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  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: https://clinicaltrials.gov/ct2/show/NCT02459886 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
  3. 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
  4. 6 likes
    this a few days ago and lost it three times. It just reappeared today. It's a beautiful day in my neighborhood, too. Mister Rogers was my daughter Lillian's favorite program when she was young. I love your description of the magic of gardens growing, jb. As part of a workshop that I attended 30 years ago, I was asked to fold a large piece of white paper into thirds and draw a picture of my past, present, and future on each of the panels. I drew my past showing a very hard-shelled seed with all the colors of the rainbow inside it under snow covered ground, surrounded by creepy insects. The present showed a small sapling with a few branches and leaves. I depicted my future as a full grown tree with flowers of many colors. It has all come true. From a frightened child in a hostile environment to a small but earnest sapling, to a mature tree in full and glorious bloom, I have and will continue to realize my full potential. This has come about not in spite of PD but because having PD has forced me to nurture myself or be miserable.
  5. 5 likes
    Good morning...nothing better then a sunset at the beach! Have a good day everyone ! ps...jb... The "boy" I taught to tango was my fellow Parkinson wellness recovery classmate...I have two of them and they are 70+ years old but we call them the "boys" LAD
  6. 5 likes
    Wow Luke you are very upset. I support Miracle because of the ongoing support she has given me through the years, I won't apologize for that. I don't think pitting people against each other in your dis take with Miracle is appropriate. I will support you as quickly when it's earned. We all need to understand that we're all at different stages, different head spaces and different approaches on this insidious decease. Chill out. We need all our energy to battle Parkinson's not each other. D
  7. 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.
  8. 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
  9. 4 likes
    loveya1971, The first thing to do is take a deep breath. Absolutely nothing has changed simply because you were diagnosed with PD. You are no worse off the day after you were diagnosed than you were before being diagnosed. Were you crying and feeling lost in the months and years before being diagnosed? The latest thinking is that people likely have PD for 20 years before being diagnosed. You've likely had PD for 2 decades and didn't even know it. Nothing has changed, you still have PD. Next, realize that you can and should get BETTER! That's right, better! Now that you know you have PD, you can start treatment. No, I'm not talking about taking any of the dangerous PD drugs that are often worse than the disease itself. I'm talking about EXERCISE, which is the only thing shown to slow the progression of PD. Furthermore, starting a PD exercise program should improve your symptoms and help you to feel better than you have in years. When I was first diagnosed with PD, I walked like a 90 year old man. I had to hold both rails to walk down the stairs in the morning. Daily exercise fixed that. I now walk a MINIMUM of 12,000 steps a day (about 5 1/2 miles) and usually walk a lot more than that. Last week, I had two days that I hit 30,000 steps. When you are diagnosed with PD, you have a choice. You can sit in the corner and cry; go get a handicap sticker; buy a walker; and decide that your life is over. OR, you can decide to take your life in your own hands and fight!!! You can start a PD exercise program; eat healthy; maintain a positive attitude; and live your life normally. The choice is YOURS!
  10. 4 likes
    Advice? Have as much fun while you can, and don't fret. Key thought? "You will NEVER feel better than you do today"....so, anything you want to do: travel, sports, work, love, etc, do now. Yeah, maybe they will cure it in 10 years. We can all hope. But in the mean time, live for today. I am having more fun NOW than I did 20 years ago. I am a little worse today, than this time last year. And last year I was a little worse than the year before. Don't let time sneak past you. Go out and have fun.
