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  1. 5 points
    This exercise post is near and dear to my heart. I am 55 years old and in pretty good shape. I have always been physically active. I've been involved in martial arts for years and I also enjoy going to the gym and lifting weights, among other things. I was diagnosed about 3 years ago. Even before my diagnosis I was starting to slow down on some of my activities because of excessive fatigue. I still go to the gym and my martial arts classes. I just don't try to be superwoman anymore. When I read that study that says intensive exercise will stop progression of the disease I was excited and thought "Yay! This proves what I already believed" because my progression has seemed to be slow so far. So I jumped on the bandwagon and increased my exercise. I enrolled in some classes at a local MMA school called "Fight Fit" which is basically an extremely difficult HIIT class that lasts for an entire hour. I was very proud of myself when I made it through the first class. However, this was not without a lot of increased tremors going on and literally almost no energy to get myself in the car and drive the 2 miles back home to my house. The next day I was exhausted and I felt like every last bit of dopamine had been wiped out of my body. Hmm...I thought exercise was supposed to make you better and increase your dopamine production. Where are those endorphins? I don't like to give up because like I said...I'm hardheaded, I'm a woman and I think I can be superwoman. The article says I need intensive exercise will make me better so I'm not giving up. I ended up going to 2 more classes. When it was time to go to the next class I literally cringed inside. I couldn't bring myself to go and do that to my body again. I loved the actual exercise and the comaraderie of the other women in the class. But I just felt sooo bad after the class and the next day. My symptoms actually started getting worse and then I started feeling depressed. Yes I know that I can do other exercise but I've actually been having a hard time in some of my martial arts classes lately because of an increase in tremors. I actually quit my Saturday class cause they practiced for 3 hours. I have felt like a failure because I'm now doing less exercise than I was before diagnosis. Yet everybody tells us that you must do intensive exercise. I talked to a friend who's had this disease for 25 years. She made me realize a few things about this "study" that is posted all over the internet. 1) This is not a scientific study by any means. 2) Everybody progresses at a different rate so you can't compare one person to another. 3) There's no way to determine how much somebody would have progressed in 6 months if they had not done the exercise. Seriously, there's no baseline. Six months is a very short time in the space of a lifetime. They might not have gotten worse during that time. 4) What the hell is "intensive exercise?" The study doesn't even mention how long the subjects exercised for. Obviously intensive exercise will be different for every person. So I decided I'm not going to let myself get depressed because I can no longer do "intensive exercise". I'm going to continue doing whatever I can. I'm really sick of all the people who post pictures of themselves doing bodybuilding, running marathons and similar things and trying to tell the PD community that they are not progressing because they are doing this intensive level of exercise. Maybe the truth is that their disease is progressing slowly so therefore they have the ability to continue working out like that and not the reverse. Seriously, an entire year before I ever had a tremor or other symptom of PD I suffered with extreme fatigue. At the time I was going to the gym doing a five day split, lifting very heavy (for a 110 pd woman). I was so tired in the evenings, I could barely make dinner for myself and my teenage son, then I would be crawling into the bed. My mom kept telling me to go see the doctor because that wasn't normal. Of course, I refused because I thought it was just because I had increased my weight lifting routine and I just needed to get used to it. I didn't want to quit because I had a goal. Anyway, the doctor's would have never figured out what was wrong with me even if I had gone cause I was misdiagnosed even when my tremors started manifesting. I'd like to end all this rambling to say that PWP should always keep moving and do whatever exercise they are capable of doing even if it's just walking. Yes, it will help you to feel better and probably help to keep your muscles from becoming rigid and locking up on you. However, there is no scientific evidence that it will keep you from progressing. Likewise, you are guaranteed to feel like crap if you give up and lay in the bed all day.
