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carruthers209

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carruthers209 last won the day on June 3 2016

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About carruthers209

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  • Birthday 01/01/1970

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    Stockton, CA
  1. My husband has had Parkinson's for about 17 years. He's 73 years old. Having Depends has been such a benefit. We can now travel and not having to worry about urgent needs. I see that he needs to use the toilet a lot more frequently at home and we make extra stops while taking trips. Urgency is just normal now. Parkinson's is gradually taking more and more of his life-he's having cognitive processing issues but only I notice it, his walking is becoming very impacted-freezing and stutter walking is really bad at night especially when he has to get out of bed to use the toilet. He wears his Depends on a daily basis-no more wet pants. I worry about when he will start wetting the bed and we'll need extra absorption but then it'll get worse so sometimes we just need to be thankful for where we are now and not dread the future. I am so sorry you both have Parkinson's. That is such huge unfair burden. If you think DBS might be a possible choice in the future, the neurologists are now promoting it at an earlier age because the outcomes are more long-lived and beneficial. My husband had a DBS operation and it was almost miraculous. He wasn't restored to his pre-Parkinson's state (which is what everyone hopes). He even got his smile back-hadn't seen that in a couple of years. His neurologist never suggested it-we asked for it and then his neurologist put the process in motion. It takes months of testing, assessment, and waiting for the surgery so starting earlier is also a better plan. I see where your husband is waiting for the VA for disability. My husband is on VA disability. I hope that is in place for you because the financial help is amazing. I see he is taking 8x per 24 hours. This caused dyskinesia in my husband which was helped by Amantadine for several years until even that wasn't working and then DBS was the next logical step. Best wishes to you both-Christy
  2. My husband had several accidents several years ago and we made the decision that he start using Men's Depends. He's been using them ever since-no more worries about wet pants. We actually should have done it sooner rather than later and avoided those embarrassing situations. It's such a benefit to not have to worry about loss of bladder control. It's Parkinson's, not a reflection upon the individual. Hopefully your husband can make the adjustment; it should hopefully help reduce his stress level and let him get on with enjoying the visit.
  3. Tai chi is one of the most recommended programs for Parkinson's members and having your wife along will benefit her also. My husband has attended his senior center's tai chi class for many years and he thinks it saved his life from a much faster progression of Parkinson's. He has better balance and coordination. There are several Parkinson's members in his class-and we always recommend this program to our support group. One enthusiastic member even gave up his cane and feels like a new person. Plus attending a tai chi class gives you a great social group-which is another huge benefit for the Parkinson's community. As the disease progresses it becomes more socially isolating for the individuals which tends to make the disease progress faster. This is a great long term activity that you should be able to enjoy and find great benefit.
  4. Thanks for the information about Xadago. It sounds like it has potential that could reduce dyskinesias and providing a longer "on" time. It seems to be a beneficial drug for the Parkinson's population that needs the Sinemet on a frequent basis that induces dyskinesia. My husband was in that population. He was also on Amantadine that reduced his tremors until that no longer was effective. He has now had the DBS surgery which is a great blessing and given him the gift of quality of life. I know many Parkinson's patients who don't qualify for the DBS surgery and continue to suffer from tremors and dyskinesias. Do you see this drug as being an especially helpful therapy for these patients and also when my husband's DBS benefit is reduced due to the progression of the Parkinson's? Is this drug even on the market yet? If it is, do I dare ask how expensive it is? Thanks! Delete Options
  5. This is such good news. I worry about when my husband reaches this stage where his Sinemet fails to work and he is freezing a lot. What additional information can you give us about this newly approved drug?
