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Showing most liked content since 06/18/2017 in all areas

  1. 6 likes
    Hello all, It's been a while since I've posted. This coming Monday, I start the inpatient segment of a Phase 1 double blind clinical trial, testing a new immunotherapy treatment for PD. Details of the trial are here: The trial is fairly invasive, including IV administration of the study drug (or placebo), five days of inpatient stay with 24 hour monitoring, multiple lumbar punctures (spinal taps), and MRIs. To qualify, I've had to drop all meds except Azilect (people on stable doses of Sinemet also qualify, I believe), and undergo a series of health screens, including DaTScan. Reasonably good health (apart from PD) and a positive DaTScan are required. Since most Phase 1 trials don't pan out, and I have a 1/3 chance of getting the placebo, I'm not expecting personal benefit. But the science is very cool--the hope is the compound (engineered antibodies) will clear misfolded alpha-synuclien proteins from the brain and dramatically slow PD progression. Immunotherapy treatments from other companies have already made it past Phase 1, and are starting Phase 2, so even if this particular trial doesn't produce good results, it seems the general approach has a lot of promise. My MDS is one of the study doctors, so I feel like I'm in good hands, and compensation for my time and travel is quite reasonable. Certainly there are risks involved, but I believe they are relatively small and manageable. I'll post more as the experience continues.
  2. 6 likes
    Mplsgrl86, I can relate, our four children were 3,5,7, and 9 when this started and it was diagnosed almost three years later. my first reaction was grief for the first week. My DW was a Pollyanna and wouldn't let it get her down. The problem was she would only look at the good things and let everything else go so there was no line of communication between us. That has continued until lately and it still isn't completely open. Getting on the same page with your husband to me is the most important thing going forward. Get all of the crap stuff out of the way so you won't have to worry about things later. I have had to do all of the financial planning, and lately got her to do some estate planning. I would get your wills in order, medical power of attorney, durable power of attorney, living wills and things our of the way. That way you don't have to make decisions when you are possibly really stressed later and can think things through. Having a child makes one aware of, who will be the guardian, how will they be taken care of, etc. more apparent. I can't believe how many people that don't have medical problems do not have a will in place. One big piece of advice from a dear departed friend, was that if you have seen one person with Parkinson's you have seen one person with Parkinson's. I think the people that face a lot of problems tend to post here, people that don't have to deal with much don't since they don't feel the need. Don't let the posts on here worry you too much, you can't predict how long this journey will be, what symptoms will show up, how fast it will progress, etc. Make your plan for the future and adjust it as life comes. I think that can ease your mind a lot. Message me or others if you have questions you do not want the public to see, people are really helpful on here. Coach T
  3. 5 likes
    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.
  4. 4 likes
    As a 45 year old mom of 3 boys and a YOPD....I understand your fears. It's incredibly overwhelming and there is a whole process of emotions but your family will be ok. It may not seem like it right at this moment, but eventually PD becomes part of your life. You can't control the fact that it has become part of your life, but you can control how you respond to it. It is not all sunshine and roses but it's not gloom and doom either. Exercise is key. A PD specific one is beneficial. There are lots of programs...educate yourselves and pick one that works. When I was DX, one doctor recommended dancing. My husband and I now take ballroom dance lessons. We even go to formals now...gown & tux. Never in a million years would I had guessed we would ever take dance lessons. As much as I feared things PD would take from us, I never thought it would bring us something but it did. And when we are busting a move in the living room, I forget I have PD. My kids are older than yours but I think they are more aware that anyone may be fighting a battle that you cannot see and they have definitely learned what it means to be married and love unconditionally. PD was not in the plan. Life will be different but it can still be great. PD does not define me, it's a part of who I am now. I have learned to be present - seize the day. Eat ice cream for breakfast with your toddler. I just listened to a webinar on the Michael J Fox foundation. It was about YOPD. It was very informative but not overwhelming. You can find it on their website under webinars. Good luck and welcome to the forum. LAD
  5. 4 likes
    The point of the exercise isn't to address the current symptoms (and in fact for most of us the exercise is be difficult and can exacerbate current symptoms). The stiffness I felt after a work 3 years ago is no where near how stiff and achy hurt I feel after I work out today. My tremor goes crazy while I work out, and the fatigue hits like a brick shortly after too. BUT, the physical act of exercising actually has the therapeutic benefit of resisting neurodegenerative diseases. When you work out hard, to the point of actually tiring yourself out, there can actually be measurable increases in dopamine in the stiatum. Regularly working out, even moderately, has been prove as one of the more effective ways to enhance the plasticity of the central nervous system. That means it it makes your brain better able to adapt and resist the effects of PD. This isn't sales pitch type stuff from an infomercial on late night TV, its scientifically documented fact. So, yes it sucks. It can hurt, and I'd agree that it can even cause symptoms to flare up. But, if that means my current symptoms flare and I slow down the progression of new ones, I'm all for it.
