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Borrego Springs, CA

Saturday, January 30, 2016

A no brainer?

Over the last ten years or so, I’ve experienced an increase in the shakiness of my hands… tremors.  I just figured it was a part of growing older.  The shakes are worse under stress.  It’s kind of embarrassing at times.  Driving my big rig is stressful for me, and I’ve even had people ask me if I have Parkinson’s disease when I’ve stopped to gas up the rig or sign in at a campground. 

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                       Tonight’s photos are from around Jojoba Hills… this is Pond 1 of six in the park.

The tremors have gotten progressively worse over time, and presently it’s a real challenge to even butter a piece of toast.  It’s really effecting the quality of my life.  At the Christmas Dinner at the park, I had to ask someone to put some gravy on my mashed potatoes.  If I had tried to do it, that gravy would have ended up all over everything and everyone.

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                                                                    Croc Creek Mill Pond

About two weeks ago, a couple pulled up to my site in their golf cart and knocked on my door.  They introduced themselves and then invited me to attend a Deep Brain Stimulation (DBS) information meeting.  I had no idea what they were talking about.  It seems someone in the park had told them about my tremors, and the wife, Lou, related to me how DBS had helped eliminate her tremors.

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I signed up to attend, and then did some investigating on the internet.  That meeting happened this morning.

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                The air gun range in the park.  All those yellow things in the distance are what I shoot at.

Dr. Adam Burdick, a neurosurgeon from Scripps Green Hospital, gave the presentation.  He explained the difference between Parkinson’s disease and essential tremors.  Listening to him, I’d say I have essential tremors. 

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                                  The flowers are in front of my patio.  This one is my favorite.

The clincher was when he said that folks with essential tremors experience a lessening after an alcoholic drink.  If I have a glass of sherry in the evening, I’ve found I can actually write legibly.  The evening is when I fill out forms or write checks.

IMG_1263Those silver points around the center of the flower are actually the background between the petals.  Kind of neat aren’t they?

So what is Deep Brain Stimulation?  Well, in a nutshell, it’s brain surgery.  A probe is inserted into the deepest reaches of your brain, and is then attached by thin wires to a battery source that is implanted under the skin just below your collar bone.  Kind of like a pace maker. 

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The patient is actually awake for much of the surgery so the probe/electrode can be placed in the exact right spot.  You have to be awake to converse with the surgeon during this placement.  Seems kind of spooky to me, but the results are astounding.

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Unless you’ve had this problem, it’s hard to imagine the frustration of not being able to do things that seem so natural and easy.  It is progressive and can only get worse.  The surgery doesn’t cure the condition (there is no cure), but alleviates the symptoms.  It takes some time to fine tune the system after the surgery, so that has to be taken into consideration also.  I’ve got some thinking to do…

I’ll leave you tonight with a photo of Emma on vigil.

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Can’t have any of those little lizards stalking my oranges, don’t ya know!

Thanks for stopping by… talk to you later,  Judy

50 comments:

  1. Sounds like it is definitely worth considering. As I have gotten older, I have come to accept that medical treatments will be part of my life. As long as they can improve quality of life, I will be glad that they are there.

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  2. Big thinking to go with this. Have you tried the drink?
    That first flower is just beautiful I have never seen one like that before. All the flowers are pretty.

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  3. OR .... You could just carry a flask!! A little tot in your coffee in the mornings (when you are not having a "driving day") and a Sherry before dinner ... you might just mellow your way through the hours with a smile on your face! A might less invasive than brain implants!

    Just joking. Research is called for and a second (or third) opinion, for sure. Best wishes for useful information.

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  4. Love the flower photos.
    I have heard of DBS. We even saw a segment on TV about it. They talked about the success. Patients they interviewed felt no pain during the surgery. All the patients experienced some level of relief. At out age, surgery must to taken very seriously. Prayers that you will decide what is best for you.

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  5. An interesting concept, more research would be appropriate I think.

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  6. Wishing you the best as you make your decision Judy!

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  7. How nice to have neighbors looking out for your wellbeing ��

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  8. My grandson had DBS several years ago to help control his CP and severe dystonia. It was relatively successful at first but then it had to be turned off. Is very expensive.