  2. 5 points
    Hello Debsten, One of the things I did and still do when I was diagnosed at 35 years old is to celebrate everything. The more we celebrate our every accomplishment the more dopamine our brains will produce. I celebrate getting out of the chair on the first time. I celebrate being able to drive, go to work, not having something terminal, and so on. This sounds cheesy but it does help putting you in a more positive mind set. This disease responds well to positivity and a can do attitude. Of all the people I have met and talked to, it was the ones that were positive and tried hard to stay there that do better. Exercise is also the only natural way I have seen to help this disease. I come from a back ground of treating all my ailments with naturopathic and home remedies first. With Parkinson's I have found only exercise to provide positive results for short and long term. Most MDS's you find will tell you if you feel better using said natural treatment then do it. I have and still continue with diet changes, supplements and acupuncture. Unfortunately there is little to no scientific data for natural remedies that doctors can access to say this works better than this treatment. I went from taking the occasional advil before diagnosis to taking 330 pills a month now. It is unfortunate but after 8 months of trying to fight my stiffness, tremors, and slowness of movement I could find nothing to relieve my symptoms that wasn't prescribed. Exercise helped but it did not last long enough to cover daily symptoms. Once I started with Cardopa/levodopa and azilect I found the dark cloud of doom that I had no idea was following me, had disappeared. I feel so much better now and I am still using all of the natural treatments as before. I found that once I could ease the symptoms and accept what was happing to me, my life got so much better. I can honestly say I was very happy prior to diagnosis and I am even happier now 3 years later. It is hard to explain but going through the process of getting diagnosed to acceptance changes your priorities and life goals, then you look back and realize, life is good, and in the reality of it all I could have it a lot worse. It is tough. Trust me we have all been where you are. It is ok to get angry, it is ok to cry, it is ok to scream. Just remind yourself of all that you have and still have. Soon that bright light from the future you thought you lost will start to shine again. I promise it gets better. Blessings Feel free to ask any question you might have.
  3. 5 points
    Hello BlueLion, Don't say you're sad for your young kids. For one thing you are still young and chances are you will witness new discoveries (meds) /maybe a cure ?? in your lifetime. Second, in my experience, my son (whom I had at age 40, some 6 years after diagnosis ) has grown up with a PD mom and has evolved into a very considerate person, always there to help others in difficult situations and does not seem to have been affected by his mom's disease. He will turn 25 on December 26 and is a very positive and successful young man. On April 1st last, I celebrated my 30th anniversary of diagnosis. Am still around, doing reasonably well (I had surgery in the meantime). PD is not a life sentence. You can keep an almost normal life (except for taking meds). So enjoy life and treasure every moment. Take care, Mireille
  4. 4 points
    I find moving around - walking makes it go away faster. It seems to be the shot of adrenalin for me and as soon as I get the adrenalin out of my system I'm fine. It's worse when I'm sitting or confined.
  5. 4 points
    Hi Superdecooper, it is funny you call it sleep jealousy.It's like we are now in a kind of sleep competition with our dw.I see it differently,because of our situation.I doubt if any pwp ever gets 8hrs of sleep without sleep aids.If you get 6hrs of sleep with Azilect,that is a big deal.I know that if you stop any PD meds the symptoms will reappear,and unfortunately we are in this for a long run,unless there is a breakthrough for a cure one day.I understand the "why me"question still lingers in the minds of most parkies,because acceptance is a difficult struggle,especially as a young pwp.I guess the earlier one accepts this new journey,the better.It is tough on everyone including the families.Hope is on the horizon,they say.May the major breakthrough happen in our lifetime.Stay positive!
  6. 4 points
    I'm letting DW sleep. It's almost 3AM. Just finished cleaning up after my almost 5 year old daughter threw up for the 5th time tonight since going to bed. I guess that's one bright side to PD effects like insomnia and a poor sense of smell. Poor kid. Just hope she feels better tomorrow.
