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  1. 3 points
    I was awake, I was shuffling round the house when the morning laser rays of the sun started to nibble at the lid of a big old coffee can which had contained us throughout the night. It took some work for the sun to pry up the eastern edge and the sky began to take shape. I guess the sun had done this before and he knew how to gho about it. Happy Easter everyone. jb
  2. 3 points
    I find moving around - walking makes it go away faster. It seems to be the shot of adrenalin for me and as soon as I get the adrenalin out of my system I'm fine. It's worse when I'm sitting or confined.
  3. 2 points
    The resurrection of Jesus Christ from the dead is the foundation of the Christian system and is reflected on weekly by Christians. It is not an annual celebration/rememberance reserved just at Easter as some may practice. Jesus Christ's victory over death and our assurance that physical death is not the termination of human existence is indeed a cause for joy and strength. The Lord was the only perfect passover sacrifice suitable for forgiveness of our sins. A read of John 20 refreshes us on the Lord's resurrection (NASB) The Empty Tomb 1Now on the first day of the week Mary Magdalene came early to the tomb, while it was still dark, and saw the stone already taken away from the tomb. 2So she ran and came to Simon Peter and to the other disciple whom Jesus loved, and said to them, “They have taken away the Lord out of the tomb, and we do not know where they have laid Him.” 3So Peter and the other disciple went forth, and they were going to the tomb. 4The two were running together; and the other disciple ran ahead faster than Peter and came to the tomb first; 5and stooping and looking in, he saw the linen wrappings lying there; but he did not go in.6And so Simon Peter also came, following him, and entered the tomb; and he saw the linen wrappings lying there, 7and the face-cloth which had been on His head, not lying with the linen wrappings, but rolled up in a place by itself. 8So the other disciple who had first come to the tomb then also entered, and he saw and believed. 9For as yet they did not understand the Scripture, that He must rise again from the dead.10So the disciples went away again to their own homes. 11But Mary was standing outside the tomb weeping; and so, as she wept, she stooped and looked into the tomb; 12and she saw two angels in white sitting, one at the head and one at the feet, where the body of Jesus had been lying. 13And they said to her, “Woman, why are you weeping?” She said to them, “Because they have taken away my Lord, and I do not know where they have laid Him.” 14When she had said this, she turned around and saw Jesus standing there, and did not know that it was Jesus. 15Jesus said to her, “Woman, why are you weeping? Whom are you seeking?” Supposing Him to be the gardener, she said to Him, “Sir, if you have carried Him away, tell me where you have laid Him, and I will take Him away.” 16Jesus said to her, “Mary!” She turned and said to Him in Hebrew, “Rabboni!” (which means, Teacher). 17Jesus said to her, “Stop clinging to Me, for I have not yet ascended to the Father; but go to My brethren and say to them, ‘I ascend to My Father and your Father, and My God and your God.’” 18Mary Magdalene came, announcing to the disciples, “I have seen the Lord,” and that He had said these things to her. Jesus among His Disciples 19So when it was evening on that day, the first day of the week, and when the doors were shut where the disciples were, for fear of the Jews, Jesus came and stood in their midst and said to them, “Peace bewith you.” 20And when He had said this, He showed them both His hands and His side. The disciples then rejoiced when they saw the Lord. 21So Jesus said to them again, “Peace be with you; as the Father has sent Me, I also send you.” 22And when He had said this, He breathed on them and said to them, “Receive the Holy Spirit. 23“If you forgive the sins of any, their sins have been forgiven them; if you retain the sins of any, they have been retained.” 24But Thomas, one of the twelve, called Didymus, was not with them when Jesus came. 25So the other disciples were saying to him, “We have seen the Lord!” But he said to them, “Unless I see in His hands the imprint of the nails, and put my finger into the place of the nails, and put my hand into His side, I will not believe.” 26After eight days His disciples were again inside, and Thomas with them. Jesus came, the doors having been shut, and stood in their midst and said, “Peace be with you.” 27Then He said to Thomas, “Reach here with your finger, and see My hands; and reach here your hand and put it into My side; and do not be unbelieving, but believing.” 28Thomas answered and said to Him, “My Lord and my God!” 29Jesus said to him, “Because you have seen Me, have you believed? Blessed are they who did not see, and yetbelieved.” Why This Gospel Was Written 30Therefore many other signs Jesus also performed in the presence of the disciples, which are not written in this book; 31but these have been written so that you may believe that Jesus is the Christ, the Son of God; and that believing you may have life in His name.
