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  1. 2 points
    Probably the "10 good years" is an average based on ALL PD patients. Many aren't diagnosed until age 75 or so, and are already on the decline in general. 10 good years for them would be great! Remember, the average of 100 people age 75 who get 2 good years and 100 people 40 years old who get 20 good years is.....11! So, don't sweat the numbers. Exercise and stay positive.
  2. 2 points
    .Good morning. I have not been online very much of late, I think I have grown lazy. Actually no, I think not, more like it has been tricky typing since I had that operation in Toronto about 4 weeks ago now. That bilateral DBS procedure. I had a geat 3 days of honeymoon following that. Crazy, I almost forgot anything was wrong with me except for the picky stainless steel staples that tried to pull my bushy eyebrows up to my receding hairline. My shoulders are not operating quite right yet but the kinks are slowly getting worked out. Sore rotator cuffs I guess they are but I can get them moving when they do get locked up now. I have had them before. I am pretty much back to normal now, presurgery, which means my full run of pills and sometimes they catch and I feel pretty good, or they don't catch and I feel like I am encased in velcro restraints on every muscle. Or, if I were a surfer, the nice wave to ride does not arrive and I am left paddling circles on the big ocean of Life with Parkinsons before setting off for the shore with my paddling hands pulling me through the water, against the tide, the wind and soon I am back. Strange how the pills sometimes lift me to where I need to be and then other times I may as well of eaten those little fruity colored marshmallows. I am, "patiently awaiting the programing" which will happen the first part of July. I count myself lucky that I have the attention of terrific doctors of great skill, and great friends, I hope you are all doing good , and the people that surround me at home that help me do the things that I cannot physically do at this stage of my life. I look forward, patiently, to getting programmed and seeing how I feel. I have had my stitches all out, and my chest is all healed up where the stimulator and battery ride with me. I have not had to take hardly any pain medication. And yesterday I went for a haircut and my dog doesn't growl at me anymore. So now I will post this and patiently wait for July.
  3. 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.
  4. 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
  5. 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.
  6. 2 points
    My best sucess is having something on my mind beside PD.lol I
  7. 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
  8. 1 point
    Maral: Thanks for sharing. I have thought of you often and remember so well how devoted you were to your dh. May you find peace in the knowledge that he is no longer suffering. Adrienne
  9. 1 point
    My dear husband was diagnose at age 72. We suspected something not right about two years earlier. When he went for a physical he had absolutely no problems, all vitals right on, we asked then why he had tremors, was noticing difficult in walking. Doctor basically at that time brushed it off. Two years later he was diagnosed. He passed away this January and it was two years before that his speech, had to have a wheelchair, and memory started to progress. Again all his vitals BP etc was right on. This year it rapidly started to progress, refused eating, completely shut down. New Years Day I went to see him which I went every day, he was smiling we had some drinks and 10 days later he completely shut down. He died the 28th. Cause Thrive refused to eat, and Parkinson's. Kidneys were the first to shut down. So he had a short time as he was in much pain was on morphine and died a peaceful death. Being a avid reader and learning everything I could on PD being his caretaker, it appears what I have read that PD can progress much faster than someone developing PD in Younger years. Miss him terribly but so grateful he did not suffer long.
  10. 1 point
    https://ladpdjourney2.wordpress.com/ new post if anyone is interested....Happy Monday!! LAD
  11. 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
  12. 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
  13. 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.
  14. 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.
  15. 1 point
    Love the snowflake reference!!!
  16. 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.
  17. 1 point
    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.
  18. 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
  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
    This is such a fun, fun video to watch. Hey Ginger/LAD/Muffet--You and your DH, Fred, are in it. (Did you two time travel?)
  23. 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
  24. 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.
  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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