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Showing content with the highest reputation since 07/22/2017 in Posts

  1. 6 points
    Chronic By Superdecooper © 2010In the comfort of my dreams, I feel no pain.No heartache. No hurt coursing through this unpredictable frame of mine.I’m clear like a stream, questing for the blue ocean’s warmthBut Time, my subtle enemy, rushes me unwillingly towards the moment I awake.I struggle to smother all the small prickles of fear that the coming transition will bring.The warm comfort of my dreamscape fades.I wake into a world of tattered thoughts, unkind nerve endings and the edge of memory.Still, I hope it might be a good day.Maybe no rain in the forecast, bringing chronic pain.No mysterious body movements that spark instant regret.I fill my lungs with the sweet life of morning and hope.But then, like a death-row denizen, I exhale. Slowly I breathe out hate for the pinch of thorns shackling my release. Hot, dull, deep, unrelenting, and unforgiving pain greets me. In between each breath, I debate the sacrificial bargain awaiting my acceptance.Do I swallow each small capsule at every appointed hour?With just the right combination of rainbow tablets, I will be granted the power to bring this disaster under control.I summon the strength of will to exchange my cool intellect for a dulled, foggy existence haunted by the grey specter of pain.For just one more day, I agree to do less, think and be less.In exchange, the thorns will be blunted just enough for me to remember.When true night falls, I will dream again.
  2. 5 points
    First, forget the bucket list. You are not close to "kicking the bucket". Next, don't give up on the plans for your life. Has anything really changed since your diagnosis? You can live a long and fruitful life. Then, don't be in a hurry to tell others. You are not the only one with problems. In fact, almost everyone has problems and many have problems worse than yours. I have a young nephew with a brain tumor. One of my tenants felt sick and went to the doctor. She had metastatic cancer and died only a few weeks later. What are our PD problems compared to that? Furthermore, people don't want to hang around with people that are sick. Talk too much about your PD and your friends and family will slowly disappear. No-one wants PD, but MANY people have it far worse. Live your life as you planned and don't let PD get in your way!
  3. 4 points
    Good Morning, “Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, 'I will try again tomorrow.” -S
  4. 4 points
    This is a great PD site! Dr Laurie Mischley's video on nutrition is awesome! Her health care practice is the model of how health care should be.... https://scienceofparkinsons.com/2017/09/18/food/
  5. 4 points
    My dad has Parkinson's. I spent several years with an extreme paranoia that I was getting Parkinson's at a very young age. . I was anxious. I had resting tremors. My right arm was not swinging properly. I had elbow pain. Rigid muscles Knee pain. Depression. Constipation. Insomnia All the classic Parkinson's symptoms that you can think of. I would google all day about Parkinson's and even went to doctors. I would discover a new symptom daily. Finally I had enough and told myself if I am going to get Parkinson's, let it be. (This is key to solving the problem by accepting the problem gracefully) There is nothing I can do about it other than exercise and eat healthy brain food. I convinced my self that I am not going to worry about Parkinson's until my smell is completely gone and stopped paying attention to my body. Note the word completely. Otherwise my brain will make me think that I have diminished smell and will drag me back into the anxiety cycle lol.. Slowly all the symptoms miraculously disappeared within few months and my stress levels went down. I realized it was all my mind play tricks to heighten my anxiety because it got to the point my brain started craving for anxiety like body craves for sugar. So it comes up with something to match the picture. Note, If you take dopamine meds herbal such as mucuna or other otc, it may interfere with natural dopamine production. So wean them off so your body make its own dopamine
  6. 4 points
    I realized yesterday I never mentioned Houston. OMG. I can not even imagine how that city will wring itself out and get back to functioning. It isn`t ``Houston, we have a problem``, but rather ``Houston here. we have a problem!`` That city is going to need lots of support and generosity. The view of a Nursing home with a roomfull of ladies in their wheelchairs with water rising to their waists is stuck in my mind. What a fight for survival by people of all ages, race, politics and economic standing is taking place. There were thousands of people rising to the occasion to help one another. Humanity and Love for fellow citizens is alive and well in Texas. Canada hopes that you soon get back on your feet Houston.
