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  2. Hey everyone - thanks so much for your input. Currently I am not seeing a MDS. I've seen only GP's and an internal medicine specialist. I live in Canada so seeing specialists can be a drawn out process if it's not an emergency. The one downside of free health care. I do plan on asking my GP to refer me to an MDS because the internist did say he suspects possible essential tremor. I'd rather have an MDS make that diagnosis. I've had an MRI - which ruled out brain tumour. The muscle twitches will be evaluated by an EMG test in the coming weeks/months. I know Parkinsons - especially young onset is rare - however the hand tremor naturally has me worried. Many a Parkinsons story starts with someone noticing a twitching of a toe or finger or small tremors. Agreed, its not a resting tremor, but again, with things I've read - its not always resting. And I also know that it could be years before anything else creeps up to point towards a more definitive Parkinsons diagnosis. Right now I'm trying to focus on the stress elements - doing yoga, meditation, deep breathing exercises, walking, establishing healthy routines. Thanks again for your thoughts. I do appreciate it.
  3. I did try and do a search on this subject - but, was unable to find what I was looking for. I've been diagnosed for about 6 months - but, was aware of the disease symptoms for a couple of years before that. Before my diagnosis, I weighed about 180 and I'm a 5'9" tall man. Over the past year, I seem to have generally drifted down to about 165 lbs - and, I feel as though I occasionally try to "cram" some food to stay at that weight. I've googled "unexplained weight loss" and the results (potential causes) seem long and scary. Do PWP generally experience a slow, consistent weight loss as the disease progresses? If you have experienced weight loss, did it ever stabilize? Thanks much, Rosencrantz
  4. I don't think this sounds anything like Parkinson's. You're stressing out over symptoms that mean very little. Twitches and small aches and pains are a normal part of life. I think it sounds like stress and I would suggest that a psychiatrist might be a good place to start. Parkinson's Disease symptoms normally develop slowly - over years. Parkinson's symptoms normally start on one side, not both sides. Parkinson's normally involves a resting tremor, not an action tremor. Where are the symptoms that point to Parkinson's Disease? I just don't see them. After you've ruled out anything serious (like a brain tumor, ALS, etc), then I would suggest forgetting about the symptoms; staying off the internet; and going on with your life.
  5. Today
  6. Hey Superdecooper seen you are on how things going. Been wondering hope well. Tom
  7. OCW I agree with not looking to self diagnose on internet. But from what it sound like your doctors are thinking your new position at work and stress are your problem.. Now I am no doctor but the lose of some grip and your talking of hand problems. I know you had a EMG to check nerve conduction throughout your body. I would try a good chiropractor. When you go in say notion of anxiety, stress and new job. Just tell him about your hands and grip strength. A good chiropractor will take a good look at your cervical spine with x rays. It would surprise you the knowledge a chiropractor has of the spine. With this said please don't look up c-spine. I found going in blind and just state symptoms works best. Please don't take what I have said as if I think you are a basket case. I do not! But pinched nerves make you tense up and can make things worse. One thing you will know after a chiropractor looks you over he or she will see a pinched nerve. I am only trying to give you another avenue to check out. Tom PWP
  8. OMAHA TOM

