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  1. Today
  2. Bright side I guess

    Hey Stump, I've started swimming every day, rain or shine, because exercise is supposed to slow progression - I'm in the early stages of this and I'm all about not having this progress into me taking buckets of medicine each day. But I guess the bright side for me is that I've dropped from 252 lbs to 237 lbs since early December. I'm swimming about 1 mile a day, 6 days a week. So, there - a bright side, I suppose. -S
  3. Which Medicare Insurance to Choose?

    Thanks for clarifying that Duopa is Medicare B. Yes, years in the future. Good to know. We actually tried to get a Datscan back before she became totally discouraged with search for a diagnosis. They wanted to do one at Kirkland Center in Birmingham and were trying to get it set up, but they are so compartmentalized/organized/disorganized as to be ineffective and non-responsive (good neurologists, I think, but bad organization). Shortly after that experience her neurologist at Vanderbilt told me that Datscan carried a high probability of false positive. He said basically that we likely would not know anything more if we were able to get the test. I am sorry we did not pursue it more at the time. Puzzle pieces are hard to come by on the "undiagnosed" bench. But her mental health was suffering from the build up/disappointment cycles and we had to just stop looking Ten neurologists should be enough! And here I have taken my own thread off topic! Thanks for your input on this. It helps and anything additional you or anyone else can think of is welcome! John
  4. Botox injections, anyone?

    I've had Botox for dystonia in my neck with very good results. Dianne
  5. Which Medicare Insurance to Choose?

    John, to clarify, the Duopa pump, and the cassettes with the intestinal carbidopa/levodopa gel are billed under Medicare Part B, as Durable Medical Equipment. They are only available from two specialty pharmacies in the US. The likelihood of your wife needing Duopa is some years in the future. One test your wife might need in order to confirm a diagnosis of PD is a Datscan. Medicare paid for mine (in 2013, it cost ~ $11K at the County Hospital. At the University of Washington Medical Center, it would have cost $15K). Others in the Forum have had difficulty getting it approved by their insurance companies.If you search the Forum for DAT or Datscan, you may find posts that mention this. Dianne
  6. Will the situation ever stabilize?

    Sorry I had not read your first post where you gave more information about your mother before I posted my reply. After reading your first post, my recommendation is the same—find a Movement Disorder Specialist, a neurologist who further specializes in movement disorders including Parkinson’s. Your mother might have one of the Parkinsonisms which a Movement Disorder Specialist would recognize.
  7. Will the situation ever stabilize?

    You don’t tell us how long your Mother has been diagnosed or what stage of Parkinson’s she is in. I am so sorry you and your Mother are dealing with these difficult and troubling issues. Does she have a Movement Disorder Specialist who is overseeing her care? If not, that would be my recommendation. A Movement Disorder Specialist that you have confidence in can be very helpful in helping you through difficult situations. Sometimes an ER visit is warranted, but in my experience the ER doctors know little about Parkinson’s and the visit is less than helpful.
  8. Which Medicare Insurance to Choose?

    Thank you, Dianne, This is helpful and gives me much food for thought. In our case, the network part isn't a problem as this is a group MA plan and pays the same in or out of network. I understand that the commercial UHC MA plan is not accepted by one of our local hospitals, but the group MA plans are accepted (I have tested this). I will have to ask questions of my pharmacy about Duopa. That part would not be covered under a Plan F anyway but would be under the separate drug plan I would have to get with the supplement. The deny of coverage is something I had wondered about but was not sure how that would apply to PD patients. What are the expensive items they might be concerned about with PD? Thanks for your input. John
  9. Good morning!!

    Awesome, jb. As always. Quite a creative, imaginative mind you have. Did you tell stories to your kids when they were little?
  10. Good morning!!

