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TexasTom

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TexasTom last won the day on September 8

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About TexasTom

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    Advanced Member

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  • Gender
    Male
  • Location
    Austin, TX
  • Interests
    Electronics, Aviation, Machining

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  1. TexasTom

    Good morning!!

    Good Morning Marcia! PEI is a wonderful place. Maybe next year. I have Saugus Iron Works in Massachusetts pinned for a future road trip. Nova Scotia and PEI would be on that 6,000-mile road trip. My wife has zero interest in the van or road trips, but each of my kiddos are game. So have one fly into various locations and help with a weeks drive. So that is viable for a four-week outing. Oh, my namesake was captured in the battle of Dunbar in 1650 and sentenced to seven years service at the Iron Works. My 9th grandfather being born in MA in 1657. Still would love to see it. Knees. I can understand, Orthopedic Doc said after my latest "scrape and recover" next time is artificial knees. Not looking forward to that one!
  2. TexasTom

    Good morning!!

    My daily driving will vary. I have two criteria, don't drive when tired nor after dusk. Fridge, Bed, Porta-potty (emergency) all make it viable. There is a fan to keep air moving through the van at night. My CPAP is ready to go anytime I go to sleep. I'll usually get on the road around 10 AM, but call it a day around 4:00 PM. When camping, I use my Coleman propane stove for eggs and bacon. Otherwise, eat granola and yogurt for breakfast. Lunch is a simple wrap or a salad (most grocery stores have a decent salad, cube up some tofu and it is a good meal). Dinner is simple unless stopped at a campsite. When I getting to a location, I'll scout out where to stay. Many cities have "no overnight camping" so often a church (check when morning Mass is, and move before everyone arrives), Walmart, or Home Depot lots are simple to park in overnight. So location is scouted ahead of time, pull in late. Walmart is good as I can do some shopping for the next day or two. Fridge means no need to buy ice, until meeting with the kids en route for camping. The only time I did the stop and park and regretted it was in the desert at a rest stop. I failed to notice it was still 108F in the late afternoon. Woke up sweating at 10 PM, but finally cooled off to 90F at night. I think the low temp for that location was 84F. Otherwise at Big Bear Lake (7000 ft evaluation) was thinking that it would drop to 40F at night. Daytime was a pleasant 75F, a nice change after the desert heat! Oh, I forget to pack a jacket. Once a week I might stay in a hotel, so I can use a washer and dryer, but tend to have two weeks of clean clothes. Campgrounds often have a hot shower, otherwise, wet wipes work for a day or two depending on how active I've been. Remote area's, nothing better than looking up at the Milky Way at night. I've forgotten most of my consultations, but amazing what I do remember. Just need to recall if Summer or Winter sky when I get confused. Too early in the year for the Big Dipper! It was just fun to get out. I love wide open roads, my faithful redhead was with me keeping me on track. She prefers hiking in the cooler mountains, otherwise early morning in hotter climates.
  3. TexasTom

    Good morning!!

    Good Morning Everyone! Hope all of you are doing fine, and enjoying today! I managed a solo 3000-mile road trip. I don't stress little things, and to make it easy on me I keep life flexible. One of the ways I can do a long road trip is the option to stop and nap. Fatigue or nightfall (dusk) and I'm done the day. I have a small fridge, and a bed in the back of the van. Made it to Phoenix for a week (work related), then out to California to see my daughter over the Labor Day Weekend. First time I have ever taken her camping. Her boyfriend and dog joined the weekend. Peaceful camping, most locations I was at were out of cell range. Good thing, nice and quiet. The second gives me a chance to catch up on my reading. Finished "The last bus to Wisdom" by Ivan Doig. Great book, my daughter is reading it and loved it. Another book is "Always looking up" by MJF. Both recommended reading. Two photo's. First when I stopped in Big Bear Lake for a few days. Second with her in front of the "bread box of a van". The irony is at Big Bear Lake (7000 ft evaluation) it dropped to 40F at night. I forget a jacket. Other fun was stopping about 80 miles west of Phoenix. Dusk, and time to call it a night. Parked and it was 108F. Read a book for a while, finally went to bed (vents open, fan blowing and woke up a few hours later sweating. It had cooled off to 80F at night, but due to monsoon season was still around 60% humidity. Not the best slept, finally dozed off and got a few hours and back on the road at sunrise.
  4. TexasTom

    HELP IN LAS VEGAS

    https://www.partnersinparkinsons.org/find-movement-disorder-specialist I've heard some "stranger than fiction" stories when it comes to all sort of things. One recently was someone who docs wrote off as "anxiety" and kept giving her medication for balance, and movement disorders but didn't have any of the other classic Parkinson's symptoms. Thankfully her surgery for Chari Malformation was a success. The first thing an MDS did was order a brain MRI and realized the issue (brain is too large for the skull) extremely rare.
  5. TexasTom

    Phantom smells???

