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  1. 4 points
    Venting is good. It relieves some of the pressure rather than letting it build up to explosive levels. And while it's good to look at our problems with some perspective and be thankful that it isn't worse, it's also okay to acknowledge your problems and the unique way in which they affect you. I, personally, have found that even a mild pain that goes on consistently for weeks on end begins to feel more like severe pain. So never let your perceived size of a problem prevent you from sharing it with us. I say this for all those who are reading this as much as I am for you. Kevin
  2. 3 points
    Hi all, I'm also new to the forum but not recently diagnosed. I was diagnosed over 10 years ago (I'm 69). I'm mainly affected on the left side and have a mild hand tremor. I've bee lucky in that, over the years, my symptoms have been very well controlled. There is very little I can't do that I could before. I did give up skiing a few years ago. ☹️. Here are a few observations that might be helpful. As I developed various symptoms over the years, my neurologist adds medications to my regimen, rather than just increasing doses. A while back, I developed an achy pain in my left hamstring (back of the thigh). It was eliminated by one of the drugs ( I don't remember which.) I'm currently on levodopa, rasagiline, ropinerol and amantidine. They all do different things in the nerve transmission process and compliment each other. We have a tendency to unconsciously tighten our neck/shoulder muscles. When walking, try focusing on keeping the shoulder loose rather than the swinging and take long rhythmic steps. You might find that the momentum of the steps is enough to get the shoulder swinging naturally. Be careful about attributing every symptom you get on PD,. You could have other things going on at the same time. Try to get into a PD specific exercise program. My experience is that it helps with balance,,brain to muscle coordination and multitasking among other things. When comparing yourself to others, remember that PD is not consistent and impacts us uniquely. I hope this has been of some value I
  3. 3 points
    I know what you mean! For the most part, I have a good attitude, but I have fleeting moments of bad attitude. When someone says they're tired, I think to myself, "You have no idea what tired is; you're not tired!" When a coworker mentions not wanting to work or wanting to retire, I might say, "I wish I could handle more," or "Be careful what you wish for." Somebody complains about minor aches/pain, and I think to myself, "Try having Parkinson's Disease!" Fortunately, I tend to remember very quickly that there are plenty of people (not just pwp's) out there who have it worse than I do, and I stop feeling sorry for myself. It's often about perception. Nobody besides other Parkies know the tremendous effort involved with the mundane - things that most people take for granted. My husband is very supportive, but on occasion he says something that makes me realize he doesn't completely get it. I do my best to help him understand. These forums are nice because you don't have to explain yourself.
  4. 3 points
    You guys are all awesome. Thank you for being kind. It is comforting to express my feelings and know that I am understood. I live in a retirement community and thought about the other residents who are down, sad and lonely. I asked the administrator if I could start the "Lean On Me Club". Some of you may remember the Bill Withers song, with the lyrics "Lean on me when you are not strong and I'll be your friend and help you carry on." I came up with a list of 10 ways that we can help or be supportive of each other. It may be challenging tp implement, but it will give me something to focus on besides or rather, instead of PD.
  5. 2 points
    Wow, there are so many points I want to make here that I'm not sure where to begin or how to organize them! I apologize in advance if it seems like I'm rambling, and for the record: no, I am not high, lol. First of all, even with the usual, completely legal meds, many people still have off times & days where meds just don't work as well, even when taken optimally. That is the nature of the PD beast. Why should MJ be any different? Secondly, anybody who expects MJ (or any other med) to be a cure-all is a damn fool. Such a creature doesn't exist. I consider MJ to be adjunct therapy. I'm sure dispensary workers are quite knowledgeable, but if you'd like to learn about strains, download the Leafly app. In Florida, there are certain doctors that are credentialed to make recommendations for patients, enabling them to obtain their medical MJ cards. Prescriptions for any form of MJ are nonexistent because it"s a schedule 1 drug, and therefore federally illegal to prescribe. One of my support group friends invited her MJ doc as a guest speaker. He also explained that using just one component (ie: cbd or cbn) is akin to trying to play a melody on a piano with just one key. It's not nearly as effective. As for my experiences, I prefer edibles, but I will smoke it. Wax is much harsher, so I prefer the flower. Gummies are best if they're sour; disguises that earthy taste better than other flavors. Oil-infused butter is good for baking; cookies & chocolate cake are my favorites. Stems can be steeped in hot water to make tea, but it takes quite a bit of cinnamon & vanilla to hide the earthy taste. With a sativa, I am mostly pain free & fairly energetic. With an indica, I typically sleep better & wake up feeling more rested. My overall best experience was a tea my husband made with purple rhino flower. I don't think I've slept that well in at least 20 years, quite possibly in my entire life! I awoke without any pain or stiffness whatsoever and felt so good & well-rested that for the first few minutes, I actually forgot I had PD! I'm still in the workforce, employed by a major corporation. While drug tests aren't required for employment, it is possible, under certain circumstances, to be tested unexpectedly. Just like my legal compounds, I've decided that the benefit outweighs the risk. Testing positive is grounds for termination, regardless of a state issued medical MJ card, but I suspect that the right attorney could successfully fight it. I never punch the clock under the influence, but I'm not sure I'd still be there at all if I didn't partake regularly. As you said...just wanted to share my experiences, in the hopes that it may help someone else. Good luck in your quest to find your specific magic formula.
