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  1. 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!
  2. 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
  3. 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.
  4. 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
  5. 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.
  6. 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
  7. 3 points
    Here's MY worthless opinion.... Parkinson's is on the increase for whatever reasons. Some smart (marketing) people realize this fact, and figure they can financially capitalize on this. All they need is for a lot of people to buy their product for 2 years (which is about the same amount of time for symptoms to progress in a noticeable degree), before symptoms progress and they move in a different direction with their treatment. But 24 months at $100 per month, times lots of people, isn't too bad. Marketing on the internet is REALLY cheap, versus print ads or tv or schmoozing doctors, so the investment is fairly low. Maybe this is just MY naturally suspicious nature at work, but I have my doubts.....
  8. 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.
  9. 2 points
    Hi everyone, back to "Good Morning," "cat had my tongue" for awhile........ JB - Sure do wish you Good Luck with DBS, I have heard and read about remarkable outcomes......"remarkable" in a good way! LAD - You have a lot to be proud of, sounds like you have a wonderful family, lots of support too!! Dianne - "Acceptance" is the absolute key to everything in life. I have never been real good at this, I am working on it though, as you say, "it is the least stressful way" to handle life. I have always wondered if being an only child is going against me in that area.........just a thought....
  10. 2 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
  11. 2 points
    This is a good summary that is understandable. https://scienceofparkinsons.com/2017/08/04/exenatide-one-step-closer-to-joblessness/ And this is a word of caution. https://scienceofparkinsons.com/2017/08/08/exenatide-an-editorial/
  12. 2 points
    Stu, It seems to me that many of your problems may be the result of your weight. Diabetes, sleep apnea, high blood pressure all could be the result of the weight. In addition to working on getting your meds correctly adjusted, I would suggest getting on an aggressive weight loss program. Additional medical problems make PD much worse. If losing weight would eliminate some of your medical problems, that might pay significant dividends with your PD. I would suggest talking to your doctor about your weight issue and how it might affect your PD.
  13. 2 points
    JDS, I'm not suggesting you refrain from participating in the forum. Although, I have noticed that the only time you participate is to support and push the products that you sell. I found it interesting that you felt the need to reach out to your testimonials to post on this site to support your product. I've had Parkinson's for several years now. I take only what is prescribed by my doctor. Like your testimonials, my doctor is very pleased with my current state. You would not know that I have Parkinson's if you met me. Sometimes you just have to give the doctors and the medicine prescribed to you some time to settle in. It took over a year to stabilize everything and yes even turn back the clock on some symptoms. Dave
  14. 2 points
    My sons & my hubby are the reason I fight so hard! There's nothing better than hearing "love you mom" from your grown up boys!! One good thing PD had done is brought us all closer. Happy almost Friday!! LAD just saw this....yes...I posted it in two places ...sorry that's upsetting to some 😬
  15. 2 points
    Love that! I'm glad I could be of assistance in your day's work. I posted my enounter on my FB page and found a great opportunity to educate the non PD aware world. Jimmy Choi - the American NInja Warrior with PD posted that he was on a plane and someone asked if his PD was contagious. He said "no" but the lady moved anyway. So, there you go...a great way to get more room on a plane....crazy isn't it? good day to all....keep LADDING:) LAD
  16. 2 points
    Good morning Everyone, Linda, one surely could not argue against the magical goodness of Oatmeal. Especially when it gets backed up with a family who have had so many years of collective good health. Oh, My.. what ages they have attained. That is a family of very good genes!! Thanks for pointing this story. Pathfinder.... , sounds l you faceda challenge. "Can I cut this big lawn" And you did it. Then without warning, jb broke into song, "She fought the Lawn, and She won , She cut the Lawn, She Won. " When the SIL gets back from holiday and sees the great job you did PFer, you may have a permanent job. HI Lorit 2 dozen and nine, Welcome to the club. Always glad to see new posters. And you even understand LAD's post. Hope to hear more from you. LAD, It is so nice that you can enjoy dancing with your husband. and you don't have PD cause you are just gosh darn busy to be bothered with that crap. And too young. Keep up the good work Kid! Hi Dianne, you may have to