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miracleseeker

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Everything posted by miracleseeker

  1. It is Seven Months Today

    Good for you LG. It was a very wise decision for you to move there because as the disease advances and you eventually require round the clock care you will not feel out of place or alone. Hopefully it won't be any time soon but it's good to be prepared.
  2. Best way to lift someone off the floor when you are alone

    My mom was in a daycare for 8 years and it was not a good experience. Anytime I complained or questioned something that was done they would see me as a trouble maker. I felt helpless because I couldn't afford to hire someone to watch my mom full time back then. I would take her there and a helper would pick her up and stay with her until I got home from work. 3 years ago they kicked her out. They said my mom was not benefiting from being there so they felt it would be in her best interest to leave them even if it means she would end up in a home. Sorry to disappoint them but she's still in MY home. I saw one of the workers yell at my mom when she wouldn't eat when that woman fed her. She didn't know I was behind them. As I got closer and she saw me she then changed her tone and became very loving. I was sick to my stomach. I hope you will have better luck with your place.
  3. My mom has been falling down a lot recently. Some days she is more cooperative and will help me when I lift her up but other times when she's taken her meds and start to get drowsy then I'm on my own and she weighs a ton. What do you guys do in that situation? Do you use any type of gadgets to get them up? Like say an inflatable bed? Will that work? I saw on you tube about the ELK but I think it costs a great deal of money. There is also something like a gait belt but looks like it would work better with 2 people. It still requires lifting and my mom will not budge to help me. I need something that will pump her up high enough so I can then do the rest. I've seen videos where someone goes behind the person and lift them up from under the arm. It never works for me because I'm not big enough. Getting the person on the side and then on their hands and knees look easy enough but again my mom would not do as I ask because of her dementia. What do you do?
  4. Best way to lift someone off the floor when you are alone

    Awesome! Thanks a bunch.
  5. Best way to lift someone off the floor when you are alone

    Hi Moops! I would kiss you if I can reach you right now. This is genius!!! I always wanted something like this but couldn't find it. The closest thing I could think of was an inflatable bed that you can put under the person and have it pump that person to at least a sitting position but they could fall due to balance problems. I really need to look this up but are you in the UK where this video seems originate? I'll have to check out the cost and if it can ship to the U.S. where I am. Welcome to the forum and thank you so much for bringing this to my attention. I'm sure others here will find this a life saver too. Oh.. and this tip about electrolyte sounds sensible enough but I always give my mom Gatorade and it doesn't really give her any energy. Darn! I would love more from you though. Don't be shy and every advice is welcomed.
  6. It makes me wonder what happens to the body to take a drug that was made for one problem and you take it for another. For example people were told to take a high blood pressure pill called Dynacirc to slow down PD. Wouldn't that lower the BP and cause you to feel dizzy and pass out if it wasn't high to begin with? What if one day someone discovers that C/L can help with something else. How would people feel taking the C/L when they don't have a dopamine deficiency?
  7. Too much or too little Stalevo?

    Mark, My mom is constantly walking with her knees bent. Is this a sign of too much or too little Stalevo? I have increased it slightly and it didn't seem to help after 2 weeks. It's all too confusing to know what the signs are for when you need more or less. Do we go up or down? Any clue or personal experience with that?
  8. Restore Gold

    That's wonderful!!! Could people on this forum who cannot afford it send you a PM to get them for free?
  9. Restore Gold

    We are all busy people but we all try and take time out to help and give opinions when we can. You have a lot of knowledge and you do extensive research on this disease. We can really learn from what you know but if you can do so without selling your products then it's a win win for us all. However if you feel you have better use of your time then we understand.
  10. Restore Gold

    I hear what you are saying Fred. Hopefully you can even decrease the C/L although I remember you said before that you didn't want to rock the boat so you will keep things the way they are. Time will tell how this will work out. More power to you. Dave - I know you have gone through quite a bit of trial and error to finally fine tune the meds to keep you going. You also have one of the best doctors out there. Please keep us in the loop of what he knows is coming through the pipeline that he would be enthusiastic about for the rest of us. Thanks.
  11. Morphine in hospice care

    Afroney - you give hope to others in hospice. Stay strong.
  12. Restore Gold

    We know you mean well but Dave has an excellent point here. Your opinion is tainted due to your affiliation with the company that makes it so sorry about that.
  13. Restore Gold

    Fred, My mom was on less PD meds than you before she hit the 5 year mark. I think the true test for you is how you will progress from here on out with or without UDCA. Good luck to you!
  14. Restore Gold