  11. 4 likes
    Good Morning Everyone, And special good morning to Ella. Pretty quiet on the board today isn't it. Maybe everyone had too many hotdogs on Memorial Day. Good Advice you gave me yesterday Ella. I decided what the heck as I got out of bed this morning and began "The Trudging" around the house for the regular eye opening, muscle stretching, bladder relieving, TV tuning, pill popping, cereal slurping, coffee making, bread toasting, followed by laptop reading and then the dog is on my lap for some sports report watching and then we maybe even do a little bit of eye shut napping. That is the usual routine. Back to your advice, I don't have to follow the old routine, I can make my own decisions. I have no boss, so today, I went crazy and instead of oatmeal porridge I went to my cookie jar and grabbed 2 chocolate chip, and 3 Oatmeal with chocolate chips, raisins and coconut cookies and they tasted good. I don't usually eat cookies before breakfast, but today I am a Rebel. Have a great day Ella, and Everyone else too. jb
  12. 4 likes
    Be afraid, very afraid . . . la-fi-hiltzik-trump-disabled-20170522-story.html Hope NPF and others come out with strong positions on this one. SS Disability is a benefit we pay for through our payroll taxes and a lifesaver for many with Parkinson's disease and other debilitating conditions. "Disability insurance is an inextricable part of Social Security. It’s a core part of the program, just like retirement benefits. It was created as an add-on to Social Security in 1956, under President Eisenhower. It’s financed by the payroll tax, and the reserve funds that cover both aspects of the program are more entwined than ever, thanks to a reform measure passed by Congress in 2015."
  13. 4 likes
    Actually, a pretty good post, IMO. I could have written it myself. I was extremely angered when my wife kept mentioning how her social life has been ruined by my lack of interest in what we used to enjoy together. I didn't ask for the change in out social priorities, and I certainly don't like it; but I considered it a guilt trip on her part. Was I being selfish? Maybe, but marriage is a two-way street. I need to understand her concerns; but she needs to understand that my mind is now different than before. I'm actually appalled by some of the responses here. I don't think you're a moron, and I don't think that you have to be "nicer to her" so she doesn't bail on you. You are reacting to negative cues like any other normal person would. Talk it out; do research together; and find common ground, if possible. If she doesn't attend all of your Dr appointments; bring her along and talk to the Doc! I think my wife and I finally worked through it, but it took a while. Hopefully, you can as well Thanks for posting!
  14. 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.
  15. 3 likes
    Without any attempt to start a thread I post a periodic Bible verse that may be the source of some strength, comfort, or inspiration to my fellow "Parkies" in the best or worst of times as we deal with our challenges. Feel free to add a verse if you wish for those so inclined on this topic. It would be helpful if you mention what bible translation your verse is from if you do post. Have a great week. Romans 8:35-39 (KJV) Paul to the church at Rome Who shall separate us from the love of Christ? shall tribulation, or distress, or persecution, or famine, or nakedness, or peril, or sword? As it is written, For thy sake we are killed all the day long; we are counted as sheep for the slaughter. Nay, in all these things we are more than conquerors through him that loved us. For I am persuaded, that neither death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come, nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord.
  16. 3 likes
    Crazy me in my Parkinson wellness recovery class! not very Ginger Rogers but I didn't fall on my butt!
  17. 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.
  18. 3 likes
    Road trip, Great fun. Dianne, we will spring you loose, you fly into Toronto, we swing down through the the North Eastern states, get Linda, get some ice cream sundaes, find Ginger and Fred, Emma can fly into Washington DC, we will meet her, I will drop the car there and hotwire a school bus, off to the midwest. Parkys on the Loose, the headlines read, state troopers and roadblocks, the public yells, cheers and banners read "Do all Parkinson People Have this Much Fun". We scoot round by Atlanta, get the lady with the skinned up knees, 2 other buses join in the Parky Parade. Every day at lunch, we stop, put up our banners and demonstrate to inform the public about toxic chemicals getting into our food chain, the cost of healthcare and the global warming. Our convoy is having some impact and we are shadowed by an army of black cars and men with dark glasses speaking into the cuffs of their white shirts. We arrive in Ohio, its cooler now, because it is October already. Marcia hops on the bus to guide us the rest of the way. FF, the Count, PapaJack, and Ella, the parkys keep coming out of the woodwork to join this trip. Six buses now pull into Pathfinders neighbourhood and Peace follows on horseback. The street is shut down for a block party. A fine time was had by all, Pathfinder is a great cook and host. We all went home after a few days. It was a quieter trip on the way back, each of us with a different bagful of memories and hopes. Take care y'all. jb
  19. 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.
