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Everything posted by carruthers209

  1. carruthers209

    Bladder control

    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. carruthers209

    Bladder control

    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. carruthers209

    Anybody Find Tai Chi To Be Helpful?

    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. carruthers209

    More informabout Xadago (safinamide)

    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. carruthers209

    FDA Approves Xadago- From FDA Website

    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. carruthers209

    Preventing pressure sores

    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. carruthers209

    Reasonable accommodation help?

    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. carruthers209

    Amazing video results of medical marijuana

    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. carruthers209

    Amazing video results of medical marijuana

    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. carruthers209

    Amino acid therapy

    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. carruthers209

    Overnight stay denied!

    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. carruthers209


    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. http://edition.cnn.com/2016/08/31/health/experimental-alzheimers-drug/index.html The Alzheimer's community is also holding its collective breath about aducanumab from Biogen which is demonstrating plaque clearing in Alzheimer's brains. The plaque in Alzheimer's brains is a different protein-beta amyloid-which is also destroying the brain neurons as they collectively spread throughout the brain. Alzheimer's starts in the hippocampus which is the short term memory and spatial part of the brain in which immediate and daily memory is stored until it moves into long term memory after a good night's sleep. The damage in the hippocampus is why Alzheimer's patients continually repeat their statements, questions, etc. over and over. They can't remember that they already asked the question, etc. Anyway, aducanumab may be the answers to those prayers for Alzheimer's patients-this research is conducted on patients instead of mice so the hope is enticingly close. Alzheimer's affects about 5 to 6 million Americans and this is the most hopeful news so far. The Parkinson's and Alzheimer's communities might have good news over the next few years-we can only hold our breath and hope!!
  15. 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.
  16. http://www.apdaparkinson.org/cognitive-changes-in-parkinsons/ Thanks again to Kathrynne Holden from Chew on This-which is becoming my daily go-to resource for Parkinson's knowledge-for the article on "Cognitive Changes in Parkinson's." It's really good to read through this article because it clearly lays out where logical thinking, processing and memory are just not happening-well, at least not how we are used to living our lives. I've noticed my husband's declining cognitive functioning. He's been having trouble retrieving naming words (nouns) but now it's progressing to where he's slower at logical thinking, gets distracted very easily, forgetful, etc. We just went on vacation and he forgot to bring his remote for his DBS battery and he walked through the airport security screening machine-great! Fortunately we got through the vacation without any "events." I need to be more on the ball with this and aware that I can no longer expect him to remember important things. He's mentioned he wants me to be aware that I will need to watch his checking account in the "future." Forewarned is forearmed I guess.
  17. 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.
  18. Parkinson's and Alzheimer's as well as the other neuronal diseases share (in a negative sense) some of the same frustrations-there is no cure, the actual causes can only be conjectured, and the sheer complicated biochemistry and biology of our neurons eludes definitive answers. With Parkinson's the statement is that it's a "prion" like disease in which toxic proteins cause a cascade of damage. The proteins misfold in both Parkinson's and Alzheimer's. The research articles for both nilotinib and aducanumab report very similar benefits from the plaque clearing that these drugs provide and then patient improvement is reported and the rate of progression of the diseases is slowed down. Neither is being reported as a cure. Alzheimer's is the great fear for most people-one out of every three people after the age of 85 is projected to get Alzheimer's and the financial toll is devasting and projected to bankrupt Medicare. My guess is that huge amounts of research money will be spent on speeding up the research and getting products to market. If the progression of the disease can be slowed and improvements in cognitive function demonstrated, it can be the "game changer" promised in the headlines.
  19. The Parkinson's community has been waiting many long decades for "the cure." Kathrynne Holden from Chew on This posted an article from Stemgenex in which a Parkinson's patient gives a testimonial about how improved he is after his stem cell treatment. We used to pooh-pooh all these stem cell treatments because they were from questionable clinics in foreign countries. Now the stem cell treatments are being offered here in the US for Parkinson's which seems implausable because the research has not demonstrated the claims. I asked Kathrynne about this posting and she concurred that there are no research studies that she is aware of that substantiate the company's claim for Parkinson's disease. She will be tracking down true research results when she gets the time. What is being offered is only testimonial and we all know how unscientific that process is. There was a company in Germany, X Cell or something like that, offering stem cell treatment for Parkinson's and patients who were desperate would go there and post about their "cure" only to need another treatment in about 8 or 9 months and then we never heard from them again. Finally the German government shut them down. An infusion of stem cells may very well lead to a short benefit but then the Parkinson's disease seems to continue the process that kills the dopamine cells and the disease continues its relentless progression. I don't know what the companies are charging but it can't be cheap-and definitely not going to be paid for by Medicare. Stem cells obviously have a positive benefit in certain circumstances-but not yet in Parkinson's-the factors causing the death of the dopamine cells has not be stopped. I wish the news was more hopeful but we just not there yet.
  20. Your co-workers are clearly out of line and your work environment is "hostile." If I were you, I would start to document word for word what is going on because as a person with a disability, you do have some legal rights. Losing your job is a devastating event and you need to be able to put in writing how your disability is causing a "hostile work environment" and stress makes your symptoms worse. Get your notebook out and keep track daily of the statements that others are making, what your bosses are saying, and how you are struggling. There is a pattern of harassment going on here and once you start writing down word for word what is being said, you will have a clearer picture of these events. It will also help you gain a better measure of control-psychologically this is important. Your symptoms will progress, I'm sorry to say, so you need to try to protect yourself and your employment. Tell your boss about your disability and notify human resources. My husband was close to being fired when he got his application from human resources to have his neurologist fill out and then he was able to claim disability. You might also want to look into Deep Brain Stimulation surgery. It gave my husband back his smile!! He had been turning into a zombie and he's much happier and has regained some of the quality of his life. This surgery is now being done for younger patients because they have better outcomes. Your insurance should pay for it because it's on the approved government list. Good luck.
  21. http://parkinsonsnewstoday.com/2016/06/20/nasal-spray-may-ease-parkinsons-disease-symptoms/ Kathrynne Holden posted an article in her Facebook page Chew on This about a research report on using a nasal spray to dispense glutathione which is severely depleted in Parkinson's patients and has potential benefit for physical improvement. Using a nasal spray might be an effective new way to have it pass the blood-brain-barrier. Another trial is being planned according to the article. The key phrase here is "Scientists think PD symptoms might be alleviated by GSH supplementation."
  22. carruthers209