  6. 2 points
    Went on an albacore tuna charter out of Westport WA about a month ago. It was an epic trip! 10 guys fishing and all told we put 206 tuna on the deck. 20 per person (the rest for the deck hand). The albacore off Washington average about 20lbs. I canned 100lbs worth, and still had over 30lbs of fillets for sushi, grilling, etc.
  7. 2 points
    Hey saleslady you said boyfriend then husband. At least get that straightened out before you start your sales pitch.
  8. 2 points
    Dear Pathfinder, You are in my thoughts and prayers during this time of transition. May you be surrounded by supportive, loving people and have all the support you need. Dianne
  9. 2 points
    Welcome to the club, Adreamer. Pain with Parkinson's is real for me, and my Movement Disorder Specialists. Sinemet (Carbidopa-Levodopa) works wonders to relieve a big chunk of my pain. No, it's not a miracle drug that takes away 100 percent of the pain or that fixes everything Parkinson's messes up, but it generally allows me to do nothing in comfort. For a limited time. And for me, that is a massively huge improvement. Just be patient. It took me and my doctors years to find the most optimal dose amounts, timing, and combination of other medicines and nutritional supplements to somewhat put this Humpty Dumpty back together again. And we're still experimenting and tweaking the alchemy brew. Oh, and yoga and LVST Big physical therapy also help greatly with my pain, even though they too can at times cause pain. But for me, exercises only helped after medications greased up my muscles and allowed them to function. As for the young neurologist who performed your EMG/NCV, even though Parkinson's is a neurological disease and it makes sense that a neurologist should have an understanding of neurological diseases, such isn't the case. From my experience, confirmed during conversations with my Movement Disorder Specialists, Parkinson's isn't taught to medical students or even neurological residents. Thus, unless a neurologist completes a Fellowship in Movement Disorders and becomes a Movement Disorder Specialist, the general neurologists is truly blind to the full extent of Parkinson's. So, like LAD mentioned, if you haven't already so, find yourself a good Movement Disorder Specialist. Their help is worth every penny. Cheers.
  10. 2 points
    New column https://parkinsonsnewstoday.com/2019/09/05/journal-symptoms-health-advocacy-doctors-appointments/
  11. 2 points
    I want to shout, GO AWAY, HURRICANE DORIAN." I am praying for everyone in the path of this monster storm. I hope all my friends from this forum stay safe. Run, my friends, run away from this one. Remember to have at least a two-week supply of meds on hand. Pick-up or have Dr. fax a written script, just in case you have to use a different pharmacy. God bless us all. I put this part on my profile, but I think it should have been typed here. Because of all the water coming with Hurricane Dorian: Why couldn't they play a game of cards in the Ark? Because Noah stood on the deck! Hee! Hee! Hee! I crack myself up. 2 minutes ago Edit Options
  12. 2 points
    Hope August was good to everyone. Worked for a week, then a nice long road trip. 5400 miles on the van, staying with family and friends as we made it from California, Washington State (Olympic National Forest), then over to Glacier National Park, down to Yellowstone & Grand Tetons then back to Texas (too hot to camp in Texas). I managed to get in some intense exercise days. Thankfully the dispensary in California had my wonderful sleep aid, gummys. I found the THC:CBD 25:100 to work nicely for sleep. That is the total dose of 10 gummys, so just one or two per nighttime to help let me sleep. Better nights sleep, the more I can do next day. Sadly only legal in CA, OR, WA so I was out by the time I hit Idaho and Montana. I did a nice intense hike with my son in Glacier National Park. 8 mile hike, lots of elevation changes, so that was four hours of intense hiking. I over did it and coming back off the trail hit the wall and starting "freezing". Couldn't get my legs to move like they should. Stopped for a 1/2 hour, took meds early, and still barely got back down on the trail. Irony is I had bought a hydration pack, so plenty of water but I should have bought hiking sticks to help with downhill sections. Last weeks appt with MDS I got a sample pack for Inbrijia (inhaled levodopa) to help when I am out doing intense activity and have these moments. I'm still doing the swim-bike=run but have some longer bike rides (65 miler) coming up, hence wanting that "just in case" medication with me. Hiking in Glacier National Forest. That bridge was about 40 feet in length, nice drop to the water and no hand rail. Oh I just stared at the center portion and took it slow!
