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  1. 6 likes
    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.
  2. 6 likes
    Morning I agree with Patriot anybody can write what they want and it is up to us if we want to read it. Pdmanaz you can write about anything your heart desires and if I want to read it I will. Bard
  3. 5 likes
    Why can't Linda post what she wants? If anyone doesn't like her posts, they can simply ignore them. Easy!
  4. 4 likes
    This fell out of my book today.... peace- LAD THE PRAYER BE AT PEACE (By Saint Francis De Sales) Do not look forward in fear to the changes in life; rather, look to them with full hope that as they arise, God, whose very own you are, will lead you safely through all things; and when you cannot stand it, God will carry you in His arms. Do not fear what may happen tomorrow; the same understanding Father who cares for you today will take care of you then and every day. He will either shield you from suffering or will give you unfailing strength to bear it. Be at peace, and put aside all anxious thoughts and imaginations.
  5. 4 likes
    Good morning Everyone, Hi Ell, The Count and PapaJack, Dianne, and my longtime friend from Ireland, , Emma. I Hope everyone is well. Linda, my dictionary says, well it didn't say, that would freak me out if I opened it and it spoke. I looked it up in my trusty dictionary and read that porridge is often oatmeal but can be any cereal grain boiled in water or milk until thickened. The word is a variant of the word pottage which maybe refers to stuff boiled in a pot. While we bore everyone with our porridge dialogue Linda I will add just this: if a person had only 3 dollars to spend on food, it would buy you a lot of good nutrition and fill your tummy many times if spent on plain rolled oats to boil into porridge. I have a totally energy efficient clothes dryer that can dry many loads of laundry each day. Unfortunately it has been broken down for awhile and I was running short of clean clothes. Yesterday I replaced the broken clothesline, ( not quite broken, but it was snapping strands with a heavy load a couple weeks ago) and did some laundry. Last night I finished folding and putting away 23 underwear, 18 pairs of socks and 19 teeshirts. And a bunch of denim jeans, golf shirts and towells etc.. Sorry, reading back I realized that I just gave you too much information. I could delete that above stuff but I am going to expand on it. My Mom and Dad raised 6 kids. I never had a lot of clothes, you had to take care of them. When you got home from school at night, first thing you did was put on those old pants with the patches, and the old flannel shirt with the arms cut off. My grandboys, still young but old enough seem to have no thoughts about making clothes that are good, could be kept as good. But now I talk like an old person. I'm offtrack again, Good thing that I am not driving a train. So, when I get new underwear, in theory I should throw away the old stuff. But sometimes I think to myself, it isn't that worn out, I would of been glad to find a pair that good in my dresser as a kid. So Mom and Dad, I have made it. I am a wealthy man. I own at least 30 pair of underwear. Up in the first paragraph I wrote "that would freak me out". It reminded me of this. My grandboy, aged about 6, was remarking on something bad that had happened to his friend and Tommy said "that would freak me out like eating cold muffins." Gotta get going. Warm muffins to everyone. jb
  6. 4 likes
    Just a brief post cannot believe that is a half year that I decided I could no longer take care of my DH 24/7. It was the most difficult decision that I have ever made. But thanks to God that I did. He loves it, they have something going on every day. Today was Gardening and later everyone came in and had popcorn and lemonade. His PD has remained the same, except one new symptom which is slight drooling which are at times bad, other times not so bad. His speech has gotton much better now he has so many residents and nurses to chat with every day. His tremors come and go. He is in a wheelchair, but everyday they get him up and uses his walker and walks with the nurses. I could go on and on but I am feeling so much better myself, and I go every day for four hours and visit and take part in the afternoon events with him. Alot of the residents look forward to my coming, as so many have no one. So I feel I have found my mission making not only my DH but many of the residents a better day.
  7. 4 likes
    To whom it may concern I’m 71yo and I was raised going to church and continued mostly through my adult life. Over my life time I’ve see the results of religion on cultures as well as individuals all in the name of some god whether it be the Christian God or whatever. The history of religion as I see it is one of control, deceit, death and destruction. Cultures have been decimated because Christian know better than everyone else how they should think, live and believe. It’s not enough for Christians to believe what they choose but seem bent on sharing that message regardless of the outcome and often in spite of the outcome. I have seen too many times in church the concerted effort of mass hysteria and brain washing all in the name of God. I see most Christians as bigots and racist with absolutely no understanding of human rights, human nature and the right to be human and simply left alone. Blue laws have existed in many states because Christians wanted to control what everyone else does and when and how they do it. The world and all its religions continue to fight for dominance because every religion feels they are the only one and true religion that represents the true God. If you were born in the Middle East you would more than likely be a Muslim, if in India a Hindu or Buddhist or Sikh. You will be the religion of your culture and they believe just as strongly as you regarding their God or Gods. How old is the earth? 6000 to 15000 years old according to your Bible? Do you believe that? Where is your mind on Evolution vs Creationism? Can any intelligent being on this earth think the world is only a few thousand years old? Or, even humanity is only a few thousand years old? How about Noah’s Ark? How many animal species existed at that time and how many could they get on the boat? Think about all the living creatures that are still being discovered today or haven’t even been discovered yet. Absurd the things modern and intelligent people will believe. Do you pick and choose your scripture to suit the moment or situation? Do you just ignore the parts of the Bible you disagree with or don’t understand? Religion is very dangerous as witnessed even up to today. I’m not going to argue any points but simply stating why I want no religion in any of my discussions on this forum. I am a free man to think and believe as I wish – I do not need a book of instruction to make my life valuable. I have children that love me and I love them. Sin or original sin???? What is that “an immoral act considered to be a transgression against divine law.” Nothing but a definition of something against Gods mandate. Gods law was very much different in the Old testament than it is now. I have never and will never believe in SIN. We as humans make mistakes in judgement or action but to me that is a mistake. I do not know if a God exists or not but I can say if he is accurately represented by todays religions I want no part of it. Ms Garren, a threat to have me banned? Again - who are you to exercise such power? I do not need this forum to survive or be human or happy or have a meaningful life.
