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Everything posted by TexasTom

  1. TexasTom

    DBS Programming Sessions Per year

    MDS who does my programming. Four times a year.
  2. 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.
  3. 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!
  4. 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.
  5. 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
  6. 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
  7. 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!
  8. 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!
  9. 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.
  10. 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.
  11. 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!
  12. 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!)
  13. TexasTom

    dbs overstimulation and is explosion possible

    The leads may be too short! This has happened to two friends, both went back and had longer leads (the cable between the simulator and up on the scalp). When those leads are run, you are asked to move your head to check the length. Doh, if meds were off and neck muscles tight you didn't have a full range of motion. My lead is borderline too tight. I can really feel it with my head rotated to the left (Battery is just under my collarbone). So, yes that battery location the leads can be surgically fixed.
  14. TexasTom

    Early PD and vigorous exercise

    The original Rock Steady Boxing program was a great idea, sadly since the main organization seems to have lost focus. Evaluate every person, put them into one of four classes depending on their ability. Level four is a wheel chair, barely mobile. Do what you can with a lot of these folks sitting down, or laying on the floor. Level ones are most active, hence more intense workouts. HIIT = High-Intensity Interval Training. Jumping Jacks for 30 seconds, rest 20, repeat 3x. That is HIIT. It doesn't mean I need to do jumping jacks for three minutes (ouch), but rapid intervals and rest. I still hit my target heart rate of 145. Sit-ups: I ruptured lower lumbar disc. Think squished donut. A neurosurgeon told me no surgery, but since walking helped. Keep walking. Sit-up is out of the question, so I do a modified version with my spine flat on the floor. Arms and legs out and lift them. Engages my core, saves my back, lumbar is fine. Pushups and Planks. I started off 0 pushups, even on my knees. I had no core strength. I can now do 20 pushups! This is TWO YEARS later an I am in great shape. The theme is start off slow. It takes months to build up endurance! During the past 28 months, I've had part of my lung removed (nsclc-adenocarcinoma) and brain surgery (DBS). My docs have all commented I am in great shape and working out helped get through those operations. Slow and steady pace! The problem with Rock Steady Boxing: No protection for gym owners. Sign a three-year lease for a 10,000 sq ft gym, and they will let someone set up 1 mile away. Hint those gyms cost money, instructors cost money, so if you spend two years building up a clientele, there is no protection. No oversite: They will not verify that the gyms are keeping to their program. One of the gyms saw it was a money maker, and hired a boxing coach to teach the class. The coach took great pleasure in belittling people they weren't paying attention. A horrible program, thankfully since folded. No understanding of what is best for those with Parkinson's. One affiliate covered a large metro area. Coach realized driving two hours roundtrip to class was not viable for those with Parkinson's. Rather than leasing one location, she has three different locations. RSB said "that is three locations, you have to pay for three sites, oh the fee is $1200 each per year. No understanding of why great coaches' coach: Latest RSB contacts tell the person "if you stop doing RSB, you can not start another for Parkinson's Fitness for three years" WTF? Our couches worked with Parkinsons and Fitness before RSB and took counsels agreement while not enforceable, you could spend thousands to confirm that it is not enforceable. So you will see more affiliates "opt out" for that reason. Two years ago RSB was a great program. Train coaches (for a fee) let them start up their location, pay $500 a year as an affiliate. Now they have 700 locations at $1200 annually. $840,000 generated from fees in revenue. They are their own worst enemy as it will dilute the name, and seems to be focused on greed. Currently, only 990 from 2015 are available but will be very interesting to review in coming years. Charity Navigator only rates once they have seven years of IRS filings to review. https://www.charitynavigator.org/index.cfm?bay=search.profile&ein=205113083 Meanwhile, keep moving! Find a fitness class that is a good fit and keep your motivated to keep going!
  15. TexasTom

    Good morning!!

    Good Morning All! Love the posting. I've been quite, busy at work. Somedays I don't feel productive enough, but try to limit the time at the computer. I've been keeping active with the workout class. Changed name, no longer RSB. The Rock Steady Program is good, and I still recommend it. Sadly for the gym owners, the "corporate directors" have been consumed by greed. It was one person who wanted the best for those with Parkinson's, but they formed a board of directors who smell money. $1200 a year per location, but not a franchise just pay your money and do your own thing. Sad to see it implode, but glad our local group figured it out and will continue on.
  16. TexasTom

    Parkinson's Disease & Dementia

    Maral, I am so sorry to hear about your husband passing away. You can take comfort in having been a supportive spouse who stuck by his side. My wife wants nothing to do with Parkinson's. She was very upset as I am supposed to be her caregiver, not the other way around. I am still working, thanks to a fantastic employer, while my wife quit working years ago as it was too hard for her to get up early. She won't attend my Rock Steady Boxing classes (doesn't want to take the time out as she would miss Ellen), nor join me on a walk around the block. I remain active, try to do my best, but have zero support from my spouse on this journey. So please take great comfort in you were there for your husband. For my wife, she just feels my blank face is a sign I don't love her. Sigh, thankfully informed spouses know better. I wish you all the best.
  17. TexasTom

