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Everything posted by TexasTom

  1. TexasTom

    Young Onset - a difficult road

    @robp A couple things I do to limit getting lost, is no night driving. Also no "pressing on" when fatigued. I can navigate around home, but was rushed and hit the bank then boxing. Neither is is an issue, but hit the bank then my boxing class. New roads, detours, and it was too much to make to my class. Uh oh. So I try to limit myself by plenty of time to get where I need to be and use GOOGLE MAPS with my phone giving me turn by turn directions.
  2. TexasTom

    Good morning!!

    Good Morning everyone, hope all had a fine Thanksgiving. A local church was having a 5K Turkey Trot run, so two more to join me in a fun run Thursday Morning. So three of us, Mike, Pam, our active with our Parkinson's Boxing class. Mike had swallowed some lake water in August, which developed into a nasty lung infection. He was cleared to return the exercise a few weeks ago, so glad he made it. A friend of Pam's got us all the smile at the same time, which was a nice feat. Post running I could barely walk. Tremor city, but after a few minutes calmed down nicely
  3. TexasTom

    Good morning!!

    Thanks, everyone. Love Peter Dunlop-Schols story. Linda, glad they found this issue. Odd things happen to our bodies, so I always remind friends Parkinson's is very gradual. Sudden changes and get checked out. My wife kept ignoring bowel issues. To her a lady never discusses such things, so when her doctor noticed her abdomen and asked "do you have regular BM's" her response was "yes". Yet it was a ribbon 1" x 1/8" wide (hint, that isn't normal at all). Hence her ruptured colon, sepsis, three months in ICU. 2005, so amazed she survived that. Everyone should google the Bristol Stool Chart and tell their doctor "number four on the Bristol chart, 2-inch diameter" Or for me, Type 1 rabbit pellets! It's a body function, doctors want to know details. I realize TMI, but I love my family here and want them to be informed and honest with their doctor. Spent a week on the road. Two days drive into Tuscaloosa, Alabama. Two days there, one spent at a football game (Roll Tide) and another walking around the campus. Saturday I put in six miles walking in addition to watching the game. My biggest concern was my wife as she hasn't joined me for a walk in years. She is the football fan, so had extra energy to enjoy the game. The drive there was in pouring rain, and despite breaking the drive into two days of a maximum of six hours, pouring rain and a pile-up on the freeway meant it turned into a ten-hour drive arriving after dark. Thankfully my wife was with me and the hotel was right off the interstate. I do not drive at night for a reason (visual processing is more difficult in low light, and add fatigue it isn't good). Arrived at the hotel, but exhausted. Didn't go out for dinner, but a place delivered Mulfatta's, so it was a good dinner. First time attending a football game. In college, all the Engineering students would joke "We have a football team?" as Saturdays were spent doing homework. o even when I lived on campus I never attended a game. To suddenly be in a stadium with 100,000 loud screaming fans who like watching the whole game while standing was an experience. The home side is in the shade, find on those hot days but we have a cool 45F with wind and my tremors kicked in full time. Medication on time, eating on time, everything on a schedule like clockwork and I couldn't stop shaking. Still had a great time, but by halftime people next to me were asking if I was OK or if they could get me a hot chocolate. I would have loved a hot chocolate, but my bladder wouldn't have lasted one minute with any additional fluids in it as I wasn't able to walk down the stairs without assistance, least make it to the bathroom. So it was shake city and "I'm fine" After the game, I was able to get my legs to move, but slowly walk and keep upright. We made a few stops, one in a local brewpub. Nice dark Stout. Then next stop for dinner (new place, thankfully no one knew was there, so we could get a table). After dinner made it back to the hotel, so the day was a success. I didn't do a faceplant and my wife was able to walk the full day. Enjoyed a few more nice restaurants on Saturday. The old downtown historic district, so lots of little places. One looked good for lunch. Hostess said "follow me" so my wife was in front of me, and we proceeded up some narrow steep stairs to the upstairs loft area. Have I ever mentioned while I can go up a flight of stairs, I can not go down them? No elevator, only a dumb waiter in the back for food and dishes. Yes, the bathroom was downstairs so I didn't drink as much water as I should have. Nice lunch, enjoyed a wonderful Kolsch, and slowly holding both handrails got my size 14 feet to get down those 8" wide stairs back down. Challenge meet and accepted. The best thing we can do when living with PD is just remember to go on living. I hurt and somedays never want to get out of bed, but there is so much I still want to do and press on. Taking a week off from boxing and exercising make it clear how much worse my symptoms get after a few days. So I need to get moving and keep on moving.
  4. TexasTom

    hallucinations !

    With Parkinson's medications, it is a fine edge. Enough medication to allow movement, quality of life. Too much medication and those hallucinations (hearing things that aren't real) occur. For me, it was a doorbell or knocking on the door. I was taking dopamine meds every three hours, about 1600mg of levodopa daily. So that was a side effect of medication, but it wasn't until I had BDS that I was aware of that. Between intense exercise, being more active, DBS, and medicine to help with cognitive (Aricept) I'm doing pretty well at the moment.
  5. TexasTom

    Good morning!!

