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TexasTom

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Everything posted by TexasTom

  1. For those with DBS who are having issues getting everything dialed in, please reach out to your Medtronics (if applicable) rep to join you at your MDS programming session. DBS is still an art, as much as a science, so your MDS might be working on a 10 x 10 matrix that helps 90% of their patients. The other 10% have to realize the possible matrix is like a 200 x 200 spreadsheet so you may need something different. DBS isn't a cure all, but to have a few more years of being productive at work it was well worth it for me. Time is limited, so I'm out of here.
  2. Over all, still positive here. The "loose their speech" does affect some, but in my Parkinson's meetings & Rock Steady Boxing class I haven't seen a decline of speech. One of the things I did not expect was less chocking/gagging. I love Tortilla chips, but often eating out I was gagging so badly I just didn't touch them, so that has improved. Freezing. Much improvement. Balance... I'd say a wash, I don't fall often but pre and post about the same. Buttoning a shirt, shoe laces... Huge Improvement with finger manipulation. Reduction of medication has been an improvement. Dystonia... used to wake me in the middle of the night with twisted hand and twisted foot. Huge Improvement! Peripheral Neuropathy. Much more aware for the burning. Irony is we addressed the Dystonia, so now I am aware of Neuropathy issues not fun at all. Adding Gapentin to my daily meds. Nothing new as I remember thinking my feet were on fire a long time prior to DBS. Cognitive... wash as I know I'd space out before DBS. I suspect this is just a progression of Parkinson's. Adding Donepezil (Generic Aricept) to my medication to help with memory. I gave up flying years before my Parkinson's Dx. Weight, I had dropped from 300# to 235 (??) at the time of surgery. Went back up to 245# and have been holding around 240# since then. Bottom line is I had to cut out snaking on cheese and crackers when taking meds every three hours. Now with meds every four hours, gives time to snack. Sigh. There is risk, but addressing DYSTONIA and wearing off of Sinemet was my reasons behind DBS. So it addressed those. Not a "fix for Parkinson's" at all. If it gives me a few more good years, why not. Enjoying a walk with my faithful Golden is worth every moment. There are risk with DBS, doesn't cure anything, but I had two reasons (dystonia & med wear off) that it addressed. I returned to boxing too soon (take it easy for eight to ten weeks) no regrets. I know some people who didn't fair well with DBS, but I'd say over 90% had improvements worth while.
  3. Stalevo = Sinement & Comtan. Comtan helps the Sinemet stay in your system longer, so you get more effective dose. Prior to DBS, I was taking it every three hours. Tremors would return after two hours, making it near impossible to get anything done (no keyboard, nor mouse). I'm doing pretty good today, taking just one 25/100 Sinemet every four hours. Six months since I had DBS, so life is good. Getting Sleepy after eating is normal, often you can space out meals to smaller ones. My wife loves dinner at 7:00PM from the days when she would work until 5:30PM and we had a household full of kids. Empty nester, she isn't working, but still likes dinner at 7:00PM. Works for me as I take my Sinemet at 6:00PM, so no issue with protien blocking the uptake of sinemet. Also I have been doing something I have done in years, woodworking after work! Just fun to get out into the shop for an hour before dinner. Oh, finally talked her into going to Snap Kitchen. She cooks for eight, which means a ton of food goes into the trash (which drives me crazy!). None of the "pick three meals a week and we will ship to you" works for us. I prefer somethng like the Grilled Kale Hoppin John but she likes her meat main course. I'be been enjoying vanilla ice cream and fresh blackberries in the evening (small dish), empty stomach for when I take my ER Sinement (extended release) at 10PM.
  4. We had our annual Golden Retriever Rescue group swim this weekend. Storms held off, but 110 Golden Retrievers and 117 people it was a great turn out. We took the harness off my Golden, who is my Service Dog, and told her to go play! She was swimming almost non-stop. Few hundred tennis balls, but she would get a sandy one and come up to the ball bucket and drop it in and get a new one!