  7. 4 points
    . Good evening everyone Good call Dianne , spring approaches. Cheered on by LADy. The buckets were hung on the trees with care, with hope that the springtime soon would be there. oops, wrong poem,, I think its a little early yet but everyone else was jumping to it. I put out 30 as a token start. Another 70 to go. and totally unrelated to anything: Well, that is it for the great outdoors for another day. It is now dark out. The animals change shifts. The doves go to roost, replaced by the hoot owl and the rabbits shudder. Puppies get called in for supper and a place by the warm hearth, the void in the outside darkness fills with sneaky and bold racoons who check the wire and wonder if the chickens are all safe. The pesky black squirrels cuddle up in hollow tree trunks, exchanging stories about bird feeders and sunflower seeds as they fall asleep. With one ear open to the possibility of big toothed pine martins coming on for the night shift and looking for sleepy squirrels. The daytime squeaks were likely just cute song birds tweeting news around the trees. But when the sun is down the same squeaky sound plays to the minds' ears like the sound of a weasel finding a nest of mice. And was that yowling sound at the back door one of my old toothless Tomcats telling the night sky about his younger days when he ruled the barn or was it a wild Cat! Yes with a capital C, and nobody can even say what a wild Cat is really. Cripes what just made my WALMART automatic motion sensor light come on outside. I was going to go get my gloves that I forgot in the car so that they will be warm to wear in the morning. But neighbour Roy said the guys at the feed mill told him that Peter saw a big cougar, and of course: "yes it was a big one" he had repeated. Did he say it had red eyes, and a sore tooth, I got other gloves to wear anyways and I am too damn tired, yes too tired to go out into the dark right now. That is why I have more than one pair of gloves he reassured himself and sat by the dog at the fire. He settled in for a little nap and fell into a deep sleep, waking up to the sound of howling coyotes across the field and the weight of the young dog jumping into his lap. It was scared a and quivering at the sound of his distant relatives that never got near a hearth; the pack were just making small talk with upward pointed noises to the man in the moon asking him how they should divide up this bag of fish guts they found by the fishing shacks at the river,. Meanwhile in the house by the fire on the lazy old boy recliner, the dog quvered in sync with the man's Parkinsons tremors and he finally had to laugh at himself and the pot licking dog.In the morning I will have to tell Peter about these coyotes across the field, and that field isnt very wide he now reasoned. Did I say coyotes, cause I am sure now that they are Siberian Wolves, Big and hungry and fearless they are! In the dark that is. That is pure fiction everyone, I am not afraid of the dark if anyone thinks that was about me. Sleep well you all. jb
  8. 4 points
    hI dIANNE, Another year slips around. Another anniversary of remembering his Life as well as his Death. I learn from you, my friend. You are a great person Dianne who has been through a lot. Where I would see a wall of dark trees hiding a murky puddle of mud, You continue to part the branches, find a forward path, the sun streams into the clearing with you (or are you the sun?) and the mud puddle becomes cute little pond of water, floating a family of little fuzzy ducks, and surrounded by flowers, green grass and forest animals coming to drink from the clear water. I hope that your weekend is good. All the best to you, jb
  9. 4 points
    You are a mom. It's probably in your DNA to worry forever. Take care.
  10. 4 points
    Pure nonsense! The top 1% of earners pay 45% of individual income taxes. The top 20% of earners pay a whopping 84% of individual income taxes. Forty five percent of Americans pay no taxes at all. How much of a tax break should people get when they pay absolutely no taxes and when many get 'money back' (earned income tax credit, for example) when they didn't pay anything in the first place? Corporations and businesses do not pay taxes. Corporations and businesses pass their taxes on to consumers. When the corporate tax rate is higher in America than other countries, corporations move off shore so that they have lower taxes to pass on to consumers and therefore lower prices giving them a competitive advantage. I don't remember you saying a word about the national debt when Obama was President. He DOUBLED the debt. Why didn't you complain about that?
  11. 4 points
    I feel so much love and support from you, dear friends. As I leave for another day at the hospital with my family I will take y'all with me. Love, Dianne
  12. 3 points
    I was awake, I was shuffling round the house when the morning laser rays of the sun started to nibble at the lid of a big old coffee can which had contained us throughout the night. It took some work for the sun to pry up the eastern edge and the sky began to take shape. I guess the sun had done this before and he knew how to gho about it. Happy Easter everyone. jb
  13. 3 points
    Oh, we have four levels of classes. Bob, who was doing the Bosu Ball, is in the "Blue Class" I got bumped into "Orange Class" and like the chart implies, some days I feel like I'm maxed out on 10. The cardiologist has approved my intense workouts, with a bpm hitting 161! Normally I hit 145 bpm. The irony is my resting heart rate is now down to 52 with the working out. Hitting the 6 0 this year, so 161 is considered 100% cardio effort. A definite "9" on the chart. My MDS, PCP, Cardio, Pulmanory, Oncology all have one comment "You look great!" The exercise is a huge part of my medical treatment! I have some other odd stuff going on [ Eosinophils off the chart] but love the new doc. Stuck his head into the office, excused himself, came back a few minutes later and apologized but after reading my chart and meeting me thought he had gone into the wrong room!
