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TexasTom last won the day on July 2

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About TexasTom

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    Austin, TX
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    Electronics, Aviation, Machining

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  1. 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!
  2. 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.
  3. 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.
  4. 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!
  5. 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.
  6. Sadly, all to often. I have great days and bad days. Sometimes I can do great, other times no so good. I suspect this is part of the progression. I try NOT to answer the phone anymore, but use email at work. Memory is slipping, so I've added Donepezil (generic aricept) to see if that helps. DaveN - post surgery, give yourself one month per hour under anesthesia until the 'brain fog' clears. So when you are under for an hour, it is about a month for your head to clear.
  7. For those with DBS who are having issues getting everything dialed in, please reach out to your Medtronics (if applicable) rep to join you at your MDS programming session. DBS is still an art, as much as a science, so your MDS might be working on a 10 x 10 matrix that helps 90% of their patients. The other 10% have to realize the possible matrix is like a 200 x 200 spreadsheet so you may need something different. DBS isn't a cure all, but to have a few more years of being productive at work it was well worth it for me. Time is limited, so I'm out of here.
  8. Over all, still positive here. The "loose their speech" does affect some, but in my Parkinson's meetings & Rock Steady Boxing class I haven't seen a decline of speech. One of the things I did not expect was less chocking/gagging. I love Tortilla chips, but often eating out I was gagging so badly I just didn't touch them, so that has improved. Freezing. Much improvement. Balance... I'd say a wash, I don't fall often but pre and post about the same. Buttoning a shirt, shoe laces... Huge Improvement with finger manipulation. Reduction of medication has been an improvement. Dystonia... used to wake me in the middle of the night with twisted hand and twisted foot. Huge Improvement! Peripheral Neuropathy. Much more aware for the burning. Irony is we addressed the Dystonia, so now I am aware of Neuropathy issues not fun at all. Adding Gapentin to my daily meds. Nothing new as I remember thinking my feet were on fire a long time prior to DBS. Cognitive... wash as I know I'd space out before DBS. I suspect this is just a progression of Parkinson's. Adding Donepezil (Generic Aricept) to my medication to help with memory. I gave up flying years before my Parkinson's Dx. Weight, I had dropped from 300# to 235 (??) at the time of surgery. Went back up to 245# and have been holding around 240# since then. Bottom line is I had to cut out snaking on cheese and crackers when taking meds every three hours. Now with meds every four hours, gives time to snack. Sigh. There is risk, but addressing DYSTONIA and wearing off of Sinemet was my reasons behind DBS. So it addressed those. Not a "fix for Parkinson's" at all. If it gives me a few more good years, why not. Enjoying a walk with my faithful Golden is worth every moment. There are risk with DBS, doesn't cure anything, but I had two reasons (dystonia & med wear off) that it addressed. I returned to boxing too soon (take it easy for eight to ten weeks) no regrets. I know some people who didn't fair well with DBS, but I'd say over 90% had improvements worth while.
  9. Stalevo = Sinement & Comtan. Comtan helps the Sinemet stay in your system longer, so you get more effective dose. Prior to DBS, I was taking it every three hours. Tremors would return after two hours, making it near impossible to get anything done (no keyboard, nor mouse). I'm doing pretty good today, taking just one 25/100 Sinemet every four hours. Six months since I had DBS, so life is good. Getting Sleepy after eating is normal, often you can space out meals to smaller ones. My wife loves dinner at 7:00PM from the days when she would work until 5:30PM and we had a household full of kids. Empty nester, she isn't working, but still likes dinner at 7:00PM. Works for me as I take my Sinemet at 6:00PM, so no issue with protien blocking the uptake of sinemet. Also I have been doing something I have done in years, woodworking after work! Just fun to get out into the shop for an hour before dinner. Oh, finally talked her into going to Snap Kitchen. She cooks for eight, which means a ton of food goes into the trash (which drives me crazy!). None of the "pick three meals a week and we will ship to you" works for us. I prefer somethng like the Grilled Kale Hoppin John but she likes her meat main course. I'be been enjoying vanilla ice cream and fresh blackberries in the evening (small dish), empty stomach for when I take my ER Sinement (extended release) at 10PM.
