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  1. 3 points
    If it’s not Pd, you are commenting on wrong forum.
  2. 3 points
    I'm glad to hear that a rehab psychologist helped you so much LAD. I had never heard of one until Dianne mentioned it. It's something I will keep in mind. Saturday I started to go emotionally down hill again but it helped tremendously to just sit on the porch and take a break. Thanks to Dianne's post, I knew I had to stop and honor the "revised" me and realize I can't expect myself to accomplish everything I could pre PD. jb-the absolute best part of your post was when you said your symptoms were being handled nicely with the dbs surgery and equipment. I'm so glad to hear that. AND that Dianne is a Parky Whisperer-no truer words have been spoken. She's so gracious to offer a word of encouragement to us all though her own trials have been many. Marcia Good to hear from you. Thanks for taking the time to retype your disappearing post. The combines will be out in the fields soon. If I see Christina the Paperbag Princess out there I'll tell her "Hi" from you jb. I would go looking before they harvest the corn but that'd be too scary. LOL I'm thinking of Steven King's Children of the Corn. I'm going to go lock my doors. Feet to the sky everyone! Good Night.
  3. 2 points
    Hi Gardner, It's to bad integrity has declined so much today in medicine..Money sure does play the major part today in our local parkinson care.I've been getting along well,havnt seen a PD doctor over a year.last call for my comtan it was declined as inappropriate.This is the way center of excellence operates today. My major concern are for those who lost control of their meds and are now in nursing homes.One wasn't doing so bad but got talked into and now is in a very perilous state.He Has been very confused yet also walks without support,never falls or has no difficulty swallowing his food or choking.Yet I was told by this family member that he is on a fast decline.I also know he is medicated to control his med caused confusion.he also has lost a lot of weight.he also is carried for by our local center of confusion clinic. I turned his case into a patient advocate and waiting if he will be helped.Others here are either unmedicated or over medicated.Most should not be in any nursimh home if they had compassionate care. Also no help from the parkinson foundation,national or local. One idea I have is starting a PD org run by us and hire our own doctors who have no connection withe corporate state of medicene. We could also hire our researchers also. Things will get better if everyone votes.
  4. 2 points
    Hi all. We've been driving around.. We drove through the states and then up to PEI. It is so beautiful. Everyone had tons of flowers. The discussion moved to people who can not cross that long bridge to get to PEI. One way was to distract yourself with other things or thoughts. But can't do that if you are the driver. Another way was to take a boat across. But you would be closer to the water . There was another way but I forget what it was. It's very intimidating. I labored over crossing a couple weeks before we went. The trip back I was reading something and was across before I knew it. I vote for distraction. I sat and gazed ahead making sure I didn't look at the water. I also thought why did I make such a big deal of it. Parkinsons is worse. That didn't make me feel better. My DH wanted to see both coasts so we went to the West Coast which is very long ways and Atlantic Coast. Marcia
  5. 2 points
    If they said it’s nothing, why don’t you move on? They do this for living so they probably know more than you
  6. 2 points
    He has used a shower chair before, further unsteadiness and we’ll go back to it. I replaced the bath mat, cut and fit two together to make a better pad for him to stand on. Much better, he had his confidence back today.
  7. 1 point
    I have had 3 surgeries since being dx with pd i found that my pd seemed to get worse after each one and it took longer to recover
  8. 1 point
    It probably doesn't matter. In my practice we use immediate release.
  9. 1 point
  10. 1 point
    If there’s anyone out there in the York, Pa area that wants Rock Steady Boxing-look us up! I’m a Coach and a young onset person with Parkinson’s! ROCK STEADY BOXING YORK LAD
  11. 1 point
    Hi Kai, You are right - this has more to do with my own expectations than those of others. I wish I could take care of my grandson so he didn't have to go to daycare and I miss going on sister vacations. When I was diagnosed my younger sister, who has down syndrome, was living with me. She was like a daughter to me but I had to make the difficult decision to have her go with another family member. I don't have visible tremor (I do have internal tremor) so my most troubling symptoms are not apparent to others. Thank you for your thoughts and good luck on this journey. Gardener
  12. 1 point
    Hi Gardener, I was also diagnosed 7 years ago and struggle with fatigue. Unfortunately many times family members only see the visible symptoms like tremor and don't understand the cognitive and internal challenges we have. Although its good to push ourselves because that's sometimes the only way we know how far we can go, it has to be balanced with learning to listen to ourselves and and our bodies and take a slower pace when we need to. I understand the want to "power through" and not letting on to others that you can't do it, but it's a strategy that created a lot of stress for me. I found it was not so much my family's expectation of me, but more so my attempt to keep hanging on to what I used to be. If your relationship with your family is such that you think having a more formal discussion about it is the way to go, then tell them about how fatigue is a major symptom and that sometimes you won't be up for doing things. In my case I did it more casually when specific things to do came up, I'd just say "that sounds great but I'm feeling a wonky today and will pass but thanks for asking". After saying that a few times, they got it. Regardless of which way you go, have some self compassion for yourself and find the rhythm that's right for you now and don't feel like you have to keep up with others. Best to you. Kai
  13. 1 point
    I have been getting Botox injections for about a year now for foot dystonia. The results are different for everyone. The Botox helped some of the foot dystonia but not 100%. I would recommend it as some relief is better than none. My MDS coded it focal dystonia. My insurance paid for it after I met my deductible. Ask your MDS about a rebate check from the Botox company. You submit claim along with EOB insurance sheet online. You are able to do this for the amount your insurance does not pay. I have received two checks from the Botox company. I have now met my deductible so I can no longer apply for a rebate check. !-800-44-BOTOX The Botox Company is Allergan.