    Weakness

    Hello Gardener I am 64 now and if I would of gotten to the right doctor would have been diagnosed long before 59. I now Take a total of 900 mg sinemet a day. But to be honest I think even without Parkinson's our exercise level of tolerance changes as a normal part of aging. Not everyone will change at the same rate. I can speak in my case wear and tear physically is part of my feeling worse after exercise . Getting back to dosing over my 5 years has been adjusted. The dosing time between doses moved to less time between doses and increased to control symptoms. (stiffness, cramps, slowed movement and tremor ) My muscle mass is less, my strength is less, and my stamina is less. But I am 9 years older than I was at 55. After reading your workout I think you sound to be doing pretty darn good especially for 8 years in. Starting off 3miles per hour 30 min. and 3 degree incline is a good pace. My wife is your same age and that is her daily walk.(no PD) Next exercise try a shorter warm up and then do your arm presses and legs presses first. Then walk 20 min.. Make a comparison. See if you were able to do more reps arms and legs. Fatigue is a part for most a symptom of parkinson's. ( You are not old at 63) and believe me I know it is a taboo to mention. My wife lets me know! But for almost everyone our Max capability at 55 and 63 will change. Fact of life. Another fact I think even without parkinson's ones stamina (fatigue level probably is not the same at 55 and 63). I think you are IMO ( also at Rock S boxing observation of people in our age group men and women) are doing great. Keep working out check with your doctor to see if a change in dose and timing might be tried. It could make a difference. I hope noting I have said has offended you in any way. That was not my intention! I can tell you this since I have had my diagnosis my goal has been to fight PD. There are days that are better than other ones. But we can only live one of those days at one time. Thinking about the negative only fuels negative. As a listener I have read positive in your post. You are fighting back by working out. Take one day at a time. And also observe others without Parkinson's. I bet you will see your performance is pretty darn good in com😊parison. Tom PWP
  9. Haku's, This doesn't sound like Parkinson's to me. I'm not a doctor, so this is just my opinion. Parkinson's manifests extremely slowly especially in Young Onset PD. It starts on one side and progresses over years. Make an appointment with an MDS who can determine the difference between the multitude of movement disorders out there. Lay off Dr. Google, he is not your friend and will only help confuse your situation. Dave
  10. OneClickWonder, This doesn't sound like Parkinson's to me but that's just my opinion and I am not a doctor, just a guy with PD. You should make an appointment with an MDS (Movement Disorder Specialist) who can discern the difference between Parkinson's, Essential Tremor, or an Anxiety Disorder, You need to lay off Dr. Google, he'll drive you nuts and your mind will analyse every twitch, hiccup, you name it. Dave
  11. Gardener