    . Good evening everyone Good call Dianne , spring approaches. Cheered on by LADy. The buckets were hung on the trees with care, with hope that the springtime soon would be there. oops, wrong poem,, I think its a little early yet but everyone else was jumping to it. I put out 30 as a token start. Another 70 to go. and totally unrelated to anything: Well, that is it for the great outdoors for another day. It is now dark out. The animals change shifts. The doves go to roost, replaced by the hoot owl and the rabbits shudder. Puppies get called in for supper and a place by the warm hearth, the void in the outside darkness fills with sneaky and bold racoons who check the wire and wonder if the chickens are all safe. The pesky black squirrels cuddle up in hollow tree trunks, exchanging stories about bird feeders and sunflower seeds as they fall asleep. With one ear open to the possibility of big toothed pine martins coming on for the night shift and looking for sleepy squirrels. The daytime squeaks were likely just cute song birds tweeting news around the trees. But when the sun is down the same squeaky sound plays to the minds' ears like the sound of a weasel finding a nest of mice. And was that yowling sound at the back door one of my old toothless Tomcats telling the night sky about his younger days when he ruled the barn or was it a wild Cat! Yes with a capital C, and nobody can even say what a wild Cat is really. Cripes what just made my WALMART automatic motion sensor light come on outside. I was going to go get my gloves that I forgot in the car so that they will be warm to wear in the morning. But neighbour Roy said the guys at the feed mill told him that Peter saw a big cougar, and of course: "yes it was a big one" he had repeated. Did he say it had red eyes, and a sore tooth, I got other gloves to wear anyways and I am too damn tired, yes too tired to go out into the dark right now. That is why I have more than one pair of gloves he reassured himself and sat by the dog at the fire. He settled in for a little nap and fell into a deep sleep, waking up to the sound of howling coyotes across the field and the weight of the young dog jumping into his lap. It was scared a and quivering at the sound of his distant relatives that never got near a hearth; the pack were just making small talk with upward pointed noises to the man in the moon asking him how they should divide up this bag of fish guts they found by the fishing shacks at the river,. Meanwhile in the house by the fire on the lazy old boy recliner, the dog quvered in sync with the man's Parkinsons tremors and he finally had to laugh at himself and the pot licking dog.In the morning I will have to tell Peter about these coyotes across the field, and that field isnt very wide he now reasoned. Did I say coyotes, cause I am sure now that they are Siberian Wolves, Big and hungry and fearless they are! In the dark that is. That is pure fiction everyone, I am not afraid of the dark if anyone thinks that was about me. Sleep well you all. jb
  11. Which Medicare Insurance to Choose?

    I prefer regular Medicare plus a supplement plan as well. When I was on the United Healthcare Medicare Advantage Plan, I could not get the walker recommended by my PT as best for PD because I was forced to use a UHC network provider. I could not be treated at the University of Washington because they were not a preferred provider under the UHC plan. Without regular Medicare Part B and my supplement, Washington State Apple Healthcare, my Duopa would not be covered at 100%. I've been to conferences about PD where various Medicare Plus plans have representatives tell me that if I have regular Medicare and Apple Health, they can offer me a better deal. I show them my Duopa pump and tell them that this one medication costs >$6000 per month. Suddenly they are no longer interested in getting me to switch. Once you choose a plan, you can only change during the open enrollment period once a year. Choose carefully. I have been getting emails asking me to write to my US Senators and my Congressional representative to ensure that any new health care plan includes Medicare Advantage Plans. It seems these plans may be in jeopardy. Once your wife has a confirmed diagnosis, some plans might be able to deny her coverage. In this volatile time for insurance and the healthcare industry, I prefer to stick with as solid a plan as possible. Dianne
  12. Yesterday
  13. Good morning!!

    I'll take spring !!
  14. Early PD and vigorous exercise

    Papa57- you may get knocked down 9 times but you will get up 10.....maybe a bit slower but you will keep getting up !!!! LAD
  15. Which Medicare Insurance to Choose?

