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Everything posted by TexasTom

  1. 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.
  2. 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!
  3. 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!)
  4. 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.
  5. 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!
  6. 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.
  7. 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.
  8. 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.
  9. 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!
  10. Good morning!!

    Merry Christmas and a Happy New Year!
  11. 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.
  12. 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.
  13. 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)
  14. 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.
  15. 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"
  16. Service Dogs Are Life Changing

    Quick recap about Service Dogs. Assess your accommodations. You need to live in a place big enough for a service dog. Other things to take into consideration are a secure yard. Do you have any other pets? Most service dog providers recommend that the dog is the only pet in the household. Some providers will not place one if other pets are in the household. Can you take care of the dog? Having a service dog is a two-way street. You will need to be able to feed, groom, and clean up after your dog or have someone else who can. Can you afford a service dog? Besides the initial cost of the animal, it costs an estimated $1,500 to $2,000 a year to look after a service dog, including food and healthcare. The average service dog stays with an individual or family for around eight years. Service dogs may perform some of these task: Wheelchair Assistance Service dogs can pull wheelchairs, and assist with ramps and opening doors. Anxiety Relief The calming nature of service and therapy dogs can help ease anxiety. Petting dogs release endorphins and reduce stress. Retrieve Items Service dogs can help by picking up dropped items and fetching items from other rooms Lowers Blood Pressure and Heart Rate There is evidence that stroking a dog and sitting next to a dog lowers blood pressure and heart rate. Improved Balance Walking with a service dog can help people who have trouble with their balance. Good Distraction Looking after a service dog gives people something to focus on other than their illness. It can help force them to get up and go out. Exercise Service dogs, like all dogs, need exercise. Having a service dog encourages owners to get some exercise each day. Attract Attention If you need help but are unable to use a loud voice, your service dog will be able to bark to attract attention. Help Around the House Service dogs are able to help people around the house with performing tasks. Alert to the doorbell, retrieving medication, and switching lights on and off.
  17. Service Dogs Are Life Changing

    What is your connection with the organization? Bill, glad to see you posting. I haven't posted in a while. My faithful friend is great at helping me with retrieving things, but alas she doesn't remember passwords either.
  18. Getting ready for my MDS appointment for programming session this morning. I was reviewing my notes last night on non-movement issues, and realized I have had ZERO tremor on the left side. None. I had forgotten my 6pm Sinemet, so at 8pm it had been six hours. I was feeling great, some tremor on right side. So like any good Engineer making notes and writing up current status, I turned off my DBS. Nothing immediate happened. Hmm, maybe this is the honeymoon period? My right hand started up with a pretty good tremor, but I can manage this. I started feeling really flush, which I hadn't noticed in some time those fluctuation. I had my BP cuff, took my blood pressure. 159/98. Oh crud. No voice, wasn't able to yell for my wife. My faithful Golden Retriever was outside, so I couldn't get her to help by "get Mom". Starting perspiring and really shaking pretty bad by the time I got my DBS turned back on. I really had no clue it would affect me like that! Took a few minutes to get the remote and turn myself back on. My wife took one look at me and realized I couldn't get out of the chair. Took about 15 minutes to get back to normal. BP had settled back down to 110/70. Whew! At least for my notes "DBS controls my Blood Pressure" I've never seen that mentioned anywhere, but I seem to have more Autonomic dysfunction than other PWP's. Other thing noted: Bowel Movement seems to be more regular. I really thought DBS would only affect movement (tremor, freezing) so seems odd to note the non-movement issues it helped. I am also out in the workshop, currently doing a wood working project. I really need a Table Saw as leaning over and ripping sheets of plywood with a circular saw is not a good thing to do (Solo work).
  19. I've been through a couple of sleep studies, basically it was commented "Parkinsons" related sleep disorder. CPAP to keep the oxygen levels up (I have central apnea and obstructive apnea events). Tried Clonezapam -- felt like I was in a fog for 24 hours afterwards. Hopefully everyone is away of long term issues with using that stuff, as it is meant as a short term (one to two week) For me no issue falling asleep, but often I'd wake up after four to five hours and couldn't get back to sleep. Silenor (doxepin) is helping. 3mg or 6mg does, and with my 240# size the 6mg seemed to be most effective. I've been on it for four weeks, pretty good nights sleep for about the last few weeks. It took about two weeks to become effective.
  20. 23 and Me update

    Hey folks, I was one to sign up for 23 and me to do PARKINSON'S RESEARCH! One of the things that came out for the initial research is there is more than one genetic component to Parkinson's. Somethings are very interesting including I am a fast metabolize. Basically I can drink five espresso's in the morning, and it is just a good day. Other people would be so jittery and buzzed it would stay with them the rest of the day. Flip slide is drugs flush through my system much more rapidly than most. Shaker Dave the "give up your rights" is really a broad paint brush. Police can not request your DNA profile from them. If they extract that you can smell asperugus after urinating it, well that is still your DNA. However they can discover there is a genetic link to being able to smell that scent. If anyone said "I'm opting out of all possible research" that means no future development in understanding why we have Parkinson's, nor helping out the next generation in finding a cure. Ditto with my blood (I've donated for cancer research). Once I'm done with it, researchers are welcome to my brain. http://www.parkinson.org/pd-library/fact-sheets/brain-donation I realize some people think and testing of DNA shouldn't be done, but to me if it helps out the next generation it is worth it.
  21. Good morning!!