  7. 4 points
    I actually have something worthwhile to tell you all. My DH does not have PD but does have trouble sleeping. We bought a new mattress cause we thought that was the problem. The new mattress came with an eye mask. He started wearing it at night and so far (at least the last two nights) he didn't have any trouble going to sleep and staying asleep. I'm hopping up and down. It wasn't the mattress, it was the light. !!!!!! This reminds me of the scene in the movie Blues Brothers where they say, "The band. the band.!" And do all those flips up the the front of the church and back.
  8. 4 points
    Hello Momof4boys, I was diagnosed at age 35 and started on Sinement about 8 months later. Best decision I made. I felt so much better. Like I was 10 years younger. Best thing you can do is research. There is a lot of negative press out there about Sinement (aka Cardopa/levodopa) The latest research show that waiting for fear of dyskinesias is un-founded. Yes those of that are on sinement have a greater chance of having them but it is just part of the progression of this wonderful disease. You will find people who say stay away from it and those like me that say don't wait. Patriot on the forum uses only exercise to treat his symptoms and this works for him. I could not use just exercise seeing as I need some relief from the side effects of the disease just to exercise. Since taking drugs I keep very active and most days people wouldn't be able to tell I have PD. Yes you will get to do activity with your boys. You may have to adjust the way you do them or plan more time to rest but you can still have an active life. I still work full time and have a full life outside of work. The good news is your boys will grow up with you having the disease and will think nothing of it. If you oldest is old enough to understand a good discussion with him may help. What has helped me the most..... exercise, staying active, eating healthy, maintaining an active life, working hard on not dwelling on what the future could have been and might be, living for every moment, and planning for the worst while hoping for the best. I hope this helps. Feel free to ask me anything Blessing Adam
  9. 4 points
    Good morning to all! In my life, some things are working out the way I would like. Others may never be as they were before. I find that acceptance of what is out of my control is the least stressful response for me with my PD. I find peace and joy in what I can do for myself and others. I appear to be having an attitude of gratitude today. I love it when that happens. Wishing you all a wonderful day! Dianne
  10. 4 points
    I was diagnosed 4 years ago and can still use chopsticks without taking any PD meds, RG, or UDCA. PD usually progresses slowly. So, when people really want to believe that something works to slow PD, they can convince themselves. Just look at the forum, people have convinced themselves that stem cells, UDCA, TUDCA, various supplements and many other things have slowed or stopped their progression. Worse yet, some people play into the desperation by making money selling snake oil to the sick.
  11. 3 points
    Stump started this thread discussing fishing, kayaking, and hunting. Here's a thought! How about at the first inkling that you see something you don't like, stop reading and move on to the next post. What is wrong with people in today's society that thinks that everyone else should change to suit them? People post stuff online every day that I don't agree with. If I don't like it, I don't read it. Stump, keep on posting. I don't hunt much anymore, but I love eating game that my sister and niece bring home. They both got 8 point whitetails this weekend.
