of information onto seven. Tight squeeze! Anyone wanting the complete article can call on the toll-free 1-800-663-2468. We are suggesting again that Chapters could and should subscribe to one of these other newsletters and then find someone who can report on the contents at each Chapter meeting. To add to this, there is good reason to hope that our national newsletter NETWORK will soon carry much more information on research. It is fascinating to read what people with Parkinsons are doing, on their own, that is contributing to the body of information about Parkinsons and providing more and more clues. Eventually it will all lead to the discovery of the cause and a cure. A CASE IN POINT Blue-tinted sun glasses About a year ago we heard that blue-tinted sunglasses somehow helped some people cope better with some of the symptoms of Parkinsons. We couldn't get any specific information; now finally here is more about that idea. It is not from a research lab but from an in-depth study done by Tom Riess who has Parkinsons, but who also knows about light and colour and how eyes see. FREEZING/DYSKINESIA & EYESIGHT It has been known (but not how or why) that Parkinsons causes an abnormality in vision which is suspected to be involved in the phenomenon of freezing. Now there is data which suggests that a vision problem is involved in dyskinesia too. Based on his own experiences and personal observations, Tom suspects that there is a medication related ever changing level of impairment in the perception of motion or in the processing of information about motion. It could even be both, because it is known that the changing nature of the abnormality is related to the levels of dopamine in the brain and/or in the retina of the eye. The retina is known to be rich in neurons that need dopamine to function. And many message transmission neural centres are adversely affected by too much and then too little dopamine. Tom says that if dopamine levels are low (as when OFF) there is a decrease in the ability to notice changes in motion. Another writer (Alan Bonander) mentions his tendency to gently bump the car in front when in a slow-moving traffic line-up! He can't tell if his car and/or the one ahead has stopped or is still slowly rolling forward. Tom also reports that when dopamine levels are too high there is a hypersensitivity to motion. This can often cause motion sickness, especially if dyskinesia is present. When dyskinesia starts, objects close by appear to be moving. This is an illusion caused by one's head rocking & twitching about. The brain is in a state of being hyper-alert and when the eyes see these fast moving objects, or their arm or leg abnormally jerking about, the dyskinesia tends to get worse. It is believed to trigger an autonomic response that makes the dyskinesia worse. When dopamine levels are dropping and a person is turning OFF, it is possible that there is insufficient dopamine in the retina to process information about one's surrounding. It is as if there is an automatic shut- down in walking because the brain is not getting the information it needs to keep the body safe. The blue-sunglasses theory: Because it is the peripheral vision that picks-up motion, focusing on a distant object or blocking one's peripheral vision can help some people reduce their dyskinesia. In an effort to block his peripheral vision, Tom tried different coloured lenses. He has found that blue lenses tend to help him block his hyper-sensitivity to the apparent motion of nearby objects - which is really caused by his state of being slightly over-medicated and dyskinetic. The blue lenses block his perception of the abnormal motion and this makes the dyskinesia easier to control. Some people report that motion sickness can be prevented. He believes that blue lenses facilitates "the suppression of autonomic (tension-anxiety) induced dyskinesia". DRIVING PROBLEMS IDENTIFIED Tom cautions about driving with blue lenses because they can prevent you from seeing red-lights. Some people are now trying lenses that are clear in the centre but blue around the out-side edges. They get the same benefits - less dyskinesia; and have fewer side effects - they can see red lights. Alan also reports another caution: he now experiences an almost undeniable need to nod off to sleep at a point when his medication moves him from an OFF to an ON state. Many people report this tendency. It is believed to be related to the "sleep deprivation" that becomes a part of advancing Parkinsons and also to the fact that at some point the body must sleep... So finally, when the medication releases the tension in the muscles, the body falls asleep, whether it is convenient or not. If you are driving when this switch from OFF to ON happens, you could easily fall asleep at the wheel! So be wary; think about Alan's experience and compare it with yours. Many people are inclined to nap in the afternoons; is this why? - There is more information on driving; please phone for it if you want a copy. RESTLESS LEG SYNDROME (RLS) Some people with Parkinsons also experience something called "restless leg syndrome"; but many other people have this problem who do not have Parkinsons. Here are three descriptions of the main symptom: "it feels like bugs crawling up and down my legs" or "it's like my legs have a life of their own" or "it's a creepy-crawly sensation like a thousand tiny worms working their way through my leg muscles". Others report a strange numbness, tingling, pins and needles or shocks or