Parkinson's. Now what?
Oct 1, 2018 17:12:05 #
BobT
Loc: southern Minnesota
I've recently been diagnosed with Parkinson's. So as an avid hobby photographer what can I expect in the future? Will a tripod become a must-use piece of equipment. So far. I'm still pretty steady.
I would greatly appreciate hearing from any UHHers who may also have this disease. Thank you.
I would greatly appreciate hearing from any UHHers who may also have this disease. Thank you.
Oct 1, 2018 17:32:31 #
JHS
Loc: Carmichael, CA
Bob,
There is an operation that greatly helps control a person's shaking. It is called "Deep Brain Stimulation Surgery". It is an overnight stay in the hospital. Before I had DBSS, I could not hold a cup of coffee without it sloshing over the sides of the cup.
Now I can enjoy coffee and even use a spoon with soup. Although I did not have Parkinson's, I had what is called a familial tremor and it slowly progressed to a "whole lot of shakin' going on" stage. The operation consists of the surgeon drilling a hole in
the patient's skull, then inserting a multi-electrode probe into the brain. The probe has a set of wires that the surgeon runs under the skin, down the neck and to the front of the chest. A small control unit with a five year battery is implanted in the chest and the patient is given a controller to turn the device on in the morning and off at night. The controller also allows the voltage to the probe to be changed if necessary. Normally after the surgery, the patient visits his/her neurologist to have the baseline voltage, pulse width, etc., set. Then the patient is monitored every six months or so to ensure that the amount of control is acceptable.
I had the surgery about three years ago and would do it again in a heartbeat. Prior to the surgery, I tried several medications, but they either made me very groggy during the day, or they interfered with other, more essential meds.
By the way, a client who has Parkinson's told me about it and with the Parkinson's the difference is amazing. He demonstrated
by turning the DBS off and allowing his Parkinson's to take over. He shook like crazy. Then he turned it back on and no shaking. Marvelous.
I hope this is good information for you. Good Luck, John
There is an operation that greatly helps control a person's shaking. It is called "Deep Brain Stimulation Surgery". It is an overnight stay in the hospital. Before I had DBSS, I could not hold a cup of coffee without it sloshing over the sides of the cup.
Now I can enjoy coffee and even use a spoon with soup. Although I did not have Parkinson's, I had what is called a familial tremor and it slowly progressed to a "whole lot of shakin' going on" stage. The operation consists of the surgeon drilling a hole in
the patient's skull, then inserting a multi-electrode probe into the brain. The probe has a set of wires that the surgeon runs under the skin, down the neck and to the front of the chest. A small control unit with a five year battery is implanted in the chest and the patient is given a controller to turn the device on in the morning and off at night. The controller also allows the voltage to the probe to be changed if necessary. Normally after the surgery, the patient visits his/her neurologist to have the baseline voltage, pulse width, etc., set. Then the patient is monitored every six months or so to ensure that the amount of control is acceptable.
I had the surgery about three years ago and would do it again in a heartbeat. Prior to the surgery, I tried several medications, but they either made me very groggy during the day, or they interfered with other, more essential meds.
By the way, a client who has Parkinson's told me about it and with the Parkinson's the difference is amazing. He demonstrated
by turning the DBS off and allowing his Parkinson's to take over. He shook like crazy. Then he turned it back on and no shaking. Marvelous.
I hope this is good information for you. Good Luck, John
Oct 1, 2018 17:34:53 #
Parkinson's often starts with a rest tremor - that is, it doesn't effect you when you are doing something active when your hands. So at first you will be OK. Later on you may get tremors that effect your hands when you are holding your camera up. At that point a tripod or a monopod will become very useful. The other concern is that as time passes, you may have trouble walking and stumble easily - so heavy equipment will become a problem. With a mild tremor, heavier equipment may be easier to use than lighter equipment.
Oct 1, 2018 17:55:08 #
You could get a mirrorless camera and one of those stabilized 3 axis mounts.
Oct 1, 2018 18:05:01 #
Bob, I'm 75 and on some pretty powerful cancer drugs.
I'm pretty shaky but I've found that I can shoot hand held with my Sony A6500 with 5 axis in body stabilization using my 18-105mm lens.
I have to use a tripod for telephoto and macro shooting but manage OK.
Good luck,
Rick
I'm pretty shaky but I've found that I can shoot hand held with my Sony A6500 with 5 axis in body stabilization using my 18-105mm lens.
I have to use a tripod for telephoto and macro shooting but manage OK.
Good luck,
Rick
Oct 2, 2018 05:16:10 #
wdross
Loc: Castle Rock, Colorado
BobT wrote:
I've recently been diagnosed with Parkinson's. So as an avid hobby photographer what can I expect in the future? Will a tripod become a must-use piece of equipment. So far. I'm still pretty steady.
I would greatly appreciate hearing from any UHHers who may also have this disease. Thank you.
I would greatly appreciate hearing from any UHHers who may also have this disease. Thank you.
Short of the talked about surgery, there are several IBIS cameras available. At the top of the list is Olympus with Panasonic and Sony not far behind. I have handheld 2 and 4 second shots. Of course, I was trying to be as steady as possible. But the camera's IBIS will help delay any need for more supplemental measures at this time.
