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Everything posted by TexasTom

  1. Good morning!!

    Merry Christmas and a Happy New Year!
  2. 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.
  3. 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.
  4. 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)
  5. 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.
  6. 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"
  7. 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.
  8. 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.
  9. 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).
  10. 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.
  11. 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.
  12. 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.
  13. 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.
  14. 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.
  15. 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!
  16. Good morning!!

    My wife, recovering from rotator cuff surgery. Me with the little one. Not pile of "fluff" as evening routine is each dog stops next to my chair to be brushed in the evening. Thankfully eye drops and "pencil pushups" have let me resume reading once again. Lastest book (written from 1963) Full Tilt: Ireland to India with a Bicycle: Dervla Murphy
  17. Good morning!!

    Good Morning Everyone. Sunshine it out and I've had my morning espresso. It will be a wonderful day. Sold my truck and was missing the morning routine of Mr. Cardinal battling his nemesis, but thankfully my son's Volvo has a nice ledge for Mr Cardinal to contiue with his battles. Great Entertainment. We've had fosters come and go, so wasn't too excited about the latest "problem child" to show up at house. Often we get special needs Golden's who need lots of TLC and training to learn how to be a dog. NO collar, no microchip, and pretty much had lived on the street and scared to even get in a car or into a home. So latest had stayed with the first family for two months but failed at training, went after cats, and a list of little transgressions. We were asked "could you please consider fostering her for a while". Hmmm. At least I wouldn't have do to tick duty. Someone else pitched in for that one; my last foster had 100 ticks on her small body - I can remove them, but takes a long time for both the dog and the person. Since she had a medical clearance, and our resident doggies are all up to date on vaccines, she came into the house and was behind a 36" baby gate to allow nose sniffing. Well first morning she was "I want to join the big dogs" and jumped the gate! I turned around to give them treats, and she tried cutting the line, but the rest of them gave a soft growl (que clint eastwood dog voice) with "mind your manners, and get in line" My wife snapped the photo as she was speechless. Foster - Leia (smallest); Emily (my redhead Service Dog); Sandy (age 12); Bob (unknown age maybe 14 to 16 years old -- doesn't like kids on his lawn!) Oh foster is "Natalie" but when tired I have a hard time with NAT as both N and T need fast movement. Ally worked; but settled on "leia" as lay-a is pretty soft. Each is address one by one to come in the back door, food, etc. Hence names I can say, and they understand. I suspect we will be a "foster fail" by end of the week as she will have us as her new furever home. Oh, cats... not prey instinct, but she is part border collie. She want to herd cats, neighborhood rabbits, deer, etc. She needs work to and lots of energy. I suspect this is why they wanted her placed with me as I've had Bordie Collie mix in the past.
  18. Still fighting for a diagnosis!

    Lee, I've told the story about the the fellow who was still active on his family farm. He was first diagnosed, taking Sinemet at age 52.He said it helped. Amazing part was he was 90! and still active. So exercise and remaining active is key to delaying progression. My MDS fully gets it, but a lot of doc's will comment otherwise.
  19. Follow the DBS Road

    Scott, our thoughts are with you. My wife had rotator cuff surgery as the tendon was 90% torn. Two days later we had the call for "Emergency Transport Needed" of a 12 week old puppy with an Intussusception, which occurs when a portion of the intestine folds like a telescope, with one segment slipping inside another segment. Poor guy hadn't eaten in six days. Oh crud. Thankfully another family in Houston was able to pick him up and meet us halfway. Glad to say the puppy got emergency surgery, and a week later is a rambling little pup! My wife's only comment was "when do we go?"
  20. Need your opinion...on Retirement disability

