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Found 13 results

  1. Does anyone has experience using hands free mouses?
  2. Does anyone have experience using hands free mouses?
  3. Freezing and falls

    I am a 59 year male diagonisted in 2001 and had DBS in 2011 .My medications are as follows : 195 mg Rytary 3 capsules 3 times a day 5 mg Selegine 2 times a day 100 mg Amantadine 2 times a day 45 mg Remeron at bedtime My DBS does a great job of controlling my dyskinesia but over the last couple of years my freezing has gotten much worse and has resulted in a broken leg and a broken hand. My. Doctors say that I am under medicated and have changed my medication from 150 mg Stalavo to my current dosage of Rytary. I am falling almost daily now but when I am off the medication in the morning I do not have the freezing episodes. Without the meds I get really stiff and slow. I feel that I am over medicated but it is hard finding the happy medium and keeping it. In your option can too much Levodopa result in freezing or is freezing more likely addressed with making adjustments to my DBS?
  4. Questions on your experiences

    Hi everyone, My name is Alex and I'm an industrial design student at University of Cincinnati. Currently I'm trying to design a walker for people suffering from Parkinson's, after seeing how difficult movement is for a friend of mine who has the disease. I know it is a sensitive topic and I don't want to tread on anyone's toes, but your input is invaluable as a patient or caretaker who deals with Parkinson's everyday. The last thing I want is to make something useless out of naivety or lack of comprehensive forethought. I know everyone has different a different experience with the disease and I'd like to account for the different ways it may affect you. I have a number of questions, and I hope have a conversation about them with you rather than offer a survey for you to complete. I'll try not to write a wall of text while explaining every one of my questions, but I think a bit of context might help. If you're interested in more background I'll gladly provide additional information. One area I'm looking at is staircases. My friend (whom I'll call George out of respect for his privacy) uses multiple walkers, because he can't take them up and down stairs. One idea I have is to make a lightweight walker that can help him move up and down stairs with greater ease. However, I also realize how devastating a fall can be if it were to happen. What are your experiences on staircases? Do you require a handrail? If so, how do you use it? (One or both hands, for balance, weight support, etc?) Would you be interested in a walker that can go on stairs at all, or would such an idea be too risky to use in a real world situation? Another area I've looked at is freezing. There are some mobility devices out there that have laser guides or small sticks that you can step over, which reportedly help rewire the thought process behind taking a step so that freezing can be counteracted. Similarly, I've read that walking on patterned tiles (checkerboard or white and black stripes for example) can help make walking smoother. Do you have any thoughts on this, in terms of your own experiences with freezing, personal remedies, and opinions on such technologies/practices? My last focus is on the adjustability of walkers. If you have a folding walker, how often do you fold it up and for what purpose? Most walkers can be adjusted for height, but do you ever wish it could be more easily changed? For example, for people who have difficulty getting out of a chair, do you ever wish your walker was a different height to help with standing up? I sincerely hope not to insult anyone with these questions. Any answers at all would be greatly appreciated, and of course only answer what you are comfortable talking about. If you have any advice for me in terms of approaching the topic in the future, please do let me know. Thank you for all your help! Regards, Alex