  4. 2 points
    Hi all! Thanks Dianne. We didn't think we were having any for a while there. Grandkids I mean. Happy birthday, JB. The cats much have thought they needed to bribe us to stay home. Yesterday they came out with a toy that has been missing for ages. Then this morning one cat brought out another toy that has been missing. I'm thinking they hid them on purpose. If those cats could talk what a tale that would be.
  5. 2 points
    Hi Superdecooper, it is funny you call it sleep jealousy.It's like we are now in a kind of sleep competition with our dw.I see it differently,because of our situation.I doubt if any pwp ever gets 8hrs of sleep without sleep aids.If you get 6hrs of sleep with Azilect,that is a big deal.I know that if you stop any PD meds the symptoms will reappear,and unfortunately we are in this for a long run,unless there is a breakthrough for a cure one day.I understand the "why me"question still lingers in the minds of most parkies,because acceptance is a difficult struggle,especially as a young pwp.I guess the earlier one accepts this new journey,the better.It is tough on everyone including the families.Hope is on the horizon,they say.May the major breakthrough happen in our lifetime.Stay positive!
  6. 1 point
    i too have put my faith in god although I may not be cured I know I am not alone
  7. 1 point
    Is there any news about when we can get this test?
  8. 1 point
    https://ladpdjourney2.wordpress.com/ some if you read my original blog post of my initial diagnosis...I decided to blog for PD awareness month using some of my posts from the forum... read if you like... sorry I posted this twice... I know that annoys some people 😊 New post today 4/2/18 new post 4/19/18 LAD
  9. 1 point
    Within minutes of talking to a certain person, I would get a violent right hand tremor— I am almost exclusively left side symptomatic otherwise! I used it as a reason for changing a relationship status and taking Cognitive Behavioral Therapy and assertive communication training. The assertive communication was revolutionary! My whole life I had thought I was a firm yet fair person only to find out I’m a pushover!😁. My children were shocked I hadn’t known how passive I was. Now I appreciate my nervous tremor because it’s an indicator to take care of my needs and I can say “Ooh, look at that tremor, we’ll have to discuss this later.”
  10. 1 point
    There are cases of Parkinson that have atrophy and overlap with motor neuron disease. They are less common but possible. Many of the cases I have seen have actually done very well. There is also a condition that is treatable called hemi-atrophy hemiparkinsonism and this can be diagnosed by exam and also the use of a MRI (both are needed).
  11. 1 point
    Hi, jb. WE HAD SNOW TODAY IN BALTIMORE COUNTY, MD!!!!!!!!! It has been beautiful, coating each branch on the trees and staying cold enough for it to not just all drip off right away. We kept reading about the southeastern states and the northeastern states getting good heapings of snow, and it was so frustrating that we didn't get the same. So FINALLY we got some before the season is over. Caught up certainly IS elusive. Lack of strength, cognitive issues, and apathy are very challenging to overcome. I find I get so excited when I get even one thing among many done these days. I am so glad to hear you have the support you do for all of the things needing to be taken care of in a farm life. It is hard to have to face not being able to do some of them now. We're with you in mind and spirit. And we understand that it is harder to keep up with correspondence. It's just always nice when you can, and we appreciate that. Take care. Linda
  12. 1 point
    I started on an agonist but felt awfully sick and exhausted, and then swapped to Azilect which didn't work as well, but good enough for 6 months or so. I desperately needed something to get me moving properly and make me comfortable again. I think taking meds gets us more active, and being more active means more stiffness when you try to stop meds and give your body that sudden change. Madopar is helpful and tedious like you guessed, but I want to keep working, stay active, and run a muck with the kids, and a few Madopar during the day let's me do that. I don't take them shortly spaced enough (ie no strict schedule) so I still have on/off time. I mentally don't like the idea of that much medication but in reality I'm probably only 1 or 2 pills per day short of not having significant symptoms. If I stopped Azilect then I would have to be much more strict with timing. Sleeping is so variable for me and I don't have the answer. It can be periods of 3hrs a night, to back up to 6. I'm happy with 6, but not with 3. My best sleep is if I've been really active during days prior and a Madopar about an hour before bed. Good luck to you both. I'm sure this is as hard or harder on our families than it is for us so we owe it to them to keep ourselves moving well and positive while we can. In my view, if you can't move well then it is harder to be positive and have those short moments where you can put this out of your mind. I'm hoping as time goes by I can stop letting it occupy my mind. I don't like bothering family and friends talking about PD as deep down I know everyone has their own version of a bothersome struggle.