  8. 4 likes
    Good discussion. Like Patrot said it can be good stress...i tremored at a symphony...can't imagine if I had been to a rock concert! I tell grand kids it is my happiness barometer...happier I am, tremor increases...they think it is funny. On a serious note, I have avoided adding meds when stress increases symptoms. Once environment changes, symptoms relax
  9. 4 likes
    Some one explained exercise like this to me and it help me keep up the motivation. (I have almost the same issues you do during and after exercise). "Doing an exercise routine that gets the heart rate up for 1/2 hour or more is like making a deposit in your 401K. It is not immediately beneficial but will help you in the future." This helped me to understand that I may not see a benefit that day, but I will see it in the future. I can say that after 2 years of maintaining an active life with exercise, I am still on the same dose we first found worked for me and my last MDS visit I had the same scores I did when I first saw them. Good luck and hang in there. It does get better. Attitude is everything with this disease. Every day try and find something to celebrate (be happy abut). It can be as simple as waking up in the morning and putting you slippers on with out meds. This way of celebrating the little thing helps me stay in a positive mind set each day. Blessings Adam
  10. 3 likes
    Good evening e Hi LAD-y, you, or is it the turtle, are correct in saying forward is forward. And Attitude is a very big thing. I can have PD and be miserable to the world, or try to be pleasant. Either way, I still have Parkinsons. LAD-y (above) You must be very proud of your son advancing his education in health care. Peace, the grandson , story is cute. Yours too LAD-y. I have a similar one of my daughter. She wasnt very old, I had to take her in the mens rm. It wasnt busy, I used the urinal which was new to her. She told me that she had to pee too, can I use that, and she pointed to the sink. The world is funny through the eyes of a 3 yr old. And my son, about 5 years old. We had to pick up 4 wooden chairs for our new table set to replace damaged ones. They were in the back of my open truck and we were concerned about them if we stopped at the restaurant to eat because some one could steal them. After a discussion which likely seemed like hours to a 5 year old we were likely ready to drive on to eating at home, Mikey said "why don't we each take a chair into the restaurant and just sit on them while we eat" My wife and I looked at each other and laughed at our over worrying. The four of us sat where the truck was in sight. Problem solved... Im tired now, I will try to get caught up tomorrow.
  11. 3 likes
    Thanks everyone. Just an update. DH had a high fever and seemed in pain. The hospice nurse's solution was morphine, but I was hesitant. She said pain and fever is normal for end of life. The aide and I made a discovery. He actually had an infection that had probably been brewing for a while--epididymitis--which likely came from a UTI. A very painful infection. A course of cipro stopped the infection. The fever and pain are gone and he is eating again. Morphine can mask treatable problems. He is still bedridden, profound dementia, but the last few days he has been enjoying produce, his favorites, corn on the cob if I hold it for him and rotate it, watermelon, and peaches off our tree with ice cream. He may make it for the tomatoes, cantaloupe and plums. I am tired, but carrying on with the tasks.
  12. 3 likes
    Hello all- Well...I finally got the courage to bring my son (who will be graduating as a Physician Assistant) with me to my yearly neuro exam. He's never seen a complete workup and mine tend to be pretty intense. Plus, I will be starting an oberservational clinical trial that day as well. As much as I wanted to shield my kids from my PD, I think it's important to educate others - especially those in the medical field who don't specialize in neuro. My son will be a hospitalist so he may have PD patients and actually be helpful in a hospital setting. I also know that he is well aware of my PD and all the meds I take....ugh....I guess I will count my blessings and hug my kid for coming home to escort dear ol' mom to her appointment. I do however have a tango video to show my MDS:) Good night all.... Muffet...GInger
  13. 3 likes
    We had hot dogs on the 4th and hamburgers and baked potatoes and baked beans. Sister brought Rice Krispy treats. I forget the rest. Porridge had to originate sometime before Charles Dickens wrote Great Expectations. "Please sir, may I have some more?" We came home from school and changed our clothes into 'play' clothes. When in high school we would take our dry clean only clothes down to the laundromat and used the do it yourself dry clean machines. Once I had a 'good' dress on and in the back yard found a fountain pen which I picked up to examine being a curious sort of person. Squirted ink all over my dress. My mind is blank on the rest of that day. Did it cure me of being curious? NO! I gave my Dad a straw hat once and a white shirt. He wasn't wearing them instead of the shirt that had a hole in it and the hat was just as bad. I asked him why he wasn't wearing the new stuff and he said the old ones were not wore out yet. His idea of wore out was different than mine. And to top it off. I had my parents and sister staying with us for a month or so and I told my sister not to eat certain things in the fridge cause they were too old and I was throwing them out. She ran and got my mom and they proceeded to heat them up and eat them for lunch.!!!!! There were times I hoped I was adopted.
