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  1. 4 points
    jb here, so far, this program is much better, at least it does not make me want to unhook and hurl it all far far away. It feels different than a chemical pill treatment. I am taking a lot less Levadopa. Thanks for all the support here.
  2. 2 points
    I have agammaglobulinanemia (extremely low IgC and IgG levels) that was discovered when I first went to a doctor about some of my PD symptoms, This condition actually clouded my Parkinson’s diagnosis in the beginning. My then neurologist referred me to an oncologist because they thought I had cancer. After a plethora of tests to include a bone marrow extraction, I was given a thumbs up by my oncologist who is still baffled to this day because I don’t get sick even though I have no immune system. I get tested every 6 months and still my numbers do not change. My doctor said to not change anything I’m doing because it seems to be working for me. Drummergirl, it’s possible that PD is causing our low numbers. It would be interesting if some other people got their levels checked, on and off Carbidopa. Dave
  3. 2 points
    Stay strong jb. You have a huge cheering section out here. If you're really quiet maybe you can hear us. (we're doing the wave too!) Prayers for strength to all who find themselves in need today and for those with family members who need lifted up. Take care friends.
  4. 1 point
    Good morning, NCFred. Since you were so recently diagnosed and are still finding the best medication dose and schedule, your morning exhaustion could be part of that process. You might want to have a sleep study done to make sure you are getting enough deep REM sleep. I was surprised to discover that I wasn't breathing deeply enough to oxygenate my blood during sleep, which led to daytime sluggishness and sleepiness. Blessings as you navigate your way along the PD path. Dianne
  5. 1 point
    Hi Fred, Are you getting enough sleep? If not, it might take extra dopamine to get you going. Before I started Trazadone (which has been a miracle drug for me to help with sleep) the mornings were really rough. I'm still slow for the first couple of hours after awakening - it seems like that first dose just takes a little longer. Gardener
  6. 1 point
    I got dyskinesia on the second week of C/L. I take the generic C/L 25/100. My dyskinesia is a bobbing back-and-forth like I’m bowing.The way I manage it is to take a quarter tablet every one and a half to two hours. If my stomach is empty I take it and wait 15 minutes before eating. If I’ve eaten I wait 45 minutes after before taking it. If I simply cannot time the eating properly then I will eat something with as little protein as possible. I also take three dopabean capsules with enteric coating instead of the quarter tablet a couple times a day. I like the way it works like l-dopa but smoother, less dyskinesia. Very expensive though. I get dyskinesia at the beginning of a dose if I’m taking too much. But I also get it when I’m coming off of a dose. It kind of lets me know I am waiting too long and need to take the pill sooner. Since breaking the tablets into quarters isn’t a perfect science I break a number of pills at once and look them over as I take them throughout the day to pick the slightly bigger or slightly smaller one depending on how I’m feeling and what I need to do over the next couple hours. Many members of my immediate biological family are extremely sensitive to medications. I just assumed that’s why I started the dyskinesia so quickly. I barely have a tremor unless I’m under stress. But I am very stiff and slow without the meds. I didn’t start taking C/L until four years after my first motor symptoms.
  7. 1 point
    Hi Stump, It's the carbidopa- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5595290/ I have now have hypogammaglobulinanemia, Low IgG and IgM. I've been on a roller coaster of low grade infections and now Lyme's Disease...
  8. 1 point
    Hi everyone. I was on vacation at the beach last week, and it was so very nice. I took the chance to reflect on nature's beauty and get closer to my wife. thanks for the encouragement papa57. I try not to dwell on the what ifs, but living in the present sure can be hard when the future has changed so dramatically. I thought I knew where I was going, now I'm not so sure. I've always been a planner so I may have to revise that habit. I will find a way to keep looking forward with hope. Thanks for the compliment LAD - I'm a writer like my father before me. Yes, it's entirely possible I could use my talent in some way to advocate for Parkinson's. I haven't considered it, but will now. I'm becoming an expert on this disease as I try to figure out how to live in this new world. and cereus, it's interesting that you describe your body as feeling an invisible line. For me, it was more like having dead zones that were rebelling against my desire. Sinemet is an eye opening experience for me, even though I really haven't worked out when to take the meds consistently yet. The future's not written - and I don't want to spend too much energy worrying when today has so many opportunities. You may consider it a sneak preview, but those scenes may not actually show up in the movie. I'm finding that if you look at life through the mirror of PD, problems may appear closer.
  9. 1 point
    I've had nothing but problems with the meds! It took almost 4 months of increasing the dose and decreasing the duration to "find my dose", and the dyskenesias showed up about 6-8 months. I take 1600mg a day, in 6 doses. I had immediate reactions to C/L. Mayo told me they'd never seen side effects so bad. The goofy part is that the C/L works perfectly, and I also have every side effect except the black box warnings. The dyskenesias showed up about 6-8 months. In the first 5 months of C/L I lost 30 lbs, wicked vertigo, dizziness, orthostatic hypotension, constant sneezing, stuffed up sinuses, headaches, earaches, increased heart rate/BP, bloated, gassy, upset stomach, severe insomnia, Throat fuzzy, irritated. Constantly clearing it, Throat dries out even if sticky, coughing, any sensation of hunger totally disappeared. My voice is dry, hoarse, rough, gravelly sounding. I get crazy easy bruises which last forever and any wounds are very slow to heal. Lost 65% of my hair, massive fatigue and weakness, cardiac issues... It was nuts. I took the the yellow 25-100 for a year, but the switched to the 10-100 which helped the intensity of the symptoms. I've been on the10-100 ever since, and I'm not 2.5 years in. I've always been medication sensitive but it wasn't until January of this year that I finally knew why it was so bad- I have Mast Cell Activation Syndrome, most people know it from Asthma or hot spots in dogs. In MCAS your immune system is hyperactive, and doesn't identify what to do with medication properly. The mast cells (which are in every cell of your body) flood your body with histamine in an effort to get rid of it. It can be just as dangerous as a classic Ig-A or Ig-E allergy- you get the same anaphylactic response. My mast cell triggers are the yellow and blue dyes in the meds, along with some of the other fillers and binders. So, I now have custom compounded medication and trials to figure out what exactly in the C/L is also an issue. My Neurologist said in 35 years of practice- he'd seen one other patient who couldn't tollerate the yellow 25-100s, but did fine on the blue 10-100. He'd also seen one European patient who took Madopar in Europe (which uses beneserazide) who couldn't tolerate the American version with Carbidopa.