  13. 1 point
    Is the swaying at stance called Akathesia?If so I think I do experience this a lot after fast walking exercise or jogging and stopping.I have always been thinking that sinemet was worsening my balance problems.I have posted this on ask the Doctor's forum to see if Dr Okun has an insight as to the solution to this problem.I hope someone can help.
  14. 1 point
    I got very depressed 10 years ago. After five years of up and down I got a bipolar diagnosis (5 1/2 years ago)because antidepressants made me manic. I got a drug induced Parkinsonism diagnosis this November because my first movement symptoms started (4 years ago) after taking an atypical antipsychotic for the bipolar. Yet two years after quitting the drug, I still have motor symptoms, so I was given carvidopa/levodopa(c/l) to see if it would help. If it did that would be a good indicator of actual idiopathic Parkinson’s. Almost as soon as I started the c/l the PD motor symptoms got better but I started rocking back and forth when standing. And random kicking of my leg when sitting. We do not know what this means! The things that have helped me most: A good therapist to talk with every week. Often twice. We are doing Cognitive behavioral therapy and assertive communication training. Doing things I like every day such as listening to comedy or reading. Walking fast. Self care rituals. Naps. LSVT-Big rehabilitation therapy. Doing something nice for someone else every day. Things I cannot handle: Coffee. People talking aggressively, low blood sugar. Rushing, and multiple appointments in a day. The self care and firm refusal to tolerate stressful people have cut my tremors in half! I can deal with being slow and stiff because I’m not going to rush. I can deal with the cognitive slowing because I know I’m a good person. I can deal with the uncertainty because each day has something good in it. Medicine has not been very helpful to me. I’ve had to build a life worth living a little at a time. I keep it very simple and don’t require much of myself except to be kind. I cry good and hard when I feel like it. And I read, watch and listen to a lot of comedy so I laugh a lot.
  15. 1 point
    My problem, Dr Hinz, is that you are spamming the message boards. That’s not cool and it’s what scam artists and quacks typically do. Saying that Other companies also have FDA complaints so why bring up your past is not a defense. Instead it just looks like a bad actor trying to get new clients for what could easily be just another shady business practice But if that’s not the case, if you’re now legit, then Why dont You just advertise or better yet, why don’t people who think your services are legit speak up and tell us how great they’re doing. Look, Folks are free to seek treatment in any way they like, and no one is saying that alternative meds and therapies are not beneficial. Just consider the source is all I’m saying. -S
  16. 1 point
    Welcome & thanks! I try😊 Saw this online... it's older but maybe worth a read.... also try tapping your fingers...to a beat... http://medialt.no/news/en-US/pc-users-with-parkinsons-disease--tips-for-appropriate-adaptations/576.aspx
  17. 1 point
    Hi SS, i don't have a freezing problem. I have a tremor problem. When I'm using my mouse, Im usually concentrating and sitting relaxed in a chair. Then my Tremor starts up and it's pretty difficult to move the mouse properly and click the left mouse button. That's compounded with dystonia making it painful to hold the mouse for more than a minute or so. If it gets too bad, I take the next dose of Baclofen which moderates the pain, but the tremor is still going on. This sucks. Also, I tend to lose the focus necessary to swiftly write about complicated material and make the intuitive leaps between Facts and ideology. This really sucks. i have tried the speech to text feature available on iPads and iPhones. That works some but I have to be very careful in the way I speak. Siri likes mechanical speech not conversational dialogue. I haven't tried Dragon naturally speaking yet, but if anyone has add love to know what their experience has been like. -S