  5. Last October I posted about a problem I had with severe freezing of gait. It started with pain in my lower back from a pinched nerve. Allowing it to go on for months was a mistake. Eventually "traction" at the local hospital physical therapy clinic has stopped the pain and I maintain relief with an inversion table. But...once the freezing habit was embedded in my mind I couldn't let go of it. Tight, narrow places to walk were the most difficult. DBS in 2011 and again in early 2014 (second side) have blessed me with incredible results. 25 down to 5 meds per day, for example. When I turn one of the stimulators off, now in less than 1 minute I can't move the fingers on one hand at all. So, I went to my programmer at Cleveland Clinic, and then to the University of Toledo Medical Center to see if a programming change would help with the freezing. After 3 different sessions I was beginning to believe that DBS simply couldn't help with a freezing problem. In fact, I read online where in some cases DBS could sooner help induce or support freezing. At that point someone on this forum (PatriotM) helped greatly by mentioning David Zid (author of the Delay the Disease program). A one hour session with David in Columbus worked miracles for me...for 2-3 days. Then the effectiveness faded. I was convinced that David's therapy worked, but I needed more of it, for a longer time period. (Signed up for LSVT, or the BIG therapy. Just finishing my first week, I'm confident this is going to take care of the "embedded memory" problem.) Then, online I read an article that was titled "Adjusting Deep Brain Stimulation Can Ease Swallowing and Freezing of Gait in Parkinson’s". My stimulators had been set a 130 herz (like the article said) since the beginning. I sent the article to my programmer at Cleveland and made an appointment. A couple of days ago she changed the herz settings on both stimulators from 130 to 100. The results are SIMPLY AMAZING. The freezing tendency was reduced tremendously instantly. Due to me embedding the habit for so long the LSVT is still necessary, especially at night when I'm off meds for 12 hours, 6 to 6. But the other thing that is blowing my mind is I feel more "settled". It's like there's a subtil stimulation that was happening inside of me that has settled down. It's fascinating how you read someone else's post, and can't at all relate...yet. For example, early in PD (diagnosed 13 years ago now) when someone would talk about "on/off" I had no idea what they meant. Oh boy, did I ever come to understand later! "Freezing" was also something I couldn't imagine. Now I do. The PD journey continues. Thanks to all of you who's posts have been so valuable to me as we all continue to learn together and do the best we can with what we've been given. Obviously, we are all very unique. I wanted to post this in the rare case that there's someone else out there dealing with the same challenge that this may also help. And, thanks for people in the medical field who are not only knowledgeable, but also humble enough to partner with us. My programmer at Cleveland could have resented my input if she had a big ego. She said she was considering going there (lower herz settings) anyway, and I believe her.
  6. Last October I posted about a problem I had with severe freezing of gait. It started with pain in my lower back from a pinched nerve. Allowing it to go on for months was a mistake. Eventually "traction" at the local hospital physical therapy clinic has stopped the pain and I maintain relief with an inversion table. But...once the freezing habit was embedded in my mind I couldn't let go of it. Tight, narrow places to walk were the most difficult. DBS in 2011 and again in early 2014 (second side) have blessed me with incredible results. 25 down to 5 meds per day, for example. When I turn one of the stimulators off, now in less than 1 minute I can't move the fingers on one hand at all. So, I went to my programmer at Cleveland Clinic, and then to the University of Toledo Medical Center to see if a programming change would help with the freezing. After 3 different sessions I was beginning to believe that DBS simply couldn't help with a freezing problem. In fact, I read online where in some cases DBS could sooner help induce or support freezing. At that point someone on this forum (PatriotM) helped greatly by mentioning David Zid (author of the Delay the Disease program). A one hour session with David in Columbus worked miracles for me...for 2-3 days. Then the effectiveness faded. I was convinced that David's therapy worked, but I needed more of it, for a longer time period. (Signed up for LSVT, or the BIG therapy. Just finishing my first week, I'm confident this is going to take care of the "embedded memory" problem.) Then, online I read an article that was titled "Adjusting Deep Brain Stimulation Can Ease Swallowing and Freezing of Gait in Parkinson’s". My stimulators had been set a 130 herz (like the article said) since the beginning. I sent the article to my programmer at Cleveland and made an appointment. A couple of days ago she changed the herz settings on both stimulators from 130 to 100. The results are SIMPLY AMAZING.
  7. Rytary

