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miracleseeker last won the day on December 9

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About miracleseeker

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  1. miracleseeker

    Off Label Prescriptions Approach to MDS

    Fred would LOVE to tell you more. 😀
  2. miracleseeker

    Neupro patch on time

    Can the patch cause brown color urine? My mom gets it at least once a day and then it's back to normal yellow color. I read online that it could be dehydration but she drinks more water than me. This started happening around the time she started on the patch so I don't know if it's a coincidence.
  3. miracleseeker

    Good morning!!

    Be well Linda. Life is hard. 🙁
  4. miracleseeker

    Nilotinib clinical trial

    Makes me nervous to think this is for people with cancer. Imagine the side effects.
  5. miracleseeker

    Assisted living with a GTube???

    Sounds like my mom. She was at 150 pounds about 5 years ago and now she's around 90 pounds even though she eats a lot of soft foods. I have been feeding her for years now because she would start off ok then loses interest and plays with her food instead. Good luck with staying at the assisted living place. It sounds very ideal so I get why you are stressed. Your mom is very lucky to have 2 daughters that care so much about her. Teamwork is what it's all about.
  6. miracleseeker

    Assisted living with a GTube???

    My mom came close to getting a tube in July when she was at the ER for difficulty swallowing liquids. I resisted getting one for her because I knew whatever was happening was temporary and I was right. Once a tube is inserted your mom would be prone to getting infections and it needs to be changed daily. Does your mom eat mashed up food or regular food? Is it swallowing that she has trouble with? Can she drink supplement shakes? I just think that even if you do find a loophole getting around allowing her to stay with the tube, the place may not be happy to keep her and may not treat her the same anymore. I hope you find a solution soon.
  7. miracleseeker

    Loss of confidence

    Thanks Coach. I do treat this forum like my journal so I can always refer back to what I was feeling at a certain time of my life. It's also good to see what meds my mom was on and what happened then. Most of all it's good to know there are people who can relate and know what I'm talking about. I hope more people will contribute and share.
  8. miracleseeker

    Loss of confidence

    Thanks for your kind words. I do have breaks which is when I have the time to think too much and feel sorry for myself. My mom's oldest brother passed away in Sept and then 3 weeks later her youngest brother's wife passed away. My mom is still hanging on despite being hospitalized twice since July. She is well as can be for someone in her condition but she has definitely declined since a few years back. I had a 3 hour lunch with a good friend recently. She is in her late 60's but still very active and healthy. She told me she does not want to burden her kids to take care of her when the time comes. I told her no one does but the kids should want to do it because it is the right thing to do. She resisted and said we have a difference of opinions on this. I think she feels this way because she did not take care of her own mother when she was ill and passed away so she won't expect that from her children. I know a lot of people are not close to their parents so to see what I go through for my mom is foreign to them. I do not regret the years I've spent caring for my mom while not having a life but I do have a lot of resentment for my siblings for not pitching in as much as they should. It's just much harder to face what's coming when I do not have the support I need. It shouldn't be this way. I'm tired of hiring strangers to help me take care of my mom and wondering when that person will quit and leave me stranded until the next one comes around. People that are just here for money and does not give a damn about my mom. The lack of TLC is very obvious. When will I have to quit my job at a moment's notice because no one wants this kind of responsibility for low pay? It's all on my shoulders and I hate it. Sorry to be such a stick in the mud but it's just one of those days.
  9. miracleseeker

    Loss of confidence

    It's now more than 2 years later from when I started this thread and things have gotten worse. As the year ends I reflect and say this has been a crappy year and I'm glad it's ending. Well.. I say that every year because I have very little to be thankful for. Why does life have to be so hard? People who have it all just keep thriving while the rest of us struggle. I can count at least 5 ex CG's from this forum that have lost their loved ones and it really saddens me. I re-read some of the previous posts as if it was just yesterday and can't believe how life has changed.
  10. miracleseeker

    "Levodopa Phobia" Case Studies

    My mom has a new doctor and he added Neupro in addition to Mirapex she already takes along with Stalevo. I asked him why not increase Stalevo instead and he shook his head and said c/l has a lot of side effects that he didn't want to get into if he increases it for my mom. I think it's just a matter of what's the lesser of 2 evils and I suppose he's basing this on feedback from his patients. Time will tell.
  11. miracleseeker

    Neupro patch on time

    My mom's MDS tried to increase it to 4mg yesterday but I didn't think he should increase to that much so soon so we compromised and he gave a 2mg and a 1 mg patch to try for a week before going up to 4mg. He is trying to replace Mirapex with the patch but I don't know how he will do that being all he's doing is increasing the patch while my mom is still taking Stalevo and Mirapex at her usual dose. My mom has last stage dementia so impulse control is not an issue anymore. Walking, talking, and thinking are all the things my mom can't do so what's left to benefit from the meds?
  12. miracleseeker

    has anyone seen this?

    Sorry to put a hole to this theory but my mom showed zero symptoms until half a year AFTER she had her appendix removed because it was rupturing. I have been blaming the surgery, anesthesia, and the heavy antibiotics given to her at that time. Imagine everyone starts to take out their appendix thinking it will be it. If that were true my mom and I wouldn't be going through this hell now for 20+ years. Hey... maybe it would have been different if she took it out when it was still healthy? Who knows?
  13. miracleseeker

    Neupro patch on time

    Dr Okun, My mom recently started on the patch. She was on 1mg for 7 days then increased to 2mg this week. So far I do not see any improvements other than a slight increase of strength in her legs to stand up when I pick her up from a seated position. I researched online on the patch and it said patients noticed 1.5 hours of increased on time vs no patch. How is that calculated when the patch is changed once every 24 hours? My mom takes Stalevo 150mg 3 times a day along with .50 mg Mirapex. This is done about 6-8 hours apart. She has off times through out the day so how would the patch help and where would that 1.5 hours of on time fit in?
  14. miracleseeker

    elect leaders who have integrity

    Too late.. here we go again. What is it with religion and politics? 😕
  15. miracleseeker

    New Caretaker/Drug Interactions

    Shopguy, You make a very good point. There are many levels of care giving. Celebrities with spouses that need help considers themselves caregivers but do they really do the day to day work of care giving? People that are vulnerable but are too proud to ask for help may need a caregiver to be a second pair of eyes or an extra pair of hands. Everyone needs help sooner or later and the more support you can get the better the outcome. I wish my mom was more independent from the start but it didn't turn out that way. Take care.