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  1. Past hour
  2. Good morning!!

    We weeded stuff out cause we moved and downsized. Then there is still more to do. I've decided it never gets done. Two weeks till neuro appointment. I hope he puts me back on old pills. I can't do hardly anything. DH is doing most of what I used to do. If you really want to keep stuff you don't use, have a large attic.
  3. Today
  4. Getting to thankfulness

    And really, really, really thankful for Doc, my wonderful service dog who brings light into my life every minute of every hour. Sorry, Doc, for leaving you off the list yesterday. Bill.
  5. question on c/l manufacturers

    Johnny Good to hear from you again. There has not been much is the subcontracting anymore. What seems to be the big, and I mean big, issue is that so many companies that make c/l are buying up other companies that make c/l. Some companies that have never produced it in the past are buying up companies that make c/l. This is causing many issues of back ordering and out of stock issues of certain brand of generic. As you know, once you find a company that works you want to stay with that company. So that is the main headache now. I think the out sourcing to smaller companies seems to be a thing of the past. As always, I hope that helps and please keep me posted. Don't be a stranger.
  6. Yesterday
  7. What caused your Doc to suggest DBS?

    I had good luck with my dbs the thing to remember is its brain surgery and will take time to recover
  8. Just diagnosed at age 40

    Welcome! Diagnosis at 46. Aware that how it impacts me varies from you and vice versa. Doc said, "each case of PD is different", which has led me down a path of inquiry into the unique way to treat my version. Lectin Free Diet Intermittent Fasting High Intensity Cardio 6 x per week Methylated Folate with B12 D3 Fish Oil Magnesium Less computer time more meditation time CBD 25:1 (reside in state where it is legal) Sending care to you,
  9. Acupuncture and Parkinson's

    LR3, GB34, and GV20 are the three main points mentioned in the article. I studied veterinary acupuncture. These points are specific to "wind" disorders. I guess I can try needling myself so see whether it helps. kaypeeoh
  10. Getting to thankfulness

    I have Dementia with Lewy Bodies, which is parkinson stuff and dementia stuff, and I am 67 now in my apartment at a CCRC on my way to memory care, later than sooner I hope. Thankful for disease? Hell no. Thankfully for still being able to breathe and know I'm here, hell yes. I thankful wife and my son and his family. Thankful that I was able to put things in order financially for everyone. Thankful that I have good care. Thankful for being able to see others here like me who also can still see some of the good things we still have to be thankful for. Bill.
  11. Just diagnosed at age 40

    Dear Amy2beth, Dear kat2017, I too am a young onset. Was diagnosed at age 34, some 30 years ago. I took Ldopa (Modopar) right away, as I wanted to enjoy my "young years" to the fullest. An enjoy I did, I even had a baby at 40. I am still taking Ldopa so don't believe those who say it only lasts 5 years. I also had DBS surgery in 2000 and 2002. Being diagnosed with Parkinson's is not a death sentence. You can lead an almost normal life (with reasonable expectations of course). I worked until I was 55, but enjoyed a very favorable job environment in Brussels (Belgium). I have the chance also to have a very dedicated husband who cares for me. I am sure others have provided good advice ( i haven't read all contributions). Welcome to the club. Come and join us in our fight for the cure ! Mireille
  12. Newest DBS system st Jude's

    It takes few years to get dbs settings optimized provided they implanted leads with millimeter precision. Don’t make any judgements until at least 6 moths. Go to an expert programmer like Sierra Farris in Denver if side effects worsen
  13. Infinity DBS system - issue

    It takes few years to get dbs settings optimized provided they implanted leads with millimeter precision. Don’t make any judgements until at least 6 moths. Go to an expert programmer like Sierra Farris in Denver if side effects worsen
  14. Newest DBS system st Jude's

    Hi i have the same device
  15. Infinity DBS system - issue

    Although I had this symptomatic relief the disease seems to be progressing and has worsen with the side affects of the medication. Freezing and Dyskinesia was one of the major side affect of the medication which was disabling my social interactions and professional life. The doctor’s advised for the STN DBS for getting back to the stable state means where we will have minimal fluctuations of the ON/OFF state. The doctors assured that I will make a remarkable change after the surgery. Surprisingly we are not able to achieve the expected result from DBS surgery and even if we get the result we were not able to sustain the outcome for a day or two. Currently at 4 doses of sinemet and 2 doses of CR along with left side voltage 4 and right side 3.Even then we are not able sustain the results.
  16. Newest DBS system st Jude's

    IJust wanted to let you know that I had the Surgery on 19-sep the DBS device is from st Jude infinity directional lead.Surprisingly we are not able to achieve the expected result from DBS surgery and even if we get the result we were not able to sustain the outcome for a day or two. Loss of Balance and destroyed gait Impaired walking without support ( Wheel Chaired) Depresssion Had been to multiple programming sessions with my MDS but no help.Currently on 4 doses of levodopa and 2 doses of CR with DBS.
  17. Getting to thankfulness

