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Parkinson's. Now what?
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Oct 2, 2018 08:24:56   #
mizzee Loc: Boston,Ma
 
Also check out Olympus micro 4/3s, e-m5 II. The 5-axis in body stabilization is phenomenal. Also a remote cable release will help

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Oct 2, 2018 08:32:17   #
billnourse Loc: Bloomfield, NM
 
Not a Dr. and certainly not an expert on anything medical, but I have heard that Medical MJ has been found to help with Parkinson's as well as host of other ailments. When my niece was fighting cancer and almost unable to function she used some drops under the tongue and experienced a lot of relief.

Not trying to be the "Pusher Man" here, just offering a suggestion.

Bill

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Oct 2, 2018 09:42:30   #
jpopkin
 
Bob,

I'm not a neurologist, but an internist who has seen many Parkinson's patients over the years. "Recently diagnosed" means that right now you can't predict how rapidly progressive things will be and what impact the condition will have on you. Deep brain stimulation can be very helpful in advanced cases, but you are WAY too early to even begin thinking about that. Please listen to what Vermis has recommended. The only thing I might add is that music therapy can be extraordinarily helpful with movement disorders in Parkinson's. The very best approach to starting this is getting a consultation from a music therapist, who will help you pick out the appropriate rhythmic music to use (must be rhythmic music to your liking) as well as the right tempo. While I've seen remarkable results in gait improvement, I have no idea if it would help to have headphones on while photographing, but I can't imagine it would hurt. Worst case scenario would be that you enjoyed listening to music that was unhelpful while shooting. Who knows, maybe this would be a technique that would help others with the same problem! But I couldn't agree more with Vermis about the importance of exercise in general, and music therapy would definitely be helpful for that.

Good luck.

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Oct 2, 2018 09:58:34   #
gettingolder
 
Bob as a fellow Parkinsons photographer I have some suggestions. First -please email me re: pros/cons DBS and some treatment options..discussion here is off topic. 2nd As another subscriber said--DO NOT give up. I do not have any idea how bad your tremor is or how effective the meds are in controlling the tremor.....suggestions need to be matched to your capabilities. A few one liners
1. use a remote all the time-wired or wireless..there are pros and cons to each (I assume the tremor is in your dominant hand
2. If you get excited (ie wildlife pix or a fading spectacular sunset) the tremor will be worse-use a remote!
3. Yes-you are now tethered to a tripod. I did not have good luck with a monopod
4. Ask your MD but beta blockers (used for stage fright) helps me some with #2
5. Depending on your arm strength (non tremor arm) I have some success holding the camera with one (left) hand and using a remote with the rt hand. Heavy tripods are limiting. Practice positions holding the camera to steady it (ie elbow on the chest--checkout pistol and rifle postures--ask for suggestions on steadying techniques). Obviously use image stabilized cameras/lenses
6. My landscapes are better because I spend more time with them now--wildlife shots can still be good (tripod) but you will have have fewer opportunities. (tripod set up)
7. Shoot flying birds with ball head or gimble set up and remote. Swing the camera ONLY with the left hand. It takes some practice but it works. SEE attached
8. I cannot solve shooting water birds form a boat, I built a platform for the tripod but the wave action overcomes the stabilizing efforts.

I was diagnosed in 2007. The tremor has NOT progressed...why is another topic. I had to learn to shoot my bow left handed (non tremor side)...took me 3 yrs but am now as good as rt handed. Do NOT quit photography or anything else --adapt! email me if you want , especially re: DBS jim.heywood@gmail.com







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Oct 2, 2018 10:02:45   #
BobT Loc: southern Minnesota
 
jpopkin, and other responders,

Thanks to you and others for your words of encouragement. Happens that I am a retired public school instrumental music teacher of 35 years with a HUGE interest in classical music (1st) and Jazz(2nd) listening. So your suggestion is literally "music to my ears". Thanks so much.