  20. 3 likes
    This is not the end of the world for your husband or for you either. Were you this upset when you didn't know what the diagnosis was? Parkinson's progresses very slowly so you have a lot of good years ahead of you before it gets in your way. By that time there might be better solutions and you'll be used to and prepared for all the different changes. You need to take a step back. The best advice I can give you is for your husband to start a vigorous exercise program as that is the only thing known to slow down the progression of PD. Dave
  21. 3 likes
    Good morning all, welcome back Count, Good to hear from u. I am glad for that Dianne, Congratulations to Sean Emma, that is wonderful he graduated from his course. She Ra, come on up, lots of space for you in Ontario and I am sure you would enjoy the 4 distinct seasons. Sorry bout the dentist, sounds ouchy. Hey Lad, Linda, Miss Ella, etc what do you say we all meet up at Pathfinders backyard for some banana bread and tea.? It will be a surprise for her.. Have good weekends everybody.. jb, stay safe!
  22. 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.
  23. 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
  24. 3 likes
    Great thread! Thanks for starting it. I know the following is referring to possessions but it still makes me stop and think before fretting over the everyday stuff---including my future with PD. Its been posted on my refrigerator long before my diagnoses.
  25. 3 likes
    Good Morning again, Must be the week of post eating computer binges. Who likes a laptop keyboard with attitude anyways. I was just typing a post and Snap! It disappeared like an icecube in a hot cast iron frying pan. Marcia, even if your skin turned green,me and everyone else would still love you. I hope that your rash clears up for you. I am glad that you like cookies. I don't understand people who don't. Oh, I understand why some don't eat them, but Ireally like them. I am glad that the cats help you dust, cause it is our pets that create a lot of the need for dusting. How do you push back the rainstorms, cause we need some pushing back done this weekend on our weather. I hope that you have a good weekend Marcia and your hubby brings you home 2 bags of cookies from the grocery store. And Moms are usually right. I agree with Linda , Dianne, That is a powerful image that I have in my head of you and the paper folded into thirds and the picture it contains. I hope that you are feeling like that strong tree with many beautiful colours these days. Serentity, thanks for the laugh. I bet the painters had a good laugh as well. LAD, that is pretty neat that you taught your son to Tango, or at least started him on it. I'm sure that it wouldn't be accomplished in a single lesson. Where is the Beach? Is it ocean, or lake, river? I like to row around a lake casting for fish. Actually I like to fly fish. I started that about 15 years ago but the little hooks and knots are quickly becoming difficult. I didn't have any cookies for breakfast today. Anyone who guessed it is because I finished them all last night before bed gets a gold star. Pathfinder, I can picture you planting your garden with great care and not without difficulty. I remember not long ago, spreading a strip of carrot seeds down a long row of prepared soil. It is quite different now trying to hold that handful of tiny seeds and twirl them between thumb and fingers to release them into a spaced out tidy line. I hope to get at the garden soon, if the monsoons stop. Have a good weekend everyone. be safe, jb
  26. 3 likes
    Had fun in the sun today with one of our sons, his son, my wife, her sister…..and other family. Lucky day! Finished off by a nice cookout by our son. Feeling very thankful.
  27. 3 likes
    It is not cheap, but well worth it. I've considered many time reducing or even cancelling that policy. Thank God for apathy, or procrastination, or whatever it was that kept me from doing so. Especially when I was unemployed. Could have really used that monthly premium then especially. But by keeping it I have a peace about my situation that I simply wouldn't have otherwise. If I need to pull the ejection handle on my career, so be it. We'll be just fine, financially. The rest of it, not so much. But knowing my family will maintain their home, ability to buy food/clothing/etc, and even have enough left for some relative luxuries, all without having to rely the government is huge. SSDI could go away and we'd still be OK in terms of finances in that case.