  12. 3 points
    Thank you all for your inspiring words and advise from your experiences. I got my confirmed diagnoses a little over a month ago and at first I thought I'm too young at 54 for this, I was suppose to be healthy and able into my 80's like my parents. I've always been a very active person and totally "on top" of everything. I started noticing a difference about 2 years ago and have been struggling to keep up with everything the same I way I always have. I kept asking myself, why do I feel so old and sluggish and why can I not do what I use to? I was beating myself up. But now that I have my diagnoses, like many others have said, it's been a relief to have answers to the "why" and after reading everyone's encourage words, I actually realized it's all OK. I think the biggest thing for me, I've finally given myself permission to slow down a little and accept I might not be able to do everything I once did and by doing this my stress level has dropped tremendously! I've decided I'm not going to work all the extra long hours, I'm going to take all my vacation time and so what if the house isn't spotless. I truly feel like I'm a happier person. Thank you Parkinson's for giving me a reason to slow down and smell the roses (if only my sense of smell was better )
  13. 3 points
    One of my latest music videos. Probably better to listen to than watch, since it doesn't show a lot. I tend to get stressed with a camera pointed at my face, versus pointed at my hands
  14. 3 points
    Hi Doubleup, I empathize with how troubling all the uncertainty can be. But if it were me, I would be very hesitant to pay out-of-pocket for a DaTscan. Clinical diagnoses by an MDS is very accurate--as accurate or more so than a DaTscan. For example, my PD symptoms are quite mild--a couple weeks ago, I participated in a presentation to first year med students about YOPD. Only about a third of the group was able to see that I had any symptoms, in spite of having just seen an MDS give me a neurological exam and being told (by both of us) exactly what to look for. Yet, three years earlier, when my symptoms were even less apparent, my MDS was able to diagnose PD in about 15 minutes. Someone who sees PD patients day-in, day-out, with all sorts of different symptoms, gets very good at spotting even early, mild PD. If your MDS isn't seeing it, that's worth really thinking about. I was offered a DaTscan at diagnoses, and my MDS said they would push the insurance to pay for it. I told him if he was sure of the diagnoses without the scan, that was good enough for me. As it happens, I had a DaTscan this summer as part of screening for a clinical trial (no cost to me)--the results clearly showed PD. The odds are very high you will spend a lot of money to get the scan, and still have no answers. If a PD specialist can't give you a clinical diagnoses at this point, it seems unlikely medical treatment for PD will do you much good either--there are NO proven disease-modifying medications available. Exercise and good diet are always good approaches, PD or not. So is financial planning, esp. as PD can mean earlier retirement than planned. If it were me, I'd take the money I was going to spend on DaTscan and put it in my 401k.
  15. 3 points
    My DH always answers the question "How are you today Al? With "I am fit as a fiddle!!!" Even if he is having a bad day. Their response is always " Oh so glad you are having a good day." It brings a smile on their face with his comment and it makes him feel good with theirs. Being in a Nursing Home he is asked this every day by nurses, staff and residents.
  16. 3 points
    I used to read this forum religiously, but stopped because this running debate over TUDCA had become over the top tedious. I just tuned back in assuming everyone had finally gotten bored repeating themselves and moved on, but not so. The simplest concept and most obvious observation that every person on every Parkinson’s forum immediately figures out is that some drugs and supplements work for some people and not others. Is that really so hard? If a particular drug or supplement does not work for you, the only intelligent thing you can say about it is that it does not work for you. It is fundamentally ignorant to argue a supplement doesn’t work because it doesn’t work for you. The TUDCA skeptics, for example, have written many posts telling us what has worked for them, yet I don’t see anyone questioning the veracity of their comments. Everyone who reads their posts has the class to take them at face value, yet for the better part of four years now and the better part of 47 pages, they have disparaged Mr. Fritz insisting that TUDCA does not work - even though there are others who say it does. The only conclusion one can draw is that they are not so much interested in teaching and learning, that is, helping other PWP as they prefer being argumentative. “What does TUDCA do?” It helps some people with Parkinson’s disease. Is that simple enough? I believe Mr. Fritz must enjoy this endless back-and-forth as much as the naysayers do, otherwise he would’ve quit responding long time ago. Get a life, people. See you next year.