  14. 3 likes
    I agree with all your comments above. Mornings are worse. I think parkys get stuck in a position in bed. I think it is normal to roll around in bed as the night goes on. But when I sleep (If I sleep) , i don't move. To lay in the same position for even 3 hours makes for morning tightness. Mornings involve getting my legs out of bed. feet on the floor. Rise up to vertical, make sure that I am I balanced, and then do the "Hurry to the Bathroom Parky Gotta Pee Shuffle, " And then the wakeup meds, 2 cups of coffee, cereal, check the internet to see if any Rich, Lost Uncles are trying to send me money. It takes awhile but my legs and feet, arms and hands get moving and I get dressed and get outside into the morning air.. If I get into my daily routine and get working at something I can feel quite normal and can even forget a bit about the Unwelcome Guest that we drag around with us everyday. By night time, I become worn out and tired again. The foot starts to drag, back is tightened, Hands slow down. Yes, mornings are bad. I usually wake up at some point in the night, and f I am close to wakeup time, I will take some levodopa. That helps some. This leads to another point. Not to sidetrack your thread Never Give Up, from Kentucky (btw, when I was in grade school I would read every book about Daniel Boone that I could get my hands on) I have now sidetracked my sidetrack... When I encounter someone in town that I haven't seen for awhile, they may ask me how I am feeling, and will sometimes remark that I am looking good, (which may mean that I look better than they thought I would be looking), and I say thank you, yes,. I am doing ok. And I bite my tongue and don't say, "Yes, I am pretty good right now, I have about another hour of good time, that is why I am doing grocery shopping right now. But like Cinderella, I know things are wearing off with every tick of the clock and when the meds are working, I got to be getting things done and that is when you see me in town, outside, and functioning pretty good. But you don't see me first thing in the morning. Your opinion of my well being would certainly be different. And as another sidetrack. If I feel good say for 8 hours a day, and thats when people see me, they are likely thinking he should be working!! Follow me the other 16 hours into my cave and see if you still think I should be fixing your roof as I once could do. good day to all, jb
  15. 3 likes
    Here are some ideas: Check the PWR! site for therapists anywhere in your state. You may have already done this. If you do find some, call them and ask if they could talk to the therapists close to you and tell them about the benefits of going through the PWR! training. professional-directory Contact physical or occupational therapists in hospitals or outpatient facilities and see if you can interest them in going through PWR! training for therapists. A real opportunity to expand their practice. Consider going to Tucson (I'd wait until the weather cools off and I live in Arizona) and do a 1:1 session with Becky and her staff. (3-5 day 1:1 physical therapy) Pricey but worth every penny and Tucson is a great place to visit late fall or in the winter. They have just started taking some insurance plans. pwrmembership (look at the lower right hand corner of the web page). Follow up with LAD about how they started classes in their area and call the PWR! folks, during the 2017 Retreat in Scottsdale, there were several people who had started PWR! Moves, Rock Steady Boxing, and more. They collected names and were going to do an e-mail list of how people got things going. You could probably be added to the list. Some had NPF grants ($5,0000 or so) and others worked with a PT, boxing gym, trainer, etc., to get the training and then start the classes in their hospital or gym. Best story was one couple whose son-in-law happened to be a personal trainer and worked in a gym with a supportive owner! That precious fellow attended the retreat with his in-laws! I asked if he had a brother!! You can also start with the videos and book on the PWR! website but not as helpful as having a trained therapist. With a trusted physical therapist and a yoga instructor, you have a good head start! Maybe next year, you could come to the PWR! Retreat and they could come as a volunteer therapist! Last, but not least, if your husband isn't seeing a Movement Disorder Specialist, you might think about making the drive to one of the cities you. mentioned to see the best one you can find. I believe care from a MDS really does make a difference and they may be able to support you getting community exercise classes in your community. One more idea, my son lives in Hawaii and when we go to visit, my husband goes to special Parkinson's classes through the YMCA there (we went to more than one location). A community center or hospital in your area might be interested in starting something similar. I don't think they were PWR! trained but the classes were good (a little less intense as PWR!). Good luck! In my humble opinion, Parkinson's is not for sissies! I get tears in my eyes when I watch how hard my husband and my sister work to exercise during the PWR! Retreat.
  16. 3 likes
    Spent the last 3 days crabbing in the Puget Sound from my kayak. Started Saturday morning and wound up spending the night at our friend's home since we didn't finish cooking that days catch until pretty late. Turned the pots again after church on Sunday, then headed home to atke care of the chickens. Monday morning (today) went back and pulled all the pots and called it a weekend. Didn't do nearly as well as I'd hoped, and I think that more than once someone else took crab from my pots, but we still wound up with around 15-16 keeper size Dungeness crabs. For those not familiar, 1 dungie is a pretty large meal for my wife and older kids, and 1-1.5 makes a meal for us guys depending on what else is being served. Compared to the blue crabs on the east coast, it would take a good 3-4 blues to equal the meat on one dungie. If I can get a picture or two from DW I'll post them. Shared a bunch with our friends. Rest we still need to shuck and freeze, which we'll do tomorrow. Got the kayak fishing tournament on the Oregon coast coming up in just under 2 weeks. Before that we're heading to Idaho for a few days. Going to take the kids to a waterpark one day and hit a lake the other couple of days.