  18. 1 point
    My husband is 70 years old. He was diagnosed about 5 years ago. He is so diligent about doing what needs to be done to stay well. Our Neurologist department has LSVT exercise three times a week. He tries faithfully to get to these exercise classes. He also went through the LSVT exercise program. THE EXERCISE MAKES ALL THE DIFFERENCE IN THE WORLD. He used to shuffle and he no longer does that. He seems to be having some difficulty with his speech. His voice becomes horse and he speaks quite. He has also become less of a conversationalist. His Neurologist suggested he go to speech therapy. He has gone through the LSVT LOUD program and it has helped. I would like to know why LSVT charges $45.00 for their DVD for practice. Seems as if they are taking advantage of Parkinson's patients. Just Note: He recently suffered from a bout of whatever is going around. IN MY OPINION - HE IS A GREAT GUY BUT WHEN HE GETS SICK...... HIS BODY SHUTS DOWN. HE SEEMS TO HAVE TO USE EVERY EFFORT TO FIGHT THE SICKNESS AND HE BECOMES A ZOMBIE. IT TAKES HIM LONGER TO GET OVER IT. So anyone who is suffering any flu, cold, sickness. Take note: if you have Parkinson's your extra slowness is most likely being caused because your brain is fighting the illness. Take it easy. Caregivers note: Be patient, make the Parkinson's patient take extra care of themselves. The one thing that I stress for my husband is to please make sure you put your medication in pill boxes. I only take a Blood pressure pill and thyroid medication and if I don't have those two pills in my pill box........ I don't recall if I took it this morning or not. As I say to my husband, if you are on a plane you need to put the oxygen mask on first in order to help yourself to help others. It is the one things that I insist. MAKE SURE YOU FILL THE PILL BOTTLES AND TAKE YOUR MEDICATION ON TIME. A very happy new year to you all and read and learn what helps other patients and remember. Every case of Parkinson's is different. But we can all learn from each other. God Bless
  19. 1 point
    Hi Tweets32, I can relate to your story. Since I was diagnosed in Oct 2017 (after suspecting it for months), I started to ride a stationary bike nearly every day for a half hour at a moderate clip and added stretching and strength exercises to the mix (with the direction of a local PT). I attended a Good Start program the end of November and the PT speaker (who was great, btw) indicated that in order to get the full benefit, you should exercise at a more intense level for a minimum of 2 1/2 hours a week. Sooooo...I kicked it up a notch, nothing crazy, but within a few days every joint in my body was cracking and popping frequently throughout the day. My shoulders have been sore since then too (particularly one, and it's on my "good side", which is frustrating). I thought maybe it had something to do with the Pramipexole that I'm on since that can cause swelling, but I've reduced my dosage significantly, and it's still happening. Neither my doctor nor my PT now why it's happening either...I'm a mystery. Short story long, I've gone back to cycling at a moderate clip as I'm sure that's better than nothing at all...and being active makes me feel better physically and mentally. So, I just wanted to say that I agree with you; you don't want to push yourself to the point of extreme fatigue and injury. I'm taking it easy with my shoulder in hopes that whatever is going on will heal and I can start to gently strengthen it again over time. Wishing you the best!