    Weakness

    Thank you all for your responses. BigRingGrinder, the video you provided is helpful. I plan to visit her website to get more detailed information. Your experience with loss of strength closely resembles my own (the last time I worked out on weight machines, about 10 years ago, I could curl 35 pounds). Maybe I'm just getting old and worn out or maybe this is the disease. I'll probably never know but when I left the gym yesterday the attendant said, "don't get discouraged" and I told him that I wouldn't give-up as it is obvious to me that I need to build strength in order to function on a very basic level. I would like to hear from others if weakness is an issue. Gardener
  12. Hi Haku's, There is no definitive test that will diagnosis Parkinson's Disease except autopsy. The best advice I can give is to see a Movement Disorder Specialist (not a general neurologist). Based on your physical history and exam he/she may order a Datscan to help guide the diagnosis. You may also be given a Levodopa challenge (ie, you will be given a dose of levodopa then wait for an hour or so then reexamined to see if your symptoms improve). The process of diagnosis can be long. Parkinson's Disease has many symptoms that mimic other conditions so be careful not to over analyze every sensation in your body while you are waiting for your diagnosis. Keep us posted. Gardener
  13. Haku, I'm 37 and have known I had Parkinson's for three years. The hardest time for me was the self-diagnosis phase when I was doing all of the things you talked about -- analyzing symptoms, Googling, what-ifs,... I was losing my mind. I'm not a doctor, so I definitely can't say whether you have PD or not. Everyone's symptoms are different and there are a lot of things that look like PD that aren't. Yes, you're neurologist -- especially if he/she is a Movement Disorder Specialist (MDS) -- can answer these questions. Don't overthink the questions to ask... "Could it be PD?" is fine. As far as I know, the DAT scan is as definitive as it gets (it was the final step in my 9 month diagnosis). When I received the official diagnosis... honestly.. it was something of a relief. I mean, yeah... it fuc&!ng sucked... but the mystery was gone. I didn't worry anymore about telling my two young boys that dad had a brain tumor and only had 6 months to live. I took solace in the idea that most people die with PD and not from PD. Young Onset PD, in particular, tends to progress slowly. My symptoms (tremor and bradykinesia in my left arm) have been largely the same for three years. I'm not on meds. I work every day. I run around chasing my two boys. I'm ostensibly normal to an outsider. When things do progress, there are good meds to help manage symptoms. And by the time those don't work for me, science will have found a cure or something like it. Fuc& Parkinson's. It isn't going to win. Everyone gets sick when they get older -- heart problems, cancer, whatever else... I just found out the name of mine early. Stay active... exercise every day. I'm training now for a Spartan race in June. Why not? If you can get a private disability insurance policy, do so. It gives you an extra financial piece of mind if you eventually need to stop work one day (not on the horizon for me). And exercise more. But... before you go there, go to your neuro/MDS. Sean
  14. Gardener: Yes. Maybe. Hard to say if the muscle weakness / muscle fatigue / extreme exercise intolerance I experience is what you are experiencing. Nor do I know if what you experience is related to Parkinson's. If it will help, a few months ago I came across this article and video from Dr. Sarah King (a physical therapist who specializes in Parkinson's), pertaining to weakness. Point number 3 in her article best described what I experience, probably with a smattering of items 1, 2 and 4. https://www.davisphinneyfoundation.org/blog/4-reasons-your-parkinsons-symptoms-may-be-worse-after-exercise/ [Well, I didn't intend for the whole video to pop-up when I pasted the link.] As for me, I'm still trying to figure out how to get my mitochondrial back to work. Baby-steps with exercise works slowly for me (i.e., over years), but I do see a small amount of progress (over years). Ironically, while exercise makes me worse, the lack of exercise makes me even worse. Various nutritional supplements aimed at the mitochondrial also have helped--again, small amounts of progress. The biggest gains I have experienced though have probably come lately from Probiotics and CBD Oil. Started working with Probiotics about two-years ago. Besides muscle weakness, they also help me immensely with getting C/L working faster and extending its duration. Or is it the other way around? Better C/L dosing makes for less weakness? My MDS said something to the effect that medicine is just starting to investigate the effect of Probiotics on Parkinson's, but that Probiotics seem to help improve digestion which helps get more C/L into the bloodstream, and get it there faster. Only began experimenting with CBD Oil a few months ago when I was given some free trial samples. For me, CBD Oil is showing amazing effects on weakness. After years of working my way down from a strength training routine that involved such exercises as 225-pound bench presses and 100-pound arm curls, Parkinson's took me to a point where working out with a 5-pound rubber resistance band twice a month was too much; however, after one day of CBD Oil I performed a two-set, 9 station strength training routine with a 30-pound rubber resistance band, swam 800-meters, biked uphill for 15-minutes, and then went to lunch for two-hours with friends. Before CBD Oil, not only couldn't I use a 30-pound resistance band, I couldn't do two sets of strength training with a 5-pound band, and any one of those activities would knock me down for a day or two. Unfortunately, CBD Oil hasn't given me superhuman strength, but I am tolerating minimal activity a whole lot better. I may have strayed from your original question [it's a Parkinson's thing], and if so, please disregard my ramblings. Cheers. P.S.: Three reps of 10 bicep curls with no weights added to what is normally about a five or 10 pound curl bar? I'm starting to think that dream might come true!
  15. Hello, let me start out by saying that I appreciate any help that can be provided by people stricken with this dreaded monster. During the spring of 2017 I noticed slight twitching of the bridge of my nose. It didn't worry me at all as I dismissed this as merely a result of too much caffeine intake. Throughout that year the twitching overtook my body. It was everywhere from my feet to my hands and over my face and head. Since then, I've searched for an answer but finding nothing but a growing anxiety about my future given what I think will be a damned diagnosis of who knows what. Doctors have ordered MRI's that have come back clean. Blood tests all of which I've taken, it seems like, have come back clean. I've research everything from ALS to MS. For a while I was confident I had MS before the MRI scan proved otherwise. A few months ago I started experiencing body jerks while awake relaxing. Sometimes it would be my leg other times my index finger. My anxiety grows even more vicious and the wheels in my head begin to turn again and I remembered a specific issue I had a year before that seemed to go away. When I would walk, and this would happen very occasionally, my foot would drag for one step. Then, I'd walk normally until it would happen again weeks to months later. The wheels keep turning... ...My anxiety keeps growing I remember when playing piano years ago that my middle finger would have this stiff, numbing like sensation as if it had several rubber bands tide tightly around it. This would one last a day or too and I thought it was tendinitis. Thinking back now I think it might have been caused by something much more sinister. When I was about to go on for a performance of a show opening night my index finger started twitching uncontrollably. When I saw this film over winter break this year the wheels finally finished turning. I saw the Late Quartet. I'm sure some of you out there have seen this movie as it follows someone with Parkinson's. I just remember thinking after it was done that one day when I'm old and impotent, that I'll have that. Oh well... I thought. I thought that was an old person disease until I started googling. After knowing that younger people also get this disease I started noticing other little thing. Like when I would place my hand in certain resting position I would feel this tremor come on. However, it was only in this one position. Recently, I've had this internal twitches that I couldn't see but would only happen in one hand. All the twitches that would originally occur in other place all over only affected my left side. Now this one's big and as of today this is only the second time I have noticed this. The twitching in my left hand have happened in sudden bursts. They are severe and rapid but only last a couple of seconds. They happen in several fingers at once and it feels like in the palms as well. They resemble tremors. I was laying face down once and my right buttocks started shaking uncontrollably for a second or 2. I don't whether it was a tremor or very rapid twitching My Leg. This also only happened twice but my leg has felt this stiffness that make it hard to walk. It's like a cramp. It only happened as I had my legs crossed sitting. Right now under my left eye I'm getting twitches and the left side of my face feels stiff but I think that might be the twitching I don't get fatigue. I don't thrash in my sleep. No full on tremors yet. Handwriting is fine right now but I'm right handed. No history of Parkinson's in family. I don't always get enough sleep. In your opinion how much do I have to worry about? Next time I go to my Neuro what tests do I ask them for? How uncommon is it with someone my age to have this disease at the stage I am describing? Is there a definitive test like Dat scan or Ldopa that will tell me if I have it? Please... I'm very very afraid.
  16. Yesterday
  17. pdmanaz