  28. 3 likes
    SSDI is difficult for honest, hard working, tax paying people to get. The sponges of society get it with sickening ease. The rates of investigation, let alone conviction, for fraud is pathetically low, unless you are the aforementioned honest, hard working, tax paying citizen. Then an honest and inconsequential mistake is treated like the crime of the century. Is there fraud - oh heck yes there is. To the tune of tens if not hundreds of billions of dollars per year. But as TPTB don't want to admit to that fraud actually quantifying it is next to impossible. Cut 30% of SNAP, or Medicaid, or SSDI, or welfare, or whatever, and if you can identify just some of those that shouldn't be getting it (and by that I mean those who can work but chose not to, or that are outright fraudulent) and kick them off the roles, and I'd bet dollars to donuts you could still leave a significant amount of the fraud in the system and not impact those that legitimately need those programs. Nobody, even the most seemingly (to libs at least) cold-hearted conservative wants to see children, or disabled people, or poor elderly people starve, or become homeless. On the other hand, someone who is an able bodied working age adult and would rather bludge the dole than do even a half assed day of work can starve in the gutter for all I care. I'm all for having people on welfare sweep the streets, clean up parks, dig ditches and then fill them back in, break rocks for no reason at all, or whatever it might be in exchange for said welfare. It should be a trampoline, not a hammock. I'm not making up some mythical sub-class of people here either. I have family members (on the in-law side, but still) that fit that description to a T. For the record, I have no problem with helping those that need it. Kids, those that were left without resources through no real fault of their own, and so on. But, we're all adults here. Before PD struck we were (presumably, mostly) healthy. I bought disability insurance when I could, and I did my homework and made sure it was a good policy. I made sacrifices to pay for it. As it stands, last I checked, I pay about $160/month for that, and if I retire on disability that policy will pay around $7700/month, tax free. It's an "own-oc" policy that will pay as such until I'm 65, with a 90 day elimination period. That policy is called being responsible. I get that not everybody has the means to get the kind of policy I bought and have continued to pay for, but there are cheaper policies that can be had more affordably. Go with 180 day elimination, and cut the benefit to 60% or less of your own pay (and BTW that is A LOT more than 60% of my current income) and that premium will go down commensurately (a $2500/month policy should be well under $50/month if you're still healthy when you get it). Though I would recommend keeping that as an "own-oc to age 65" if you can get it. You do realize that the top 1% of income earners in this country pay around 38% of all individual taxes paid (while earning 19% of all income)? While the occasional billionaire might be able to figure out a way to not pay taxes, the solution to that is to simplify the tax code so there aren't the loopholes anymore that allow for that. Not to hammer the middle and higher class wage earners that already pay heavily ever harder. Billionaires usually do pay very little in "income taxes" because they don't earn a W2 based income. Their income is mostly from capital gains and dividends from stocks. Even so I'd bet they still on average pay a much higher percentage of their income in various taxes than any of us on this forum do. When the media talks about their tax burden they conflate not owning "income" taxes with not paying "any" taxes.
  29. 3 likes
    Hi jb and everyone.. First of all i have to say thanks jb as often i have up and down days as i'm sure some of you may know what i'm talking about... However on my down days there's times i could be browsing through the forum and i come across a post from jb and all of a sudden i feel bit better yes jb you lift my spirits so a huge thank you and take care. em
  30. 3 likes
    My husband has vascular dementia and Parkinsonism. We are fourteen months from diagnosis, our lives have been affected in so many ways. I am his full time caregiver and happy to do anything for him. I am a very social person who has a lot of friends and activities. Hubby can still be alone so l can do some socializing, but we had to adapt quickly when dealing with this new challenge to our lives. I adjust how often l socialize , my friends also know if l cancel at the last moment l am needed at home. I don't resent that l am not as social because he has cared for me with such devotion and would do it for me in a heartbeat if the roles were reversed. Have you tried socializing at home, or one of your favorite places to go? I know hubby has anxiety sometimes, here at home when people drop in he is more comfortable. Maybe talking with your wife and meeting in the middle can give you both a workable solution. l wish you well, this PD is an awful lot to deal with!
  31. 3 likes
    Thanks Manolo ... I owe it all to Mr. Roger's neighborhood ....haha...he was a wise man! It's the 50th anniversary!