  13. 2 points
    I'm sorry to hear that, Miracleseeker. I think you're right about not giving her junk food, if she's got an intestinal problem making her intestine's microbiote even poorer doesn't sound like a good idea. I can't give you any further advice, only that you make sure she's not suffering from malnutrition and her weight loss is not due to a different problem. From my end, I got a call from my MDS today regarding my weight loss (I'd previously called the nurse last week) and he told me to get a full blood check by my GP. So this is what I'm going to do. He did not sound alarmed and actually told me he thought it was a punctual weight loss that would be balanced soon, but just in case we'll be checking there isn't anything else. Thanks for reading.
  14. 2 points
    The Parkinson's that we have does stop all the other non-parkinson's issues. But we all know the big P makes the non-ps worse. The hardest think in my case is just taking the others medicines. So Curious you have a right to vent. No sleep at night makes for a long day ahead of the fog, that going to do something and finding out you've done it already. OR that you know you put it away? What day is it. Then you sit in a chair and 1 hour later your shoulder wakes you up in pain. My wife still works and when she is gone I have no motivation. So I Just don't know how you can smile 24/7. The other side of us with Parkinson's is that we must push on with life. There are others that have it worse. Have you noticed that many times on your worst days those are the times someone needs your help. It might be a little thing like drive them to the parts store to buy a new battery for their car, watch a neighbors child so they can make an appointment, or something. We are important. tom
  15. 2 points
    I was diagnosed 8 years ago, but this is the first year that the PD has really become annoying. I was just thinking the other day that I just wish this would go away. Even my highly educated and well-trained MDS cannot understand what's it like to constantly be searching for that medication "sweet-spot" - where you have enough levodopa to control the symptoms within reason, but not so much that you are walking around with brain fog and feeling constant fatigue. I get so tired of just being tired all of the time. And then there is the sciatica, carpal tunnel, back spasms, foot and leg dystonia, constipation, hemorrhoids, and all of the other symptoms that the doctors want to ignore because they are more worried about your tremor. It can be absolutely maddening. That's the nice thing about this forum - there are always people here who understand exactly what you're going through. It takes a Parkie to know a Parkie. Kevin
  16. 2 points
    I would say to keep active and engaged in life. Work may do that, but not everyone needs to work for that to happen. Honestly, I go to work in part to get a break from the weekend. I usually work so hard over the weekend I'm pretty exhausted by Sunday night. If I retired on disability insurance right now I don't think I'd have any issues with boredom or lack of engagement.
  17. 2 points
    DMV, I am so sorry to hear that you have health issues more serious than Parkinson’s disease. I hope those issues will resolve quickly, without complications or much difficulty. I strongly urge you not to ignore the Parkinson’s disease while you are dealing with the other issues. I recommend that you get a notebook and keep a written log of PD related events or any health issues that seem out of the ordinary. You think you will remember details at a later date, but believe me, you will not remember. Keep your notebook as you feel is appropriate but I will give you a few suggestions. Record date, time, and the length of event. If you have any freezing of the hands or feet record that. Dizziness, loss of balance, FALLS, weakness, drooling, profusely sweating, intense, violent dreams, sleep disorder, and auditory and visual disturbances . All of these kind of things recorded in your book, when you finally do go see a neurologist or a movement disorder specialist,you will be prepared with a timeline that can help them decide how to treat you best. Good luck. I will pray for you today I hope everything turns out well.