  17. 3 points
    I was diagnosed with PD 4 years ago. During that time, I have used exercise as my primary treatment for PD. I credit the exercise with my slow progression during that time. Unfortunately, a few months after I was diagnosed, I foolishly allowed my neurologist to talk me into taking Mirapex. I was lucky to survive this drug. The final straw came when I literally fell asleep at a stop sign while driving. I was fortunate that I didn't kill myself or someone else due to this dangerous drug! The exercise was effective in combating most of the symptoms of PD with one key exception: tremor. Over the past 4 years, my tremor has continued to get worse and is quite noticeable and irritating. Therefore, a little over a year ago, I decided to try medical marijuana, even though I had never used marijuana or any other illicit drug in my life. I found the medical marijuana to be very effective with my tremor and also many other aspects of PD, including urinary urgency/frequency; fatigue; sleep problems; and more. It seemed to be a miracle drug and best of all had no side effects. During this past year of using medical marijuana, I have discovered a couple of significant problems with taking this drug. For one thing, I discovered that medical marijuana is not hospital friendly. I have had a couple of kidney stones during the last year that landed me in the emergency room. Needless to say, PD is made greatly worse by pain and stress, and when you combine that with not being able to take your medicine (medical marijuana) while in the hospital, that can be a real problem. My tremor absolutely exploded while in the hospital. It was as if someone taking Sinemet suddenly stopped taking their medication amid severe pain and stress. Not good! I can only imagine how bad it would be if I was admitted to the hospital for surgery or some other serious condition for an extended period. Another problem with using medical marijuana is traveling. Some states still treat marijuana possession and use quite seriously. I have an upcoming road trip that will cross many states, and using medical marijuana on the trip could be risky. A final problem is the idiotic DUI laws in many states. Many states use a ridiculously low concentration of marijuana in the blood or urine as the standard for determining when a person is impaired. When you consider that this level would be exceeded even if a person hasn't consumed any marijuana for weeks, this could be a real problem. A few months ago, I was pulled over for something, although the cop couldn't really articulate what I had done. I got a warning and was told to "drive safely". When he was talking to me, he noticed my tremor and commented that I appeared nervous. I held up both arms and pointed out that I was only "nervous" on my left side and explained that I had PD. However, if he had done a field sobriety test, could I have passed? My balance is pretty good for a person with PD, but I'm not at all certain that I could pass even though I wasn't impaired in the slightest. So, the bottom line is that medical marijuana is a fantastic drug. Unfortunately, there are some real problems that have to be considered when using it as your primary PD drug. As a result, I have tried a couple of other things which I will detail in other posts.
  18. 3 points
    Miracle, wise I'm not sure about that! Lol However I'm tired of others pushing their "opinions" and "no that won't work" or "what, your not on Sinemet yet, big mistake" I am the only person who will make my choices. If my choices are wrong it's on me. If they are right it's on me. This insidious disease is hard enough on us, having people nattering in our ears makes it down right impossible to keep in our lane of sanity. I play hard, laugh loud and love always. ...this keeps me afloat. Cheers MS? D
  19. 3 points
    Rainbow, One thing I have learned in the past 3 years is to do what works for you. The Forum is a great place for info and chatting with others in the same space. Though at the end of the day we are all different in our progression and mind set. My beliefs will be different from the next who is exactly where I may be in the disease symptoms but chooses a different path. I am a strong believer in exercise and a healthy mental state. If you lack in one the other won't survive. I sense that you are a caring daughter one that will do what it takes to keep Mom healthy. I admire that kind of love. All the best D
  20. 3 points
    In my opinion, the key is to keep moving. For example, I don't like the idea of walking 30 minutes a day, if the rest of the day is spent sitting on the couch. I don't like the idea of an hour of cardio, when a person has a Handicap sticker and parks as close to the store as possible. I think that battling PD requires a lifestyle change that means the patient will take every available opportunity to move throughout the day. When I go to the store, I park as far from the store as possible. I will usually walk a lap or two around the big box store before I begin shopping (each lap around Walmart is almost 1,000 steps. I own a business and have a massive number of bills to pay each month. When I pay bills, I pay one bill at a time and then take each receipt to the basement to be filed. I make a trip around the basement and do one exercise with each trip. I often have over 100 flights of steps a day. I'm not saying don't do organized exercise. Quite the contrary, I think participating in organized PD exercise is very valuable. What I'm saying is that in addition to whatever PD exercise program(s) you do, you also need to move all day long! Move it or lose it!