  10. We had our annual Golden Retriever Rescue group swim this weekend. Storms held off, but 110 Golden Retrievers and 117 people it was a great turn out. We took the harness off my Golden, who is my Service Dog, and told her to go play! She was swimming almost non-stop. Few hundred tennis balls, but she would get a sandy one and come up to the ball bucket and drop it in and get a new one!
  11. It has been getting worse. A friend was over last year, and during a football game there was a Lyrica advertisement. He quipped about another "made up disease". It was the straw that broke the camels back and I lost it. Even my wife was shocked, but it is just beyond description. Closest I can explain it it is it feels like my feet have been submerged into boiling oil. I'll wake up from the pain, flip the covers off to see everything is OK. I kept thinking "did I step into a fire ant mound?" when this started a few years ago. Gabapentin is working to help "mute" some of it. Intense work outs help. If I can "tune it back" it helps to go walking/hiking. If I am just sitting there watching TV, it seems worse. Middle of the night, yep only help is to get up and walk around. Walking outside on cold concrete helps with the feet. Had a great weekend, active at a Golden Retriever meet, Parkinsons Pot Luck, and spent all day Sunday in the shop doing wood working. As long as I remain active, it helps. Gabapentin helps me remain active.
  12. Linda. My father passed away 20 years ago, shortly after my Parents 50th Anniversary. Mom passed away a few years ago. She figured 88 was a good age for her, woke up spitting mad on her 89th Birthday. My Sister asked what was the matter "Momma went when she was 88, my SIster passed at 88, and I figured out 88 would be fine for me. Didn't plan on 89! Yes, she passed before her 90th. Two girls, four boys. I'm the youngest. All of us were very curious active kids. These days they'd label it as ADHD but we had fun with build forts, running around the neighborhood and doing all sort of things to burn off our energy. Dinners at home, or my Grandmothers house. My parents going out for dinner was a very rare occasion. Dad had found an ironing roller for my Mom to help out with those items to be ironed (School dress code was navy blue skirts/pants and white shirts). We only had one pair of pants so you put them off before school, took them off immediately after school. Ironing machine was expensive those days, My Dad worked part time in an appliance store and managed to take in a broken one and repair it, and brought it home for mom. Wishing everyone a happy Easter. Time is up for me, need to step away from the computer for the rest of the day.
  13. I went shopping. In my mind I'm repeating eggs, whipping cream, baking powder. Just three things, I should have written them down, but just three things so I got it. Park the car at the far end of the parking lot, place was packed. Three things, that is all I have to remember. Truck backed out suddenly, startle reaction, fell over (remembered to tuck my head in). Got back into the store and came back with Ice Cream, coffee, and baking soda. My wife now writes out the shopping list.
  14. I was thinking gray, which is depressing. Give me a bright yellow or red tulip. Blue skies, nice sunny day. The tulip has been international symbol since 1980 when Dutch horticulturalist with Parkinson’s, J W S Van der Wereld, named a new tulip after Dr James Parkinson. When I first looked at that design, I was "meh". More I look at it the more I like it. Parkinson's affects everyone, doesn't descremenate, but just hope they unlock the mystery of this stuff. Till then wear the color you love, with a "fight Parkinson's" or whatever message you wish. The tulip has been international symbol since 1980 when Dutch horticulturalist with Parkinson’s, J W S Van der Wereld, named a new tulip after Dr James Parkinson.
  15. Linda, I'm glad to have you as a friend. As to a few others, well Mom said it best "If you don't have anything polite to say, don't say anything at all". I miss Mom, very wise women. I finally rearranged my home office. Still working, grateful for the gifts I have, but at times realize there is a whole world out there and I need to step away from my computer. Oh, today is the anniversary of my parents 70th wedding. I still count my lucky stars to have had such wonder parents. Of the six of us kids, five are doing well. One is bitter about life in general and feels he had the worst childhood ever. My only thought is what we focus on brings out the best, or the worst, in all of us. Always amazed that some people can be in a lush garden, and yet just focus on the weeds. Meanwhile I'm up early, all three dogs camped out in the office with me. I've had my morning espresso and looking forward to a nice sunrise. Life is good.