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  9. I think a lot of people have this problem. Keep us posted.

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  10. The inability to butter toast would not be that much of a problem for me but not being able to pour my own gravy would decide it for me. The very expensive comment made by Cathi Harry above would most likely prohibit that however and I would be self medicating with booze until the shakes got so bad that I couldn't get the drink to my mouth.

    You do have some thinking to do but if it were me I would go for it IF I could afford it.

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  11. Sure hope things work out for you and those tremors go away.

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  12. I'm all for alleviating symptoms! Best wishes for an intelligent decision on this. Nice to hear about options.

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  13. Love your favourite orange flower photo, it is beautiful!

    This surgery definitely sounds interesting, especially if it does helps to alleviate the symptoms. Quality of life is very important. Do lots of research and talk to as many people as you can that have had this surgery. I am sure there are forums on the internet that can also help to answer some of your questions too.

    www.travelwithkevinandruth.com

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  14. we were aware of your shaky hands when we were there. Craig found it amazing you could take photographs. Can you contact your doctors in Minnasota and ask for a work - up? This would be a good reason to add to your need to go back thru South Dakota to get that DL. Keep us posted.

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  15. Hi Judy, Thank you for sharing such a personal and important part of your life with us. It appears that President Clinton along with many older folks share this disorder although it can happen to younger people too. There are some great videos on YouTube with people who have had the surgery and they show how their tremors look with the device turned off and then they click it back on and show the dramatic change. There is a good video by a girl named - trakat77 - who explains the surgery and eventually how they someday have to go back in and change the battery and what happened when one of the internal electrical wires got frayed - she was very informative and not too explicit - Anyway, the tremors may become worse with emotional stress, fatigue, caffeine, extreme temperatures - drugs do not seem to be of much help and have a lot of side affects - You should definitely do a lot of research and you might try eliminating caffeine and having some wine instead. Also, should investigate medical marijuana - either smoking or eating in a brownie - it has been used for epilepsy, seizures, and Parkinsons with great results. California is the perfect place to get that prescription and try it - maybe that is another reason you were led to Jojoba Hills. Good Luck - Wishing you the Best - Cindy

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  16. Lots of interesting commentary on this from your readers, Judy. I do know that surgery at our age is harder than you expect it to be, but the end results are usually pretty positive. Either way, I do like the drinking suggestions. And smoking a little pot might be really good for you. The stuff only makes me dizzy and woozy so haven't tried it for a bazillion years, but who knows. Good luck with this one, Judy. I know how frustrating this has been for you, and if as you said it only gets worse, maybe something to really consider. Isn't this what Katherine Hepburn had? You are in great company!

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  17. Oh my. I would think that Mayo is the place for more information for that decision. Research it and in the meantime have a drink! That beautiful flower is a Gazania, they close at night and are basically closed on cloudy days too, a very drought resistant annual here in Minnesota.
    I am a bit shaky some days too, it happens with age...and for me stress. :)

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  18. I am very sorry you have such problems. I hope you come to the right conclusion. Good luck.

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  19. I would definitely look into it, but tend to think Mayos would be the place to go..or a well known University Hospital.. It is amazing what they can do.My Mom had those tremors to..Maybe that's why she had a Gin Martini once in a while..WIT..whatever it takes!!!

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  20. P.S. the THC content in today's marijuana is many times more potent than it was in the 70's - so it really only takes a little bit - I'm neutral in opinion on using pot - but it would definitely be on my list ahead of surgery.

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  21. I've heard of DBS and have seen it on fictional TV--maybe Gray's Anatomy? It seems to me to be equally exciting and scary. I hate those "equally" questions. Maybe more research will change that balance.

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  22. It could be an interesting process to go through .. Scary but if it helps your situation that would wonderful .. But in the mean time have a glass of a little something, if it takes the edge off, sure can't hurt ..

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  23. quality of life is what the aging process is all about. . .you have so many talents and abilities that you must do whatever is necessary to maintain your quality of life. . .I have no doubt you will research and make the right decision for you. . .I hope you will keep us all informed. . .wishing you all the best!