    Easy Way to Support the NPF- Amazon Smiles

    That is an excellent idea and costs the individual nothing. These forums are very special and there is nothing else like them on the internet. They are a huge benefit to the Parkinson's community and it would be good if everyone would sign up for the Smile Amazon program. I spend a lot of money on the Amazon website and I'm sure the Parkinson's community on this website numbers in the many thousands-the benefit could be huge. So-do a good deed and sign up!!
  23. For those of us who really enjoyed and benefitted from Ask the Nutritionist-Kathrynne-that forum is now no longer open. It is a read-only thread which means you can still research and read the previously posted threads but we can't post anymore. How sad!! A hyperlink was posted for Kathrynne's Facebook page so I clicked on it but couldn't seem to get anywhere. It was the "about" page. You need to click on the "timeline" hyperlink if you want to access her Facebook site. I cut and pasted the "timeline" page below. We sure miss having her to answer our questions and post all the new research. I don't know why her forum was discontinued but there are references to her as being "retired" on her Facebook site so that may be the reason but I am just guessing. Anyway, below is the hyperlink. https://www.facebook.com/Parkinsons.Chew.On.This/timeline
  24. carruthers209

    Kathrynne from Ask about Nutrition is read-only now

    I agree that it really seems abrupt and somehow strange that Ask the Nutritionist wasn't properly acknowledged and thanked for her wonderful services to the Parkinson's community. I would have liked to have seen a farewell or retirement comment to have some sort of closure on her departure. For you old timers-and you know who your are-ha-ha-I still remember the Ask the Doctor with Dr. Lieberman whom I found later on the Muhammad Ali Parkinson's site in Arizona. Anyway, a big, big thank you to Kathrynne for all her years of posting informative and interesting articles on Parkinson's research and findings and thank you for all the posts in which you answered my myriad of questions since I found so much that was puzzling and really appreciated your explanations and research on our behalf. Thanks also for the "Food as Medicine with the 10 Highly Recommended Foods for Parkinson's." We still have that for our support group!
  25. carruthers209

    My typical day as a Caregiver

    Thank you all for sharing on the caregiver's forum. This is such a difficult and challenging task as the disease progresses. You are all a blessing in their lives and by sharing with the rest of us, it shows that the mountain, while high, is not insurmountable. Please continue to post and share with us. This forum is a continuing source of information and problem solving.