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  1. 2 points
    Depending on the individual such proclamations like "you have X amount of good time left" can become a self fulfilling prophecy. The person starts to expect a certain rate of progression and lo and behold they get it. Kind of a reverse placebo effect. I much prefer a doctor tell me the truth, and if that is a particular limited time with good quality of life, then tell me that. But with PD, especially at the beginning it's much better to just say that it could be a few years or decades or never before PD robs enough quality of life to call the good years over. Everyone is different in terms of symptoms, how they progress, how much a given symptom affects their perception of severity, reactions to meds, and so on. Maybe after your MDS has been observing you for 5+ years they'll be able to make a decent prediction for the future.
  2. 2 points
    https://www.michaeljfox.org/mobile/news-detail.php?changing-course-jimmy-choi-story&os_cid=fb-a1b36000006Wh5y listen to Jimmy Choi’s story...he talks about how a doctor told him about how many years he had until he would probably need a wheelchair or other assistance.... LAD
  3. 2 points
    Enjoying this post - I'm 7 years in and doing much better than I imagined when I was diagnosed. I can't do half of what I used to be able to do but it's the other half that I'm pleased about. We're all different but also alike in so many ways.
  4. 2 points
    My best sucess is having something on my mind beside PD.lol I
  5. 2 points
    Thanks for all the good wishes everyone. I have been getting lots of advice from a man in our parky group that lives not that far away. He tells me too that I need to slow down and recover. I should know that too. Sorry for the panic attack. His name is Rob and he had the same opration as I did, at the same hospital at the same clinic. I did get my stitches (wire ) out yesterday in town. I have lots of help here at my house with neighbours cutting my grass. I still have trouble with my sore shoulders and that is an old problem. And .today was a better day. I slept better last nite and that clears up my head as well. I still have a long wait until it is programmed and turned on. I look forward to that day. In the meantime , I need to get the pill routine down to a better scedule which seems to be a bit less than I was taking before. Thanks everyone for your help.
  6. 1 point
    Summary: I am looking for a fellow Parkie that is interested and capable of extended overnight backpacking trips in the Tennessee area, with the express goal of possibly attempting a thru-hike of the Appalachian Trail (AT) next year. The initial trips would be 3-5 day overnight trips to determine whether or not we actually like it; our capabilities; test gear to find what works the best; and get in shape. IF all of that goes well, I want to attempt the AT next year - with the itinerary open to discussion (northbound, southbound, flip-flop, etc.). I am located in West Tennessee. Any tips or suggestions about finding a hiking partner, fund-raising, raising awareness for PD, etc. would be appreciated. Detail: I am a 46 year old male diagnosed with PD in 2011 after noticing the first clear symptoms in 2008. I was forced to leave work (Registered Nurse) in July 2017 due to a loss of ability to hand-write, type more than a few sentences, adequately control a computer mouse, fatigue, and dystonia in my right leg - among other symptoms. I was approved for DBS surgery last fall, but decided to hold off for a while due to several reasons, such as an improvement in my symptoms after leaving work and the realization that once I have a generator pack installed in my chest I will no longer be able to carry a backpack. Once I left work my stress levels dropped dramatically. I started exercising, eating healthier, and taking vitamin supplements. My walking improved dramatically, and I found that I was able to go hiking. Since then, my wife and I have taken several day hikes including two days on the AT up to the top of Roan Mountain and across the balds north of Carver's Gap. I had no problems and loved every minute of it. I intend to have the DBS surgery probably in 2020, so I feel like next year is my final chance to thru-hike the AT if I am ever going to. To be clear, I have not decided 100% that I am going to do this. That is why I want to take some shorter test trips this year to see if I can handle multiple days of hiking and camping. My wife is employed and won't be able to go, but I feel that I would be more likely to finish if I have a hiking partner. Plus, if the other person has PD as well, hopefully we can be more understanding of each other's abilities and limitations; as well as raise awareness of PD along the way. Thanks in advance for your assistance. Kevin
  7. 1 point
    Thank you, Dianne, for this very useful information. I had never heard of websites such as patientslikeme. It sure will be appreciated by all. Mireille
  8. 1 point
    There is a website, patientslikeme.com, that has the UPDRS as well as the Hoehn & Yahr scale your doctors use. You can track your symptoms over time. They even have a handy printout you can take to doctor visits. Check it out! Dianne
  9. 1 point
    Marcia: LOL!!!! I always love your dry humor!! We all do. Dianne: You continue to be a special role model to us all. I admire your approach to life, especially in light of the very, very difficult things you have had to work through over the years.