    I mentioned this in an earlier post about smelling roses despite being in January (none in bloom, none in the neighborhood, not in the house). This was a good 20 years ago, so nothing new at all. I realized it was a phantom smell, but never connected it to do with Parkinson's. My MDS is kind and very nice, but she keeps assuring my wife I am not living with Lewy Body Dementia, but more of PD with Cognitive issues. I can still do a lot of things fine, but somethings I limit myself. No night time driving as streets/intersections look so different. Fine during the day. Visual hallucinations (cute bunny rabbits) and auditory hallucinations are normal. Went hiking with my Golden Retriever in NM. Hiked up to an old Stage Coach Stop near Guadalupe National Park (Texas). Did fine, turned around and hiking back. I didn't recognize the turn, but my girl blocked an progress until I went through some brush (that hide the passage). Once I made it down the brush, I recognized the trail back to our campsite. A smart dog who kept me from wandering out into the desert! I do fine as long as she, or one of my kids, is with me.
  6. TexasTom

    DBS Programming Sessions Per year

    MDS who does my programming. Four times a year.
  7. TexasTom

    Good morning!!

    I had GPi bilateral DBS, but no idea why I wrote STN. It was one of those foggy memory days when I posted earlier. Post surgery brain swelling is an issue for some of us. As Mimilaster commented they want everything healed before programming. I was meeting with my MDS do dial in settings every two weeks, then every month. It is always moving target as the settings may need to be tweaked. I'm doing very well, but when doing my intense workouts dystonia seems to reappear. My toes like doing a "Vulcan salute" of going all sort of different directions. It isn't a muscle cramp, but full on dystonia. I just hope around a little bit waiting for it to subside.
  8. TexasTom

    Good morning!!

    After my surgery it was odd, first time I had experience nausea from my Sinemet! I was at two Sinemet and a Comtan every three hours and needed that medication, but could feel my neck muscles tighten like crazy... ended up cutting down to one Sinemet every three hours. Brain swelling plays tricks on your medication levels for a while, often a "honeymoon" effect when you feel like Superman Thalamotomy and Pallidotomy where two types of brain surgeries that were done years ago. Pretty much replaced by DBS these days. Just inserting the right brain lead brought instant relief to my left side tremor during surgery. I had dual STN placement, many as my dystonia was the biggest issue I was living with. I have very little battery voltage on my right brain, zero tremors on the left side. The right side is not as good, some tremor but worthwhile. The oddest part was during programming how much my voice changed. There was a sweet spot of a good deep voice, but too much voltage and my facial muscles twisted into a knot. Strange things. I need to check in more often, but at times just get too busy with life. Still working and keeping way too active!
  9. TexasTom

    Good morning!!

    JB - that is well-packed dirt. Primitive Camping, with a composting toilet. No running water. It was at 7,000 ft so thin air that I wasn't adjusted to! After DBS surgery it took me three MONTHS for the brain swelling to go down. Take it easy, I returned to strenuous workouts too soon after surgery, basically, I was bored and missed my workout group. I have myDBS up in my chest. I had that location as docs are still scanning me every six months. It was odd how much my back hurt after surgery. The battery is the front, but it is a 'reflected pain' where the pain has another location. Odd, but does happen to some of us. Linda -- Every time I go into my doctor's office they all say "You look fantastic!" I have confounded my doc's. I like that! I just keep in good spirits and enjoy every day! My wife thinks I've gone off my rocker buying the van, but the idea is a simple place to sleep. I no longer drive at night or when fatigued. So pull over and nap, or sleep until daybreak. Gives me more options to remain active.
  10. TexasTom

    Good morning!!