  18. 1 point
    Hi everyone, I'm sorry I have not been able to get to your posts in a timely manner but will do my best to catch up this week. I had back surgery Thursday and am still recovering. I appreciate your patience, Mark
  19. 1 point
    Good to hear from you, jb, as always. It's been raining again here in Seattle. Some folks are glad; others think we were cheated out of summer. I find the longer I have this disease, the less I care about sharing my opinion on pretty much anything. It takes too much energy. I just want peace and quiet with gratitude for the millions of little miracles that happen every day to keep my body moving and my spirit serene. I have one big change coming up. I will be moving out of my apartment in Seattle to a home in Marysville, WA. I will be sharing expenses with a friend from church who purchased a house and needs a roommate to make ends meet. Wish us luck! Dianne
  20. 1 point
    Hello everyone, Hope you are as well as you can be......nope, I will let you guys fill that in, not just feel as good as you can. Or feel as good as allowed by anyone, or as good as this old body of mine can be,. Nope, I want everyone here to feel as good as you want to. Go surfing in Hawaii, hang glide in the Rocky Mountains, dance the night away with your wife, .Maybe you will go and explore the castles of Scotland, watch the whales off the coast of Newfoundland, or even go for a huge walk like Tom just did. Go for it everyone, and keep on keeping on. (I just read that back to myself and I gotta have a rest before my dinner now.) Take care you all. jb
  21. 1 point
  22. 1 point
    Oh yes...severe, constant shoulder & neck pain is what eventually led to my diagnosis. I also had mild, intermittent lower back pain. My feet were painful for many years prior to that. All of it virtually vanished when I started pramipexole & neupro. The pharmacy printouts scared the shit out of me, but I was SOOO desperately miserable. I decided the benefits far outweighed the risks. When I started selegiline & rytary a year later, more terrifying reading. But again, you don't know until you try, so I took the chance. Ultimately, it's your decision; just make sure you are well-informed. And remember that tomorrow is not promised to anyone; all we really have is today.
  23. 1 point
    Any exercise is better than no exercise at all, but reputable sources indicate that high intensity exercise is best. In other words, you need to push yourself & break a sweat. This seems to be true for me. I started out with Tai Chi, which I enjoyed. I felt that it helped me with balance & general body awareness; but eventually, I felt I needed more. Then I heard about Rock Steady Boxing, and decided to give it a try. I love everything about it! RSB makes you sweat, works your brain, strengthens your voice, improves your balance, tests your limits...all with a sense of community. Bonus: people are frequently tell me how good I look or ask me if I've lost weight. I tell them, "Thanks! No, I haven't; must be the boxing!" RSB may not be for everyone, but I think everyone should consider/try it. My newest coach says I'm "a natural." I'd never worn a pair of gloves until 3 years ago.
  24. 1 point
    https://ladpdjourney2.wordpress.com/2019/09/17/the-empty-nest/ new post LAD
  25. 1 point
    Today I had my off-meds physical evaluation and was supposed to be off Sinemet for 24 hours. I managed to be off for 11 hours (with prior doctor approval) and even that was pure hell. The last 3 hours were filled with severe cramping in my right leg, tremor and rigidity on the left, 3 panic attacks (I am not usually prone to panic attacks ) on the 1.5 hour drive to Nashville, feeling like I couldn’t breathe along with constant pain. Thankfully the testing only took 30 minutes and my meds started kicking in within 45 minutes. Has anyone else had a similar off-med experience ? I hate to think what I would be like with a stomach bug. Tomorrow is the neuro-psych eval, plus the on meds physical testing. I hope DBS is worth it!
  26. 1 point
    I can impart some wicked action to my lures thanks to the tremor. It's supposed to look like a wounded bait fish - and it certainly does! I told my brother the other day that PD gives me an unfair advantage over him when we're fishing together. 😂 Kevin
  27. 1 point
    Find a hobby you can refocus the compulsion into. I had similar urges while on DA. Requip and Mirapex. I started wrenching on cars and boats. It shifted the urges to something productive.