  10. 1 point
    It’s funny you should say that. I have a cat and three rabbits from the shelter in addition to our very old Labrador! A large part of my life is caring for animals.They definitely get me out of bed. I have also joined a lovely group of women in my neighborhood for community service projects once or twice a week. And I read or play cards with the little neighbor boy nearly every day. And even though she’s in high school, I pack a lunch for my daughter on school days. Since my husband moved I have also taken over care of his small garden. With some thought and planning I putter around slowly about four hours a day. Doing something nice for someone else every day is the thing that keeps me feeling relevant.
  11. 1 point
    Love the snowflake reference!!!
  12. 1 point
    In addition to all the good advice you're getting here consider this: 1. When you "drop cigarettes" don't pick them back up. Research nicotine and PD and you'll find there is some active research into whether nicotine has a role in alleviating PD symptoms. If you need to continue to self-medicate, use a less destructive route of administration (gum, lozenge, patch). 2. Caffeine has also been shown in some research to correlate with improved symptoms and/or enhanced medication effects. The only non-medical activity that seems to matter is exercise - which you can and should do (Rock Steady boxing, mountain cycling, running, swimming etc.). No matter whether you're diagnosed or not, this will be the start of your future (protection against all manner of illness). Also you might want to go online to find Federal government PD researchers recruiting volunteers (https://www.ninds.nih.gov/current-research/focus-research/focus-parkinsons-disease ) (likewise the Michael J. Fox Foundation). It is possible to get your diagnosis refined by one of the medical centers conducting research.
  13. 1 point
    We usually titrate up as you have done and we keep going until all bothersome symptoms are alleviated or improved, however in many cases you will not reach 100% improvement. It is important to get the upper limit from your doc (some will go to 4-5mg per dose) but also to monitor and have your spouse or family member monitor for side effects such as impulse control disorders and dizziness/GI symptoms (among others).
  14. 1 point
    Missing a meal or eating junk food doesn't seem to noticeably effect to much. Unless it's more than a meal or two in a row , besides the feeling like I ate terrible . Stress and anxiety throw the tremor into overdrive . Everyone will say avoid stress at all cost , but unless you live in a bubble stress is a reality of life . How you cope with the stress is the key . And for that the answer is probably as diverse as any question addressed on the forum . Preemptive strikes on stress only last so long ( exercise and such ) . I haven't found a " in the moment " relief to stress yet that is effective . I know when my family tries to deflect or keep stressful situations away from me , it stresses me even more . I would rather be involved than be treated like I am sick and need to be shielded . I will be following this also ,maybe someone has an effective way to deal with the in the moment stress . Dan
  15. 1 point
    We are so lucky to have the Ask the Doctor and Ask the Pharmacist forums here. Dr. Okun and Mark Comes have been so helpful (and patient!) with my many questions. Does anybody know of a similar forum somewhere where I could ask a question of a physical therapist? Thanks. Diana
  16. 1 point
    We could all write to the Administrators and ask for that. We used to have an Ask the Dietitian (or was it Ask the Nutritionist?). It never hurts to ask. Dianne
  17. 1 point
    Hi Chris, just a thought...If you are thinking to buy any kind of Insurances, do it now prior being diagnosed in your medical recod. I was either rejected for my Life Insurance or rocket prices. Take Care, PD
  18. 1 point
    I tried Mirapex and it didn't work for me... Felt horribly tired and just could not overcome the side effects. I really wanted it to work but after almost 2 weeks of misery I gave up... Azilect on the other hand does help and I don't find I am impulsive, just less stiff and feel a bit better when I take it... Funny thing is in the couple years before any physical symptoms and no meds is when I was most impulsive... I bought cars, toys, fancy vacations... It was like I was seeking filling a void and once I got whatever it was it was still not enough... I researched this a lot and seems to be a part of our reward circuitry failing as the dopamine levels deplete... We tend to need bigger and bigger extremes to "feel that natural high" that used to come as easily as smelling a scent or a good song... Now for me very little gives me this sensation anymore... Guess sadly my dopamine is just too low... If the advise is for you or someone else I would suggest taking to the doctor about it for one... Beyond that I would also try to find a "free hobbies" to do that wont end in bankruptcy... There are gambling type games that do not involve money... Buy a Playstation, play cards with friends...
  19. 1 point
    You are not obligated to tell them anything about your health status, and generally it's illegal for them to ask. Choosing to disclose a PD diagnosis is a tricky decision. It is very situationally dependant. For some, especially those working for small employers, or the government (whether local, state, or federal) it can be advantageous to disclose. Often there are quotas (whether admitted to or not) in government work for having a certain percentage of people with disabilities on the payroll. And many small employers are more like a family than a corporation so they will bend over backwards to help you cope. But some, like me, work for a large corporation, and as good as they are (for most things) I don't trust HR, or senior management, and farther than I can throw them. So I keep my mouth shut about PD at work. Granted, meds keep me well controlled for now. If that wasn't the case I might feel compelled to disclose rather than risk being accused of being drunk or on illegal drugs. But, exceptions to the above abound, so take careful stock of your particular situation before you make a decision either way on disclosure.