  17. 3 likes
    Same here, and I'm only 37 and always been physically active [sigh] I started with joint pains when waking up last year, only that I didn't know back then they were due to PD. Now I'm starting to have a lot of stiffness on my left-side leg muscles (my symptoms are on the left side). Like you, my first steps into reality are not pretty, but the good part is that I know it's temporary. I've noticed that, once I get moving, for the most part my pain goes away. I also think it's a good idea to start the day stretching what is stiff and moving what hurts. A 20-minute yoga practice, for example.
  18. 3 likes
    I hereby declare that the Parky world honors jb49 on Canada Day. jb started this Good Morning thread on Canada Day in 2010. It has been a beacon for me on darker days and a true joy on brighter days. Happy Canada Day, dear jb! Dianne
  19. 3 likes
    So today was a kicker! I am the eternal optimist. With the prevailing wind against any lodging anywhere, I was able to get a lttle cabin on the lake for a week! For those who dislike long posts, I'll skip details. I am a firm believer in concepting.."anyone who can conceive and believe, wiill achieve." So on our bucket list...was a cabin on a lake, a small town 4th of July parade (which goes directly in front of our cabin), waterfront for kayaking, and quiet roads to ride big blue...BAM ! All in one pkg!! 🤗 I concepted so HARD to have a bed to sleep in...our little van was great when I could curl up like a snail next to DH...not so now...hmmmm, restless leg X 2...acting out x 1...frequent bathroom breaks x 2...etc...etc....WAY more than we could do...so we are especially grateful to have more space. We start tommorrow. Grinder, these van conversions are great...started by Canadian company...called Roadtrek. They sell for nearly $70,000. We got ours from my mom with low mileage...but it is sooo great to have potty, bed, and a cold drink within hands reach. We spent the day at a national park lakeside...and seldom left the van...we were tired...but reading a book while seeing the water, sky, and trees ....protected from bugs and sunburn......it was all good. Actually, to sound corny, I think of the forum each day...we are grateful, and recognize not everyone has this opportunity...I am sharing to prove that even with the darkest clouds ahead, we can still exercise a degree of control of our lives. As I have said, quite honestly, DH & I were wasting most of our time inert...resting all day...just existing. Our bucket list forced us to move again...and tho we can't do as much, we see the world is moving...families are at picnics...teens are on jet skiis...and it motivates us to want to immerse in nature's bounty...feel wind, smell newly cut hay... or decipher images in clouds together... it ain't been easy...but so worth it. 😎 NN
  20. 3 likes
    PatriotM and bard Why ? I see at least 2 reasons Imagine a group of people discussing spme topic and then someone else comes up and starts talking on a completely different topic. I do not know how to talk in such conditions. It is difficult to ignore the person who climbed into the conversation and is trying to take him aside. In addition, the topic of religion is provocative enough. Pd answer with a speech about antichrist, I can insert a couple of posts about the Communist Party or about Jewish mitzvot (for your choice), someone else will glorify spirits. Certainly, each of us has the right to talk about what he wants but as a result there will be a big dump.
  21. 3 likes
    Sounds like a great trip. I especially like your technique for working around Parkinson's with the conversion van and rest stops. Spit in Parkinson's eye and LIVE, explore, dream, discover. Even if it is only for a few hours at a time. Got to look into getting me one of those vans, now. A rolling bed and rest stop. Pure genius.
  22. 3 likes
    Hi guys! I really apprecate the effort to get pics. I wanted to share our trip thru pics. Linda, i did that..get pic to url..then it wd open..no luck. Maybe admin can help. Thanks Grinder for trying. In SW it was 120 when we left..we are in Idaho...absolutely beautiful blue skies, green trees, and white foamy rivers. Being from NW, I love the vibrant contrast in colors. It is stunning compared to the desert we now live near. Seems like I am home. so far this has been a perfect trip. We chose to use our 1990 converted van..and yep, it is still the same experience....Heater and frig aren't working..we are huddled together to keep warm.....wouldn't want it any other way! I was lucky to get a reservation in RV park usually packed during summer..but only 2 nights..so we will have a great adventure when we leave ...trying to find a home on 4th of July! we were exhausted after packing to leave...we slept 2.5 days in hotel. Then we felt prepared to continue...reality strikes...regardless of effort, just can't do as we have before....so we will adapt. We will travel and camp about 2 days, then find s bed and sleep 2 days. Better than not doing at all. I prepared .. we have 10 days reserved in Montana...10 days reserved on Vancouver Island...so we wont be traveling all the time and can rest. it kinda looks like neuro may be correct in MSA dx. Symptoms are progressing fast. Ya wouldn't know it with my writing...but being able to take time in texting makes it possible. Cog issues are worst.. Short term memory is a lot harder to deal with than I ever imagined. I am SO grateful for my humor...just can't write a script so funny as what I do or say. DH finds no humor in my scattered thoughts..I can see pain in his eyes when I am off the planet.. I think I know rigidity, spasicity, and dystonia now...they can all be in the same place at the same time. Quite an experience to analyze .. which I've stopped doing...there is no logic to PD...regardless, one cant predict or prepare...I am concentrating on present time consciouness...saving energy for important things. i cannot emphasize enough ...retire early..scale down..remove stress and obligations...and love the ones you love. Now. I am grateful DH & I have had a full life together. My heart aches for young YPWP...we will only know the "why" after we pass....to use energy on finding answers to questions that cannot be answered is wasting time...assets are nothing ...relationships are everything. I cannot justify why I have been so blessed...I can only pray for those less fortunate. in the morning we'll try to ride big blue around the lake..."try" is operative word..little sleep tonight...but after all, for PWP, "try" is our world, right? Hope erveryone discovers their peace and purpose. Thanks for letting me submit a "long" post. (Smile) NN BTW..took over 90 minutes to write this...but enjoyed sharing.