  5. It has been getting worse. A friend was over last year, and during a football game there was a Lyrica advertisement. He quipped about another "made up disease". It was the straw that broke the camels back and I lost it. Even my wife was shocked, but it is just beyond description. Closest I can explain it it is it feels like my feet have been submerged into boiling oil. I'll wake up from the pain, flip the covers off to see everything is OK. I kept thinking "did I step into a fire ant mound?" when this started a few years ago. Gabapentin is working to help "mute" some of it. Intense work outs help. If I can "tune it back" it helps to go walking/hiking. If I am just sitting there watching TV, it seems worse. Middle of the night, yep only help is to get up and walk around. Walking outside on cold concrete helps with the feet. Had a great weekend, active at a Golden Retriever meet, Parkinsons Pot Luck, and spent all day Sunday in the shop doing wood working. As long as I remain active, it helps. Gabapentin helps me remain active.
  6. Linda. My father passed away 20 years ago, shortly after my Parents 50th Anniversary. Mom passed away a few years ago. She figured 88 was a good age for her, woke up spitting mad on her 89th Birthday. My Sister asked what was the matter "Momma went when she was 88, my SIster passed at 88, and I figured out 88 would be fine for me. Didn't plan on 89! Yes, she passed before her 90th. Two girls, four boys. I'm the youngest. All of us were very curious active kids. These days they'd label it as ADHD but we had fun with build forts, running around the neighborhood and doing all sort of things to burn off our energy. Dinners at home, or my Grandmothers house. My parents going out for dinner was a very rare occasion. Dad had found an ironing roller for my Mom to help out with those items to be ironed (School dress code was navy blue skirts/pants and white shirts). We only had one pair of pants so you put them off before school, took them off immediately after school. Ironing machine was expensive those days, My Dad worked part time in an appliance store and managed to take in a broken one and repair it, and brought it home for mom. Wishing everyone a happy Easter. Time is up for me, need to step away from the computer for the rest of the day.
  7. I went shopping. In my mind I'm repeating eggs, whipping cream, baking powder. Just three things, I should have written them down, but just three things so I got it. Park the car at the far end of the parking lot, place was packed. Three things, that is all I have to remember. Truck backed out suddenly, startle reaction, fell over (remembered to tuck my head in). Got back into the store and came back with Ice Cream, coffee, and baking soda. My wife now writes out the shopping list.
  8. I was thinking gray, which is depressing. Give me a bright yellow or red tulip. Blue skies, nice sunny day. The tulip has been international symbol since 1980 when Dutch horticulturalist with Parkinson’s, J W S Van der Wereld, named a new tulip after Dr James Parkinson. http://parkinsonslife.eu/13-year-old-redesigns-parkinsons-tulip-the-international-symbol-of-the-condition/ When I first looked at that design, I was "meh". More I look at it the more I like it. Parkinson's affects everyone, doesn't descremenate, but just hope they unlock the mystery of this stuff. Till then wear the color you love, with a "fight Parkinson's" or whatever message you wish. The tulip has been international symbol since 1980 when Dutch horticulturalist with Parkinson’s, J W S Van der Wereld, named a new tulip after Dr James Parkinson.
  9. Linda, I'm glad to have you as a friend. As to a few others, well Mom said it best "If you don't have anything polite to say, don't say anything at all". I miss Mom, very wise women. I finally rearranged my home office. Still working, grateful for the gifts I have, but at times realize there is a whole world out there and I need to step away from my computer. Oh, today is the anniversary of my parents 70th wedding. I still count my lucky stars to have had such wonder parents. Of the six of us kids, five are doing well. One is bitter about life in general and feels he had the worst childhood ever. My only thought is what we focus on brings out the best, or the worst, in all of us. Always amazed that some people can be in a lush garden, and yet just focus on the weeds. Meanwhile I'm up early, all three dogs camped out in the office with me. I've had my morning espresso and looking forward to a nice sunrise. Life is good.