    Good Morning Everyone. I was off for a few weeks of road trip/camping Goals for 2018/19. Buy Van Grab a kiddo for a week and do a road trip. So one kiddo down; three more to go Dinner over a stove, with my faithful friend watching. A van big enough to not only sleep in, but do some morning stretches
  11. TexasTom

    Video of a PWP doing well - This is who I am

    Great video! Nice to meet you, and I love your video! Do not let Parkinson's define you! Keep moving, looks like you are doing great. If you make it to Austin, TX send me a note. Would love to have you join us at out workout class! HIIT! You need to teach me how to do that ooooooooooooooooooohm! I'm keeping fit as long as I can to help a few Golden Retrievers make the transition to a forever home (dog rescue!). One thing I've learned is dogs just love you for whoever you are! Tom
  12. TexasTom

    Interesting article on Dystonia and Opioids

    I have an issue with any opioid shutting my colon down. Toss in a history of NSAID's and stomach ulcers and those are out. Peripheral Neuropathy is bad, so trying to keep it under control with Gapentin. This stuff is just bizarre. When I had part of my lung removed due to cancer, post-op was told I needed to take pain medication to help keep it under control. I explained why I didn't want any pain medication, and my nurse was great and asked what could they go "get me a walker!" I pace to control the pain. That it about it. So post op, chest pump/drain hanging off the walker and up and won the hallway I went at night. Complete with my yellow "fall risk" wristband. It is odd but when I do my intense exercise (pounding a heavy bag) is the only time I don't feel intense pain. It is like my pulse is racing (145-160 bpm), sweat pouring off my head, that I disconnect from constant pain. Thankfully my PCP and MDS understand the level of pain. Another doc dismissed it, MDS corrected him with "read his chart, thoracic surgery didn't phase him at all". The hardest period was postop brain surgery as I was to take it easy. Ha!
  13. TexasTom

    crossfit for daily exercise?

    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. TexasTom

    crossfit for daily exercise?

    Hi NCFred, Key is to keep exercising. HIIT (High-Intensity Interval Training) is good! Cross-fit is good! Key, as pointed out, is not to hurt yourself but work up to those levels. I had blown out my lower lumbar disc. Think squished jelly donut. Found a great neuro/spine surgeon who explained if I felt OK to walk, keep walking! That helps the spine pump fluid and gives room for those "squished donuts" to come back together. In my case, no sit-ups. I do a modified crunches for ab workouts while the rest of the class is doing sit-ups! Thankfully our coach is great and has different instructors rotate our workouts, all geared for Parkinson's. I found starting the day with 10 Sun Salutations (yoga - google is your friend) gets me moving first thing after I've had my morning espresso. Working out, core exercises (yes planks and pushups with head-shoulders-butt inline have helped the back issues! Bob is rocking the Bosu ball. His rear should be lower, but what a way to celebrate your 80th birthday! Yes that is our class.
  15. TexasTom

    Early PD and vigorous exercise

    I was a huge advocate of RSB program, but visiting other gyms soon made me realize there is zero oversight and accountability. PWR is a good program, but their director believes PD caused lack of core muscles. Seeing PWP from a wheelchair to doing knee pushups showed me that isn't true. I have a very low resting heart rate of 52 (much lower than most), but find it I sustain one hour with 145 HR that is an intense workout! Two heart rate calculators: http://www.heart.org/HEARTORG/HealthyLiving/PhysicalActivity/Target-Heart-Rates_UCM_434341_Article.jsp# https://www.mayoclinic.org/healthy-lifestyle/fitness/in-depth/exercise-intensity/art-20046887?pg=2 Mayo Clinic Method, (220-59) - 52 (Resting) gives me about HHR 110. Target is 70% too 85% of that number, plus resting heart rate. So 132 to 145. American Heart Association gives a 60-year-old from 112 to 145. Keep in mind when I first started working out I was 300 pounds, could not go a jumping jack nor on full pushup (even on my knees). Chronic back pain, and lots of issues. Two years later dropped to 240# (It's crept back to 252# after I started on Gabapentin and DBS) but 20 pushups, 50 full jumping jacks, and working out sweating for 60 minutes are all good things! Practicing our falls (volunteer orientation day, so crowded class): Oh, yes the kid who never took P.E. nor could get my mind to do a jumping jack.
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