    Hmm, that is an idea.... we should all dye our hair purple! Would make for an interesting conversation. Mrs. Tex is doing fine, sling is odd and ready to start physical therapy. She really needs to get out and volunteer as she is spending too much time watching me! JB, I hear you. 90% of the folks don't want to hear the details, the other 10% do but I try to use caution to not overwhelm them. So it is either "I'm fine" or "doing as best as I can". My wife is the one who gets a little too stressed out. We're at an impasse as I have decided it is time to sell off a lot of things, and pay off debts. I abhor being in debt, and she is always "just get another credit card and worry about it later". So she wants to go on a cruise with friends in January, but I want to see our credit card debt down to zero by the next year. Thankfully my kids understand the evil of debt, my duagther even commented she skipped a trip with friends as she didn't have cash to pay for it. Medical bills and "emergency" things have kept the debt wheel rolling, so I'm like if we sell everything off, it goes to paying off the debt! Oh, interest for debt last year was $8400. I would love an extra $700 a month, but she is worried we will never get a chance to go on a vacation. That would pay for one heck of a nice vacation! Meanwhile friends down on the Texas coast are busy rebuilding their hotel. Aviation themed rooms, which was a blast. They pretty much have to gut everything down to the studs and start over from there. Out of the twenty units, they have six usable - but restricted those to rent only to families who lost homes but have jobs there. There are so many "looky loos" they would spend an hour driving 10 miles, pretty frustrating. So we will stay away until next Spring. Port Aransas, TX if you look at the map. Need to fire up the CNC wood machine to make them a few things they would appreciate... reminds me I still need to make up some leash hangers for the Golden Retriever folks. Our Yukon Retriever (the husky/golden mix) is at the Vets today. Poor girl has eaten in a couple of days, we thought the puppy had been sick, but wrong dog. She had eaten/regurgitated a t-shirt! She has a history of eating things like underwear and socks, but oddly enough passing them. No I do not recycle those articles of clothing. Out vet is arranging for ultrasound as the x-ray looked good, but she is out kid. Yes, our dog's tend to get spoiled, but when it comes to medical they get great care.
  22. Good morning!!

    Quick Hello and Good Morning to all. Mrs. T got up early to join me at my MDS meeting, as she feels my summary reports are too poly Anna, as I never complain. Funny one was holding the DBS reader when my good doc did the adjustment. Tremor went to no tremor while holding it. Both my Doc and Mrs T caught that, I didn't even think twice about it. Also increased my Aricept to see if that helps with cognitive issues, never a dull moment. My wife asked if I had place the flag outside the house this morning. For the life of me couldn't figure the reason, until she reminded me it was September 11th. I was thinking it was still August. Leih is tearing around, thankfully with her toy rope. For a moment I thought she had my cpap hose! So far, so good. Settling in nicely. One day a time, and I'm enjoying my morning espresso.
  23. I'm in Austin area. We still saw quite a bit of heavy rains that caused creeks to swell with flash floods, washing houses down stream. Thankfully we are on a slight rise, so winds are a concern, but if we flood it means 95% of Austin is underwater. Been working with rescues in getting displaced cats and dogs to new shelter. Lots of rebuilding to be done. Flood insurance is underwritten by FEMA and only sold to those who live in a 1 in 100 year flood plain. As mentioned earlier this is a 1 in 1000 event, so many homes outside the 1 in 100 year flood plane didn't have flood insurance. Basically if you are flooded 4' in depth, flood insurance covers up to that 4' mark. Anything damaged above 4' is wind damage, which is a different policy, has to be itemized as such. Between earthquakes, tornado's, and floods... floods are the worst as the first two are over after an hour and you can start. With floods it is a different game as nothing really to pick up so that first week is pure exhaustion.
  24. Good morning!!

    Thank You everyone. This little one will be a "Foster-fail" fail is a good thing was we will become her furever home! We've had other fosters and loved them, but Bob (our oldest Golden) never accepted anyone else after Emily (the redhead) came to live with us. With Leia, it was like they glanced at each other and he had this acceptance of "where have you been?" Hard to explain that look or feeling. It is so funny to see her interact with the other dogs. She observes, and falls right in line with the rest of the pack. Only time she is in a crate is when we leave the house (short errands) or a night to keep her from getting into mischief. She has figured out the "dog toy basket" is community toys, as they are shared but we keep a dozen in there. So she goes over and digs one out, to carry around. My wife hopes tomorrow is the day she gets to remove the arm sling. It's been six weeks, but may need it two more weeks. We make a fine pair, I have a hard time slicing bread. So I held the bread while she sliced with her good hand. Fun times!