  32. 3 likes
    Update,...no fainting😊👍
  33. 3 likes
    Boy, talk about missing the point of the post. Thanks for bringing sunshine to everyone's lives! Telling us we are at a disadvantage and keeping our fingers crossed that our loved ones stick by us?? I have two "care-givers" in my immediate family, and two others in my extended family. I know the drill, but thanks for sharing your opinion. Thank goodness you will never be in my future! I will appreciate my wife, and as such, she should appreciate me for who I have become. We are a team, and hopefully we will stay that way; without having to rely on narcissistic care-givers like yourself. And when you quote my post, please use it in its entirety, so you don't "frame" your opinion. Move along please.... P.S. My apologies to the OP. IM me if you wanna talk further about this topic, as we are in the same boat. Another good subject matter polluted, unfortunately, that needs to be moved offline.
  34. 3 likes
    This past weekend the weather was perfect on Sunday (Mother's Day). My wife went to visit her Mom while I stayed at home to do some chores. First, I had to mow the lawn because that stuff that falls from the sky, rain, makes it grow. It also doesn't help that I put fertilizer down this spring. next up was to continue my task of painting the foundation. My wife's rules of engagement on projects is no ladders without a spotter. Being the typical guy, that surely does not count a step stool (ladder). I managed to do really well on the stool on the uneven grass as I slowly worked on my project. I finally decided to pack up shop for the day. I placed the stool on the patio (flat surface), stood on the top step so I could remove the tape around the gutter that I did not want to paint. I have no idea what happened next as my 198lb body fell to the ground, recording my first Parkinson's fall, as my back rammed into the 8x8 support post for my screened in porch which preceded the rasbury on my left leg and skinned knuckles on my right hand. I laid there on the ground trying to catch my breath which was unexplicably taken away for some reason, thankful that no one witnessed my Humpty Dumpty impersonation. The moral of the story is if your wife says no ladders unless you have help, you should listen. Of course I'm a guy and am invincible. For some reason I think I'm much younger than I actually am. Ahhh, to be twenty one again........ Cheers everyone. Dave
  35. 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
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    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!
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    https://tmrwedition.com/2017/04/30/a-journey-round-my-brain/
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    Meeting up at Pathfinder's backyard for banana bread and iced tea sounds great! Shhhhh.....Don't anyone tell her.
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    Hello Chris, I was monitoring the the Audio Receptors for your sector when I heard your transmission: "Hello out there". ``Roger That and Back at You. Red Dog S/L jb49 here, Chris we are vectored onto your greeting.`` And.. Chris, Hello, glad to meet you. I am John Bush of jb49. I have been pecking away at these pages for a few years now. I welcome your presence on this forum. I hope that you don't mind my Walter Mitty outbursts. They just appear, well, I do guide them onto the page. So what is your Story Chris. There is lots of room to lay it out here if you wish. I live in Ontario, am almost 60 years old and am waiting for my morning Levodopa to kick in and get me moving. I have some errands to run this morning but I hope to get some serious gardening done today while the sun is shining. Have a good weekend Chris. be safe, jb
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    Good Morning I trust that you all had good night sleeps, no restless trudging around the house in wee hours, finally taking more levodopa, eating a muffin and a glassfull of orange juice , and .then going back to bed to sleep in late. Ah Peace, I love your animal stories. That is crazy! Wowsers.. And what a difference in ground moisture. My garden was just about dry enough that I could almost roto till the garden late Saturday afternoon, It rained just about all day Sunday and the garden is very gooey again. I might as well build some more boxes and plant more stuff in the corner of the yard that I recently cleared out. LAD, you too have encountered crazy deer as well? Are these the standard white tails which we have here in Canada. Ours are very well behaved in comparison to your wild and scary ones. Pathfinder, we would get along fine. I hate snakes, always looking out for them, I like pie, I like growing stuff, waiting to see green leaves coming up out of the ground, And I love it when my kids come home for a visit. I keep all of my online friends in my mind, you are all precious and help me deal with Parkinsons. Be safe in all you do today and everyday. jb