    Stu, Another one checking in. Best thing I did was dropping from 300# to 240#. 6'3" so I never looked that heavy. Worst part of it was early on no weight loss. Frustrating to say the least. Rock Steady Boxing 3x a week got me moving, core exercises made a difference for my back. Cut out all sugar. No soda, not even "diet zero calorie" as they really mess with your body. Water, black coffee, or a (one) beer with dinner. No pasta, and cut way back on bread. Ya, no longer "pre-diabetic" as I was around 5.9, but down to 5.1 on blood sugar. (A1c) Weight was one pound every one to two weeks, but as I got down to 240 I need to increase my exercise. Smaller portions, more exercise. Size 44 pants have gone to 38. I've tossed all my 3x and 4x t-shirts. Slow progress, but getting there. Still wearing my cpap. AHI is under 5, but central apnea event's still messing with me. Don't try doing everything at once, but if you can walk two miles a day that is a great start!
  21. Newbie questions

    When I was 25 I had a doctor comment "if I didn't know better, I'd think you have Parkinson's, but you are too young for that". At 54 there wasn't any confusion as it was clear I had Parkinson's, but basically the comment why I hadn't seeked help years earlier. So glad to say for 30 years exercise & sauna was the best medicine. Diet, I have a very hard time with some foods. Fish (salmon) and Chicken are easiest for me to digest. Beef (4oz or about 100grams) is the most at a meal, pork is much harder to digest. So ground meat (typically beef in USA, 50/50 beef/pork in Germany) - small portions. Oh, I love maultaschen! Lots of green salads, berries, fruits, vegetables. Very limited bread and Pasta's. One good beer per day. Limited sweet (sugar, maximum added 25 grams per day). I try to eat vegetarian, but something like Gyro's is too tempting for me. I think a Keto type diet is best, but not always possible unless you always prepare all your own food. I lived in Reutlingen when I lived in Germany, hence my love of maultaschen and the next day chopped up maultasche with eggs! I still scream at my wife for throwing away old food. She cooks way too much, and throws out food after three days. Horrible waste of resources and money. I haven't made rumtopf for years, but that was good and I didn't toss out any fruit!
  22. dbs overstimulation and is explosion possible

    A friend of mine had DBS done 22 years ago. She had new battery, but just wasn't as effective in keeping her from freezing. New CT scan showed how far the leads had moved from original locatin. So DBS Surger number 2 with new lead placement. It worked great for her. Out of a wheel chair, and moving along with a walker. Best is to be seen by a Movement Disorder Specialist.
  23. DBS Benefits & Un-Benefits

    Lowell, You're a very wise man! I think there is a point of weighing options on everything. Just do what you think is best for you. My wife's 83 year old Dad Dad has Parkinson's, and when her stop Mom was talking about his diagnoses, she finally paused and asked my wife "how did you learn so much about it?" Small world. For me, at 57 when I had DBS done last year, without a doubt my medication was the the point when I went "off" I just stopped functioning. Couldn't write a note, nor speak clearly, so people assumed I was either drunk or an idiot. Oh my, so with DBS I still can function when "off". Who knows what tomorrow will bring, but I'll take it one day at a time. My latest CT scan shows tumors in my upper long. Sigh, not good. I had part of my lower left lung removed 18 months ago. Thoracic surgeon commented my blood supply was like a bowl of spaghetti. Chemo doesn't touch this stuff, Immunotherapy hasn't been invented yet to treat this type of lung cancer, surgery is best option (but not in my case), so radiation is be best bet. Just wait for it, and like a star wars movie just blast it when the time in right. My oncologist is good, but when she thought "I didn't understand" I smiled and said it was great news as I may not have to worry about Parkinson's! One day at a time.
  24. Newbie questions

    Exercise is good for everything! Muscles as they atrophy while not being used, as you loose muscle mass it will affect your balance. Germany has some excellent neurologist, but I'd just start with a regular doctor to have a full physical and blood work. Where in Germany (Wo genau?) are you located? Summer time I was out enjoying long evenings bicycling all over the place, during the winter enjoyed the same trails for cross country skiing. I miss Germany!
  25. Good morning!!

    Life is good. Busy day. 2 mile walk (40 minutes), riding mower out of service so push mower back yard (20 hours); then off to Rock Steady Boxing (1.5 hour) My Pebble watch has 4 hours of activity for the day (new record). 98F with 90% Humidity (way too humid). Dogs are worn out and joined me for an afternoon nap.