Oct 2, 2018 06:26:06 #
ed2056
Loc: Warwick, RI
I don't have parkinsons but a recent bout with cancer and radiation has left me with a visible shake. Unless i'm in bright lighting with a fast shutter i use a tripod exclusively now. If anything it has helped my work as the time it takes to setup and shoot gets me to concentrate on what i'm doing and set up the shot properly. Good luck and don't let it stop you.
Oct 2, 2018 06:31:22 #
My doctor recommended I try a drug called Carbadopa Lupadopa. It's working for me and takes away my tremors. Ask you doctor if it could be right for you. Made a big difference in my life and has extended the time I can shoot without going to a tripod.
I also recommend you get lenses with Vibration Controls. This will help steady the camers.
I also recommend you get lenses with Vibration Controls. This will help steady the camers.
Oct 2, 2018 07:15:26 #
Hi Bob
If needing to use a tripod all the time seems a bit much for you, why not try a monopod with a spike and a remote shutter release - some monopods double as a hiking stick and could prove useful any-way. Some have tripod feet which can fold down for hard surfaces. Best of luck in the future. Del.
If needing to use a tripod all the time seems a bit much for you, why not try a monopod with a spike and a remote shutter release - some monopods double as a hiking stick and could prove useful any-way. Some have tripod feet which can fold down for hard surfaces. Best of luck in the future. Del.
Oct 2, 2018 07:41:22 #
vermis
Loc: Atlanta, GA
Bob, I am a neurologist and I see a large amount of PD patients with the majority continuing to be functional. Here are a few things: have your neurologist start Azilect (rasagiline) which MAY have some positive effects on delaying the progress (may because this was not FDA approved as an indication). Carbidopa/levodpa also known as Sinemet is the standard treatment but this is mainly to help you "move" only if you are very slow to move. I don't like to start it early especially if there is no indication for it. There are several options for tremor but as I am sure you know, the tremor is mostly resting and improves with action. I am sure your neurologist would talk to you about options to help with the tremor if it really causes problems. Most important: exercise like there is no end, have a positive attitude and keep on going. You CAN NOT give up photography, there are many solutions to problems but giving up something you like is not one of them. The exercise is either cardiac or resistance with weights and of course, better yet both. Tai-Chi is wonderful to help with balance.
Oct 2, 2018 07:48:36 #
Talk to your neurologist and make sure you see one who specializes in movement disorders——progression of the disease is variable.dbs is usually reserved for medication failures.
Oct 2, 2018 08:18:36 #
Bob,
I have Parkinson's - diagnosed in 2011. It impacts my right hand which makes it a bit difficult holding steady with shutter release and auto focus. Most of my symptoms are handled by Carbidopa/levadopa (Sinemet) taken four times a day. I use a monopod for longer focal lengths and I have also found a handstrap, attached to my two DSLR's, helpful. It's a progressive disease so it is unlikely you wake up one day to find a dramatic change. I imagine you are under the care of a neurologist? My neurologist was Michael J.Fox's doctor. A phenomenal doctor who helped me immensely. I'm 81.
Your ability to successfully participate in photography may not be affected at all.
Good luck.
Mark
I have Parkinson's - diagnosed in 2011. It impacts my right hand which makes it a bit difficult holding steady with shutter release and auto focus. Most of my symptoms are handled by Carbidopa/levadopa (Sinemet) taken four times a day. I use a monopod for longer focal lengths and I have also found a handstrap, attached to my two DSLR's, helpful. It's a progressive disease so it is unlikely you wake up one day to find a dramatic change. I imagine you are under the care of a neurologist? My neurologist was Michael J.Fox's doctor. A phenomenal doctor who helped me immensely. I'm 81.
Your ability to successfully participate in photography may not be affected at all.
Good luck.
Mark
BobT wrote:
I've recently been diagnosed with Parkinson's. So as an avid hobby photographer what can I expect in the future? Will a tripod become a must-use piece of equipment. So far. I'm still pretty steady.
I would greatly appreciate hearing from any UHHers who may also have this disease. Thank you.
I would greatly appreciate hearing from any UHHers who may also have this disease. Thank you.
Oct 2, 2018 08:21:48 #
Bob, I have essential tremors. I had deep brain stimulation surgery last May and I am rock steady now. Before the surgery I could barely eat and took 12 pills a day, now I take 4 and will soon be off all meds. Check in to the DBS. Send me a message if you would like to talk about it.
Oct 2, 2018 08:23:07 #
Bob, I have essential tremors. I had deep brain stimulation surgery last May and I am rock steady now. Before the surgery I could barely eat and took 12 pills a day, now I take 4 and will soon be off all meds. Check in to the DBS. Send me a message if you would like to talk about it.
Oct 2, 2018 08:23:53 #
JHS wrote:
Bob, br br There is an operation that greatly hel... (show quote)
Bob, one of my acquaintances is doing his PhD thesis in electrical engineering (oddly enough) on Parkinson's disease treatment in conjunction with a medical research effort on the condition at UAB (The University of Alabama at Birmingham.) There is a lot of research into this condition happening even as I write this. So take heart!
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