get some tubing, some good mirrors and look after the machinery yourself. I hope that your pump is working okay for you. Try to stay cumcumber cool for the heat wave. That is likely the same heat wave that is pushing into BC. What a bad fire we have going up there. Hang in there Dianne.! Okay Peace, I will schedule you in as a helper for next summer; cause I sooooo want you to help. It is sorta a fun day despite the heat, dust and heavy lifting. It quickly becomes a community event and as the barB Que fires up at the end of the day; potato salad, tuna salads materialize and a cooler of nice cold beer tops off a good day. And Emma, I have never heard of that fix for wasp bites before either. I hope that trifle turned out nice for you. Have a good day Em ! Well, that took forever to type. But it is an effort that I am willing to make to stay in contact with all you nice people. The sun is shining here, the birds are singing, the dog wants breakfast, the sink is full of dishes, the grass needs cutting (Hey, Ms. PF, now that you cut grass again, you want to come for Tea?). The garden could be weeded again and I should visit my Mom at the Retirement Home and I need to make some muffins and some cookies. And it is a good drying day and I am getting low on socks and und...., well other stuff, he said with a reddening blush. My Grandma used to say that if she didn't attempt to do more than she possibly could, she never would accomplish all she possibly can. It takes me awhile to get going in the morning. It is like firing up a factory in the morning and employees straggle in late: bit by bit. With tight legs and shaky balance i get pills and make coffee. Turn on the news and watch that through slitted eyelids. Finally my hands start to loosen, rigidity relaxes, brain spits and sputters and starts to unravel things, the cramped foot eases off as it realizes I'm going to walk on it anyways, porridge converts to energy and levodopa ignites the lines of communication to 'All Body Parts". GET TO YOUR WORK, DO WHAT YOU ARE SUPPOSED TO DO. The factory is running for another day as dyskinesias have me twisting on my chair. I may just LAD it for the rest of the week. That would be, I'm not old enough for PD and besides, I got too much to get done. Yes, that is the ticket!! I will be LADDING the rest of the week. Good days to everybody. jb
  17. 2 points
    Years ago, a friend and I spent two weeks hiking a stretch of the AT along the Blue Ridge--ended at Buena Vista, VA if I remember right. Beautiful country, but I don't miss the heat and humidity, or the overloaded pack I was carrying. Started doing the ultralight backpacking thing a few years before PD dx. Getting pack weight down was a big help even w/o PD--I expect more benefits as things progress. Sleeping on the ground isn't as easy as it used to be, but a thick insulated air mattress helps. The Pyrenees sound fantastic--my wife and I are hoping for Finland sometime in the near future, and I'd also love to go back to Iceland for an extended stay in the East Fjords. And this summer/fall may finally be the year we climb Mt. Adams (WA State), instead of just talking about it... My MDS is one of the study doctors for the inosine trial: https://clinicaltrials.gov/ct2/show/NCT02642393. Trial uses the dietary supplement inosine to raise blood rate levels. Urate within a certain range is associated w/ slower progression. My urate levels are already too high to qualify for that study (a good thing, I'm told). My understanding is, using inosine needs to be carefully monitored, as urate levels that go too high can cause gout. I was taking isradipine off-label until recently (see signature) and will resume in October. Had already started dopaminergic meds, so didn't qualify for that trial: https://clinicaltrials.gov/ct2/show/NCT02168842 Off-label isradipine use was with MDS guidance and consent. I've had no noticeable side effects, but others have (mostly mild edema). Searching for SURE-PD III (inosine trial) or STEADY-PD (isradipine trial) should be a good way to keep up to date.
  18. 2 points
    Hi PD I gave up paying attention to what others care to say.Often I have heard other parkies relate with the same thoughts so havng PD doesn't always equate that you are different from the normal crowd .Virtues like empathy and understanding come from a lot of self practice I have found that getting involved in making a better world seems to make my PD a very small part of my life. maybe it was a good thing Trump was elected,it shows what being indifferent in our world can cause disastrous results. If he was smart it would be terrible,thank God he,s not lol
  19. 2 points
    As far as the kids go, It was great that the guy was on American Ninja. He didn't do so well, but it showed that we are not helpless, shaky, drooling invalids. Many of us get by for many years with mild to moderate symptoms. Kids get more from seeing something like that than most other things
  20. 2 points
    I posted this twice - sorry if that annoys anyone....feel free to add positive thoughts ponder as we go on this journey.... LAD
  21. 2 points
    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.