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  24. In case you didn't see it, Dr. Sanjay Gupta had a 3 hr TV program on CNN a few weeks ago on medical cannabis for babies and children with seizures. It is well worth watching, and is available on YouTube (https://www.youtube.com/watch?v=Z3IMfIQ_K6U). Sorry I don't know how to do a link in Comments, but you could cut and paste. There are growers in Colorado who have specialized in growing marijuana for this purpose, and somehow they remove the THC, so you won't get the effects of the regular stuff. You need to find a doctor to get you a prescription though, but I am sure that wouldn't be a problem in CA. It can be expensive, but if it works, it would really be worth it. I'd suggest looking into the medical cannabis, regular surgery and implant, and definitely have a drink now and then. Can you see the irony of a drink preventing tremors, when a few drinks often produce them! Good luck in deciding what you will do, but it's wonderful that there seem to be options for you.

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  25. Crikey ... those flowers are so beautiful and so is Emma. She's lookin' real good, aye?? And yes ...... boy oh boy do you have some thinking to do. I will be thinking of you as you make your decisions. I'm sure you will make the right ones. I have always suffered with tremors and they did get worse as I got older. A few years back they got so bad that I too was feeling embarrassed. I completely changed my way of life and strove to live a much healthier existence. I cut out ALL caffeine, and processed foods. That is all I did and the improvement was phenomenal. I still shake a bit, especially at stressful times, but my life is certainly a lot better for the small sacrifices I make. I know this may not be the answer for you Judy but I do hope you find something that can help you. It is good that you are willing to ask for help and I know it's hard but try not to be embarrassed. Good people are everywhere and understand that life is not always easy for everyone. Most people are more than happy to lend a helping hand. No matter what the circumstances. My thoughts are with you. Please let us know how you are doing?? Lynn, Charlie's Mum.

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  26. I too have Essential Tremors, also known as Familial Tremors. Shakes occur in movement for Essential Tremors, while in Parkinson the shakes occur at rest. I read an article years ago that stated ET is caused by a mutant gene that one inherits from a parent who has ET. Offspring has a 50/50 chance of getting ET. My father had ET, and sadly all of his children have ET. We have learned to laugh about it. Children will always comment as to why I shake, and I now tell them that I inherited a mutant gene from my dad call ET or Essential Tremors. That produces a funny look from them as they try to figure out what I just told them. I found writing with a pen or pencil to be frustrating, typing is no problem so far. I don't drink alcohol. When I did, I notice one glass work to calm the shakes for just a short period of time, but any other additional drinks didn't make a difference. There are meds out there to help with tremors, but after a period of time that too doesn't work. I'm not on any meds. I don't drink coffee since that makes the shakes worse. Teas don't have the same effect as coffee on producing the uncomfortable/embarrassing shakes. Chamomile tea is the best to relax oneself. I'm also gluten free. I notice that seemed to help diminish the shakes too (similar to Charliedownunder's cutting the processed food). You are not alone. :) The photos of your flowers are beautiful!

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  27. Scripts is an excellent hospital - I wouldn't hesitate to have surgery there. A second opinion would always be a good idea with something like this, of course. Pretty exciting that there might be a way to reduce or eliminate the shaking. Good luck, whatever you decide to do. :)

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  28. Sounds intriguing. When something affects quality of life, it makes sense to start investigating some relief!

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  29. A lurker who enjoys your blog, I also have ET (aka benign tremor) which has gotten worse as I have gotten older - an "inheritance" from my Mom. In addition to DBS, there are meds for it too, one of the more commonly prescribed meds being inderal. I've tried inderal and, on a daily basis, it turns me into a zombie, but I can take it on occasion when I want to stop the tremor for a few hours. There is also a specially designed spoon called Liftware, which counteracts the hand tremors when eating (www.liftware.com); my Mom got one for Christmas and says that it does work and her tremor is pronounced. Having a drink also works for me, one of the more enjoyable meds. :)

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  30. Missed this when it got posted... looks like all the previous comments say pretty much what I think as well... I'm sure you'll decide what's best for you. Your trembles sure don't affect your macro photos... very nice!