  10. 1 point
  11. 1 point
    Normally every six months, more frequently if need be Mireille
  12. 1 point
    I have the same reaction to sinemet at night. I was unable to sleep for a year until i realized that it wasnt parkinsons that kept me from sleeping but sinemet. Now i try to avoid taking sinemet after 3 pm and i sleep much better
  13. 1 point
    Hi, I had dbs August, 2015. Definitely helped with tremors and dyskinesias. I have struggled ever since, however, to get meds right. It's a constant problem. Also, I sleep far more than before. Just wondering what others have experienced. Thanks in advance!
  14. 1 point
    I had bilateral STN in 2013. The programming done at the start did not work as it should. Then one year later my Neurosurgeon acting upon my continuous complaints attacked the problem again and he had to start right from the beginning and reprogrammed the IPG. Needless to say we had more than 25 sessions of each one hour. Finally my two big complaints were solved. The leads are in the right place, but good programming is essential. Now I sleep more than usual and have a weaker voice. There are some cognitive problems and sometimes nightmares and oedema in the feet. But with the help of speech therapy, brain exercises, sleep regulating drugs and tight socks my Neurologist and I think that I can win the battle against PD but not the war. I hope this helps.
  15. 1 point
    Getting back to the original post... I've been very lucky in my PD progression or lack of progression. I have watched my neighbor with PD for over 20 years go from being completely in a psychosis state and sitting on my driveway to being completely functional now and exercising with me at the gym. His meds were messing him up. Too many different things. I would ask for a med eval. I'm not an expert but maybe that may shed some light on things. As for the caregiver... That's something I'm terrified to think about. I hope my husband gets some outside help so he can be my husband and not my caregiver all the time. It's unrealistic to think he won't be my caregiver but hopefully we can find some balance. Good luck to you. LAD
  16. 1 point
    Shakes, I edited my comment due to the misunderstanding. Our wives have a lot to deal with and I'm sure your wife has some extra stress with young children. One thing I have noted in my life is that most people you interact with are oblivious to your problems because they are focused on their own. I lose and get stuck on words a lot. It can be embarrassing when your having a technical discussion with a peer and can't find the proper word. Some people fill in the blank for me and I don't even think they realized they are helping me. I have not publicly disclosed that I have PD. Dave
  17. 1 point
    Actually, a pretty good post, IMO. I could have written it myself. I was extremely angered when my wife kept mentioning how her social life has been ruined by my lack of interest in what we used to enjoy together. I didn't ask for the change in out social priorities, and I certainly don't like it; but I considered it a guilt trip on her part. Was I being selfish? Maybe, but marriage is a two-way street. I need to understand her concerns; but she needs to understand that my mind is now different than before. I'm actually appalled by some of the responses here. I don't think you're a moron, and I don't think that you have to be "nicer to her" so she doesn't bail on you. You are reacting to negative cues like any other normal person would. Talk it out; do research together; and find common ground, if possible. If she doesn't attend all of your Dr appointments; bring her along and talk to the Doc! I think my wife and I finally worked through it, but it took a while. Hopefully, you can as well Thanks for posting!
  18. 1 point
    Hi Shakes, I haven't felt moved to respond to posts lately but your difficulties cognitively are very close to my own so I know what it feels like to lose the person you once were and adjust to the very different person you have become. I'm having a tough time with social interactions whether it is family, friends, or strangers. I feel comfortable in my own surroundings with my husband but beyond that it is hard for me to interact. I have noticed that I do not easily make eye contact and I'm aware that my facial expression is not revealing what I'm feeling inside. I have a hard time coming up with things to say to people so I tend to ask the same questions (boring!!). Unlike Alzheimer disease, I am aware of these difficulties which seems to make the problem worse. I'm quite a bit older than you and can easily avoid social interactions - it must be very difficult for you at your age with a young family. Make sure that the people you are closest with understand that the disease is likely masking your inner feelings and ability to engage socially. Hang in there. Gardener
  19. 1 point
    Your wife is under tremendous stress but is still relatively young and not the one with the disease. I would be nicer to her if I were you. She has every reason to bail on you and could do it. I understand you are confused and scared about the future but keep in mind that you are not the only one this is affecting. Please check your meds with your doctor. Sometimes too much can make your mind go blank. It is so tough to have this happen to anyone. Nothing will be the same ever again and what you planned on will change now. Hang in there.
  20. 1 point
    NicoleZ- thanks for the advice. I forgot to say I'm already on sinemet ER. Sorry about that . I am planning to add amantadine and will post of that helps.
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