    good news

    Linda, Im sure we all know your position on your christian beliefs. Im not being critical regarding that. I want to make a point that your beliefs arent the only ones represented on this forum. If each of us chose to express our own beliefs with the same intent you have, this forum would not exist in its current state. You continue to evangelize your personal beliefs on this forum where in my mind it is an intrusion of my rights to have a sound and meaningful discussion on PD. You have your own thread here already.
  18. Beau's Mom

    Weakness

    Gardiner, it's hard to see the progression, even though we know it's inevitable. I discussed it today with my Rehab Psychologist. She has great faith in my resilience but I don't know that I'll be able to stand the pain if my dystonia gets much worse. I have to remind myself that my survival rate for getting through tough times is 100% so far. Birlest, I have learned from experience to never exercise without Sinemet on board. I did it just once. I couldn't talk or move for several hours until my frozen stomach relaxed enough to allow some Sinemet to get to the small intestine to be absorbed. Dianne
  19. Birlest

    Weakness

    I'm not a doctor but I have Parkinson like you. I practice treadmill and weights. I would say your cardio response is fine; all your datas don't seem to me to justify any weakness. I experience weakness most of times if I am off of ldopa, especially at the beginning of workout, but you properly do workout under levodopa coverage. May be you could try to change brand of levodopa, arranging it with your doc. Otherwise, unless your weakness is a side effect of other pd drugs you take (if you check you will find "tons" of side effects), I would say your weakness is not PD related... but is very hard to say this. Sorry for not being helpful, pls, if you find the correct answer, keep the thread updated!
  20. John Hoefen