  10. Bring it up with her MDS at the next appointment to see if setting changes or medication should be changed. Since I had DBS, I can nibble on Mexican Restaraunt favorite chips and salsa! I had given them up as I would often gag and start choking on them. Hmm, maybe that is why my wait weight is slowly coming back up. (about 5# since surgery)
  11. John, While sleeping through DBS sounds good, I could see issues from the procedure. Neurosurgeon and OR staff was checking my functioning during the procedure. At one point turning the lights off (way down) so my eyes could follow a laser pointer while looking at the wall. Nerve impulses converted to audio, so you could hear it when I moved my eyes. It was a six hour procedure, bilateral lead placement. In over all scheme of things a very little amount of time. Admitted surgery isn't for everyone, but I would expect more complications being asleep during everything. Just amazing to my mind to tell my fingers to tap my thumb, and do it every time. Regardless of what you have done, there is a good reason to make sure the Neurosurgeon, you go with, does what he feels most comfortable doing. Oh, I did have "frameless" BDS which was done in four parts. Part One: Two Hour 3T (High resolution) MRI of the brain. Fully Sedated. Map is generated of the brain structure. Part Two: Fudicials Placed. My "shrek photo" Part Three: Surgery Day (day after fuducial placement). CT w/ contrast was done real time, MRI image overlayed with that. Six hours awake, out last 20 minutes while cables are run and stitched up. The Guide is screwed to your head, imaging is real time. Part Four: Battery Placement. Out for that one. Oddly the one I was most sore from.
  12. Good morning everyone. LAD love the poster. I'm in a good mood, but having a sh!t day. Septic Tank has backed up. Hard to have a good day, but life goes on. My wife was really upset I wasn't more upset. Meh, in the scheme of life it is small thing. Don't sweat the small stuff. Removed the access cover (thankfully I have an electric screw driver, or I would still be out there removing screws that would hold a submarine togethether at 200 leagues. Time to call in the pro. Septic guy called. Need to get the dog to the vets to have an xray (my avatar dog) as he had ACL surgery 8 weeks ago, so time for his follow up. On the bright side, I can use the bathroom while at the Vets office. Sun is out, no rain in the forecast this week.
  13. Murray, sorry to hear that! Scott - You daughter is a wonderful writer. She need to post a time line of when first symptoms noted. Where she traveled, what she did when there. I have a cousin that is active in genome projects. Fascinating reading of some of the projects, but sometimes it is the most mundane things like the desert valley fever that is common in a small region of the USA, but anyone outside that region doesn't recognize the symptoms. coccidioidomycosis, the source of valley fever is a ground spore. It affects both humans and dogs, but much easier to see the genetic sequencing in dogs. While most Doctors will recognize Lyme Disease, something like Leishmaniasis is rare in USA (some parts of Texas and New Mexico have seen it, but most Doctor's wouldn't have ever seen a case). If she had a rash, "bulls eye" mark, or a festering skin ulcer it would all provide a clue. Results of her blood work. No detail too small.
  14. NN, You are not alone. Friday, Went to with my wife lunch, paid a $23 lunch bill with $40 but spaced change should be $17. Cashier had handed me $7 when I turned to leave (I had left $5 on the table as a tip) but caught me and handed me to other $10 in change. I really wasn't sure what I had done, but must have been distracted. Then on a whim, joined my wife for pedicures. Once a year I'll go with her, so off we went for a rare treat for my wife. $40 each, plus tip. I went to pay the cashier but paid $80 by handing over eight $20 bills. My wife was standing next to had asked "what are you doing?" Scary first for me as it didn't even dawn one me that I wasn't handling money correctly. I've love to say I was distracted, but tried to pay $160 to cover a $80 bill. $10 tip to each person, so $100 total. My wife was still wondering what was going on. I am great at math, but both times had a harder time calculating change. Scary as I am so fast and good with math, but these days will use cash to keep on a budget (credit cards are evil). Once I run out of cash, that's it until next pay day.