  6. 3 likes
    Crazy me in my Parkinson wellness recovery class! not very Ginger Rogers but I didn't fall on my butt!
  7. 3 likes
    Welcome. I am 46 and I probably started with my significant problems at about 40, probably some minor ones before that. I am glad you found it so early and have time to plan while he can take on diet and exercise. I was un-medicated until I turned 44 and I did ok, but was relieved to find answer by then because things were getting difficult. So, now I am on meds and doing ok. I have 4 kids, and they have managed pretty well with it also. It really affects the whole family in some ways, but everyone understands. So, I know I will be managing ok for a few years on medicine alone because I haven't been on C/L until late 2015. I also started on Neupro; which was great until I had problems with side effects. I was doing it for the same reason you are concerned about. I am now looking at DBS as an option to hopefully reduce the medications and have another tool to fight the natural progression. Even without it, I am able to get on my bike and take short trips with the kids. Things are better for us than they were before, so we have we don't see it as despair, but a chance to do more together than I originally thought possible. You will find there are many options available for him and the path is not as grim as it may seem today.
  8. 3 likes
    I totally understand where you are coming from. My husband has Parkinsonism and Dementia, but he is in his late seventies, not young like your husband is. The exercise advice is spot on, hubby refuses to even think of working out, because of the dementia he can't understand it's importance. Try to calm down, hard to do l know, you all will get thru this. Educate yourselves, that has helped me tremendously. We do have a YOPD thread here that is very active. Breathe. Come here often, so many kind and helpful people here to support you and hubby.
  9. 3 likes
    Sorry to hear this Afroney. My mom is sort of in remission from the C-Diff (KNOCK ON WOOD) but she is having problems gaining back the lbs she lost during this time. My mom weighs less than 100 pounds now so she's skin and bones. She lost about 20 pounds from this horrible disease. We all take a lot of things for granted or react negatively to certain things. When I see someone complaining how they need to lose a few pounds I tell them they should be thankful that they can have the pleasure to eat what they want and have some reserved weight on their bodies for when they get sick they can afford to let it go. My aunt is very petite and has always been under 100 pounds due to strict dieting. I told her if she ever gets a disease like C-diff there would be nothing left of her so she better start eating and enjoy it while she can. No one is going to be on their death bed relieved that they lost those last 5 pounds and had focused their time and energy doing so.
  10. 3 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
  11. 2 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
  12. 2 likes
    I don't think it matters if your hand is at rest. If you don't have a tremor, then you don't have a resting tremor. A twitch is far from being a tremor. Add 17,999 more twitches to your solitary twitch each hour and you've got yourself a tremor. My suggestion is to accept your diagnosis of Essential Tremor; go live your life; and be thankful that you don't have PD.
  13. 2 likes
    Manolo, You're going to have to set your timeline question to the side. The best answer I've received so far was from my MDS who said let's hope you progress slowly. No two people are the same with this disease. I've had Parkinson's for five years, officially diagnosed 3 years ago. I think (hope) I'm progressing slowly. My symptoms are basically on my right side but noticed some funky stuff happening on my left side. If you find the crystal ball, take a peek for me. Dave
  14. 2 likes
    I had so much fun on our imaginary trip! Thank you jb for describing it in such detail! Happy Belated Fathers Day to all. shera I hope youre feeling better after your fall and Dianne I'm sorry about your pepper plant. None of our onions came up. I think maybe we buried the seeds to deep. Hello pathinder, linda, bard, Marcia, count!
  15. 2 likes
    Matt, This doesn't sound like Parkinson's. It usually starts on one side and eventually migrates to the other side. If your only symptom is the twitch/tremor that hasn't progressed in 7 years consider yourself lucky and have a happy productive life. I'm not sure what the unsteadiness is. When I have balance issues, it's really obvious. It looks like I've had one too many which kinda of sucks cause I don't have the buzz that goes with it. If you're still worried, I hope your doctor can figure it out. Good luck from one programmer to another. Dave
  16. 2 likes
    Good morning everyone. Happy Fathers day to all the Dads that read here. Pathfinder: I hope and expect that your husband will rise to the occasion and that you have a wonderful visit with your family. Well, it was a flight of imagination but a get together tour would be fun. Hi Dianne, squeeze all the goodness out of this day and enjoy it doing whatever. You deserve it. Be safe everyone. jb
  17. 2 likes
  18. 2 likes
    Funny - I came back to the forum when I gave up facebook for Lent. I had decided that I was in a good place and I should reach out to others who may need support. It ended up helping me! Welcome & hope your comeback experience is as good as mine has been! LAD or Muffett as I been nicknamed
  19. 2 likes
    Thanks Dan and Adam... Yes, VA treatment has been very good (here in Connecticut at least), although I did go to that MDS in February. He agreed with everything the VA Neuro was saying and doing, as I might have expected. In a couple of weeks I'm going to see him one more time and ask him to look at my DatScan (cd) with me. It was good to have someone else confirm, though. I did apply for VA disability, that should come through soon. Gosh, you people are too young for this crap. I was lucky, it held off until I was an old fart... Mark
  20. 2 likes
    Yes, you get temporarily worse as your body processes the excess neurotransmitters created by the exercise, but are overall better for it.
