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Showing content with the highest reputation on 04/18/2017 in all areas

  1. 2 points
    Glad to hea rthis.i had stage 3 this past Mon and my next event is 5/11. the turn on UpdateStage III scottsuf@blogspot.com STAGE III REDO I am happy to say this past Monday I had another successful Stage III surgery. I say this with extreme caution because of what happened last time with an infection looming just under my skin, waiting to come out. Stage II and III went just like last time, but I seemed to take more of it in. I didn’t remember so much of my surroundings the first time, and I acted like I was still under the happy juice for a good while the second time around. When I came around in recovery after my phase 2 surgery wanting a pizza, I did everything I could think of to get one. The poor girl transporting me didn’t know what to think. I tried to get her to stop on the second floor at the cafeteria. I even offered to buy lunch for everyone! They were happy to get me to a room I’m sure. I continued to have fun though. My room nurse came in at a shift change to ask the usual questions, you know, "What’s your pain level? Where does it hurt?" Well, I answered about a 2 or so and then busted out laughing as I pointed to the baseball stitches across my head, as if to say "Where do you THINK it hurts?!". It just struck me as funny, and I cried I was laughing so hard. The nurse finally got it and cracked a smile. My current status has me at home taking it easy, waiting for the turn on day. To refresh your memory, that was the day they found the infection and removed all the hardware last time. That’s not going to happen this time. I feel better overall. One concerning side-effect has been some confusion. Docs say that it’s not uncommon to experience some confusion during fist couple weeks after surgery. We’re keeping an eye on that for certain. With that, I’ll fade back into cyber space while I heal up until I have any more news.
  2. 1 point
    I know that we often come to the forum looking for answers to problems that we as Parkinson's Disease experience, or to offer assistance to those facing the challenges of living with PD. That being said I thought it would be a good idea to focus at least one thread on things that we can do, instead of those things we are challenged with. I struggled with this topic for a few days before posting it, because I don't like to brag or pat myself on the back. But if we all would share some of the things we have done post diagnosis it may give hope to those just beginning on the journey of PD. I truly think hope and inspiration can be just as powerful for managing PD as the medications we take. So please share your accomplishments .
  3. 1 point
    I had an idea it would be something like this. I will talk with my neuro when I see him next, which should be in a week or so. Thanks, so now I know it is something to important to have looked at and hopefully mitigated.
  4. 1 point
    I agree with Dianne! The first step should be an evaluation by an ENT specialist. He may perform -if needed- a flexible laryngoscopy- to watch you swallow solids and liquids and evaluate your condition (flexible laryngoscopy is a very simple and well tolerated procedure, nothing to worry about). The next step is a speech and swallowing therapist (not necessarily a MD) with expertise in functional/neurological dysphagia !! Based on the evaluation of the ENT, and under the guidance of your neurologist, the therapist will inform you on all your options, give you valuable tips that will help you swallow safely and start you on specific exercises for muscles involved in swallowing. Expiratory muscle strength training is an example of physiotherapy which has shown excellent results in improving swallowing difficulties. Other much simpler exercises, such as chewing gum, may also help!!! My dad -who also has Parkinson's- has significant swallowing difficulties. We have just finished the first step -the ENT evaluation- and are now looking for a therapist so that he starts therapy as soon as possible. Swallowing is a very important function and you should follow "aggressive" treatment to preserve it. Good luck and keep us posted!
  5. 1 point
    I speak for myself only but I rather suffer the pain and discomfort for my mom. Growing old and getting sick really sucks. Watching it happen in front of you is pure torture. I'm thinking of you Genden.