  14. 1 point
    Nice poem Superde. This is a great thread to go to for a pick me up. Thanks.
  15. 1 point
    Hi guys.. Haven't posted in a little while been a bit down but in saying that jb always cheers me up...thank you jb you have your uses ... I love your photo LAD...take care friends, to be continued ... Em
  16. 1 point
    We do not delay Sinemet in our practice. We believe it is a safe and effective treatment. The doses and the intervals should be adjusted by someone with experience but waiting until 50 years old is not a rationale we have personally used in our practice. Hope that helps.
  17. 1 point
    I use Vimeo for video and Flkr for pictures. You upload them and then share them by copying the URL. Copy & paste the URL onto your post. Hope that’s understandable. LAD
  18. 1 point
    Good morning, jb and all who read this thread. I am better than good; I am at peace with every person and situation in my life so far today. Of course, that is not always true, I am fearful at times, and frustrated at other times. Thankfully, those times don't last. I went to Rock Steady Boxing again yesterday. We had ordered T-shirts and were happy to find they had arrived. My current caregiver takes me 2-3 days a week. She keeps me from falling by holding me with a gait belt. My feet shake inside my shoes these days, and my MDS has told me in no uncertain terms that I am not to fall again. I find I am steadier and stride more boldly forward than was the case six weeks ago. I have generally less pain and more stamina. I have a video and a picture to share if anyone (perhaps LAD?) could tell me which program we can use to upload them. Over the years it has changed a couple of times. I read some slides from the WPC 2016 online yesterday. The topic was non-motor symptoms. The presenter asked the question, "Does your MDS focus primarily on motor symptoms?" I was neither surprised nor dismayed to note that my non-motor symptoms are progressing along with tremor, rigidity, and bradykinesia. For example, I experience more apathy and slowed cognition than in the past. I have much more difficulty with my autonomic function now. My body can't maintain the equilibrium of blood pressure and temperature any longer. When I see my MDS in September, I will make sure we talk about both motor and non-motor symptoms! The technical term is dysautonomia if you care to research it. People without PD can experience it, too. Wishing you all inner peace with touches of joy. Dianne
  19. 1 point
    Good morning, yes it is. Cause it feels like fall. We have had nice rains lately. A sweater feels good in the evening now. It has been so hot. I hope that everyone has had a great summer and weekend just passed. Everyone should go back and reread the poem about laying hens by Peace. Mr Descoop wrote of his encounter with a bear.(different threads) Lots of talent online here I think. Lori, you said you were going tothe beach. Where is that where you are. With your blessings. Nice looking family. Papa Jack, you were at the last echo Beach. I made sure that you got picked up in the shuttle cause you are from Wisconsin and I like cheese. I knew that you would bringing cheese for the pot luck buffet. And besides. you were the designated surfboarder instructor and did an excellent job of it. And the cheese was excellent. Mrs, Pathfinder, I hope you are well. Any apple pie left in your freezer, Soon be time for new ones to go in. Linda, I hope you have a good day and everyone else too. Like Dianne, and my longtime friends Emma, and the mighty Marcia. Fist to the sky, we will win. jb
  20. 1 point
    my blessings are many! ps..new blog post today! https://ladpdjourney2.wordpress.com/ LAD
  21. 1 point
    Last night i wanted to go fishing.many of my fishing friends have given up the sport.old age loll Well i went alone and caught three nice big salmon Moral of the story true fishermen never grow old including Parkies Lol Have a nice John Ps if ypu live near me i have lots of good salmon
  22. 1 point
    Dealtsea, I am not aware of any shortage of Rytary. By the sounds of the text message it appears that the pharmacy is ordering the medication through it's warehouse which usually takes about a week to arrive. I don't want to say it is a bad pharmacy, but I would make sure to talk to them and have them assure me that this issue will not happen again. Many pharmacies have an electronic ordering system which usually takes a month or two to catch up with the number of people on a certain medication. I usually recommend that after you have a conversation with the pharmacy that they are given one more chance to rectify the situation and gain my trust. If they fail to do this there are many other choices out available. I hope this helps and please keep me posted.
  23. 1 point
    While it's true that many who have Parkinson's have lost their sense of smell, it is not a reliable indicator for the presence of the disease. You can have Parkinson's and still have your sense of smell. I do.
  24. 1 point
    Update on baby Liam....all is well. He was born on October 18th, a couple weeks early, but healthy! I did end up back in the hospital with a blood clot, but am home now enjoying my kiddos, and loving our new addition <3
  25. 1 point
    Another update.. my daughter continues to amaze me. She is a very healthy 3 1/2 month old. She surprises all of us with her strength and determination. She is very active...rolling over, inquisitive, holding toys and quite opinionated! My symptoms I developed during pregnancy have not improved. It appears they are permanent. As she gains weight I worry about safely picking her up. I have adapted a halo swaddle blanket with a sling type strap to give me peace of mind when lifting her. I can manipulate it with one hand. My left side continues to lose movement and my left arm/hand is progressively weaker. I still am able through creative techniques to provide any and all the care my daughter needs...yes I ask for help when I need it. I did the same with my older children prior to this disease. I will never regret the birth of my daughter. Everytime she smiles at me it melts my heart. I pray everyday I get to see this beautiful baby girl grow up. My children are what keeps me strong and fighting. bless u all.
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