  21. 1 like
    Hello, Chris! Great name! (I am Christine.) I also haven't been on here in awhile until about 24 hours ago; not on FB as much anymore, either. Just too busy lately, I suppose. Looks like there's plenty of info & support to be gained here still. Welcome back!
  22. 1 like
    Ditto BigRingGrinder + my left hand tremors when I write (with my right hand). Holding hands during prayer - yes. Talking to someone - yes. I don't even know that you could call these things stress. Like BigRingGrinder said, it seems more like multi-tasking to me.
  23. 1 like
    Hey Stump. Happy Birthday. One year older and 50 years wiser.
  24. 1 like
    Oh yes I used to buy those stretch over the head type bralette for my mom. She would struggle with me while I got it on her that they usually ended up being inside out when I thought I was done. Now she just wears jockey tank tops under her tees. So much more practical and it adds warmth and an extra layer of protection.
  25. 1 like
  26. 1 like
    I have discovered Coobies, which are bras that you put on over your head . They are extremely comfortable, and only cost about $20, but I am 70 and small breasted, so they might not be comfortable for someone who is better endowed. But they come in all kinds of colors and patterns, and are fun to wear and to look at. Another win/win for this old Parkie!
  27. 1 like
    I realized today that I will only buy front-hook bras in the future. Not only do I find them much easier to put on, but so far, I can only find them in push-up style. I call that a win/win!
  28. 1 like
    Yes. Parkinson's seems to thrive on stress; not just the bad forms that can leave me feeling stressed, but the good forms that can excite, too. Almost any amount of stress can increase my symptoms dramatically. Never gave much thought to stress before Parkinson's. It was a part of life to be managed, controlled, and directed. And though they never felt like stressful events before Parkinson's, talking and interacting with groups now seem to produce similar results. When I closely analyze those situations, I now see what look like tiny threads of stress that I never gave much concern to previously in such routine, everyday activities. Is it the multitasking involved with listening, thinking, finding the words, pumping those words to the vocal chords, and then getting the mouth to work? I don't know. Besides Carbidopa-Levodopa (which stress seems eventually able to break through), yoga has taught me a couple of methods to help stiffle the stress responses. Supplements like L-Theanine also help me remain calmer. There are probably more accurate medical terms and excuses. Just my observations.
  29. 1 like
    Diagnosed in May 2017, I am 43, (symptoms for about year and half to two years) Does anyone else have this? when I get up in the morning, I am extremely stiff. Like I had been riding in a car for about 24 hours. I played college football and felt sore after a game all over then, but this is different, I have done nothing strenuous the day before. Takes me awhile to get moving. It is even hard to put on clothes. This is a little better since taking medicine, a few months ago it was very hard to get up and go to work. Curious on your thoughts...thanks
  30. 1 like
    Yes. I think part of the problem is that the dose I take before going to bed at night wears off while asleep leaving me in a massively "off" state when I awake, and until the first morning dose kicks in, . . . assuming I sleep until the morning alarm. Tell your MDS. There are a few things that can help.
  31. 1 like
    Oh God, YES! Sounds just like me just prior to dx, also at 43. Some mornings, I was so stiff that my legs nearly gave out on me when I got up out of bed. Felt like someone spent the whole night beating me with a hammer while I slept, especially my feet. I remember thinking, if this is what middle-age is like, I don't know how I'm gonna make it to old-age! It is VERY different from any other soreness, similar to how the fatigue is very different. I thought I knew fatigue with mild anemia; then I became pregnant. I thought I knew fatigue when I was pregnant; then I got Parkinson’s. Someone on here described it as "wading through wet cement." To that I would add, "while wearing a lead suit." Neupro patch was a game changer for me. Shortly after starting it, one of my friends remarked, "WOW! I wish I'd taken a video of you 2 weeks ago, because the difference is AMAZING!"