  20. 1 point
    This exercise post is near and dear to my heart. I am 55 years old and in pretty good shape. I have always been physically active. I've been involved in martial arts for years and I also enjoy going to the gym and lifting weights, among other things. I was diagnosed about 3 years ago. Even before my diagnosis I was starting to slow down on some of my activities because of excessive fatigue. I still go to the gym and my martial arts classes. I just don't try to be superwoman anymore. When I read that study that says intensive exercise will stop progression of the disease I was excited and thought "Yay! This proves what I already believed" because my progression has seemed to be slow so far. So I jumped on the bandwagon and increased my exercise. I enrolled in some classes at a local MMA school called "Fight Fit" which is basically an extremely difficult HIIT class that lasts for an entire hour. I was very proud of myself when I made it through the first class. However, this was not without a lot of increased tremors going on and literally almost no energy to get myself in the car and drive the 2 miles back home to my house. The next day I was exhausted and I felt like every last bit of dopamine had been wiped out of my body. Hmm...I thought exercise was supposed to make you better and increase your dopamine production. Where are those endorphins? I don't like to give up because like I said...I'm hardheaded, I'm a woman and I think I can be superwoman. The article says I need intensive exercise will make me better so I'm not giving up. I ended up going to 2 more classes. When it was time to go to the next class I literally cringed inside. I couldn't bring myself to go and do that to my body again. I loved the actual exercise and the comaraderie of the other women in the class. But I just felt sooo bad after the class and the next day. My symptoms actually started getting worse and then I started feeling depressed. Yes I know that I can do other exercise but I've actually been having a hard time in some of my martial arts classes lately because of an increase in tremors. I actually quit my Saturday class cause they practiced for 3 hours. I have felt like a failure because I'm now doing less exercise than I was before diagnosis. Yet everybody tells us that you must do intensive exercise. I talked to a friend who's had this disease for 25 years. She made me realize a few things about this "study" that is posted all over the internet. 1) This is not a scientific study by any means. 2) Everybody progresses at a different rate so you can't compare one person to another. 3) There's no way to determine how much somebody would have progressed in 6 months if they had not done the exercise. Seriously, there's no baseline. Six months is a very short time in the space of a lifetime. They might not have gotten worse during that time. 4) What the hell is "intensive exercise?" The study doesn't even mention how long the subjects exercised for. Obviously intensive exercise will be different for every person. So I decided I'm not going to let myself get depressed because I can no longer do "intensive exercise". I'm going to continue doing whatever I can. I'm really sick of all the people who post pictures of themselves doing bodybuilding, running marathons and similar things and trying to tell the PD community that they are not progressing because they are doing this intensive level of exercise. Maybe the truth is that their disease is progressing slowly so therefore they have the ability to continue working out like that and not the reverse. Seriously, an entire year before I ever had a tremor or other symptom of PD I suffered with extreme fatigue. At the time I was going to the gym doing a five day split, lifting very heavy (for a 110 pd woman). I was so tired in the evenings, I could barely make dinner for myself and my teenage son, then I would be crawling into the bed. My mom kept telling me to go see the doctor because that wasn't normal. Of course, I refused because I thought it was just because I had increased my weight lifting routine and I just needed to get used to it. I didn't want to quit because I had a goal. Anyway, the doctor's would have never figured out what was wrong with me even if I had gone cause I was misdiagnosed even when my tremors started manifesting. I'd like to end all this rambling to say that PWP should always keep moving and do whatever exercise they are capable of doing even if it's just walking. Yes, it will help you to feel better and probably help to keep your muscles from becoming rigid and locking up on you. However, there is no scientific evidence that it will keep you from progressing. Likewise, you are guaranteed to feel like crap if you give up and lay in the bed all day.