rhythmic spasms in the legs. Doctors call these sensations "paraesthesia". RLS causes periodic limb movements during sleep - leg muscle twitches that occur every 20 to 40 seconds which force you to get up and walk around to get some relief. These sensations are not just leg-cramps or full-body jolts that startle you awake. Reports are that if RLS is severe, the anti-parkinson medications Sinemet CR, Permax or Parlodel may provide some relief; but if symptoms are mild, drugs like Tylenol with codeine or a central nervous system depressant may be sufficient. There is not much information available to guide in the treatment of combined RLS and Parkinsons; it may take working on a trial and error basis with your doctor to find a treatment that provides good relief. RLS can lead one to consider a similar symptom known as "akathisia" which is "an inner sense of restlessness with the inability to sit still". This has been described most often by people who are taking certain antipsychotic medications to reduce the amounts of active dopamine in the brain. Those medications, it is now known, can over time cause "drug induced" Parkinsons. Some people with "idiopathic" (cause unknown) Parkinsons also report this same sense of restlessness. Is there a logical relationship here that begs the familiar question: Are these kinds of sensations a symptom of Parkinsons or side effects of medication? Here are two illnesses, one with too much dopamine and one with too little, and here identified is a symptom of one condition that is a side effect of the medication used to treat the other. Is there a relationship or is it a coincidence? We guess we'd better beg a neuropharmachologist to ponder that question. ACTION TAKEN SOUTH OF THE BORDER Speaking of differences -- noting the differences between Canadians and Americans is one of our great national pass-times. We consider ourselves cautious and relatively passive while we consider our southern cousins to be almost reckless and aggressive. From a Parkinsons point of view, let's look at what Parkinson groups south of the border are doing. In the US in 1988 President Reagan endorsed a ban on the use of federal tax dollars for medical research (for Parkinsons) that involved the use of tissues taken from aborted fetuses. By 1991, an effective lobby group had formed nationally, to promote the Parkinsons cause and get the ban lifted. When President Clinton took office, the ban was canceled very quickly. And a few months later the US federal organization that funds medical research, the National Institute of Health, awarded $4.5 million to three large research teams to jointly study the procedure and the results of fetal neural tissue implants. The intent is to prove or disprove the effectiveness of implanted neural dopaminergic cells as a treatment for Parkinsons. Also being considered this year is a Bill (in honour of Senator Udall who has Parkinsons) that should force the US to take a good look at how little is being done to find better treatments and the cure. After all, Parkinsons affects 1.5 million people in the US and it is not an insignificant or rare medical problem. In fact, 1.5 million represents more people than all who have Muscular Dystrophy, Multiple Sclerosis and ALS combined! If this Bill for Parkinsons is passed into Law, it will provide more federal money for Parkinsons research and for badly needed support services. The publicity will greatly increase public awareness which should also increase private funding. Things are improving for many people with Parkinsons in the US. Let's hope this will spill over to us. Because: In 1988, in Canada it only took a few words from Jake Epp, then Minister of Health, to effectively impose a ban on federal funding which is still in effect. He simply stated that while he was the Minister of Health, no public funds would be directed toward medical research that used tissues taken from aborted fetuses. When that Minister of Health moved onto another portfolio, his personal promise was honoured by his Conservative successors. And now even with the change of political power in Ottawa, the new Liberal government is still keeping Mr. Epp's promise. The Medical Research Council of Canada continues to refuse to consider funding fetal tissue transplant research for Parkinsons because there has been no further directive since 1988. Why? Opinion polls indicate that close to 75 percent of the Canadian public believe that the research should continue. Why aren't we Canadians trying to do something? Could we be pretending to be cautious when we actually are feeling powerless? Are we afraid to "fight city hall"? If we are not afraid, then maybe all we need to do is to get organized and try, because there is something we can do. It is called advocacy or "lobbying" and includes letter writing and phone calls to your MP, sending letters to the editor of your local paper, getting friends and family to write letters too, or to at least also sign the letters you write. Can we wait for a spill-over effect to come to us from the US? For those who are desperate for relief from the symptoms and side effects, it is hard to think about waiting another two, three maybe four or five years to get the treatment that is making front page and prime-time new headlines. [continued in part 2] ========================================= Peter J. Kidd Learning Materials Consulting Services Phone & Fax: (902) 443-4262 Email: [log in to unmask] & [log in to unmask] =========================================