  6. Is your husband eligible for palliative care? Being bedridden is a large challenge and you will need help to keep him from deteriorating if possible. There should be some skilled nursing help available to give you guidance and recommendations for what he needs. If you can get a rented hospital bed for him you might find it very beneficial in needing to turn him and diapering him. We paid $23 a month to rent the hospital bed via Kaiser's palliative care program. It allowed him to watch TV because we could raise his head with the hospital bed adjustment. We also bought an air pad with holes in it to help prevent bedsores on the nurses advice. I didn't think my dad would like it but he said it was fine. He had Alzheimer's so his powers of reasoning were limited. There is a lift called a Hoyer lift that might help you if you need to get him out of bed. Your medical group would hopefully provide in-home visits. There are transportation services that can provide a full bed gurney to move him from home to hospital and vice verse if it's not an emergency case-you'll probably have to pay for it but sometimes you just need these transportation options. Again, try to get signed up for palliative care-it's not hospice but similar and can provide in-home skilled nursing help, possible physical therapy, occupational therapy, inhome bathing services, etc. I've tried Safeway online grocery delivery services to my home and I found it excellent. The groceries were delivered to our home for about a $10 to $12 per visit cost-which was a reasonable charge. I could order everything on line from the grocery store and the groceries were bought to our home and brought into the kitchen. The selection was excellent-the ice cream bars and popsicles were still frozen. I also tried Amazon Prime Fresh Choice but it wasn't as good as Safeway. Best wishes to you and I am so sorry that your husband is bedridden. It's so hard to watch the loss of independence and your world shrink as your husband's needs grow. Counseling might also be available-it's good to have someone to talk to and help you process your grief. And it is grief-I'm so sorry.
  7. Thanks Quietstill for your great advice in the above post. Parkinson's is such a huge burden on families who are just trying to do their work and be good citizens. A bad boss is a nightmare and adds so much stress to a condition that gets worse with the added stress. It is also so scary to try and navigate labor situations in which you find yourself overwhelmed with the fiscal realities of needing to support your family. You gave the Librarian truly useful strategies and great potential outcomes for situations that are beyond his control. I would add to the Librarian to be sure and document everything-that's said, done, written, etc. because this documentation will become invaluable when needed down the road. His boss has a boss-probably quite a few of them. Hopefully there is someone with a conscience that can pull the Librarian aside and let him know that there are other options open to him. Also there is also something called a "hostile work environment" that can be documented. ADA has federal legal rights but sometimes I think companies just figure they're the cost of doing business. When my husband came to the end of his career-couldn't meet the quotas put on him-and was close to getting fired, he went to HR who gave him the papers to give his neurologist and his neurologist signed his disability paper. My husband was two weeks away from being fired-even with the Parkinson's so clearly impacting his ability to do his job. Once your physician signs the disability paperwork-and this is where having your paperwork really helps that clearly documents how your Parkinson's impacts every single task you do-you are on disability. It's done and over.
  8. http://www.medicalnewstoday.com/articles/314407.php Here's the article from Medical News Today. The title of the article is "Could Marijuana Use Increase Vulnerability to Alzheimer's?" It's a synopsis of an article in the Journal of Alzheimer's Disease, same journal in your article but this is very recent research and the article in MNT was dated November 29, 2016. I cut and pasted the following quote in the article: "Our research has proven that marijuana users have lower cerebral blood flow than nonusers. Second, the most predictive region separating these two groups is low blood flow in the hippocampus on concentration brain SPECT imaging. This work suggests that marijuana use has damaging influences in the brain - particularly regions important in memory and learning and known to be affected by Alzheimer's." I hope marijuana can be a helpful therapy for Parkinson's and I suspect like everything with Parkinson's, it will have a very individual response. I'm glad Larry was able to get some relief from his severe dyskinesia and probably a significant reduction in stress. It was painful to watch his dyskinesia. However, like all medications marijuana seems to have some serious downsides. I am concerned about the reduced blood flow to the brain since neurons depend on the the blood vessels to provide all the necessary biochemical resources to keep the neurons alive and functioning. If blood flow is reduced to the dopamine neurons that can't be a good outcome for Parkinson's patients. I'm guessing it's going to be a trade off.
  9. Someone sent me this same video a few days ago and I watched it. Here's my limited understanding of what I think I saw. Larry is suffering from extreme dyskinesia because he is on 20 pills a day. He's already had DBS so that's not an option. Marijuana is a depressant-it slows down the neuronal activity so that's my best guess at what is happening. It probably also reduced his stress. The limited medical marijuana research that has been posted has very mixed results-some people benefit, others don't. I wonder how long the medical marijuana dosage lasts- It looks like he's really in extreme distress so it's hopefully a therapy that will help him. Other Alzheimer's research has demonstrated that marijuana is not good for Alzheimer's-it slows the blood flow to the brain and especially the hippocampus which is where our short term memory is stored and why Alzheimer's patients can't remember something they've just done.