  23. 3 likes
    Dear Linda, Compare the length of your posts to the post of the others . Try to write in 2-3 sentences what you want to say - taking into account that this info should be useful for the author. And maybe you will see why pdmanaz respond so angry. When someone writes such a long posts it makes very difficult to navigate through the thread . Especially when the long post has almost no useful information. If you answer pls try not to write more then 3-4 lines. Thank you.
  24. 3 likes
    Call me weird, but I like to mow the yard. I mow about 4 acres and would mow everyday if I had time. Today, I am completely caught up. But the best thing that just hit me today (ironic) is why I enjoy mowing. I always said it give me time to think, tru but also the sound and the shaking of the mower over powers the unstable interior tremors I have. (newly diagnosed, still trying to figure out what every feeling is). Mowing to me is really peaceful and gives me a nice sense of accomplishment and easy to see progress. My wife just don't understand and my neighbor thinks I am crazy, but that is OK...lol. its all GOOD.. thanks
  25. 3 likes
    I got pulled over a while back. The cop noticed my tremor and said that I looked nervous. I explained that I had PD and he didn't say anymore and gave me a warning. However, if he had believed that something more was wrong and demanded that I walk a straight line, I'm not sure how that would have gone. Therefore, I now carry a copy of my diagnosis in my vehicle so that I can prove that I have PD.
  26. 3 likes
    Another of my favorite verses: Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. (Phil. 4:6,7) I work hard on this one, having to keep reminding myself of it often.
  27. 2 likes
    Good morning, World. Well, I am up and attem again. I have some of the typical PD symptoms and I Know that I am only months away from being 60. But this first hour of getting moving again is getting more difficult. There, I am ok again. There has been some changes in my Life, and more are coming. Dianne, I am so sorry that they messed up your pump. You have suffered the travails of PD more than most of us could imagine. I sincerely hope that you get that fixed and continue to inspire us with being thankful for little things like a tasty Poppyseed loaf. You don't ask for much. Good for you for finding a Fix. Bless you! Top of the morning to you Linda and Pathfinder. You sound busy Pathfinder. But I am pretty sure that you are happy with the type of busy that you have on the go. Yes, you are. I just looked at your picture and I am pretty sure that I saw your eyes twinkle! Linda, I just realized that you don't use a forum name. Which is fine, but if you wanted one, we could likely come up with one. Hi, Em, that is so nice that you continue to keep up with your Dutch relatives. That is nice that you got away for a little holiday with your son Sean. Is he going to do more school or is he looking for employment now? Ah, to be a young man and holding the world by its tail. So great that you have him to help you out Em. Take care. LAD-Y, It is good that you push yourself physically and with 3 sons and a husband, and parents, your days must active and full. I saw an interesting thing on FB yesterday. It was a sketch of an iceberg with the upper part which was above the water labelled "What you see" and contained the heading "Tremours". The lower part was labelled as "What you don't see" and it showed the massive part of the iceberg,below the water and contained headings such as bladder control, dyskinesia, bradykinesia, dystonia, swallowing issues, constipation, anxiety, fine motor control, I probably should just go back and find that link cause I am sure that I screwed it up. Oh well, the day is still young, I'm sure I will screw up more things before the day is over. HAVE GOOD DAYS EVERYONE. jb PS. I can get mixed up with names sometimes, but I know that we are missing Patricia. Hello. How are you, you, you, you and his voice echoed up and down the Eastern Seaboard. r.