  22. 2 points
    http://marietterobijn.com/parkinsons/live-twice-en/
  23. 2 points
    Give credit to the turtle! But I agree with him! And you are spot on...choose to be happy! My son was amazed at my neuro evaluation-my DR uses the UPDRS. My "score " was the same as last year so I'm holding steady! I made an iMovie of our dance moves and my DR loved it especially since he was the DR who suggested dance lessons. I'll post it sometime. But I was a very proud mama - my DR talked to me and Adam. He was as he says "adulting" Happy Friday!!! LAD
  24. 2 points
    Thanks for noticing my quotes. I can't control most things about PD but I can try to control how I respond to it. I think attitude has a huge impact on overall wellness. I refuse to give up. I may fall down or slow down but I'm not stopping. LAD
  25. 1 point
    If I may intervene. Yes the DBS does not need any medication to function and in fact in my first surgery to suppress the tremor, I abandoned all my medication for some weeks. , although my doctor told me to do it gradually. Later to have full control of my body I started taking medication increasing the daily dosage very slowly, until the optimum was reached. In the second one, which is bilateral STN currently I am not taking any dopamine at all. With Pramipexol or Requip llife continues, but of course I have side-effects.
  26. 1 point
  27. 1 point
    WBV- Since it looks like you are here to promote vibration machines and your post depicts you as an expert in this field.Can you explain the biomechanics behind whole body vibration therapy?
  28. 1 point
    Sarakay, your husband sounds a lot like mine! Didn't want to do exercise, just sits in his lift chair, seems apathetic or depressed. It has been a struggle doing everything I have to do for him, but I am finally getting some help to come in 1-2 times a week. I am leaving the state this week for a week to attend a family wedding, so he will be going into a care facility on a respite stay. I'm pretty sure it will be a good break for both of us. It sounds like you're taking care of yourself and engaging with friends. Hang in there!
  29. 1 point
    Yes...we have an open ongoing contest on the WHP FB page. That is the easiest way to apply. We randomly select several people a month. I cannot guarantee I will always see PM's here, but I can try to stay on top of it.
  30. 1 point
    Yes, I know. In my first post, I said my post was going to be biased and I fully disclosed my relationship with WHP. I made every attempt to be transparent and fair. There is no hard feelings. If my expertise on Restore Gold brings no value to a thread about Restore Gold, then my comments are not necessary.
  31. 1 point
    Yes, I know and I wish you and your mom only the best. However, here is where you are not correct. It does not matter how much or what medications I take nor the degree of PD symptoms I have. In fact, the amount of my PD's progression is also of no concern. What matters is that almost immediately after starting UDCA my PD symptoms almost evaporated and remained that way for nearly 4 years without any change in medications. Now, some tremor has returned but it is nothing significant like my pre-UDCA tremors. So I am still on UDCA and I intend to continue its use well into the foreseeable future. One thing is certain and that is UDCA has caused me no harm. Fred
  32. 1 point
    https://parkinsonsnewstoday.com/2017/08/03/parkinsons-foundation-starts-podcast-on-research-findings-and-other-topics/
  33. 1 point
    If in doubt, talk to a dr. With PD, its easy to attribute everything to the disease. I've made that mistake. I had some terrible back and neck pain recently that I thought was Parkinson's. Turned out to be severe osteoarthritis, identified by an xray. The months I spent in the hospital and bed had really aggravated an ongoing issue. Cortisone injections, physical therapy, and a short dose of steroids cleared the worst of it up.
  34. 1 point
    So far in our patients we work with the rhematologist and watch for symptoms of Parkinsonism but in most cases these meds can be used together.
  35. 1 point
    Mowed our huge lawn today. I took my time, really pleasant weather too. I haven't mowed in twenty years, our SIL does the lawn but they are on vacation. Nice to know that I could manage it! Have a relaxing night, I'm watching The UnaBomber on Discovery tonight!
  36. 1 point
    I just figure it's no one's business...
  37. 1 point
    No stem cell therapy for PD has passed rigorous clinical trials, and so far, trials of stem cells for PD have been underwhelming. The notion that for-profit clinics, in business for a few years, are achieving amazing results while legitimate researchers with decades of experience are not, makes no sense. Offering unproven stem cell therapies outside the context of a legitimate clinical trial, without full disclosure and obtaining informed consent (which is what all these so-called clinics are doing, regardless of their claims), is unethical, by any ordinary definition of the word. Charging many thousands of dollars for unproven, potentially dangerous treatments of dubious benefit is even worse. And, yes, people have been very badly injured by stem cell clinics: https://www.nytimes.com/2017/03/15/health/eyes-stem-cells-injections.html These operations are a scourge. They trade on people's fears, and victimize the vulnerable. Any doctor who profits from this work violates their Hippocratic oath, at the very least. Plenty of them deserve to be jailed for fraud and reckless endangerment.