  10. Sorry about your diagnosis. Unfortunately these alternative therapies don't pass the test of scientific research. Please spend time on the Michael J. Fox Foundation which is a premier research center. There are free webinars to watch that might address your specific interests. The webinar today on alpha synuclein protein dysfunction might explain why amino acid therapy won't work. If these therapies really worked this website would be buzzing like crazy to spread the word. You might try asking Dr. Okun from Ask the Doctor about effective therapies. There are beneficial foods that you can put in your diet-omega 3s, green tea, etc. Even turmeric which is almost a miracle food has a huge problem-it won't pass the blood-brain-barrier. Most of these for-profit therapies use testimonials and other non-scientific methods to make people think they are beneficial. Remember the placebo effect works also. We are on the cusp of some truly exciting and potentially beneficiary therapies according to the alpha-synuclein webinar I watched on the Michael J. Fox Foundation today- but they are only Stage 1 tests on the FDA approval list-years of more studies to go.
  11. Your insurance company sounds like a nightmare. This is brain surgery-unless it's the battery placement in which case the surgeon will open up your chest to insert the battery pack. You might pose the question to "Ask the Surgeon" on this NPF website. Dr. Okun or Dr. Foote do DBS surgery and they can answer your question. Each hospital has an "ombudsman" and that individual, with considerable authority, is supposed to be able to intervene in medical issues that you want to refer to him/her. I can't imagine them not keeping you overnight if you've had brain surgery-that doesn't sound possible.
  12. Wow-don't like reading those restrictive practices that some hospice groups are setting up. Yes, it sounds like they are "for profit" and not the patient centered treatment we want. My dad was on palliative care first and then hospice with Kaiser's Medical. We were never given these restrictive requirements. Kaiser's is a non-profit-no stock holders to push for higher profits. Please check into palliative care. Palliative care is relatively unknown to the general public but can provide excellent services which your husband may need. Palliative care is much more open ended and less restrictive-you can still have the drugs you need to continue your therapies. Palliative care is set up for debilitating illnesses, not for end-of-life-care. My dad was on palliative care before he moved to hospice care by the same nonprofit medical group-Kaiser's. They came to the home to provide the needed services and could be called for medical advice. If he needed services that required a hospital, they told us to bring him in. It's patient centered, not bottom-line centered.
  13. www.washingtonpost.com/national/health-science/for-stem-cell-clinics-new-scrutiny-from-federal-regulators/2016/09/12/7b101896-7540-11e6-b786-19d0cb1ed06c_story.html?hpid=hp_hp-more-top-stories-2_stemcells-955pm%3Ahomepage%2Fstory#comments The above article from the Washing Post is about how stem cell treatments in this country are not being regulated by the FDA which is actually quite shocking since inserting stem cells of undocumented derivation in one's body seems to me quite an invasive medical procedure. I've seen an ad for stem cell treatment for Parkinson's by a Seattle stem cell company. The scientific research is lacking and mostly it's testimonials from the patients which could very well be the placebo effect.
  14. Shopguy-thanks for the background on nilotinib. Aducanumab (does this name mean something? I can't even pronounce it) has now been fast tracked by the FDA because of the huge potential good that might result from a truly beneficial drug for Alzheimer's. What are the other immunotherapy drugs you see as having more potential benefit for Parkinson's? I would like to keep track of them and their progress. I see where the Michael J. Fox Foundation is sponsoring research for a vaccination drug that might also benefit existing Parkinson's patients if it demonstrates efficacy.
  15. http://www.nytimes.com/2016/09/03/your-money/caregivers-alzheimers-burnout.html?em_pos=small&emc=edit_my_20160906&nl=your-money&nl_art=0&nlid=58498262&ref=headline&te=1 This NY Times article, while about Alzheimer's, could have been written for Parkinson's. Sacrifice, financial loss and burnout take a terrible toll on the caregivers who themselves become ill and in need of support. There are some good strategies listed.