I'm happy to hear that I will not need to hang up my photographic interests as well.

Thanks all,
Bob

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Oct 2, 2018 11:09:25   #
TKT Loc: New Mexico
 
Don't give up photography but adapt. I was diagnosed 4 years ago and have switched to Sony mirrorless from Nikon DSLRs and use a monopod with tripod legs in place of my cane. Used image stabiization and a little higher ISO (~400) to get a little higher shutter speeds. Exercise most important - I use camera walks as the most liked form of exercise. Tai Chi very good for balance and gate issues. Keep on trucking!

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Oct 2, 2018 11:10:56   #
Flickwet Loc: NEOhio
 
BobT wrote:
jpopkin, and other responders,

Thanks to you and others for your words of encouragement. Happens that I am a retired public school instrumental music teacher of 35 years with a HUGE interest in classical music (1st) and Jazz(2nd) listening. So your suggestion is literally "music to my ears". Thanks so much.

I'm happy to hear that I will not need to hang up my photographic interests as well.

Thanks all,
Bob


I would second the Pan-Oly M43 system. I switched to it due to two partially successful shoulder replacements. And couldn’t be happier! Weather proof, exquisite jewels are the em-5 and EM-1, made in Japan too! the stabilization is remarkable, the lenses are remarkable, and so many great ones! I’m even doing better work with the whole system.

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Oct 2, 2018 11:32:35   #
vermis Loc: Atlanta, GA
 
bounce anything unusual that you hear or were told to do, if you want, by me: hello12@bellsouth.net as I said, movement disorders and PD are a big part of what I do daily as a neurologist.
Eric

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Oct 2, 2018 11:46:41   #
KarenKaptures Loc: New Jersey
 
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.


My sister had Parkinson’s disease over 20 years and never had hand shakes. My aunt however did. Each case is different. I wish you the best.

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Oct 2, 2018 12:28:26   #
Tomkat101
 
The Deep Brain Stimulator only works for certain types of Parkinson's Disease. My sister in law had the Deep brain implant 10 years ago and it has done wonders for her. A number of my friends where tested but were not eligible to have it done.

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Oct 2, 2018 12:51:45   #
dsmeltz Loc: Philadelphia
 
See: ‘7 Years of Camera Shake: One Man's Passion for Photographing Wildlife ’ by David Plumber.

https://www.amazon.com/Years-Camera-Shake-Photographing-Wildlife/dp/178352393X

An inspiration.

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Oct 2, 2018 13:11:37   #
wdross Loc: Castle Rock, Colorado
 
vermis wrote:
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.
Bob, I am a neurologist and I see a large amount o... (show quote)


Good sensible approach. Will have to remember you advice should I find myself in the same spot someday. Keep the body in as good a physical condition as possible and them go to the camera mechanicals.

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Oct 2, 2018 13:28:37   #
markie1425 Loc: Bryn Mawr, PA
 
JHS wrote:
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
Bob, br br There is an operation that greatly hel... (show quote)


Thank you, thank you for your informative post. Didn't know that before. Even though I'm not in that situation, there may be many others who would love to know about that device.

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Oct 2, 2018 15:06:34   #
DChalfy Loc: Minneapolis, MN
 
vermis wrote:
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.
Bob, I am a neurologist and I see a large amount o... (show quote)


Vermis, what a brilliant answer, especially sharing your expertise and emphasis on not giving up photography. Even though I do not have PD, I am thankful we have people like yourself, so willing to give of themselves.

Bob, keep on going and doing what you love. As you can see, there are options available for you to investigate with your neurologist. Take it from a Marine, there is no surrender when surrounded, simply charge in another direction. As to practical matters, if it should come to pass that tremors affect your photography, a tripod and electronic cable release will help immensely. Stay strong, get out there and photograph!

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Oct 2, 2018 17:22:19   #
Tomcatman
 
I have some very interesting things that may help you alot, pm me if you are interested. Tom

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