    Parkinson's Disease & Dementia

    FALSE INFORMATION. Some of us with Parkinson's may go onto developing PDD (Parkinsons Disease with Dementia) or it maybe Lewy Body Disease. lbda.org is the good source of information. I meet a fellow, still mentally active, who was Dx and started on Sinemet at 52 years old. When I meet him he was 90 years old! Still active on the family farm. He said he has slowed down, but living with Parkinson's FORTY YEARS later! Don't give up, keep moving forward. There are still some MD's who believe "once diagnosed you have about 10 years left". We all know that is old wives tale but stems from the days when the average age of Dx was 75, yet average lifespan was 82. Yes, those with Parkinson's "only lived 10 years on average" but overlooked their peers died sooner! Those with PD had better medical care (hence the Dx). With Parkinson's Dementia, we just have a harder time processing things. We still know who the people are around us. We may forget and need to be reminded of things, but we still have our memories. Alzeihemers is when you have zero recall of those people around you. The best thing we can do is keep exercising, eat sensibly, and (try to) get a good nights sleep. Oh, my Golden Retriever is sleeping on my feet at the moment. Life is good.
  18. TexasTom

    Parkinson's Disease & Dementia

    Get her to a Doctor! Dementia does not happen overnight, UTI's do! Yes, Unary Tract Infection can cause the family to think "Mom's got dementia in three days". NO, that is a UTI and need urgent medical attention!
  19. TexasTom

    Good morning!!

    Merry Christmas and a Happy New Year!
  20. TexasTom

    What caused your Doc to suggest DBS?

    Yes, boy did I mess up thinking "I'll be home in a few hours". So I always keep four days of medications with me in my backpack(keep hands free). DBS allowed me to cut back on medication to about 1/3 of what I had been taking.
  21. TexasTom

    Approved for DBS

    Scott, Warana likes to scare the hell out of anyone considering DBS. For those of use who still have a lot of living to do, and wish to reset that damn clock, then DBS is worth it. For me my limit for walking was to the mailbox and back (200 ft). After DBS, and with my faithful Golden Retriever at my side a 5K walk is not only possible, but fun.
  22. TexasTom

    Infinity DBS system - issue

    I had the "honeymoon" for a few weeks after surgery. Brain swelling does something very odd where I just didn't seem to need my medication! Two weeks after the brain surgery, the simulator was turned on. I was still in the honeymoon period. Next four months I had monthly assessment and readjustment. Then every six weeks. Finally after at year I'm back to every three months for appointments. Still tweaking settings a little. Left side very stable, right side depends on taking Sinemet every four hours (one tablet). Couldn't get away from it completely, but still at 1/3 what I was taking prior to DBS. Much better bladder control! (yipee!) It's a journey, not a quick fix. EDIT: Two months since Deepek had surgery -- looking at his early post. Brain Swelling can take months, and everything is just off until that settles down. So give it time, but talk to your MDS. Mine would have me not take any medication for 12 hours (oh fun!) prior to my appointments. I'd have to remember my depends shields for those mornings (when I'm off, my bladder lets loose without warning. Sigh)
  23. TexasTom

    What caused your Doc to suggest DBS?

    Adam -- it's been a little over a year since I had DBS surgery. For me I was fine with my "every three hours" taking two 25-100 Sinement & one 200 Comtan. So around 1500mg daily of Levadopa. It was working, but at every three hours was clear I was getting peaks and valleys on medication. Functional during those peaks, but when it wore off I'd have a hard time. Doc had suggested it, but I thought I would wait a few more years. Returning to Austin, had a direct flight. Everything set up for best case travel. Late arrival, car to take me home (not driving at night, when tired). Etc. Well the weather had other idea's. Direct flight, so I only had a few doses of medication in my carry on bag. My extras all checked in my luggage since I was heading home. The airport got 10 inches of rain. Ended up getting diverted to Dallas. Landed at 11PM sat on the runway until 1AM waiting for weather to clear. They finally let us off the plane. At 3 AM they told us they wouldn't unload luggage in Dallas but keep it on the plane for the flight home. Lots of planes got diverted. My daughter was also diverted to Dallas and we took a bus back to Austin Airport in the morning. My luggage was not there. No sleep, no medication I couldn't communicate. Jaw tremor wouldn't let any words come forth, soft voice, and shaking. The baggage clerk took her frustration out on me. "Get out of my line, if you have been drinking all night, I am not going to deal with you!" My daughter had just returned from the bathroom, upon hearing that tirade, and let that clerk have it "My Father has Parkinson's, and needs his medication!". That was when I realized it was time for DBS.
  24. TexasTom

    Service Dogs Are Life Changing

    Thank You! Various people show up on the forum with "things to sell use for the utimate cure that worked for their cousins fatherinlaws nephew... sheesh" We tend to be a bit guarded at times. I rarely have photo's of my girl working. I can pick taking a photo, walking, or shopping. Doing all three are too much work. This was a good one with her "checking in with me"