  32. 1 like
    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!
  33. 1 like
    Speech degradation post DBS can also happen gradually. At first, degradation may be so subtle and you may not even notice it. It takes about 5 years for speech to deteriorate completely and other DBS side effects to fully surface. So be careful about listening to people who just had DBS in the last couple of years. At that point, it's hard to tell if it is the DBS causing the side effects or disease progression. It's easy to blame it on disease progression than DBS and most DBS centers blame it on disease progression. That could be why DBS side effects get overlooked in studies
  34. 1 like
    Nice, Dianne!!!!!!!!! How very nice it would be to meet you in person.
  35. 1 like
    good morning everyone, Shera, hope the leg bruises are healing up good. Hi Em, sunny skies today? Peace, I forgot to tell everyone that on the road trip during a quiet day in Oklahoma City, you entered your horse in a local barrel race and you rode to a second place finish..(could of happened, could be fake news) Lad, Good Balance! Linda, good luck getting that visit in.. that will be nice for you ladies.. Busy day ahead.. Good days to everyone.!! jb
  36. 1 like
    I'm impressed. You did really well,
  37. 1 like
    Essential tremor or PD. How does your life change if you have one or the other? What I'm saying is just take things one day at a time. If you really have PD it will show up sooner or later. As Patriot suggested please live your life and don't analyze it so much.
  38. 1 like
    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.
  39. 1 like
    First off, where on that site did you find those stats? A quick perusal didn't show them, but I admit I only spent a couple minutes looking. That said, that website is written by someone that specializes in people that are unhappy with their DBS outcomes. So, not only could there be bias in sampling to come up with those numbers, she also has a vested interest in people finding dissatisfaction with DBS. That is not to say she is at all unethical, or doing anything against overall best interests in the PWP population, but one must always consider the source. Color me still skeptical of your claims of >50% of DBS patients having near total loss of ability to communicate and developing severe balance problems as a direct side effect of DBS.
  40. 1 like
    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.
  41. 1 like
    Over all, still positive here. The "loose their speech" does affect some, but in my Parkinson's meetings & Rock Steady Boxing class I haven't seen a decline of speech. One of the things I did not expect was less chocking/gagging. I love Tortilla chips, but often eating out I was gagging so badly I just didn't touch them, so that has improved. Freezing. Much improvement. Balance... I'd say a wash, I don't fall often but pre and post about the same. Buttoning a shirt, shoe laces... Huge Improvement with finger manipulation. Reduction of medication has been an improvement. Dystonia... used to wake me in the middle of the night with twisted hand and twisted foot. Huge Improvement! Peripheral Neuropathy. Much more aware for the burning. Irony is we addressed the Dystonia, so now I am aware of Neuropathy issues not fun at all. Adding Gapentin to my daily meds. Nothing new as I remember thinking my feet were on fire a long time prior to DBS. Cognitive... wash as I know I'd space out before DBS. I suspect this is just a progression of Parkinson's. Adding Donepezil (Generic Aricept) to my medication to help with memory. I gave up flying years before my Parkinson's Dx. Weight, I had dropped from 300# to 235 (??) at the time of surgery. Went back up to 245# and have been holding around 240# since then. Bottom line is I had to cut out snaking on cheese and crackers when taking meds every three hours. Now with meds every four hours, gives time to snack. Sigh. There is risk, but addressing DYSTONIA and wearing off of Sinemet was my reasons behind DBS. So it addressed those. Not a "fix for Parkinson's" at all. If it gives me a few more good years, why not. Enjoying a walk with my faithful Golden is worth every moment. There are risk with DBS, doesn't cure anything, but I had two reasons (dystonia & med wear off) that it addressed. I returned to boxing too soon (take it easy for eight to ten weeks) no regrets. I know some people who didn't fair well with DBS, but I'd say over 90% had improvements worth while.
  42. 1 like
    They call it "rallies" . Abunch of campers get together. I only know of one. I guess people of like interest gather and I think it is out west. We were invited once but could not attend. So why couldn't we get together? We could all drop our food on the floor at the same time.
  43. 1 like
    Ambien was pretty useless for me. Works for a little while, until you build tolerance. I dont think its intended to be used for chronic insomnia associated with Parkinson's. 100mg of Trazadone worked pretty well for the first 5 years or so of my disease, not so much anymore. I take 2mg of Klonipin now for sleep issues. It works for me, but can be addicting and dangerous for alot of people and interacts poorly with alcohol and pain meds.