  21. 1 point
    Good Morning world., Well, it is a cool one again. We had one day this week where it actually got warmed up for a daytime high of -10 C, but every night it drops to -25 C, last nite it was -30C (-20F). i burn lots of firewoood but the gas furnace still has to make up some heat to keep the house warm enough. This is a new weather pattern in recent years where we get extended cold spells caused by the Artic cold air masses that stall over central Canada. Instead of moving on, pushed and maneuvered by the upper jet stream, it seems to stop and linger because the jet stream is not following the usual patterns . These upper winds should move this cold mass, break it up, allowing warm air to come up out of Colorado, Ohio or even the upper Pacific Ocean. Instead of this cold mass breaking up and swirling like a good old fashioned square dance with lots of wheeling, meshing and interaction with other masses and currents, we have this big old Wallflower parked on the dance floor and everything has to bend around it. When the hot air comes up your east coast it hits this big chunk of ice cold air and rain,snow and fog happen. The change in my weather is because the jet streams are not behaving as normal. And Science has persuaded me that the Jet streams are different because of Global Warming. Or maybe that is all fake news. But something is causing big changes and big storms. When people ask me what Parkinsons is like, they can often relate to my comparison to skating on an outdoor rink until you get really cold and then you take your gloves off and try to untie those laces and pull on your boots and tie up those laces almost like you were in slow motion. Then fish around in your pocket for the car keys and fumble with getting your frozen butt seatbelted securely in the car and then trying to hit the keyslot with your cold shaky hands. Most Canadians have a feeling for that description. Yesterday I went to town to pick up 1200 Levodopa pills for about $350.00, and a few other errands. I was chilled, my hands were cold and this double negative did not make a positive. I had cold Parky Paws going for my wallet, hiding in deep dark pockets, pulling gloves off and on and getting my list out and even had to fish out my cell phone and hit the right buttons cause my Mom phoned me from the Manor just to say hi. I am lucky to live in small town Canada where everybody has a name and things go a little slower. I was startled even myself how much of a job it has become to be chilled and do little things like put a credit card into its proper spot in my wallet. I was struggling to do just that in a local store one day and the checkout girl saw my struggle and reached out and easily took the card and placed it in the slot in my wallet with a smile and casual conversation that I was grateful for and it seemed so nice of her with no hint of trouble for her and I certainly had no indignation about her touching my wallet. There is more that I wanted to say this morning but there are things to get done. Like feed the horses. They see the light on in the kitchen and they like to whinny their hay demands over the fence at me. They will have frost on their whiskers this morning. Take care everyone, don't forget your sunscreen today Miracleseeker lol. jb.
  22. 1 point
    Thank you all for your inspiring words and advise from your experiences. I got my confirmed diagnoses a little over a month ago and at first I thought I'm too young at 54 for this, I was suppose to be healthy and able into my 80's like my parents. I've always been a very active person and totally "on top" of everything. I started noticing a difference about 2 years ago and have been struggling to keep up with everything the same I way I always have. I kept asking myself, why do I feel so old and sluggish and why can I not do what I use to? I was beating myself up. But now that I have my diagnoses, like many others have said, it's been a relief to have answers to the "why" and after reading everyone's encourage words, I actually realized it's all OK. I think the biggest thing for me, I've finally given myself permission to slow down a little and accept I might not be able to do everything I once did and by doing this my stress level has dropped tremendously! I've decided I'm not going to work all the extra long hours, I'm going to take all my vacation time and so what if the house isn't spotless. I truly feel like I'm a happier person. Thank you Parkinson's for giving me a reason to slow down and smell the roses (if only my sense of smell was better )
  23. 1 point
    I've learned to accept fatigue. Its a normal part of PD, and gets worse as it progresses. From my experience, the best way to deal with fatigue is rest. Exercise and work when you can, rest when you can't. I quit working, and it was the best thing I ever did in terms of managing PD fatigue. No supplement or medication for fatigue has ever been a good long term solution for me, and I've tried them all. I find 2 hour naps, when tired, to be very refreshing. I take daily naps after lunch. In fact, I'm going to doze off in about 20 minutes.
  24. 1 point
    I realized today that I will only buy front-hook bras in the future. Not only do I find them much easier to put on, but so far, I can only find them in push-up style. I call that a win/win!
  25. 1 point
    I got dyskinesia within the first month of taking 3 doses daily of 25/100. Same as you it sounds only I called it my chicken arm. First tried reducing dose each time to 1/2 a pill which left me off. Then took away Selegiline, added Zonisamide, and most recently added Amantadine. Currently I take between 1/4 and 1/2 a tablet every 1-2 hours as needed to stay on and nominally dyskinetic. It works unless I eat, which pretty much guarantees me 3 or more hours of half on or not on time. Doctor told me that dyskinesia can come at any time and especially those with more advanced disease. As I was not diagnosed until I could barely walk or otherwise function he said he fully expected me to have dyskinesia sooner rather than later. All that said, dyskinesia that I'm experiencing is manageable if I'm careful with food and medication. It doesn't completely vanish but no one else can reslly see it most of the time. It bothers me far less than being unable to move, that's for sure.
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