  15. Good Morning Everyone. Had a great weekend. Saturday, A three mile hike was planned with our Golden Retriever Rescue group. Trainer was to cover packs, loading, commands, trail etiquette when hiking with dogs. Lots of great material. i had been looking forward to it all week, well Friday night my Golden came in with a bleeding nail bed! It was like she amost ripped her nail on something, she was walking just fine but it was bleeding badly. Wasn't sure what I going to do, but figured the rest of the group would be there, and the best place for me was hiking with a bunch of Golden Retrievers. Despite a last minute location change, we all got to the same location and enjoyed perfect hiking weather. Lots of good tips (some of which I actually remembers long enough to write down). Sunday, good weather held out. So mowed the front and back yard (1.5 acres). Riding mower for big areas, gas powered push mower under trees, bushes, etc. Hit a metal disc (part from a citronella candle) which impacted my leg hard! Nice bruise, but carried on. Five hours of yard work, amazing I kept at it as I wanted it done. Still managed to spend the afternoon in the workshop on a wood project.
  16. Good Morning. Fired up the lawn mowers last week, mowed the back yard. Yesterday afternoon was time for the walk behind mower to get the stuff (under trees, around bushes) that the riding mower can not get to. My friend, the Cardinal, was back battling his arch enemy that appears in the mirror of my truck. Does anyone want to knit me some mirror covers? Then he is funny to watch, at times reminds me not to be so hard on myself for not getting everything done, but enjoy what I can accomplish.
  17. I do the Rock Steady Boxing program. LVST BIG was great, but after a few months I wasn't doing the homework. To get an idea what we are doing in Rock Steady Boxing - Austin, take a look at their instagram. Every workout is different, coach is working with a bunch of trainers & PT to get idea's how to mix things up. One thing we do is most of use are in socks (MMA use gym, so keep your street shoes off the gym floor). I wore 'ankle boots' as my ankles were so weak. Standing on that blue BOSU ball is hard, but make you use ankle muscles! I'm doing much better now than two years ago! Marcia and her husband were in town, and sat in one of our classes. I did tell her this was the "level one" fighters, but pretty active group. Rock Steady Boxing around the country varies (I've heard back some -- some locations just suck as they do the same thing every workout. Boring!) https://www.instagram.com/rocksteadyaustin/?hl=en
  18. Bill, this is why my avatar (photo next to my name) has my Golden Retriever. I tell everyone he is my dedicated smiler. My wife for years would ask "are you mad at me?" "Are you upset?" As I concentrate on anything, I forget to smile! It is just the muscle memory isn't there any more, it is still in our hearts, but not "automatic smile" on my face. Worst part is I'll be tired, and sit down for a while. Not only not smiling, but mouth drops open and suddenly I realize I've been drooling. Oh my! There is a wonderful cartoon by Peter Shohls-Dunlap that sums up "the parkie face" -- works great when buying a new car. Drives salesmen crazy as they can not "read" your expression.
  19. Lively discussion on Facebook. I realize there is a lot of confusion between Service Dog, Therapy Dog, and Emotional Support Dog. To me is really doesn't matter as our furry friends bring so much into our lives. In the USA: There is no National nor State Registrations for Service Dogs. Basically if the dog can pass the AKA Good Citizenship Test standards, then it should be able to learn task to assist ONE person. You are a team with handler and dog. Lots of work required, and I work with professional trainer. Lots of work. For every hour with a trainer, about another 5 to 10 hours with the dog. I'll be the first to admit it is hard, but we do task work training for only ten minutes at a time (keep if fun for my four legged friend). If you have a SD, Therapy Dog, or ESA. Post a photo and description about them. What's the difference:
  20. No cell phone. To No talk radio shows (music is good). I am concentrating on awareness of other vehicles, speed, lane position. Then I forget to take the correct exit! What helps in cell phone on LOUD, Google Maps. Phone is resting in console, I can hear it but can not see it. "Exit 253 in one mile" will jog my memory back to where I'm going. I know where I am coming from, I know where I am going... but at times don't recognize where I am at. Routes I take at least three times a week, no problem. Routes I take once every three or six months, don't remember the land marks to remind me I'm on the correct road. If I need to look at my cell phone, pull of into an empty parking lot. Stop the vehicle, then look at my cell or directions.