  14. 3 points
    Tjon In my personal experience, I am better off taking an evening dose even if I feel like I don't need it. I find that when I skip doses in the evening, the next day will not be as good. There is some buildup effect over time as well as you adjust. From your initial post, you seem to be on a high dose for someone that is just starting. If I am reading correctly you are titrating up to 1000 mg/day? That's a big dose. When I first started I ramped up over several months to 600 mg/day and found out the hard way that this was actually too high and causing some fluctuations (took almost a year to realize that). I added entacapone and reduced to 300 mg/day and am much better now. Everyone is different but I would recommend asking your neuro about dose schedule and if what you are currently on is too high. It is possible that the rapid titration to a high dose was for diagnostic purposes and not intended as long term therapy. (Some people are resistant to the lower doses, so some docs like to push the dose to make sure they aren't missing a benefit, for those patients that don't initially respond. It sounds like your response is not so much in question at this point though). The usual starting dose is 300 mg / day. The transition to your potential new reality may be hard but just remember that PD and happiness are not mutually exclusive. Many people are scared by the idea of a progressive disease, myself included, but progressive symptoms don't need to result in progressive unhappiness. Stay positive and enjoy the benefit that getting your meds dialed in can offer. Ed
  15. 3 points
    Here's the link: http://besthealthherbalcentre.com/testimonials.html They apparently not only cure Parkinson's, but ALS, COPD, Herpes, and just about everything else. Let's see...first time poster.... claims of a cure for just about everything. C'mon! Where's that eye roll Emoji???
  16. 3 points
    It also depends on if you are interested in getting involved in research. I would think the centers may have more opportunities....you can look into that if that interests you. No right or wrong answer If it's an MDS and you like them. Start exercising if you don't already. Don't get hung up on what's the right way...just do something you like to get moving! LAD
  17. 3 points
    Debsten, I lost my joy along the way too; but, can honestly say things have gotten better and not worse since my diagnosis (anxiety/stress-wise, that is). I found the medications to help "lift the cloud" quite a bit; and, I hope they do the same for you. When I'm having a down moment, I also try to think about the fact that things could be worse (i.e. I could have been given weeks to live, etc). It helps me to keep perspective. The hardest part for me was thinking about what I had expected my future to be like, and now coming to terms with the idea that it may not be like what I had thought!! But, I try to keep the faith and this has certainly opened my eyes to see how many people are suffering from chronic conditions and need my prayers. The things I used to complain about seem so trivial now... I hope this encourages you at least a little. Sending hugs...
  18. 3 points
    @ waruna01 (and apologies to Debsten for going slightly off-topic on your thread), Although I'm sure you mean well, and I'm happy for you that your self-diagnosis of PD was incorrect, I think your focus on loss of smell is misplaced. In my own case, I've been diagnosed with PD for over three years. Initial dx was by an experienced MDS, with positive DATscan last year as part of a clinical trial. I have movement symptoms that while mild, are absolutely classic presentations of early PD. And guess what? I still have my sense of smell. Having cooked professionally for a number of years, trust me--I would have noticed if it was going away. I asked my MDS about this. His response was basically a shrug: Sure, lots of people with PD lose their sense of smell, but some don't. In his opinion, there's a lot better diagnostic tools than having someone sniff a banana. This is a guy who did his MDS fellowship at a top PD research center, is currently conducting 3-4 clinical trials, and is part of a practice with (IIRC) more than a thousand PD patients. More to the point, there's all sorts of reasons a person with PD might want an early diagnosis. First, for many of us knowledge is power. Knowing what we have gives us choices about what to do about it, and how to plan for the future. For someone affected by non-moter symptoms such as anxiety or depression (and those of us with YOPD are especially vulnerable), knowing these feelings are caused by the same lack of dopamine that causes motor symptoms can be a lot more comforting than trying to figure out why mental health issues seemed to have suddenly come out of nowhere. For motor symptoms such as tremor, rigidity, and slowness, early treatment with PD meds can provide mild-to-significant relief. That can make it easier to exercise, be positive about the future, even forget from time to time that you have PD. The evidence is, because PD is progressive, whatever current level of relief a person gets from meds, that effect will always be *less* down the road. You can't hold off meds until 'things get bad' and expect meds to have the same efficacy they would have early on. PD isn't a death sentence. I'm healthy, active, work full time, and expect all that to continue for years to come. In my case, early diagnosis gives me an incentive to make sure these years count (more travel, more doing now what I had been putting off for later), and do some planning for the future that everyone should be doing regardless (e.g., saving more for retirement). Knowing the choices I have, and making choices with regard to things I *can* control, makes it easier to accept the things I can't control.