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  31. It must be an overwhelming frustration to have shaking like that & it's something I don't know how I would or could handle. I just cannot imagine not being able to pour something or do ordinary things with my hands. I really do hope you can find relief from this debilitating medical condition. Wishing you all the best in your decisions & treatments.

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  32. I am just amazed at all the information provided by your commenters. I find that one of the most wonderful things about blogs. It really does reinforce the importance of sharing the joys and problems of life. We are amazed at what the medical profession can do these days to help people, especially the elderly, with the problems of aging. David's cancer is not one of those but what they have done to keep him alive for the past 4 years is simply wonderful. I too recommend a second opinion if you are thinking seriously about this surgery. I hope your insurance will cover it. It always seems so sad when people cannot improve their quality of life with medical procedures simply because they can't afford them. Best of luck in researching this and coming to a decision. How lucky to be in a community where they brought this possibility to you. I have a wonderful opinion of your park because of what you've shared.

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  33. My 86 year old mother has essential tremors too. She is not a candidate for DBS and I don't think she needs any alcohol either. LOL Hers come and go and get quite bad at times. I did a little research and read something that dehydration can cause them. She is notorious for not drinking enough, so we try to push fluids. The doctor said she needs 48 oz of liquid a day. We give her Pedialyte and Gator Aid, per the doctors instructions. The tremors seem to be a little less frequent, but I'm not sure why. Just a thought.

    Love the flower pictures.

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  34. Our daughter...43 years old...has been diagnosed with essential tremors. I will be asking her if she has heard of DBS. Good luck Judy. I know you will make the best choice for you.

    Beautiful flowers and as always, love those Emma pics!

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  35. A good diagnosis with multiple opinions is the start of your research. I know you'll make the best decision. Good luck.

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  36. I have had ET for about 20 years now(64). I have Very high anxiety that makes going to sleep difficult. My shrink at the time decided that with my high blood pressure, I was best off taking xanex, because I awake refreshed and no hangover. From your reading you know it is a drug that suppresses the tremor. It is a Benzo, si it is addictive. All these years I have never had to up my dose, because I pick a week to voluntarilly detox. There is withdrawal, and sleep is out of the question for that week. But xanex has a short halflife so the week off, really does get it out of my system, to be able to restarr "clean." Has to be easier to get xanex script than canibis. I am fresh in the am and tremors are almost nonexistant, but the shakes start coming back by 3 and There is nothing my hands can do after about 8. I kind of think trying a noninvasive treatment first might be something to try. If that is all it takes, no slicing open your brain. I am well known for generally getting three medical opinions before a big surgery. Find out who THE top surgeons are. Fly out to them. You could do recovery in a rehab clinic or just stay in a hotel until you have enough stamina to get back to the coach. A few more ideas to ponder. Big university teaching hospitals have the best stats for successful treatments. Eye makeup is fun, isn't it? You're in good company; Bill Clinton has one too.

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  37. Hi Judy , I wish so much that you would blog more often !!!!!!! Have you picked any oranges off your tree yet ? Is there a farmers market in Temecula - have you ever gone to it ? Were you hit with any of the big winds that came thru lately ? How does Emma spend her days ? Love your photos too - Take care - Cindy

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  38. I'm sure you'll do plenty or research on this. My advice is always to go for it. You are way too young to have to live with anything. I walked out of my doctor's office to find another doctor after he told me to live with rotator cuff that had one complete tear and one partial tear. My current doctor told me I healed at a faster rate then his much younger patients and I told him it had to have a 25 year warrenty, since I don't intend to paddle much after I'm 100. Will have the other shoulder done this fall. And my 91 year old friend had hip surgery last March and this fall, was riding his bike, hiking, and paddling again. He even went cross country skiing this winter.

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  39. I missed this post when it first came out. I'm sure the tremors are frustrating, particularly with photography and now shooting...and of course butter and gravy. Lots of thinking and research to do...does sound sort of intimidating to have them poking around in your brain. I'd want to know how many of these types of surgeries they do each year and the success rate, and the long term prognosis. And then I'd still have to think on it. Getting older is not for the faint of heart.

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  40. They actually did an episode on Grey's Anatomy on this with a guy whose tremors were so bad he wouldn't walk his daughter down the aisle. Amazing what they can do these days to make our lives better!

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