  21. I'll post a follow up in "Service Dogs" http://forum.parkinson.org/index.php?/topic/21493-service-dogs/?hl=%2Bservice+%2Bdogs
  22. Bill, She will pull me slightly. Our trainer didn't like her pulling, but took a while to figure out what we both were doing and what I needed. I now use a double leash. A short "traffic leash", that is less then 12" in length, and a double ended leash that attaches to front and rear of her Freedom Harness. When I am walking fine we use the longer leash. When I come up to loose/slippery surface I go with the short leash. Harness is in the middle of her back, and she can tell the difference that I have that leash. She now takes shorter steps, and waits for me to step forward or if I tell her "step" she takes one step forward. She is pretty good with me on stairs waiting as I take one step. The DBS has helped quite a bit with my freezing, foot dragging. Still a work in progress getting the DBS set up, but so far so good. She is still with me on daily walks.
  23. Johnnys, No I'm not a veteran, just pointing out the series of video's from the VA on Parkinsons is a great resource. It is interesting in our Rock Steady Boxing classes and with Parkinsons meet up how much every one is so different. As a whole those boxing seem to have less progression than friends who just attend meetings and are not active. That video on cognitive decline does describe me, but that isn't me in the video. Thankfully I'm still driving. I do recommend all of us go for a "tune up" drive with a driving instructor. AARP has has a list, as do most insurance companies. For me it was good, biggest issue is a harder time breaking gradually as when I am off I stomp the break pedal. Oh, John is featured in this video, and in our Rock Steady Boxing Classes. His wife commented he is doing better after working out with us for the past year. We're all still competitive, so makes some of the exercises fun! Trivia my ex-wife was a 68D (Army MOS). She is now a surgical nurse, great profession. Also great we are still on good terms as she can give me her opinions of surgeons in town! Also some great feedback when the surgical team is speaking that patients still hear you subconsciously. On, 97th General Hospital in Franfurt, Germany. I was civvy, but would fly out of Frankfurt and leave her my German Plated BMW when I was gone. Drover her first seagant crazy trying to figure out where she was hiding me. Health and Safety Checks!
  24. NN -- A lot of that sounds familiar, but not likely MSA. I jumped up out of bed (well, got up too quickly) and over I went. Missed the dog (thankfully). My BP had been rock steady (pun there, need to use when I remember) at 110/70 POST OP from DBS. Brain Swelling. It was wonderful, felt great, pee'd without issue, moved when I wanted to. Now that I am four months post op my wife is worried about me again. Post Op - cut my sinemet to about 1/4 what I was on (Now 1 25/100 every four hours, ER at night) but the on/off is much better. Hills (doing great) and valleys (some tremor), but things have shifted a little. Cognitive - some days are worse. Some days are great. A bit like that file cabinet that was knocked over, can not locate anything but if I lean over a pick up something I can remember it. Youtube video from the VA just nails it. Thinking and Memory Problems with Parkinson Disease LINK Biggest thing I found to help with all symptoms. Exercise till I work up a sweat, and keep going. It is odd as Dystonia would wake me in the middle of the night. The "Claw" would return (hand turned in, foot turned in). I always thought dystonia fully subsided when sleeping, but would wake me or keep me from drifting back off to sleep. DBS made a huge difference (ya!) but not that darned Peripheral neuropathy is waking me up at night. A little like a toe that hurts until you smash your thumb with a hammer and no longer notice the toe!
  25. Bill, sounds like you are getting it dialed in. Adjust and wait to see how it goes is good. The pee factor! Nothing helped my bladder until I got the dosage of Sinemet dialed in. No magic number for dyskenesisa. Dystonia was something I lived with for years, wasn't until I had gotten on Sinemet did I realize that cramping was something different. Best part is with DBS (GPi) it just isn't occuring. Still dialing in settings as I have some tremor on right hand, zilch none on left. Still working on DBS settings.