  19. 3 points
    Good Morning world., Well, it is a cool one again. We had one day this week where it actually got warmed up for a daytime high of -10 C, but every night it drops to -25 C, last nite it was -30C (-20F). i burn lots of firewoood but the gas furnace still has to make up some heat to keep the house warm enough. This is a new weather pattern in recent years where we get extended cold spells caused by the Artic cold air masses that stall over central Canada. Instead of moving on, pushed and maneuvered by the upper jet stream, it seems to stop and linger because the jet stream is not following the usual patterns . These upper winds should move this cold mass, break it up, allowing warm air to come up out of Colorado, Ohio or even the upper Pacific Ocean. Instead of this cold mass breaking up and swirling like a good old fashioned square dance with lots of wheeling, meshing and interaction with other masses and currents, we have this big old Wallflower parked on the dance floor and everything has to bend around it. When the hot air comes up your east coast it hits this big chunk of ice cold air and rain,snow and fog happen. The change in my weather is because the jet streams are not behaving as normal. And Science has persuaded me that the Jet streams are different because of Global Warming. Or maybe that is all fake news. But something is causing big changes and big storms. When people ask me what Parkinsons is like, they can often relate to my comparison to skating on an outdoor rink until you get really cold and then you take your gloves off and try to untie those laces and pull on your boots and tie up those laces almost like you were in slow motion. Then fish around in your pocket for the car keys and fumble with getting your frozen butt seatbelted securely in the car and then trying to hit the keyslot with your cold shaky hands. Most Canadians have a feeling for that description. Yesterday I went to town to pick up 1200 Levodopa pills for about $350.00, and a few other errands. I was chilled, my hands were cold and this double negative did not make a positive. I had cold Parky Paws going for my wallet, hiding in deep dark pockets, pulling gloves off and on and getting my list out and even had to fish out my cell phone and hit the right buttons cause my Mom phoned me from the Manor just to say hi. I am lucky to live in small town Canada where everybody has a name and things go a little slower. I was startled even myself how much of a job it has become to be chilled and do little things like put a credit card into its proper spot in my wallet. I was struggling to do just that in a local store one day and the checkout girl saw my struggle and reached out and easily took the card and placed it in the slot in my wallet with a smile and casual conversation that I was grateful for and it seemed so nice of her with no hint of trouble for her and I certainly had no indignation about her touching my wallet. There is more that I wanted to say this morning but there are things to get done. Like feed the horses. They see the light on in the kitchen and they like to whinny their hay demands over the fence at me. They will have frost on their whiskers this morning. Take care everyone, don't forget your sunscreen today Miracleseeker lol. jb.
  20. 3 points
    You have to be the one to make the effort to change how you react to people. There is only so much a person can take or is willing to be someone's emotional or physical punching bag. We all have some form of demon that we are facing. It's up to us to break free and look beyond our own problems. I do a lot of boo hooing of my life and how it's been going but I made the choices and I live with it. Whatever you are going through now you are still better off than a lot of people in the world. I see it that way. Take care.
  21. 3 points
    I would like to give my Holiday Blessings and well wishes to everyone who is a care giver. With out you the out look for us Parkies is bleek. You are the un-sung heroes in all of this. What ever you celebrate this time of year this is my prayer to you all; "May the divine in your life grant your wishes and prayers. May you find joy and peace in all that you do, have done, and continue to do. For you embody all that is good and right in this world. May divine forever wrap you in love, light and their compassion. May you forever be blessed in your life. For this I pray, in the name of all that is divine." Happy holidays and a magical new year to all Blessings Adam
  22. 3 points
  23. 3 points
    This tip is for those who are caregivers of someone bedridden, who sits a lot, or who spends a lot of time in a wheelchair and is at risk for bedsores or pressure sores. After DH was bedridden for a while, he developed a serious pressure sore on his tailbone. I was naive about the risk and thought hospice was covering all bases, but not. He cannot lie on his back and has to be regularly rotated from one side to the other. Because he is so thin, his hip bones are very prominent and soon red spots began to appear there indicating the beginning of pressure sores. I searched for a solution. I am a quilter and my favorite batting is Hobbs wool. I had a bag of leftover cuttings. Wool is resilient. It does not mat down. I had been using a sheepskin all along, but it didn’t prevent the tailbone pressure sore. The batting is spongy and I can use as many layers as I want for cushioning. We still rotate him regularly, but always with layers of wool batting under his hipbones. He has developed no bedsores there and the tailbone bedsore is healing miraculously when the hospice nurses told me it would not heal and would only get worse. The nurses are amazed and are now recommending the batting to other patients at risk for pressure sores. It is an effective, easy and relatively inexpensive solution for a difficult problem. I hope this information is of help to someone else.