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    Good Morning to Anybody that happens to look at this thread. Hello LAD, what a beautiful picture of a lovely sunset. I never tire of looking at the sky. No two sunsets are ever the same, the moon is magical; how does a huge ball of Ontario Cheddar cheese maintain such an orbit around the earth day in and day out? The stars are amazing and it is hard to count them all,I usually loose count at about 34,678, 896, 567, 498, 314 gazillion.... and a dark country sky contains many more stars than you can see from a city. Clouds come and go in all shapes and different textures. A rising sun is a great thing to watch. Like a can opener going around the horizon. Or opening up a can of peaches, Light peaks into the can, or the Earth, images take shape, the lid rises and you fish out a peach and enjoy the sweet wet taste, the sun warms your face. Our world is an amazing and delightful place. Oh, thanks for the clarification on the Tango LAD, I thought that you were teaching it to one of your sons. There is a local ballet school in Town that offers lessons for Parkies that seems to be popular. Some of those dancers are limited to dancing from chairs as well. Dance does seem to be a good excercise for us. I used to dance like a crazy man when my body was a little more nimble. Now at wedding dances and such, I feel quite rigid, self conscious, and shy about getting up there and being footloose. Ha, sometimes I still say what the heck and go crazy. Stand Back everyone! Anyways, it is nice that you help out with the dance classes. Hello Em and Marcia, what will occupy your time today. Got a good book on the go? Hi Linda, and Feisty, you had a good long venty type post here recently but then have been a little bit quiet. Don't be shy to put it all out there again. Hey Ella, I still haven't got that pancake truck on the road yet. Dianne, if I do get my diner truck on the road, I will drive to Seattle, swing by your house and blow the horn and wait for you to come out and get a plate full of buttermilk-blueberry pancakes and maple syrup. With whipped cream even if you wish. Mr. Count, Papa Jack, not many men post on this thread, I am starting to feel a little bit funny about that . I would be very happy to see you two, or any other guys posting here as often as you can. TrailBlazer, where did that name come from?....Pathfinder, that is who I meant. I did a bunch of digging and cutting down sumac in a dry corner of my yard yesterday. We dug out a bunch of rocks, roots and sod and put in some boxes to make a little herb corner. Last year it was in the main part of the garden. This year we can go to this little corner to get a bowlful of salad cause we are going to put in some lettuce and a tomato plant in this area as well. And a cucumber plant. I know that you worked hard to get some things planted last week. I thought of you this morning cause my body is sore,( I think you felt that too, ) and slow today from the workercise (is that a new word, from the Latin work and ancient Greek excercise ?) that I did yesterday. Today may have to be a quiet day... Okay, try to be safe and happy everyone, Pick up that phone today and make a call to an old friend or cousin. Take care my friends, jb.. Guys, please post!
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    Hi folks, It's interesting to compare DH's PD experience to mine. Everyone is different. I had vivid dreams awakening with screams years before dx. After being on CL, modifying stress load, increasing exercise, and adding alprazalam, valerian root, and melatonin at bedtime...I now have happy dreams, usually sleep well. DH has had no dreams nearly his entire life. After starting CL he started having vivid dreams...and acting out. I felt the swish of air pass my face as he threw a punch while sleeping. It was so fast, I hold greater rspect for the stories he tells of his youth.(smile). Now when asleep he laughs and giggles...which make me jealous...or he has emotions of conflict. I awaken him if it seems he is having a bad experience. If he is restless, we put a pillow between us in case a sucker punch is possible. Question: has anyone noticed a correlation betwenn vivid dreams and/or C/L? ...Or progression of PD? Gosh, life just keeps on getting more interesting day by day..... Good,luck u you all....love the ones you love... NN BTW, We are nearly loaded for bucket list trip...hoping we have the where with all to make it happen...pontoon air plane ride ...hot air balloon ride...kayaking...trike rides....water rafting...we are working hard to get in the road......👍
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    Afternoon! l have been very busy planting my tomatoes 🍅, two zucchini in my garden, and sweet potato vines in my front landscaping area. Two days of hard work with my still sore hip from my fall but l did it! Today more outdoor chores cleaning the patio. We are getting excited as our son and family will be here soon for a visit. They are changing bases and will stop here on their way. Short time to be here but we don't waste a minute as our entire family can be together. We will have a drive in 🎥 for the kids. DSIL has a huge screen we hang on the patio, cook out, fire and smores! You all should come too!😜 🍪, our grandson has already requested them!! Chocolate chip! Break is over, back to it. PS hubby has had a four day streak of being awake more!!! Not sure what is different, just so thankful!