  20. 1 point
    Hi Superdecooper, it is funny you call it sleep jealousy.It's like we are now in a kind of sleep competition with our dw.I see it differently,because of our situation.I doubt if any pwp ever gets 8hrs of sleep without sleep aids.If you get 6hrs of sleep with Azilect,that is a big deal.I know that if you stop any PD meds the symptoms will reappear,and unfortunately we are in this for a long run,unless there is a breakthrough for a cure one day.I understand the "why me"question still lingers in the minds of most parkies,because acceptance is a difficult struggle,especially as a young pwp.I guess the earlier one accepts this new journey,the better.It is tough on everyone including the families.Hope is on the horizon,they say.May the major breakthrough happen in our lifetime.Stay positive!
  21. 1 point
    Hi, smalltown. We're always so glad to hear that the posts have been helpful to those visiting our thread. Thank you for letting us know, and we hope you'll continue to contribute and participate! I can especially relate and understand your point of how very helpful it is to keep focused on the reality of the Lord and of His promises to us and how instantly calming that is when stressed out. Every day, many times during the day, it's something I think about and lean on when I've accomplished only one or two things on my long list for the day. And great idea to start your days with worship music, too. It's also nice to see you've contributed something by Tozer. I look forward to reading what you've shared, and I know it will be good, and helpful. May the Lord bless you and continue to provide so many things that are helpful to you and that show His love and concern for you. I'd love to hear more of your walk with Christ. A sister in Him, Linda
  22. 1 point
    High frequency over 130 ( I prefer 100 if it keeps tremors under control, 130 is still okay not too high) and high pulse over 60-90 ( prefer 60) width and high voltages are needed if your tremors are not controlled properly but it will also cause tightening of muscles in your throat which can cause speech and swallowing and freezing issues. So it's best to keep everything below above mention limits to avoid side effects. Mono polar settings (-) also very good at keeping tremors under control but can lead to speech and swallowing issues. Bi polar (-+) settings is a good option to try if you have side effects. Low frequency, bi polar settings, low pulse width and low voltages are key to reducing side effects and will also extend your battery life substantially close to 8 + years. Reducing one parameter may need compensating from another. E.g. You can go with a higher voltage if you keep frequncy low under 100. It will even out battery wear since low frequency reduces battery usage) It's about finding the right balance while keep all these parameters low as possible which can extend battery life and reduce side effects .Also, medtronic patient programmer allows changing of frequency. So you can ask your programmer to,give you that option. So you can experiment on your own. Be sure to use your groups in your programmer to try new settings until find the perfect one which may take several years of trial and error programming. Be precistent about programming. Most important thing is to select proper electrodes. So be sure to see an expert programmer like Sierra Farris in Colorado or Pam at UF Florida if you not satisfied with dbs results. I still believe dbs should be the last resort as dbs will likely give you new set of problems to deal with and to,understand it's mechanism is not easy and you will be at mercy of your programmer and neurologist after surgery who will likely blame any post dbs problems to disease progression. You lose you independence after surgery in a way as you have to constantly reach out programmer for more new settings if you are not satisfied with them.You can't undo this surgery. You are stuck with it for life despite what they call as reversible. speech side effects are the most notorious side effects that is very difficult to correct post dbs
  23. 1 point
    My experience is if you have to sacrifice your voice to gain a benefit from dbs as with most dbs patients, think very very carefully if the trade off is worth it. Once you lose your ability to communicate with people properly, it can lead to depression as you will have to hold off your emotions without expressing them to others. Other people will also stop talking with you as they can't understand what you are saying properly. This is the worse part. You will feel isolated as you are living in a bubble.
  24. 1 point
    Personally, I've got a problem with all of it. When words can be redefined at will, the fabric of society is destroyed. When truth is relative, then we are lost. The TRUTH is that Bruce Jenner is still a man, pretending to be a woman. The TRUTH is that Rachel Dolezal is still white, but pretending to be black. The TRUTH is that marriage is between a man and woman. Anything else is not marriage, even though some may pretend it is. The TRUTH is that I have PD, whether I accept it or not. If we call PD "Health", we are still sick.
  25. 1 point
    I get these same "zaps." I've always attributed it to the anti-depressants (SSRI's such as Celexa and SSNRI's like Effexor). Have you ever tried stopping those? WOW! Major electrical zaps! Kevin
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