    Weakness

    hI Gardner n the beginning I had weakness and soreness like yours.Five years later Im doing well with small amounts c/l 1.5 and 1/2 comtan with each dose every five hours.
  21. Gardener

    Weakness

    Okay - Treadmill @ 3mph with incline at 3 - heart rate usually doesn't go over 110. I'm 63 with no other health problems. I do time my workout at about 30 min. to 60 min. after my dose of Sinemet (150mg). My legs and back usually hurt when I'm about half way into the treadmill. More alarming to me is the weakness in my legs and arms when I try to do the weight machines (again with no added weight). Other things I have noticed is weakness in hand when trying to open medicine, contact lens package, jars, etc. This didn't happen all at once - it has been slow and steady. Thanks for asking. Gardener
  22. I agree with otolorin. A Movement Disorders Specialist {MDS} is the best person to see for determining a PD diagnosis. The sooner the better. By the time we show symptoms, we have already lost 60 to 80% of our dopamine-producing brain cells. Loss of dopamine is what causes the symptoms you're describing. Even before you see an MDS, start exercising regularly. Exercise is the only thing proven to delay the progression of PD. You can call the Helpline Number at the top of the page to find an MDS closest to you. I had tremor at age 27. Despite adding other symptoms {constipation, anxiety, depression, inability to smile on the right side of my face, increasing tremors and even loss of balance) and seeing several doctors over the next three decades, I was not diagnosed until I was 57, in 2010. Best wishes to you. Please keep us posted. Dianne
  23. Hi oneclickwonder, I would advise you to go straight to a Neurologist or preferably a movement disorder specialist.I had anxiety and occassional panic attacks for many years,and was being treated for these conditions,before I was finally dxed with PD over 2years ago.In my mid and late forties,I have experienced light headedness,muscle twitches in my legs,which I overlooked and occassional fine intention/action tremors.Sometimes for YOPD people,it takes many visits to different doctors before they are actually diagnosed.Good luck.
  24. MusicMan

    good news

    Sorry to reply so late...I don't come on here too much. I meant, don't expect much from Dr Okun...he seems to have his own agenda. Yes, I'm still doing well. I'm progressing a bit, but overall have very little to complain about. Still having fun and living life.
  25. Birlest

    Weakness

    Pls let's have some more info on treadmill: speed? Incline? Bpm (beats per minute)? Age? Levodopa coverage during workout?
  26. Gardener

    Weakness

    I have noticed slowly progressive weakness in my hands, arms and legs. I started going to the gym in January and walk for 30 minutes on the treadmill, then do bicep curls (3 reps of 10) with no weight except the machine, same with leg lifts. I can barely do the arm and leg exercises and the treadmill leaves me feeling worse than before I got on. Anyone else having this problem? I have plenty of lung capacity and I'm in good physical health and have been active my entire life so not sure if this is PD or not. Gardener
  27. So moving, Tom. Thanks for sharing. And yes--absolutely good values mean a lot.
  28. Linda There are still people with good values. I just went to the bank and delivered my wife some money on her lunch break. At my wife"s work a fellow worker came in and told about a retired couple that live in Glenwood ,Iowa. They have lost everything from the flooding. They have nothing left to even change into . The husband needs a lift chair it was also gone. They lived on SS as their only source of income. They have no flood ins. The employees at her work are of many different faiths and some that don't attend church. It is like the movie (Pass it on) Everyone is pitching in. The retired couple are complete strangers. They are not related to the person taking up the collection to help out. That same person that started the collection is letting them stay in their home. And now is helping them to see if they can get into low income housing. 😊 I didn't sleep much last night. But the above kindness has been the best pill today for my parkinson's symptoms. In fact the last sentence of this post is the first time I even realized I have parkinson's! Since my wife text me to go to the bank. Tom
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