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    Serenity - Some of us have pretty strong opinions. I freely admit to being one of them (I don't try to be a butt, it comes naturally), though I try to back any opinions up with evidence most of the time. While you don't have a Dx yet, and when you eventually do get one it may well not be for PD, I see no reason why you can't stick around, ask questions, answer ones that you have valuable input for, and learn as much as possible. All that said, my best recommendation for you at this stage is to probably hold off until your insurance through the new job is active and then ask around for recommendations from people you know/trust/like for a new PCP. Focus your questions to those people on which docs will actually care and listen to you rather than try to pump patients through as fast as possible. Such docs are getting harder to find. It may be that you need to essentially interview a few before you find one you like well enough. DW and I did exactly that when we found out she was pregnant with Thing 1. One Ob we had an appointment with turned us both off in a huge way. She seemed offended that we'd have the temerity to look for a doctor that respected both of us, and treated her like a human being and me like more than an undesirable piece of furniture. As a result we ultimately chose a midwife, and that midwife has become a friend that we keep in touch with. Anyway, find that good PCP. From there you should have an easier time getting to a neuro (ideally an MDS) that is also the kind of doctor you want on your side. Then you can probably find the answers you need, even if they're not the ones you want. That whole process will take at least months, and quite possibly years. I'll pray that it's the former for your sake.
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    Lets go after the poor and sick instead of billionaires like Trump who pay little or no taxes
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    Well, It is a beautiful day in the neighbourhood, a beautiful day to be a Neighbour. Good Morning everyone. Em, I think that the trifle sounds yummy. I love the substitutions. LAD, busy and upbeat as always. Linda, You have a very strong faith and I can see how it sustains you. Pathfinder, I have trouble with low blood pressure sometimes making me feel faint. Is that what happens to you. I remember when my Dad had to stop driving because of his Alzheimer condition. It was a difficult thing. Welcome aboard Manolo. Whazzup on the Delta.? Hi Ella, and Serenity, wise observations. And here we are in the 2nd half of the month of May, in the year 2017, as we record years. It is time to get my garden planted but it is still too cold and wet. We have been eating lots of asparagus and rhubarb has started. I cut the grass yesterday for only the second time. We have had lots of rain, but not enough heat for hay and stuff to really grow. Well lots of jobs and errands to get done today. Heartfelt thoughts go out to Manchester and the loss of lives in that despicable bomb attack. (Rot in Hell; Bomber) All the best to my Parky Friends. jb
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    Of course we get you!! I admire you for the care you give your Mother. Fighting her battles with medications and making her as safe and comfortable as you can. You rock!🤗
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    I read thru the posts, evaluating different approaches to PD. Most of the time, I seriously read the posts, and sometimes I read with elevated concern. It is such a joy to stumble on a post that makes me smile and elevates my mood. LAD's posts have made me smile more than once. Thanks LAD..
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    Yeah ok... everyone sticks around no matter what right? Good luck with that one Luke! The person with the disease is at a disadvantage as harsh as it may sound but it's reality. As you get worse over time you will need someone to take care of you. I'm a caregiver so I'm your future unless of course you can do it all and a cure will be around the corner. Many times people react and lash out at their loved ones without even thinking. Appreciate the person that you cannot do without because that day will come before you know it.
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    Are you taking the 4 am dose with a sufficient amount of water to encourage your stomach to empty into the small intestine where the sinemet works? Or maybe lying down keeps the stomach from emptying into the intestine. Is it possible you could recline against some pillows in a semi seated position for awhile?