  24. 3 points
    I just had my second programming after a year of DBS in- DBS out - DBS back in. I found out that Entacapone was giving me trouble afterwards. as far as my mental health goes. I am totally off that medication and down to half the CL and Amantadine and I have more energy (recently). So far, it has been worth it. I am typing easier too!
  25. 3 points
    Saw my MDS yesterday, along with the Speech Therapist. I wasn't supposed to see her again until mid-January, but I've been having problems with being dizzy when standing, been having a hard time sleeping sometimes, and meds have been wearing off and less effective overall. Plus, following my neuropsych eval back in April she had said at my July meeting that she wanted me to see the speech therapy folks due to the issues with word finding. Overall, not terribly eventful, but I did get my Rytary increased from 3x3 to 3x4 per day. I had been taking them at 8/2/8 so a six hour interval. I'll now be taking them, I think, at 7/11/4/9 which will give me a 4 hour interval during the work day, but I'll stretch it to 5 hours in the evening. We will see how that works out. For breakfast it might actually work out better. I seldom eat at home before going to work, so taking it at 7AM will mean that by the time I'm getting peckish at work I'll be at a good time to eat. Plus, the 8AM timing was tough on Wednesdays since I a standing teleconference with the India team from 7:30-8:30, and I'm usually in my boss's office for that call (boss and an India team rep in the office too), which means I either take meds 30 minutes early or late those days. This should avoid that issue. I think 11AM won't interfere too much with lunch since I can just wait until noon to eat, which I do anyway probably at least 3 days a week. Meds at 4PM likewise should be no problem with food since I rarely eat dinner before 6PM, and by 5PM I'd be good to go. The 9PM one might occasionally be a problem, as sometimes we don't eat until 7-8PM or so. But that will still be better than the 8PM med time from before since if we ate anytime before 7:30 I'll be OK. For dizziness she wants me to work more on hydration, including adding more electrolytes. We'll see if that cures it. Hope so. For difficulty sleeping she was recommending Sleepytime Tea, or chamomile tea/herbal supplements, and/or melatonin. She also thought the additional Rytary would help. Thankfully she was in agreement that anything stronger was uncalled for. The speech therapist had me do some additional tests for word finding. One of the things she had was a book with pictures and I had to name the object. Started off great, then got to some that I really struggled with. The harmonica, beaver, paint, and couple others I'm not recalling I really stumbled over. The picture of the paint board I could never come up with the name until she flipped it over. Then she had me do the "every word (not proper nouns or different forms of the same base word) starting with the letter S" in one minute. Struggled with that about like in the neuropsych eval. Got some exercises from the speech therapist to try to help out with that. As I mentioned in a DBS thread, I stated that I assumed at this point we were still several years away from even beginning to discuss DBS. She agreed with that, and said that even if I was getting close to that point, which I'm not since the meds are working well and I don't have any dyskinesias yet, that she would recommend waiting if possible for another 2-5 years. There are a ton of advancements coming down the pike for DBS that will make it less invasive and better overall. Currently battery packs and controllers are implanted in the chest or abdomen in operations that, at least in the USA, are typically done under general anesthesia. Average life for the battery packs is 5 years, so if you have DBS done at, say, 45, you're looking at an expectation of 9 total battery packs if you live to 90, so the initial pack plus 8 replacements. Some will need more, some less depending on a lot of variables. But even you only need 5, that's still a lot of surgeries to replace it. One advancement she said is in development is a battery that can be placed under the scalp, and it sounded like it was intended to last substantially longer, possibly long enough to never need replacement in your lifetime. Plus, with now I think 3 companies with FDA approval for DBS systems (IIRC they're Medtronic, Boston Scientific, and St Jude) they are all working on improving leads, lead placements, control systems, programming, and so on. We are likely in an inflection point for advances in DBS such that waiting, if tolerable, is likely the best plan. Eventually things will taper off in terms the rate of advancements. I'm hoping that we'll be in that phase of the development curve by the time I am ready to seriously consider DBS.
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