    So, no, on being thankful about this illness. But yes on being thankful for the positive changes it has inspired in your lives. I guess you are saying the level of positive activities and awareness of the joy of life has increased. you recognize how precious life is. And PD has inspired you to take chances and live the fullest life possible. Maybe those choices would not have been made without you getting sick with a progressive brain disease. I'm not there yet. I'm still in the process of getting a diagnosis but I need to keep my head up during this difficult period of life. it gives me hope knowing that other people can survive this, and even thrive. -S
  18. Getting to thankfulness

    I am thankful to have been blessed with the years I have lived, the experiences I have had, and the family and people around me. PD has fined tuned my priorities and sense of time like LAD discussed. We are all going to die some day, few get to choose, and I do not take the next hour or day for granted. I am just as vulnerable to be killed in a car wreck, or due to the mistake of someone else, by some other disease yet to come-- who knows? I look ahead and not behind. PD is another personal challenge in my life and Lord willing I will continue to deal with it.
  19. Getting to thankfulness

    Not thankful for the disease...no way... But it has made me thankful for the good stuff in my life. It has changed how I view things. I have a seize the day mindset and have gone on some great adventures. My husband & I discovered dancing and that would NEVER have happened. So I'm thankful that my life is good despite the fact that it's different. But I'll take a cure and be real thankful for that!!! LAD
  20. I bet 50% of PwPs (persons with Parkinson's) have been fed garbage as you have. I'm on a mission to 'drain the swamp' so to speak. Please listen to a few of my podcasts here: http://www.blogtalkradio.com/upbeat_parkinsons_talk_radio
  21. Getting to thankfulness

    Why would anyone be thankful for being sick? No, not so thankful for a shaking hand, or PD mask, or memory problems, or word search problems, or...or...or.... Nope, not so much.
  22. Hi Mark Ive written you before about my difficulties with myoclonus.Last march I found changing brands of c/l helped alot.They went away for almost 5 months after 3 years of difficuly tthen I had my CPAC break down.they came backAfter it was repaired they went away.Same thing happened after a trip to Denver change is altitude I think.Came home east and went away.Then they slowly came back.I also cut out my sr50/200 as the jerking started after I started using it 3 years ago.It does seem to worsen with the sr so Im trying just a 25/100 before bed I've also been taking 100 mg comtan along with 1.5 25/100 3x a day.Ive also added vitamin d for less sunlight I wonderI heard manufacturers can subcontract the drugs out to smaller companies and wondered about quality So far no success almost 5 months wonder what you might have to say about it. thanks john
  23. Last week
  24. Just diagnosed at age 40

    Hi amy2beth, I was diagnosed 16 years ago at the age of 33. I am now 49 and doing really well. I am fully independent and still working full-time. I have been on C/L the entire time (currently on Duopa, a pump infusion of C/L...it works great at managing both the symptoms of the disease and the side effects of the medication). My main issues are bradykinesia, rigidity, gait/balance issues, and dyskinesias (the result of long-term C/L use). Don't let the PD diagnosis get you down. It is true that we all progress differently; however, young onset PD is usually a slow progression overall. I have two children (9 and 13) and a wonderful wife. PD just becomes part of who you are, but it is never the sum total of who you are. You will learn how to adapt and live with it. We are here for you. It's not always easy...good days and bad days... Sometimes I am strong and can offer advice. Sometimes I am weak and need a shoulder to cry on. So much is happening in the PD world...new medications and treatments due to vast research. Hang in there. Lean on us as you need to! Peace and blessings, Mihai (Michael)
  25. Mylan C/L On Back Order?

    This is a problem all over the country. When I spoke with pharmacist and the company's I get the same answer that it's on back order. I wlways recommend that patients get their refills as early as possible, which is usually when about 80-85% of the medication is gone. This will then allow you to be able to save up extra in case of an emergency. I hope this helps a little and please keep me posted.
  26. Side Effect of Lorazepam?

    Jill, Sleep is so important for everyone, but especially for people with PD. Sleep is the only time the dopamine cells we have are able to replenish themselves. This is because we don't move much, therefore our muscles don't use up as much dopamine. I'm glad I could help and please keep me posted.
  27. Namenda

    I'm so glad to hear that. Please keep me posted.
  28. Namenda

    Thanks Mark. So far so good with Namenda. Best, Michelle
  29. Mylan C/L On Back Order?

    i'm also having problems getting those mylan drugs so settled for ACTIVIS CR which i tried maybe 2 years ago and thought was less effective than MYLAN, haven't tried the new ACTIVIS CR RX yet. my independent pharmacy was able to get mylan 25/250 so asked my dr. to write a RX which he kindly did. i think there's going to be more carbidopa/levodopa supply chain interruptions, either climate related like the hurricane which disrupted C/L in puerto rico, ingredient shortage related, other manufacturing problems or recalls so common sense says have at least some extra 25/100. teva selling their generic teva 25/100 and 25/250 to MAYNE was not in the best interests of pd'ers to say the least since MAYNE also obtained activis from TEVA and that's the C/L they are selling, not TEVA's formula. at least that's my understanding.
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