    Worthless opinion #2 - I think your size matters too. If you weigh less than 100 pounds you may feel it more than someone who weighs 200 pounds. Everything factors in when it is taken internally.
  15. Restore Gold

    If this company is already in the red then this supplement will be gone sooner or later. What happens to everyone who think they benefit from it including yourself? Aside from the cost of buying and maintaining this there is also the likelihood of it getting taken away just as your body is getting used to it. People who don't care about their symptoms or it progressing shouldn't take it? That would be no one so what you are saying then is that everyone should take it if they care. Looks like TUDCA would be more cost effective and readily available IF anyone chose to take it. Good luck.
  16. Restore Gold

    The same can be said about the people who think they show improvements from taking this. They also can be on other medications/supplements that are making them feel better. I'm not dismissing this supplement but I just think people should not join the band wagon and or trick their brains into thinking it works because it's suppose to work based on other's testimony. $100 a bottle is nothing to sneeze at. People are desperate to find relief. Unless there is a money back guarantee for this purchase I don't think it's something I would consider for my mom.
  17. Restore Gold

    Don't you take like 60 supplements in addition to the PD meds? How do you know this is making you feel better and not from say Vitamin C that you may be taking too? I think it's very hard to pin point what is doing wonders for you when you are not only on this to make a sound judgement.
  18. Good morning!!

    Every decade that I am in that is past the 5 years mark I always round it up to the next decade. Why fight the inevitable and I feel even older than I tell people anyways. I see people like Christie Brinkley and Jane Fonda who look fantastic for their age but then I think how much pressure they put on themselves to stay this way. Getting saggy and flabby is part of life. Some just get it faster than others. I'm raising my hand here.
  19. Morphine in hospice care

    Go DH!!!! Enjoy every waking moment you have with him. I'm sure he's very happy to be rid of the UTI. Tomorrow is another day. Get some sleep!
  20. Take more or more often with less

    Dr Okun, You often say it's better to give less and take it more frequently throughout the day. What about when the doses given each time is not enough? My mom takes Stalevo 150mg 3 times a day. She has been on this dosage for years and she can barely stand straight any time of the day now. Her doctor suggested that she increase the morning dose to the 200mg strength and slowly work it to taking it 3 times a day at that increased dosage. In this case if she were to decrease but take it more often it would not benefit her since she isn't so much having problems with wearing off too quickly but rather it's not enough per dose for any benefits. How does anyone know what strength of the medications the patients should be taking? Does everyone start off at a very low dose and keep moving up? How long should someone stay at one strength before moving up to the next one when an increase is needed.
  21. Take more or more often with less

    Sorry if I wasn't clear enough but the 200 mg Stalevo is only the morning dose and the other 2 doses are still at 150 mg. We are trying to get her used to the increase before giving her the 200 mg at the other 2 doses too. The drug is not wearing off but rather it doesn't do much for her at the strength of 150 mg. My mom takes Stalevo crushed and has done it this way for over 5 years now. She will not swallow medication so this was the only way to have her take it. Sinemet is far to weak to do anything for her so this is why we have kept her on Stalevo but she takes .50 mg Mirapex it too. So far she has been walking a little better since this increase from a week ago. She had dyskinesia from just .25 mg Sinemet but for now none on the increased dose of Stalevo. Who knew?
  22. Morphine in hospice care

    This form of slow death is torture. I'm so sorry Genden. My mom is skin and bones now too but that's due to C-diff which really knocked the life out of her. I hate this process of life and death. It's really not fair. Tedybrs - sorry about your loss.
  23. What is considered too much protein?

    Dr Okun, Over the weekend I put Silk soy milk in my mom's oatmeal for breakfast. An hour later I took her outside for our daily walk and she could barely pick up her feet or straighten up. On the carton it shows one serving has 8 grams of protein. Do you think that interfered with the absorption of her PD meds which she took an hour before she ate? Today I switched her to Rice Dream milk which only has 1 gram of protein per serving. She didn't exactly do a marathon but at least she flowed better than yesterday. Does it really make that much difference or do you think it was just a coincidence that she reacted that way with Silk?
  24. What is considered too much protein?

    At the beginning stage of the disease my mom could take her meds right after a meal and it wouldn't make a difference what she ate. If someone was protein sensitive it could happen later in life and not from the start?
  25. American Ninja Warrior

    I remember that guy at the beginning of the premiere episode showing bits and pieces of all the contestants. He was shaking pretty bad.
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