  28. 2 likes
    I've been a member of this forum for a long time, but not usually a very active poster, esp. in recent years. But I've been thinking for a while that I should contribute what I have to say in hopes that it may be helpful to someone. I was diagnosed with PD in 2007, but believe I had some of the symptoms for many years before. My worst symptoms were a huge tremor & an unusual & painful dyskinesia that drew my right leg upwards, leg muscle spasms so bad that at times I could not walk nor stand for more than a few minutes. Sinemet never did much for me & caused muscle spasms/dyskinesia, even at very low doses, within a year or so of taking it. I had to use a walker, stopped driving, & withdrew from my usual local PD group activities & classes (a mistake, of course), because I felt I had to focus on figuring out what in the world to do about my situation. Over a year ago, I had bilateral STN DBS, in study for new Boston Scientific Vercise device, not Medtronic. Since then, I've had some very good moments, but also some very bad. We constantly struggle to get the device settings properly programmed, or maybe they actually are but the PD has just progressed, or maybe the surgery itself caused some problems. Would I do it again? Yes, because my extreme tremor & dyskinesia have both disappeared, and they really were intolerable. But the side effects are really bad, too: weight gain leading to serious diabetes problems, severe speech & language & swallowing problems, serious balance & walking problems, plus some possible cognitive effects, including word retrieval & fluency, all of which were excellent as tested before DBS. Negative effects on social functioning are very significant. From my experience, I would have to say that DBS can be wonderful, but at this point in its development (it may improve in future), you should only consider it once your symptoms have become so bad that you can no longer tolerate them. You must decide that possible DBS side effects will not be even worse. Unfortunately, it's often a trade-off, you may lose some old symptoms & gain some new ones. If you decide it's still worth it, pick a good experienced surgeon, make sure there are good experienced programmers readily available to you, and remember that DBS works best for certain symptoms & not much or not at all for others. And remember: Exercise! I'm doing Rock Steady Boxing, learning to jump rope, & planning to resume PD yoga & dance. Good luck to us all!
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    It is good that you are trying to understand and help him. I just used my examples to hopefully help. No need to apologize. There are lots of options and help available. That is the good part. Have you called NPF? They helped us understand a few things... for free. I recommend calling together. I am sorry to hear of your struggles. PD can affect many things. Since he is a pilot, I suggest having a plan to figure out what is next when it is adversely affecting his job. I know pilots hate to be grounded, but PD has a way of forcing us to make new plans. I hope things go well.
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    Hello Forum Friends: As summer unfolds I find myself again logging in often and doing "research" about our unifying condition - the Parkinson's journey. Thank you all for your courage to continue your journeys and share your experiences. I wish you all the very best in pursuit of purposeful, worthwhile living! As you may have seen in other posts, the MDS my DH and I finally got in to see at Johns Hopkins has moved to Las Vegas, and while I'm not opposed to occasional recreational gambling, my health insurance doesn't reimburse for cross-country travel for doctor's appointments so I can't justify trying to combine trips . I am researching alternative advisors this month. The name of a respected and highly recommended MDS at MedStar Georgetown University Hosp. has been suggested and is on my list of potential "candidates" (thanks Daven) as is another friend-recommended MDS associated with Annapolis Neurologists. I am hoping to do some "background research" on at least 3 options for my DH and I to consider and then set up initial interview appointments. As you may have noticed, my approach to medicine in life is quiet analytical and practical. While I believe effective and ethical medical practitioners are deserving of great respect and consideration, I don't believe they are "anything more than" highly trained, intellectually intelligent advisors. I will not invest my time or money with a practitioner who approaches his or her profession in a "Father Knows Best" style, nor do I want one who is the "Information Guru" willing to share an abundance of information and then "leave it up to us to decide what to do". Both of these types of providers are worthy and available (in abundance), they're just not what fits for us. I recently finished reading "Being Mortal" by Atul Gawande (and I loved it so much I'm thinking of buying a copy to keep as reference). Below is a quote from this book that resonates soundly with me. # 1 & 4 are questions I am specifically wanting medical advice and guidance in answering. From Atul Gawande’s Being Mortal, Metropolitan Books, Henry Holt and Company, LLC 2014 Epilogue, pg 259 If any of you have an MDS you care to recommend in the vicinity of Maryland (yes Philly is an option but we don't have any friends or relatives living nearby with whom we could visit), and you think, based on the above, he or she might be a good "fit" for our needs, please message me. Baltimore is about 2 hrs. from our home and near my Mother's apartment; DC. is also about 2 hrs. away and near many dear friends as DH and I used to live in Silver Spring, MD & work in DC; Annapolis is an hour away. The JHU and GWU options appeal to us because they are NPF centers of excellence. The Annapolis group appeals because of its proximity. In the meantime, I hope something in this post provides value to any who read it and as always, thanks for being you and sharing part of your journey with us. Cheers LHG
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    Oh how difficult it is to watch those we love suffer. I hope sharing the pain and knowing you're not alone helps provide relief, thank you for sharing. I'll admit that I'm a "thinker" in my approach to the continuum of life into death and I have experienced plenty of both during my journey so far. Two of the closely experienced deaths were eased by morphine and I am grateful for that. My father suffered a stroke, then c-diff, then a burst aortic aneurysm on his spleen, and had a feeding tube provided during the spleen surgery, all in the course of 3 months. I've never seen anyone fight as persistently and gracefully as he did, but after all the insults his body endured, he asked me to ask his doctor (Dad didn't speak much after the stroke, but we communicated just fine nonetheless, we were similarly "wired" that way) what quality of life he had to look forward to if he beat the latest insult. That answer was already known, what Dad was really asking was for us to let him go peacefully. My Mother-in-law's last four months were differently endured, but similarly ended. If you have a chance read "Being Mortal" by Atul Gawande. It's not depressing, quite the opposite, it's empowering and thoughtfully written. Use your experiences and the insight gained therefrom to help guide your own journey and just as importantly help your friends and family enjoy and respect this journey with you. One of the greatest gifts our loved ones can provide is sharing with us their hopes, fears, the compromises they're willing to make and their wishes; preferably before debility occurs to the point of not being able to think and communicate these thoughts. DH and I have begun these discussions in the effort to "put that planning in place" (long ago we prepared our wills and advanced directives etc. but with PD there is more to think about as you all know). Our goal is to focus our energy on the pursuit and enjoyment of worthwhile living while being realistic and practical about the fact that death is a natural end to that process. I also have a soon-to-be 93 year old Mother and my goal is to make sure she too pursues purpose and enjoys every one of her remaining days with the hope that there are thousands more of them to come. Be gentle with yourselves. Don't second guess your decisions and don't deny or fight your feelings. These are an important part of your reality and your journey. Try to find an uplifting thought/feeling/experience a few times each day, however fleeting. I send you peace and reflective joy throughout each day. Hugs. LHG
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    Thanks to all who responded - we deeply appreciate your advice/concern/suggestions. My friend did go back and have the voltage turned up and is experiencing better quality of life. Thanks!