    Hi Mark, I got on the NPF website to look up Rytary. I found your forum and I think you might be what I need. I was dxed July, 2004 one month before I turned 52. I have tried many neuros with not very much success or satisfaction. I have been on Stalevo & Comtan years ago but quit because of gastric problems if I remember correcly. Now I take 1 Azilect 1mg once a day, 1 ropinirole ER 12mg once a day, Amantadine 100mg 3 times a day & I have been breaking carb/levo 25/100 tabs in half because of dyskinesia which drives my family & me crazy!. I've never had anyone tell me how to take my meds as you did so explicitly to Karen. The last time I saw my neuro she said a lot of pwp take Requip in the afternoon which I am doing now but I haven't noticed a difference. I don't think I've ever been on Sinemet CR. I think that may be helpful to me. I am having a LOT of freezing & off times. By the way, it seems the only thing the neuros think is DBS! I don't think I am that bad, I just think I need a meds adjustment. What do you think? Thank you, Brenda
  8. Pain with Parkinsons

    My husband has been diagnosed with Parkinsons for 4 years and was doing pretty good. Suddenly, last month he started having pain in his feet, legs and knees. Sometimes it is unbearable. He's tried Cymbalta and doesn't notice any difference. He also takes, Aleve and tylenol, which doesn't always help. Is there anything else he could try. He is also experiencing "freezing" which he never had before. Is there a med that would help? Thank you
  9. Hello. Well, here I am. Still up at 3AM knowing that there isn't anything I can do but learn to live with this disease. I was so angry and so frustrated that I flung myself to the floor and threw the biggest, loudest and most unsightly temper tantrum. Any two year old would have been proud. About 10 years ago I noticed that my memory was slipping. Little and (big) things like what day it was or renting the same DVD six times because I thought I hadn't ever viewed it before. Then about 5 years ago I started having trouble with walking. It felt like my feet were just too heavy and I struggled to just keep up a "normal" pace- pick em up and put em down. Then 2 years ago, my ring and pinkie finger on my right hand felt numb and cold on the outside but the bones in both fingers felt like frozen steel and hurt bad. Maybe I slept on that hand? Nope it didn't go away. But instead was joined by the ring finger on the left hand wagging and making tiny circles all of the time. 2yrs ago that's when I weighed 159 lbs and I went to my Dr. Passed on to Neurologist who had MRI done and then another MRI with contrast. Blood work. Tagged with Bilateral Tremor and treated with Klonopin -1x a day. Had check up 6 months later weighed 135 lbs with both hands and all fingers shaking and twitching Dr. upped Klonopin to 4x a day. I saw the Neurologist a few more times and was told as long as the Klonopin was maintaining it's "hold" they weren't prepared to say it was Parkinsons. Meanwhile, I needed to have surgery done by Urogyno. Hysterectomy, bladder mesh, etc. Surgeon would not operate until he got a letter of clearance from Neurologist. Surgeon said that if I have Parkinsons he would need to use different method to put me under. Neurologist gave him the clearance letter. Surgery was April 3, 2014. Surgery went fine. But I went into full on Parkinsons within 6 weeks. Stuttering, freezing, falling, fainting, tremors, cannot swallow REALLY SCAREY and I now weigh 91 pounds. I am on carbidopa-levodopa, amantadine, temazepam, clonazepam, Colace and my thyroid replacement med levothyroxine. I use a walker. My 80 year old mother gets my groceries, pays my bills, gives me a bath and dresses me, feeds me. I cannot drive, open a water bottle, button or zip clothing. My right arm is frozen against my upper body bent at the elbow as if to shake your hand. It really hurts all the time. My right foot is the one most likely to freeze and send me falling face first if I try to shuffle without the walker. And constipated OMG I hate it, hate it, hate it! All of it. Not just what is happening to my body but to lose control of every aspect of my life. And so darn fast. On April 3, 2014 I had bilateral hand tremors. Then was diagnosed with full blown Parkinson May 28, 2014. I don't know much about "rate scale" but mine is 4-5. Someone told my mother 5 is end stage. How can that be? I got a call from Behavioral health at 8:30 am. She wanted to do a phone assessment of my mental stability. First question was - are you depressed? I managed a stuttered FFFFFFuuuuuuu. That's when I had my all out, throw down, crying, twitching, pity party of a tantrum. Are you depressed? Seriously? Ok, if anyone reads this I want you to know that I am a fighter and not about to give up. I have an appt. with a Parkinsons Specialist the 8th of July and I know that I'm only on 2 Parkers meds. There are all kinds of treatments and combo meds to try. I know this. I want to thank NPF for providing this forum. I needed to vent tonight. Thank you so much.
  10. Researchers must be familiar with the fact that patients with severe freezing problems can often ride a bicycle as if they had no Parkinson's. If we could understand the mechanism that goes on in the brain, patients might be able to apply it to the remainder of the day's activities, a major achievement. It must be simple because it happens so quickly. What can we do to find the explanation?
  11. Background info - In the last 3 months, my 92-year-old mother-in-law was switched from a 10-year regimen of Stalevo to Parcopa (per nursing home request) to Sinemet which she has now been on for 3 weeks. Our neurologist made adjustments in the Sinemet in the last month - increasing morning dosage and then shortening the time between administrations. It is the best results we've seen in the past year and my mother-in-law is once again engaging in conversations, activities and reading. We've seen a huge decrease in "off" time. Her off time is characterized by short rapid breathing (anxiety) followed by her mouth freezing open; she is unable to swallow anything and falls into a deep sleep from which she can not be wakened. Eventually within about 60-90 minutes she "awakens" and is able to talk and swallow. Even in her "off" time, she can always walk with her walker and the assistance of someone lightly holding onto a gait belt. Her PD has mainly affected her balance and she has struggles with anxiety. However, in the past couple of weeks we have watched what appears to be the same wearing off systems described above happen following the consumption of liquid supplements given by the nursing home - morning, afternoon and evening. Usually about 15-30 minutes after one of these liquid supplements is given, she demonstrates those symptoms. While she is "asleep" she also cries out in what appears to be pain. Occasionally it has also happened during or shortly after finishing a meal. When we ask my mother-in-law about these episodes she is unable to tell us what she feels. Today we asked the nursing home to not give her supplements for the next 2 weeks so we may observe what happens without them (she eats meals well and has even gained 3 pounds in the last month.) Our question - When she began taking Parcopa (because the nursing facility thought it would be easier for their staff to administer) she began almost gulping her liquid supplements and continues doing that with any liquid now. Is there something about the supplements that could be causing this reaction in her body? I plan to ask the dietician what is in the supplements, but do you have other suggestions as to what we should do? Is this common? Thank you for any suggestions you can give.
  12. Have you ever used Aricept in your practice for the treatment of freezing and gait problems. It has come to my attention that this might be a possibile help for me. I would appreciate any help that you might offer, as I am afraid that I will soon be in a wheelchair.
  13. Whole body freezing

    I experience times when I can't move, and I don't mean just when walking. I will be moving normally (as normally as any PDer can); go sit down for a few minutes and then not be able to move to get out of the chair. It feels like I am paralyzed. I have wondered if it is psychosomatic because one minute and can move and be doing something and the next minute I can't. I have read just today that there is such a thing as whole body freezing but it is rare. Has anyone else had such experiences? If so, have you developed a method to break free? Moon
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