    OK, I hear that sometimes, but I want specifics. If you or someone has had a problem, I want to hear. What specifically have you been denied?
  16. Which Medicare Insurance to Choose?

    Stay away from Advantage Plans. Plan F or G IMHO would be best as a Medicare supplement
  17. Early PD and vigorous exercise

    Having a bad day today. Thanks for the positive posts. It motivating.
  18. Trying Sinemet

    Can't help on the agonists as I've actively avoided them. I'm too worried about some of their side effects, particularly sleep attacks.
  19. Trying Sinemet

    That's good advice Stump. My next appointment is this Friday. I'll discuss it with my Dr. What do you think of trying Artane or Mirapex again. Do you think it might work better for tremors than Sinemet?
  20. Does this seem normal? Sleep attacks?

    Hi, Carol. Is your mother seeing a general neurologist or a Movement Disorders Specialist (MDS)? An MDS has extra years of training specific to PD and is much more likely to know what medications will work best. Dianne
  21. Botox injections, anyone?

    Hey guys, has anyone had boxtox injections for dystonia? Did they work and what are the pros and cons? share your experiences please? -S
  22. Parkinson's Disease & Dementia

    I'm very sorry for your loss.
  23. Parkinson's Disease & Dementia

    She has had over 10 + UTI tests in the past year. All of which show no UTI. I don;t think dementia happens over night either.
  24. Hi all, I guess I am just frustrated. My sister and I have been dealing with my mother's decline for the past 10 months and it has been intense. It's as though she can never catch a break and there's always a new curve ball being thrown our way. We are in a constant cycle of dealing with inaccuracies from the pharmacy, fighting with insurance to continue PT/OT, to then have changes in her meds cause bizarre side effects. I feel like we are always trying to make the decision whether or not to go to the ER. Every time we end up in the hospital we come back with less answers and more test results that have no conclusion. Each time she is there it only just make my mom feel disoriented and sad. I can't believe this is her new normal. Any advice would be appreciated here.
  25. I am wondering if anyone has input on this issue. My wife has not been diagnosed (not for lack of trying) but has symptoms similar to Parkinson's and also some possible dementia. She will turn 65 in a couple of months and we have a one-time open enrollment and can choose any insurance plan to go with her medicare without questions. The way I see it, we could choose a comprehensive supplement such as plan F or a Medicare Advantage plan. She can have a MA plan from her former employer that looks pretty good. It is a plan I know because I am already on it. The MA network is not restrictive at all and out of pocket is $3500, about as low as I have seen. My only concern is over tests or procedures that might be required that they might not approve, whereas the plan F would approve anything allowed by Medicare. I think these would have to be pretty special procedures, beyond normal imaging and other things that have become routine. So what say you? Are there any procedures that may be common in PD or dementia that would possibly raise a flag with an insurance company? Any experiences good or bad with either type of plan?
  26. Does this seem normal? Sleep attacks?

    Thanks so much for the list! That was super helpfu! Wish her doctors provided something like that at the start of it all! We are trying to reduce her off of Mirapex. It's not going so well. We have been trying to figure out why her neuro gave Mirapex to begin with too.
  27. Hello, I posted a while ago about sleep attacks for my mom. In that time they have reduced her Mirapex. She was taking .25mg at 6am, 12pm, and 6pm along with Sinemet. While at the hospital they dropped her morning dose. In the past week we tried to drop her 6pm dose as advised by her neuro. Maybe this was too close together in a reduction? In the past week she has had 3-4 "episodes" that involve crying, disassociation, depression, and suicidal ideation that last for 3 hours. When it is over it's like she can't recall what happened and is back to her self. It's awful to watch. Yesterday she had 3 episodes. We are hoping to hear back from her neuro today. We are unsure if we should add back in a dosage to see if she stabilizes and then try to reduce her more slowly. Does this sound like DAWS? If so, is there treatment for it or does it sound like she should go back up on her Mirapex dose? I also posted in "ask the doctor" Thanks,
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