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    "You will never be in complete control of your life. It just isn’t possible. You want to feel completely safe and secure. But even if you plan out every detail, the world will mess up your plans. So just stop trying to be in control. Stop trying to make your life completely safe and predictable—and boring! Instead, grab My hand and jump in with both feet." —Jesus Calling for Kids by Sarah Young "Look at the new thing I am going to do. It is already happening. Don’t you see it? I will make a road in the desert. I will make rivers in the dry land." —Isaiah 43:19 (ICB) #JumpIn #BothFeet #JesusCallingKids
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    My ankles wont flex in the morning. My first couple steps are not pretty. I read in a PD book written by an MDS that PWP should put their joints thru a full range of motion everyday.
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    NN you need this shirt! LAD
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    Good morning Everyone. I hope everyone has been having a nice spring and start to summer. I have been stretched time wise and not posted very much as of late. All is well in my life and I am still plodding forward. Glad to see you Ell. Like a cat, I too like to sit by an open window, listen the birds, and sometimes I fall asleep. Be safe everyone. jb
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    I have tremors when nervous. My MDS ordered Metoprolol and it works. I take it before situations when I get nervous and I have very few tremors. I've been dx well over 3 years and am only on Azilect. BTW I love the book Jesus Calling. Read it daily.. The Lord is always there for us if we let him in our life.
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    >>Perhaps you do that with other posts in which you are not interested? I do skip your threads. But this thread was open by someone who already argued with you. Why do you post in his thread? He asked a very specific question- do you really believe that it is a right place to talk about what you felt last Monday? This forum changed since you started flooding. What you do is very annoing. And very unpolite.
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    miracleseeker, this is not only about length. This is about flooding. Linda still doesn't understand that her posts are very annoying. She is sure that when someone tryes to stop her it is personally. Looks like nobody can stop her... 😒
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    Marcia, I love your joke--and it worked! Awesome! My favorite silly joke is: What do you call a Frenchman who wears sandals? Answer: Philippe Philoppe. Laugh even if it hurts. It's good for you. Dianne
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    My body does feel tight in the mornings. My feet feel strange. I begin with a 20 minute simple yoga series. Forward bends mostly. That helps me a lot.
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    Mrs Garren, I appreciate your posting on the string I started. All information pertinent to the tag line is welcome. I am so sorry I have to address part of our post in this manner. I will be as kind and understanding as I can be in stating how I feel about this portion of your post. I do not care about your religious beliefs. I do not want to hear about your religious beliefs. I did nothing in this post to warrant or even suggest I was interested in discussing religion of yours or anyone elses regarding religion.
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    My original neurologist suggested taking medication 30 minutes before actually getting out of bed...genius! So now I have one of those weekly pill keepers & a flip-top water bottle on my nightstand, and my phone alarm set half an hour before my clock radio alarm. Sooo much easier!
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    I can assure you rate is more than 0.5%. Speech side effects from DBS is very common and it's one of the major side effects from DBS. whatever the real number is, if you are one of the unlucky ones to experience speech side effects, you will experience 100% of its bad effects including loss of your social life. You are not in the DBS group just yet to see the full picture of DBS. Either you or someone in your family needs to have DBS to get a full picture of DBS. You can't understand what it really feels like to have DBS from reading comments or doing online research. Same with losing your speech. It may be only a small problem for a person who doesn't talk much or a major problem for a chatty outgoing social person. So be careful about reading comments. I can understand why people don't like to talk bad effects from DBS as it's the only hope for PD patients to turn their life around. I am not saying DBS is bad. It may work well for the right person but be warned DBS is notorious for speech, balance problems post dbs. It can also lead to uncontrollable anger, emotions, sucidal throught etc. you will see such posts here in this forum as well. so be warned prior to surgery. It can happen to you and only you can decide how big of problem that it would be as everyone's life's are different and opinions are personal and want necessarily apply to another persons life. It could only be a small problem for one person but a major problem for another person who is at a different age and a different stage in life. So be warned when reading comments.