  6. 1 point
    The Caregiver’s Reminders There’s sixty hours of chores, To complete in twenty-four. There is never enough time, To rid the bathtub of its grime. There’s tons and tons of weight to lift. Does this need washing? It passed the sniff. And If I have to make one more call, I’ll smash my head against the wall! I’m pretty sure sometime today a shower was to be taken, But my problem is I’m not sure whose, I think it’s mine- am I mistaken? There’s a clock on the wall that says it’s five past eleven, It can’t possibly be? The last time that I glanced at it, it wasn’t even seven! There are questions that I have to ask my higher power. I’ll demand answers at the church. Perhaps God’s hiding in the tower? Where are you God? I want to know when it is 4 am, If this is something meant to be I can not see the plan. “Where am I?” God smiles back “I’m in every act of love,” “In laundry, in a visit, or when you help them find a glove”. I have entrusted you my child with TWO of my beloved kids, To care for you, yourself and another one. Yes I did! To be my hands, and to hold theirs until their time is ended, And then to let them go knowing where they are headed is simply splendid. I’ve given you an honor that’s so hard to recognize, But if you take a moment to look in your loved ones eyes… You’ll see the bitty baby that came to save us all, For when you serve the least of these, you serve me as well. Sooner than you think, this season will be in the past, And you’ll be separated from them, until I call you home at last. Still, child I know you’re weary, you’re stressed, I know it’s true, And at times it feels like I have completely forgotten you. So when you speak to me, you’re welcome to yell, to scream, toSHOUT! Just be sure to take a moment remembering what this lifetimes all about… …the love that I showed you when I hung upon a tree… …Kid you learned that lesson well, as I can surely see. March, 6th 2017
  7. 1 point
    Excellent question, great responses. I like it when people, especially ones I know, ask detailed questions, either about PD in general, or my PD specifically. I really don't mind answering questions as I'm happy to educate people. Sometimes, things are hard to explain, but it's still ok because I figure the challenge is good for maintaining my cognitive function. Not many people ask, though. Perhaps they think I don't want to talk about it. It amuses me when people comment about my relative youth. My best response is, "Disease knows no boundaries. I have a friend who was diagnosed with breast cancer at 33." What I wish others knew: Routine tasks are anything but. They require more effort than they could imagine, but they won't hear me complain because I don't want pity. Everybody has problems. Mine aren't necessarily worse than someone else's, just less common & less understood.
  8. 1 point
    Hi all, I'm in pretty good shape PD-wise for now. But I have made some positive moves. 1) I booked a trip to Paris. I wasn't sure how well I would fare, but everything was great! We got back last night. 2) I bought a nice bike. I got up early this morning and rode. Cheers!
  9. 1 point
    Well said gulfvet- My husband & I have been taking ballroom dance lessons since my MDS looked at us and said "take dance lessons- particularly the Argentine tango". Two years later, we just started the tango-but we do all the other dances. We are the crazy people at the bar doing ballroom to any music we hear. Did you know you can waltz to country music?! My kids are amazed but proud of their dad for doing this for me. But I can honestly say I forget I have PD when we are busting a move. I also started an exercise program in my area for others with PD. Just getting started. Fingers crossed! Dance like no one is watching! This is a great idea for a thread!
  10. 1 point
    Hello, Gulfvet -- Here is my contribution. It was when I was playing the piano that I first suspected I had a neurological problem. By the time I got my diagnosis, I could barely play at all because of my lack of manual coordination. Having studied classical piano for more than ten years, I was sad to lose that beautiful and rewarding pastime. With medication started and some improvement observable, I tried practicing again. It was pretty discouraging at first. But as the medications grew more and more effective in fighting symptoms, I practiced more often. Today I could never play on a concert stage, to be sure, but I can enjoy playing pieces of music that I never expected to play again! (A few examples are Chopin's "Fantaisie Impromptu in C# minor," two Rachmaninov preludes, Mendelssohn's "Rondo Capriccioso," and Chopin's "Berceuse.")
  11. 1 point
    Hi, Gulfvet. I think you have a wonderful idea here and am glad you started it. Please share your accomplishments post diagnosis, too! I'm afraid I can't claim much since my diagnosis in the summer of 2014 except very small things here and there. For accomplishing just the everyday things to keep on going for me is a major accomplishment, though! One big thing I did do was prepare and sell my condo and made a big move to a wonderful continuing care community. Was a very challenging process, as there was so much to do, with so little energy. Am very grateful it all worked out, and I'm very happy here. It's "home." The people (staff and residents) are just as nice as can be. There are about 2,000 people living here (or 2,000 apartments)...not sure which. I can hear the crickets and the pond and tree frogs from my bedroom window at night, and there is a nice balcony off the living room for flowering plants in the spring and summer. Last summer I put beautiful geraniums out, and they got eaten up by Japanese beetles! I never would have thought I'd have a problem with anything like that here on the 5th floor. One of those darn things came, and then he went and spread the word to all his family and friends, and they came too... So no more geraniums. No sir.
  12. 1 point
    Hi Gulfvet I agree that PD dx does not mean a drastic change in life. I have been dx'd for 4 years and DH (dear husband) has been dx'd one year. I recently drove our Harley trike with DH sitting behind for two hours. The next week, DH and I went kayaking ...in separate boats..for two hours We are now planning a 7,000 mile road trip with boats and trike in a trailer...AND fulfilling our bucket list. On our list is a hot air balloon ride, a wood carving seminar, a pontoon plane ride, deep sea fishing charter, 10 days on waterfront of Vancouver Island, BC, a kayak trip up Cowlitz river to dam...only a partial list. I will be 70 soon, DH will be 72. Of course, we are spending our children's inheritance...but intend to make memories for a lifetime. ? Each day we accept...adapt...and laugh..... try to serve others...and thank our creator for the many blessings we have. NN