  28. 1 point
    Looking forward to winter, hoping the tremor makes it easier to jig ice-fishing here.
  29. 1 point
    Hi all, I have not posted for awhile yet I continue to read most of the posts to educate myself. Time flies … all two kids are in high school. They still don't know mom has PD. Yes, I just passed 4 years heading to year 5 on this journey. I am still doing fine...doing the same things in the same way prior the dx.... just observed a little more clumsy in my left hand and intermittent on/off cramp to left leg... Cramp is manageable with taking Lyrica low dosage of 50mg daily as 4 yrs ago. I hope I don't need medication at least to 50 y-o. I will continue to see my MDS every 6 months. Three things that truly help with my journey 1) exercise 1hr x5days a week 2) at least 7hrs good sleep daily 3) keeping myself busy with fulltime job, doing all kind of chores until bedtime Best to all recently dx PD members , PinkDaisy.
  30. 1 point
    Thank you, LAD and jb for the prayers. My sister and I both appreciate them. Hello, Em in Ireland. Texas Tom, you came to Washington? How awesome! Next time, come to Seattle and say hello. John in Virginia, I don't believe we've met. Hi! I'll be seeing the pain management doctor on Tuesday to discuss the possibility of a Spinal Cord Stimulator implant to lessen the pain from dystonia. Sounds good to me. Mark the Pharmacist has one and recommended it. Love and hope to all, Dianne
  31. 1 point
    Texas Tom, looks like a beautiful hike. Let us know how the Inbrijia works; I've heard from a few people who like it, but whose insurance won't cover it (not sure how expensive it is out of pocket).
  32. 1 point
    Em, glad to hear from you! Texas Tom, cowabunga! That’s a lot of exercise! Is it helping to lessen med amounts? I read it does but would like to know first hand. Two doctors told me to walk.
  33. 1 point
    QFT. The best exercise is something you will actually do consistently. Once you are at that point then looking at something specific for PD makes some sense.
  34. 1 point
    I walk a minimum of 12,000 steps a day and do karate (Shotokan). Just keep moving!
  35. 1 point
    Absolutely! Finding the right dose/meds is like winning the lottery. It happens to just a handful of lucky folks.
  36. 1 point
    I just started Sinemet, but the Doctor only prescribed 25/100 twice a day. I've read on the Forum that under-dosing at first is standard. After 2 days of medication, I hope I can feel the difference; tremor is the same but some of the stiffness and soreness seems to be better. I'll give it 3 months but may insist on an increase in the frequency of dosage at the 3-month followup visit. Secret Squirrel, I really enjoyed your post, especially about remaining aware that others have it much worse. When I fall into an occasional bout of self pity, I think of my 3 year old grandson. Birth complications resulted in a condition like cerebral palsy. The little fellow suffers thru pain without a whimper. He is my hero. So many things are so difficult for him, but he fights on and accomplishes stuff. Immediately when I think of his struggle, I am able to shed my self-pity. Both he and I are going to make it to where we make it, enjoying the gift of living large.
  37. 1 point
    Southern Girl, First thing I want to say is, I think you are awesome. I have been divorced for 38 years. I quit dating 11 years ago because I did not want to inflict myself, or rather my health issues on anyone. Sometimes, even with people around, I feel very much alone. Last night at dinner, I mentioned Parkinson's disease and my uncle replied, "Yeah, but I don't want to hear about it." I have been told by a neurologist that it is quite common for PD patients to focus on their disease. Perhaps you can give him a small notebook and pen that he can write down all his thoughts. Allow him 15 minutes every two hours to speak and discuss PD. Or whatever time limits that work for you. He gets to express himself and you get some peace. Win-Win.
  38. 1 point
    MDS docs have a smell test. It's like scratch and sniff from (at least my) childhood. Loss of smell has a severity scale. I scored a perfect 0. My MDS said she'd only run across a small handful that literally had 0 sense of smell. So, I'm proud that I'm excelling in some areas.....
  39. 1 point
    Hello Linda and all other people who may happen to look here. I sorta had a busy week so I never got posting anything. One may think that I must of accomplished many great things but I didn't. Merely carried on. Hope you all had a good week. jb
  40. 1 point
    Tom, im so thankful my vivid dreams and sleep problems are intermittent and are controlled with L-dopa and exercise. I totally understand what you’re going through. One of the best parts of life is waking up and holding Mrs Supes. I’d feel pretty upset if I had to sleep in a room with no furniture by myself. John, I’m glad that exercise, meds and maintaining a positive attitude seems to be working for you. If thinking works to control your attitude about living with PD, then more power to you. Enjoy your picnic today. Thanks.