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    Otto, There is really no sure fire way to choose an antidepressant specific for are Parkinson's patients. Most Dr's work off past experience as to what may work best for a particular patient. The problem that may exist sometimes is that the depression can be organic (already within the person's mind) or brought on by PD. I usually see Dr's trying the newer antidepressants first due to the less incidence of side effects and that smaller doses are showing to be more effective than larger doses of older medications. As far as choices of antidepressants used in people with Parkinson's that have depression and anxiety are usually: (1) SSRI's (Selective Serotonin Reuptake Inhibitors): Celexa (Citalopream) Lexapro (Escitalopram) Paxil (Paroxitine) Prozac (Fluoxitine) Zoloft (Sertraline) (2) SNRI's (Serotonin Norepinephrine Reuptake Inhibitors): Cymbalta (Dulaxitine) Effexor & Effexor ER (Vanlafaxine & Vanlafaxine ER) Pristiq (Desvenlafaxine) (3) Atypical (Because their Mechanism of action does not fir into any other group) Desyrel (Trazadone) Remeron (Mirtazapine) Wellbutrin & Wellbutrin SR (Buproprion & Buproprion SR) This is usually the order in which they are tried in most patients and also based on the Dr's previous experience with the medications. All of these antidepressants work on both depression and anxiety. Their are certain circumstances where the anxiety is too much to be controlled by a certain antidepressant. At this point it will be at the Dr's discretion as to choose to add a Benzodiazipine, such as Ativan (Lorazepam), Klonipin (Clonazepam), Librium (Chlordiazepoxide), Valium (Diazepam), or Xanax (Alprazolam). Depending on the situation the Dr may add an antianxiety medication with the antidepressant or decide to withdraw the antidepressant and solely use the antianxiety medication. I many patients I will use a scenario of relieving headache pain. To make it simple, I will say that there are basically 3 options: Tylenol (Acetaminophen), Motrin or Advil (Ibuprofen), and Bayer (Aspirin). People who have Liver issues will want to stay away from Tylenol (Acetaminophen) due to the fact it is broken down by the liver. If a person has stomach issues such as ulcers or sensitive stomachs, they will want to sty away from Motrin or Advil (Ibuprofen) because it is very tough on the stomach. Lastly, if a person has an issue with blood thinners or sensitive stomachs, they will want to stay away from Aspirin. As yo can see many issues are involved in choosing just a pain medication, the choice of an antidepressant that helps with anxiety could choose to be an even tougher decision. I hope this help and please keep me posted.
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    Welcome. There's some really good advice above, and it's all right on spot. I would add that having a period of panic at the start is helpful, and (to a certain extent) I encourage it. Panic allows us to process life changing info, and then when we remember how to breathe again, we realize that life hasn't changed, and so it goes on. Hold to that, how you are the same person before the diagnosis, and your DH is still the same person you love after the dx. My DH was dx'ed at 64, but there had been something seriously off for an entire decade. I'm in my 50s, and when the MDS told us, I was relieved it wasn't something much worse. I still remember it knocking me for a loop, so talking to people who have been through it really helps. Good luck, stop in occasionally, and dm if you have any questions.
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    Agree 100%. Most people lose their speech after DBS and lose their ability to communicate with other people. This is such a excruciating pain to bear as you are left depressed as you can't express your emotions. People will also avoid speaking to you as they can't understand what you are saying. Also, losing your balance is just as bad. Be very very careful and think very carefully before DBS. Mini strokes and bleeding inside brain is also common which can lead to permanent PD like symptoms post dbs which they will later blame on disease progression. Swallowing problems also common post dbs. Brain doesn't like to be poked with leads. Trade off may not worth it for most people if they end up losing their speech and balance and as most do. DBS companies have stepped up their marketing in order lure people who,don't even need dbs into getting dbs. So don't fall for their trap. Some centers also recommend dbs prematurely saying window will close if you wait. Don't fall for that. Knowing full well you will get a new set of symptoms to deal with post dbs, leads inside your brain, two holes in your scull and a battery in your chest that you can't live without and wires running through your neck. You will hear the rosy side of DBS from virtually every one and from the internet. This is the other side. So you can make a good independent judgment. DBS is not the holy grail for all PD symptoms. It works best with tremors and dyskinesia and few other PD symptoms but will have its own problems to deal with after surgery.
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    For the issues using the computer, using voice recognition (Dragon Naturally Speaking) has been a lifesaver for me.
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    Hello TheCount, Welcome! You've found the right place...a lot of knowledge and support on these forums. I am 48...was diagnosed 15 years ago at age 33. I have two young children also (12 and 9, maybe not so young!). I didn't have either of them when I was diagnosed, though. Take heart...young onset is generally a fairly slow progression. We all progress differently, but you have many, many good years ahead of you. There are many great medications and treatment options. This is a very manageable disease and there is significant research being done. Best advice...educate yourself, find good support (like this forum), exercise, get a good MDS, and relax. I still work full-time and am fully independent. There are frustrating days and times, for sure; however, there are many good days. Know that you are not alone...we are here...lean on us as you need! Peace and blessings, Mihai (Michael)
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    I agree with Ken and Bill Clinton: Don't ask, Don't tell! If they don't ask, don't tell. Everyone has problems. For one, it might be diabetes. Another might have cancer. Another has family problems. Someone else might have depression, or back pain, or headaches, or ADHD, or a child with a disability. The point is that we're not unique. We have our problem (PD) and almost everyone else has their problem. People have enough stress with their problems, they don't need our problems too.