  38. 1 point
    Hi Hiker, Rates of progression vary widely. I'm starting my fourth year post-diagnosis, and have noticed very little (if any) decline in physical abilities. My MDS considers my progression very slow. Having said that, I was dx'd quite early, with just a few mild symptoms I probably could have ignored Like you, I'm active outdoors (hiking, backpacking, skiing, etc). I also have a job that keeps me physically active. Some of my symptoms are similar to yours--Neupro (a dopamine agonist) restored arm swing, and got rid of that draggy foot feeling, but also caused frequent nausea and afternoon sleepiness. These are mild side effects relative to what some experience with agonists, but still annoying. I haven't decided yet if I'll start taking it again, when the clinical trial I'm in concludes this October. As others have said, exercise is a great way to try to slow progression. You might want to keep an eye on Phase 3 trials of isradipine and inosine--two promising approaches for slowing progression that will be available immediately for that purpose if trials are successful. PD dx can be a shock, but also an incentive to focus on the present, and quit putting off plans for some future time (a future that may not happen, with or without PD). Last spring, my wife and I climbed our first Cascade volcano. Summer included multiple backpacking trips. Last fall, we went to Iceland for two weeks of hiking (including glacier hiking) and sightseeing--a trip we'd talked about for years. I did a three day mountaineering course on Mt. Rainier, which I'd like to repeat this coming spring under more challenging conditions. Based on my experience so far, and barring significant advances in treatment, I expect to keep doing this kind of stuff for another 5-10 years. Granted, pre-dx, I wouldn't have contemplated giving up intensive outdoor activity at 55 or 60 years old, and granted, being fortunate enough to have slowly progressing PD is not as fortunate as not having PD at all. But things are as they are.
  39. 1 point
    Welcome Hiker to the club no one "wanted" to join; but now that we've been involuntarily inducted we're glad it exists. Since exercise is the only "treatment" proven to slow the progression of PD, you are clearly on the right path to keeping it in "slow motion" (no pun intended). Keep up all the activities you currently enjoy and as LAD wisely points out add in neuroplasticity activities and maybe even some speech strengthening work - I've read that singing is excellent, however I clearly could only do this in the shower when no one else was home - I cannot generate music as much as I appreciate it . As you will find from the wonderful contributors on this forum, oxymoronically, we are all the same in that our journeys are all unique. The progression of your PD may indeed follow parts of "common paths" as listed in all the literature you can find (I think the pamphlets that NPF will be happy to mail you are a good start if you haven't already read them), but no one will be able to tell you on exactly what course your PD will progress. As far as starting medications, these only treat symptoms. There are some Neurologists that still feel Rasagiline (brand name - Azliect) may have some neuroprotection qualities - but that's not been scientifically proven and starting it is a personal decision only you can make. There are as many folks that are "for" it as "against" it - which is true with most approved medications. "One size fits one" is how I look at it. Moreover, with any plan of action (including inaction) you will best know what works for you by how your symptoms respond, pay attention to the non-motor symptoms as well; however you may not have realized these were PD related (if they in fact are) - that's what DH (my dear husband) and I found. Try to find an MDS that will help you craft a path of action that serves your purpose. Beware, finding and getting in to see an MDS will probably take months (took us 7 months and now we're having to find another which is also taking months, but we try to remind ourselves of the adage - patience [and persistence] is a virtue. Mind you, I always said "if I wanted to have [patients], I would have been a doctor" - works better orally than in writing - ). There is a serious scarcity of MDS specialists compared to the increasing number of humans diagnosed with movement disorders, nonetheless having this specialist as one of your trusted advisors is worth the work & wait. As I have quoted in other posts, I am a huge fan of Atul Gawande's book Being Mortal. I encourage you to ask and answer the following questions in your ever-evolving journey with how you manage PD as part of your new reality. Lastly, as far as when to go hiking in Spain, my "advice" is do it as soon AND as often as you want to and can. Why not go now AND in 5 years? I assure you the hike will be different each time but not because of PD, because it's something you want to do and will appreciate forever. Doing the things that fill our lives with joyful purpose and appreciating all the things in life we can seems to me to be a wise philosophy by which to live. Again, as LAD wisely stated, you have PD it doesn't have you. Best of luck with your continued journey, I look forward to sharing with you. LHG
  40. 1 point
    That is basically where I was about 2 years ago. So I know what you are going through. It's a gut punch to be sure. But, my best advice to you is to try to live you life as normally as possible. And anything you've always wanted to do (e.g. Bucket List) kinds of things, don't delay doing them. Don't go broke in the process, but really, don't let PD stop you. You've got a while where the disease is really going to be more of an annoyance than anything else.