  41. 1 point
    So Curious, I know how you feel. Not being able to sleep is awful. And you have my sympathy. What works best for me is to get up ,after 15 minutes of unsuccessful attempt at falling asleep, and keep doing whatever activity i was engaged in previously. I do as if everything is ok and try another attempt whenever I fell I might fall asleep. If i feel sleepy at 2 am, well it's ok. I try not to be obsessed by this question of sleep. Easier said than done, you might comment. All the more so as I'm retired now so I don't have to worry about being in shape the next day to go to work. It is so sad that you don't have an understanding shoulder to lean on. But you have us, a group of parkies who know exactly what you are experiencing. It is priceless. Think about the times long before the Internet : I was diagnosed in April 1987 and had to deal with the diagnosis and the first few years of Parkinson's all alone. That was even more difficult for everyone. Big hugs, Mireille
  42. 1 point
    Estimados usuarios, En este segmento quisiera hablar un poco de la importancia de evitar la deshidratación en los pacientes con la enfermedad de Parkinson. Este tema es aún más importante en el verano, ya que las temperaturas son más elevadas y la gente pasa más tiempo afuera. La enfermedad de Parkinson afecta el sistema nervioso encargado de controlar las respuestas automáticas del cuerpo como el control de la presión arterial. Los pacientes con la EP tienden a tener la presión baja después de levantarse de la silla lo que puede causar mareos o desmayos. Además, las medicinas que utilizamos para tratar la enfermedad tienden a causar una baja de la presión arterial complicando el problema. Finalmente, el reflejo de la sed disminuye con la edad y la enfermedad lo que hace que los pacientes no tengan sed. Todo esto se combina para poder causar problemas al caminar o levantarse de la silla o la cama. La deshidratación puede hacer que los pacientes se sientan cansados, confundidos, desorientados, con fatigue o dolor de cabeza e incluso causar desmayos. Les recomiendo que tenga una cantidad de agua predeterminada para tomar cada vez que tome alimentos o pastillas. Es muy importante establecer un sistema para asegurarse que se consume la cantidad adecuada de líquidos durante el día. Saludos
  43. 1 point
    Hello Sherry, I think that we have not posted together before, have we? Nice to meet you. Hi to Dianne, LADy., Miracle Seeker and Linda, who I hope is reading along with us all on this Big old Bus trip called Life. Thanks for all your input. I had an old friend stop in for a visit recently. I explained, not complained. about how the Rheumatoid Arthritis was really affecting my activity more than the parkinsons was at this point in the bustrip. I ended up my list of problems with a "sorry, I don't mean to complain, I know that everyone has some kind of problem." She said that is OK, that I did have a disease that could be complained about, and that it was a real thing and I had every right to sound off about it. Which helps my frame of mind somewhat. Sherry, my tagline tells others not to be hard on myself, thanks for reminding myself of that. MiracleSeeker, 51 years is a wonderful marker of time spent with your husband, congratulations The bus trip of Life. I went to a country school until grade 7 when we started getting bussed into town (a village of 1200 souls and 1 hockey arena, baseball diamond. 6 churches, 4 barbers and a grocery store, feed mill and a police force of one) and life was exciting. One thing we always had at both schools was at the end of the school year was the annual bustrip. Looking back, we must of looked like a bunch of country hayseeds off to points unknown to us.....Toronto and its sights, Midland and a rebuilt Huron Native village, The Thousand Island cruise. Even just buying a supper meal, lunch was your carried on brown paper bagged up PB sandwich, as you headed home at some nondescript truckstop was fun to us country kids. Maybe one day I could find a bus, a nice highway coach, and I will drive around picking up any Parky needing a breakaway. We could stop at Echo Beach for a swim and cooldown, visit Toronto, watch a couple ballgames in New York, tour Washington dc, see St.Louis etc, and of course hit the west coast and walk among the giant cedar trees. Bring PB sandwiches for lunch, we can find a good place for suppertime dinner. All Aboard.. Yep, still crazy I am. Be safe and happy you'all. jb
  44. 1 point