  44. 1 like
    I use CBD Oil....I'm in Canada where it's legal for most is my reply when I questioned my Cannabis farm. Is the Equivalency Factor based on how much cannabis was used to make the cannabis oil? No, not necessarily. As part of the licensing process, Health Canada requires that every Licensed Producer create a way to equate dried cannabis (prescribed in grams by Physicians) to cannabis oil (sold in milliliters). This makes it easier for Physicians to continue to prescribe cannabis in grams per day, and for us to be able to sell cannabis oils to our clients. Our goal was to propose a method of calculation to Health Canada that would maximize the amount of Cannabis Oil our clients were able to buy. We actually have the highest equivalency factor in Canada at the moment (1 g = 12.5 mL for CANNA OIL 20|0). Other LPs have an equivalency factor of 1 g= 3-10 mL for products of similar potency and size. This means that their clients can order less oil, because it takes more away from their 30-day ordering window. Let’s take a look at our recently released lot of CANNA OIL 20|0. It contains approximately 20 mg THC for every mL of oil (fully decarboxylated). So, in a 50 mL bottle, this amounts to approximately 1000 mg of THC (20 mg/mL x 50 mL = 1000 mg THC). Now let’s compare to an “average” concentration of THC in some of the cannabis flowers that we use to make our oil (we’re using whole numbers to make it easy to follow). For the sake of argument, let's say that we use flowers with a potency of 10% THC (on a fully decarboxylated basis). This means that each gram of cannabis flowers contains 100 mg THC (1 gram = 1000 mg, 1000 mg x 0.1 = 100 mg). Theoretically we would have to use 10 grams of flowers to equal 1000 mg of THC (which is what we have in our 50 mL bottles). But this process is not 100% efficient (nothing ever is!). So we have to account for extraction efficiency during cannabis resin production, plus losses from decarboxylation, dilution, and packaging. It actually turns out that we need to use at least 15-20 grams of flowers to make one bottle of cannabis oil.
  45. 1 like
    jb, I thought I was Walter Mitty. !!!! Or Walltris Mitty. In my PD mind I can do anything. But when I actually start to really do it...doesn't have the same ending. Chris_D, I post here and there and sometimes not so much but always thinking of all the Parkies that post here. Welcome! Dianne, hoping you are in good spirits and doing great.! I normally can't post everyone's name so I just will generally note a few. Have a good weekend everyone !!!!!
  46. 1 like
    We do have some success with deep tissue massage. Yes, I know, it is yet another uncovered medical expense. IF DH gets a half hour massage every 2 weeks, the numbness and tingling in both hands goes down quite a bit.
  47. 1 like
    It has been getting worse. A friend was over last year, and during a football game there was a Lyrica advertisement. He quipped about another "made up disease". It was the straw that broke the camels back and I lost it. Even my wife was shocked, but it is just beyond description. Closest I can explain it it is it feels like my feet have been submerged into boiling oil. I'll wake up from the pain, flip the covers off to see everything is OK. I kept thinking "did I step into a fire ant mound?" when this started a few years ago. Gabapentin is working to help "mute" some of it. Intense work outs help. If I can "tune it back" it helps to go walking/hiking. If I am just sitting there watching TV, it seems worse. Middle of the night, yep only help is to get up and walk around. Walking outside on cold concrete helps with the feet. Had a great weekend, active at a Golden Retriever meet, Parkinsons Pot Luck, and spent all day Sunday in the shop doing wood working. As long as I remain active, it helps. Gabapentin helps me remain active.
  48. 1 like
    I have the tingling and numbness on right side. When I am rigorous about exercise, it recedes. When I write the alphabet with my right foot it goes away for awhile. By the way, if your doctor "didn't care about half my pd symptoms," then you need a new doctor. PD is full of baffling and annoying symptoms - you need someone in your corner.
  49. 1 like
    Welcome, Mark. Your second guessing what sounds like a solid diagnosis is normal. I didn't want mine to be accurate either. Not everyone has all the symptoms on the list. There are people with Parkinson's (PWP) who never experience tremor. Your list of symptoms, the neurologist's exam and the positive Datscan provide a pretty convincing case. If the 2nd doctor is a Movement Disorders Specialist (MDS) and not a general neurologist, it would certainly be a worthwhile visit. An MDS has much more experience diagnosing and treating PD. They are usually in a setting with all the other professionals who will be needed to effectively treat PD; physical, occupational and speech therapists, and neuropsychologists all have important roles to play. While I know it is no fun to get this diagnosis, you have reached out to a very supportive bunch of folks who are learning that there is still life after diagnosis. I'm glad you found us. Dianne
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    I've never felt you feel sorry for yourself, Daven. Just the opposite. (And also along with chicken little was the little boy who cried wolf.)