  41. 1 point
    Evening everyone! My little garden is steadily producing 🍅 and zucchini. My herb pots make the best pasta sauces and bruschetta, everything tastes so delicious. Hope your gardens are doing well! My hubby is back in PT for his increasing lower back pain, it is helping him a lot! His OMT doc has said this pain is PD related. Have an awesome evening everyone!
  42. 1 point
    Love that iceberg picture. It's an excellent way to show people what PD can consist of as opposed to trying to explain it. Dianne-Did you get your tube replaced? I'm glad that you are so good at looking out for yourself. It concerns me the number of people who still totally trust the doctors and don't question things. jb: So you want to know how a 17 year old boys mind works????? What a question. My personal experience reveals that sometimes they DONT work. Boys are so much fun. Em and LAD it sounds like you both have wonderful sons. Hi Marcia, LInda, pathfinder and miracleseeker. TexasTom I like the picture of your dogs taking the nap. My little dog is my nap partner also. Be strong and carry on everyone.
  43. 1 point
    Good evening everyone! Busy enjoying summer here, relatives visiting, lots going on.
  44. 1 point
    “Keep your thoughts positive because your thoughts become your words. Keep your words positive because your words become your behavior. Keep your behavior positive because your behavior becomes your habits. Keep your habits positive because your habits become your values. Keep your values positive because your values become your destiny.” Mahatma Gandhi Keep fighting...never give up!! LAD
  45. 1 point
    I use CBD cannabis (Live in CO where it is legal). When I travel I use HEMP CBD. I find both help with tremor and restless feelings. I just need to take more of the Hemp than the cannabis. I also smoke now regularly (Indica, usually using a vape). SO ironic to me as I never even tried MJ as a kid. It helps so much.
  46. 1 point
    Thanks MurrayPD2. Heck, the Drs. don't have all the answers. I value input from people with PD and caregivers to PD people. I did not hurt my shoulder. It's PD. It just took some adjusting to accept it.
  47. 1 point
    Everything in life involves trade offs. Meds for PD are no exception. Ive been taking carbidopa/levodopa since my Dx 19 months ago. Only side effect since then was daytime sleepiness. So I switched from the regular instant release (often called Sinemet) to an extended release version (Rytary). Same medication, just different rate of release. I feel like I did 5 years ago as a result. However I know that the trade off is a high probability of dyskenisia (bad movements) at some point in the future. However, the latest research shows that you probably aren't saving yourself much if anything by delaying those meds. It is the total dose of levodopa that causes that side effect more so than duration of taking it. There are other meds you can try too. Primarily the dopamine agonists like Requip and Mirapex. However those have their own risks, including impulse control disorders, and sleep attacks (suddenly falling asleep when that is inappropriate like while at work or driving). Some on here choose to not medicate at first. For them exercise is a key part of fighting the disease, as it really should be even if you are taking meds. It will boil down to whether the symptoms are more bothersome for you than the risks of the side effects. But the meds are not something to fear, just something to consider with deliberation.
  48. 1 point
    # Hope, inspiration, success strategies For the most part, I prefer not to focus on symptoms because what I spend my time thinking about I get more of. That being said, I use a website that tracks all symptoms and has its own forum for many diseases/disorders: www.patientslikeme.com. It has the UPDRS scale and several other ways to track your level of health and wellness, including emotional and cognitive. I don't use their forum because my friends are here. The information you input can even be printed out in preparation for a visit with your neuro or MDS. It is free. Check it out. Don't worry, be happy. Dianne
  49. 1 point
    Well folks, after my appointment with my MDS, it looks like my DBS surgery will either be just before Christmas, or just after New Years, depending on surgical schedules. Between now and then, I just have to get through three more appointments. One with my surgeon, one with the Neuro-psyc., and one with my PT. My MDS doesn't seem to think there will be any problems, and that I'm still an excellent candidate. Todays Neuro appointment was an "OFF/ON" type. It was the first one we've done in a while, and the difference between OFF and ON was like WOW!. Although even with the L-Dopa, the tremors never really ever go away.
  50. 1 point
    well the IV is in and I now have a wrist ful of bracelets...... and the gass passer just arrived
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