    Hi... I'm a young onset...have had the disease for 18 years. I was diagnosed at 33, almost 51 now. Been the medication route, the pump route, and had DBS just last year. You can live a long, productive life with PD. There are numerous good treatment options. Read on the forum (much good information), exercise, and adapt, adapt, adapt. As PD takes things from you, find a new way to do that same thing. It's rather quite fun to try new ways of accomplishing something that PD won't let you do in the "traditional" way. It's good for a laugh here and there too. You'll find humor to be a good friend in the coming months and years! All the best to you on this journey, Mihai (Michael)
  45. 1 point
    Everything is a risk, knowing the risk, accepting or declining the risk, is what has to be done. I couldn't deal with my wife's personality with the side effects of the medication she was on. DBS worked beautifully. Now it has reached its limits and symptoms are showing up again. Her personality requires something to do and now with her hardly able to work and the kids essentially out of the house she is driving me crazy at times. I don't think it is due to the DBS, just disease progression. Another guy in town couldn't tolerate any of the meds for PD and DBS worked wonders for him, but his symptoms are coming back now five years later. I know another guy, who woke up from surgery and couldn't walk or talk. Another guy has had infection every time they did surgery. We have met others with DBS that have done well. Deciding what is the best for each individual is up to them and people involved with them. I heard it quoted at one time that there was a 2% risk of dying of stroke due to the surgery, yet one out of ten thousand dies from a routine surgery that there shouldn't be any complications from. There is always a risk, the question is, can I tolerate the risk. Is my life likely to be substantially better and if it is worse, can I deal with that. It is the same with almost every decision in life, not doing anything is making a decision. In our situation, I knew things were not going to be good if no surgery was done, if the surgery worked then life could be better, if it didn't work then we tried and I knew there was nothing more to be done. Asking doctors about the risks and percentages of the risks is something that should be done. Asking about DBS in general was well as for their patients is part of the process. Can you tolerate living like you are or something unknown that might be worse if something goes wrong? I wish it had been done years earlier, but I was the one hesitant to have the surgery done. My two cents worth. Coach T
  46. 1 point
    I remember calling my mother in England the day of my Dx to ask if there was any history of PD in our family. One would have thought I'd asked her if there were a history of pedophilia in the family. "Certainly not," she insisted, "high cheekbones and good teeth come through our family line, not... well, not that--it must have come from your Fathers side!" Fast forward two years and my mother was visiting her sister, who took her on a little trip around their childhood stomping grounds. At one location, my (now late) Aunt looked at my mother and asked, "Do you remember Aunty Shaky? She lived in that house over there. Couldn't pour a cup of tea without spilling it everywhere because she shook so much!" My mother called me that day in tears. Once reminded, she did indeed remember Aunty Shaky and I think my mother felt, somehow, responsible for my PD because of her family history of it. What I find fascinating, is the number of people who are diagnosed with PD who have a family history of Schizophrenia and MS. In my case, it was my father who had Schizophrenia and his sister, MS. A Parky friend of mine, his mother had Schizophrenia. This is a bit of an odd post! Just thinking aloud, I guess. Keep us up to date on your journey Somazzy, I'd like to know what shakes loose. Regards, Kim
  47. 1 point
    I don't know about the AB Normal situation on the CG forum...just what I have read here. I do know that I got into kinda personal attacks with a different guy on this forum whom I really detest, but realized that there's no reason to drag the rest of the forum down into the gutters with him and I, so I am choosing to just ignore the person. I hope when my condition gets really bad, like theirs, that I don't "vent" here with the innocents, poking at wounds and belittling other's sentiments. I have found that you seldom get attacked unless you provoke the beast, so I am gonna try to be the better person.