    Thanks, Diane and JB. Five years ago is when my son helped me off the floor in the garage. I had changed the oil in my truck, and got "stuck" and couldn't get off the floor for about four hours. Thankfully he stopped by for something and assisted. I never did fess up but thought my days of working in the garage were over. Hard to realize it's only been two years since I've had DBS! Marcia, do be careful with the kitties. A friend with Parkinson's wife missed a step and fractured her Tibia. She had surgery this morning but normally works out with us. The oddest part about running 5K was I wasn't winded and made up back up that hill (course looped back) without an issue when most had to resort to walking. I was talking with someone else doing the same pace, and she commented I could push much harder as I wasn't having an issue conversing! I may start working on 10K's, but prefer trail (dirt path) runs over the pavement as it is easier on my feet. With all my HIIT exercise, my resting heart rate is 50. When I didn't work out for three weeks, only did yoga stretching, it slowly climbed back up to 62. After a week of HIIT back to 50-52 range. My cardiologist gave me the green light to push to 170 on runs, as I am in great shape for 60. Normally you don't want to go over (220-age), but his comment was he wished more of his patients exercised more. I have this joke. My parents picked out a fine name for me, but when I was born my mother told the nurse my name was Thomas. It was listed on the birth certificate and forgotten until my mom got back from the Hospital and there was a banner welcoming Mother and Baby James. I think Thomas was the better choice. Her sister, upon hearing the name, exclaimed: "You named your son after that CAT!" Seems a stray would always hang around the house, which mom called "Tom" (short for tomcat). Little did anyone realize that I would be good for nine lives, so I plan to live each on the fullest.
  6. TexasTom

    slowing progression of PD

    Just my take on progression: The best thing we can to delay progression is Exercise. Work with your Movement Disorder Specialist to have optimum medication, allowing you to exercise more often. Have a clearance from all your doctor's allowing HIIT (HIgh-Intensity Interval Exercise). As a whole, I found our group that does boxing and HIIT seems to have a slower progression. I'm doing things I wouldn't have thought possible (five-mile hikes, 5K run) five years ago.
  7. TexasTom

    Good morning!!

    One of my friends with Parkinson's has been running Marathons since his diagnosis seven ago's. Ten marathons in seven years. So Bob inspired me to try my first 5K run. Best part, it was sponsored by the local SPCA, so it was a "run with your dog event". We have walked the path many time, fairly flat, so not an issue for me. Well, the morning of the race we had had weeks of rain, so the local park was flooded. They rerouted the course out onto a busy street (6' wide sidewalk, lots of room) so figured no issue. I told my daughter to run ahead as I was with my Golden, and we would be fine. What I failed to realize is the meant a long downhill section to the other part of the park. I was making good time on that downhill, but between running faster than planned and my body leaning for forward I couldn't slow down. I thought about grabbing a fence, but realized it would be a great way to dislocate my shoulder... splat! Faceplant on the sidewalk. My Golden stayed by my side, thankfully didn't break a wrist or collarbone, but got up and kept running. Sore knee, hand, thumb, and a few other things... but we finished in a little under 42 minutes. Not bad for a guy who couldn't get up without assistance five years ago.
  8. TexasTom

    Good morning!!

    Good Morning. Enjoyed some beautiful fall weather last weekend. Nice five-mile hike, with some rocky climbs and stream crossings. A friend from college was in town, so we had a good time of it. My faithful Golden Retriever helping me keep balance, but at one point decided I was fine and a nice cool belly soak was too good to pass up.
  9. 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!
  10. 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.
  11. 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.
  12. TexasTom


    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.
  13. 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.
  14. TexasTom

    DBS Programming Sessions Per year

    MDS who does my programming. Four times a year.
  15. 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.
  16. 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!
  17. 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.
  18. 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
  19. 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
  20. 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!
  21. 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!
  22. 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.
  23. 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.
  24. TexasTom

    Parkinsons and sugar intake

    Yes. I have come to realize there is a sugar intake relationship with my symptoms! I seem to have worse issues over Thanksgiving and Christmas. Cold weather, extra stress, and sugar all play a role. I was doing pretty well a few weeks after Christmas. Still cold, less Holiday Stress. Life is good. Girl Scout Cookies! Oh, I love those things, darn if my movements/fatigue didn't get worse! It is important to keep a journal of symptoms, depression, pain, yadda. Record medication times, when you ate, sweets, cups of coffee, how much sleep you got. Do all this on a daily basis.Every two to three months, go back and chart the daily "today was a good day" "today was a bad day". No coffee after 10 AM for me! Reduce stress when possible. I didn't expect it, but days when I walked 12,000 steps (over six miles) occurred with no sugar the previous week. Sugar intake goes up, fewer steps more fatigue. RA issues seem to be worse with sugar intake. Can not find any correlation between neuropathy pain and anything else. The Peripheral Neuropathy is an odd one, as I am not diabetic. It seems common for those on Chemo, but no chemo to treat my cancer (not an option -- grows to slow for Chemo to touch it, so radiate and surgery are my options). I had severe dermatitis on hands/feet as a child, so maybe some other auto-immune issue at play. Pustular Psoriasis is the medical term, but at the time was called severe eczema. It was controlled by cortisone topical and injections (from age 5 to 20, cleared up as I got older, but small patches still appear on occasion). So keep a daily chart, and do a summary every three months to give a one-page overview for MDS. I'll type it up a few days early so I can review and edit. I'll leave it out with keys and wallet, so I don't forget it. My wife will put a line through a few comments "doing fine, good balance" with "fell twice this week". She doesn't attend my doctor appointments but this gives my MDS additional feedback. Jul -- my snack is Dates and Almonds. A Good healthy one!
  25. TexasTom

    other surgery with DBS

    They turned mine off, as it may interfere your electrocardiogram (EKG). After surgery, make sure you have your remote control with fresh batteries so you caregiver can turn you back on! (I wasn't responding in recovery!)