  21. 3 points
    George, Whether you take or delay meds is sometimes a hot topic depending on your opinion. One thing I have personally noted from my own experience is if you're focusing on the disease, your symptoms are gonna be magnified quite a bit. First, you need to find things that will distract you from having PD. It's not going anywhere, so fretting about it is wasted energy. Excercise everyday!!!! If you still feel that your quality of life needs something extra, then by all means discuss with your doctor on what they think would be best for you. You could try starting with Azilect to see if it might help (pretty rare if it does, but still worth the attempt). Be careful with the agonists as they can cause some serious unwanted issues. Not everyone experIences these problems, so if you go that route have your family keeps tabs on you. If all else fails, you can go for the gold standard of Carbidopa/Levadopa in the form of Sinemet or the new formulary which is Rytary. If you decide to go the meds route, it might take some time to find the right combination/dose that will improve your quality of life. I take Azilect and Rytary. It took nearly two years to find the dose and timing that provides the best relief for me. Patience is the key when it comes to Parkinson's. It progresses slow, so time is on your side. Regards. Dave
  22. 3 points
    Big weekend in my corner of the world.... My oldest graduated from his Physician Assistant masters program and will sit for his boards certification later this month. My youngest finished his 23 production but it was the first as the lead. And to celebrate.... My middle son threw quite the party while we were out of town at the graduation. I still can't figure out how many people were in my house. It was relatively clean so I'm not going to investigate. Hope you all had a great weekend and here's to Monday being over!!! LAD
  23. 3 points
    Good morning Parkys. Hope you all had a good weekend. For Canadians, it was a long weekend, I spent some time with my brothers and sisters at the family cottage. Mom was there for a day too. It was fun. hi PolyParkie, and SoCalGal. Great Vid LAD, where does your son get that outgoing exuberant talent I wonder. Oh to be 13 and wishing I could shave ...that seems awhile ago to me. Hope you are doing good Dianne, and Linda. I hope you guys that read this column, soon start writing some posts here, the numbers are a little lopsided here, men and women posting that is! , Why is that? I really don't mind but c'mon you guys, jump in here anytime, it isn't a 13 year old school dance with us standing along the walls, Good days to everybody. jb Fists to the sky in defiance to this Parky thing that tries to drag us down.
  24. 3 points
    JDS6958, You need to refrain from commenting on the product you sell and profit from. If anyone else comes on here trying to sell their products, they are banned from the site. Just because you say you have PD does not give you the right to peddle your products that you are profiting from. As for UDCA (TUDCA), We should wait for the results from a real study demonstrating what it does for a person with PD rather anecdotal testimonials from people who may or may not even have PD. Dave
  25. 3 points
    RE: dystonia. Well...as Fred says, PD is never boring...so here is the REST of the story. WARNING: no one heed my previous experience re: gabapentin. I should have known when Diane, the most stable of beings, issued her subtle warning So, I was doing great with gaba. I took 300 mg gaba with each l dopa dose...total 1500 mg gaba a day...well below the max Dr Google stipulates...and within my neuros guidelines. It didn't take but days I was looking forward to the next dose...even to the point of spouting, "Yay, its Gaba time!". I was so relieved from pain, I thought I could compromise my adamant anti drug mantra. Nothing that good could last forever. Very soon I noticed emotional swings, and personality issues. More research showed Gaba is very addictive and can require a difficult withdrawal regimen. Even worse, Gaba can interfere with brain chemicals to cause more irregular l dopa assimillation (as I understand ) and may accelerate Alzheimers..... but not always. "Everyone is different" I've stopped Gaba. Some of you may have seen Dr Okun answer to my question if my muscle spasms are more likely PD or MSA. His cryptic answer was the dystonia I described is not likely PD. I've resumed daily stretching with an exercise ball...even while on our bucket list trip. On a personal note, I drove Big Blue today (our HD trike)..short run to swap vehicles, but included unfamiliar 4 lane traffic, steep hills, trucks and motorhomes. I pulled aside, parked. Called DH. I was beyond capacity. In nearly 50 years never a motorcycle accident. Tonight, as right bicept clenches in tandem with right leg I know it is time to move on. Hmmmm...two wheels to three...now its time for four wheels to touch the ground...sports car?? with an automatic....smile... On a very serious note, I counsel everyone to reconsider their bucket list...whether it is a motorcycle ride or a walk in the park with a loved one....a favorite memory written to a grandchild......if it is worth doing.....your passion or theirs.....It is my hope and prayer each of you has the opportunity and strength to accomplish it...and then...have the wisdom to know when to change...to accept....to grieve.... to move on. NN PS. To forum members who are confused by my divergent posts...from having painful dystonia in two limbs to riding motorcycles, I understand how perplexing it appears. Or how I can write and speak with some coherance, but now am not trusted to get out of a grocery store. Yep, that is the face of PD. That is me.
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