  48. 1 point
    Thank you KimAgain for your compassion for all. I think everyone deserves compassion and respect. It's so hard in a forum to give information detailed enough to have everyone have the facts and not be so long that no one could read it or keep up. And the longer it goes on the info gets distorted and turned in another direction. I'll keep chiming in with updates because (I started this post) I know that there are other women in my position experiencing many of the same frustrations in the healthcare system and I hope from my experience they are helped. If you are experiencing what you think is a misinterpretation of a psychological evaluation, reading about my experience with this may help you know how to work with the system and advocate for yourself with facts. Here is the history of this. I have NOT been diagnosed with psychogenic tremor. I asked for a neuropsychological test to be done because I have always been a very smart, organized, efficient woman, and along with my physical decline, in the last 6 months I'd been experiencing undeniable episodes of memory lapse, difficulty making decisions, and confusion. The episodes were always brief but got to the point that I could't dismiss them any longer. One example, I pulled out a pair of jeans I've owned for 6 years and for about one minute, I did not recognize them and was trying to figure out how a pair of my mothers jeans would have ended up in my drawer. I then realized after about a minute that "oh its that thing happening again." Another time I put a snack for my kids in the microwave. And when it dinged I asked my oldest what he had put in the microwave and after a few seconds gave myself that kick "arg! you did! what the heck is up with your head these days!" I work in mental health so I knew I did not have any diagnosable cognitive dysfunction as it is mild, but I also knew that it is a marked decrease that has occurred over the last year and especially the last 6 months for me. So I knew I needed to get it checked out to find out exactly how much dysfunction it was in an objective fashion. (sorry this will be longer than I planned but I think you need to understand the history here.) So the neuropsyc testing was done, I did indeed have mild delinquent functioning on some memory and attention tasks especially as it related to doing things quickly. It is out of alignment with what should be expected for my age and intellectual functioning. The Psychologist has the choice to choose which tests and questionnaires to give a certain patient. So in addition to some cognitive functioning tests she chose to also give me a PAI (Personality Assessment Inventory). I did not score in the clinically significant range on any of the subscales. So this means this questionnaire did not prove me to be a narcissist, gambler, sociopath, histrionic, on and on (about 22 different subscales are measured in over 340 questions that you rate on a scale of 1-5 whether it describes you.) Physiological depression symptoms and conversion symptoms are measured in this questionnaire as well. If anyone has had this test done you really need to understand this. The final report is written with BOTH objective report of the data and ALSO the testers subjective opinion on what they believe might be going on. Please know that the tester spends only 10 minutes in open conversation gathering history from the patient then the rest of the 2.5 hours is strict testing procedure without informal interaction. When I finally read the actual report very closely I realized that the PAI did not show anything in the data. However, she chose to highlight that I had a moderate report of somatic symptoms. But again NOT clinically significant enough to make it anymore revealing than that I have a lot of health related complaints far more than you coudl describe me as a person that shows risky behavior like gambling away all my money. Unfortunately my neurologist sees the word "Somatic" and thus basically stops all of her treatment. And the MDS, based on my neurologists opinion follows suit. Neither one of them did a thorough physical evaluation of my tremor which is a new symptom that has only emerged in the last two months. So I am going back to the original psychologist who did the testing and asking her to revise the document that more clearly states objective information rather than her subjective clinical opinion and will explain to her the damage it has done in the neurologists view of my case. I will give her the opportunity to respond appropriately and if she does not I will take the issue to her supervisor until it is addressed. I do, though, think that she will have no problem amending it because she actually did not state that she thought that my tremor was psychogenic in the report. What her report implied was that in her opinion perhaps my memory lapses were due to stress related issues since they were mild in nature. And since the report was 5 pages long and very small type I know that my neurologist had no time to read all of that and this has all been a misunderstanding. And I am taking the appropriate steps to have it resolved.
  49. 1 point
    I have never disagreed with a single word you have posted Christie, but on this, I must. "...remember we've been where you are now..." I would say is, at best, inaccurate, at worst, unfair. We are, all of us, different. We all experience illness, disease, frustration, disappointment--well, life differently. "Worse" or "better" than someone else is all a matter of personal perception, not empirical fact. So, if someone has a head cold and they feel as bad as they have ever felt in their lives before, who are we to tell them to get a grip and consider themselves lucky they don't have Parkinson's? To say such things is to invalidate the feelings, perceptions, and opinions of other people. Bad form, in my opinion, very bad form. Why? Because this very reaction is, simply put, judgmental in nature. The minute we start judging the feelings of other people in this Forum (or, anywhere else, for that matter), we are strutting down a shady pathway indeed. Keep up the fight, Somazzy. Scream all you need to! K
  50. 1 point
    lets just say, that I'll try not to let my grey stuff leak out...... drip drip drip................slosh slosh.....
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