Jump to content


Popular Content

Showing content with the highest reputation since 04/26/2019 in all areas

  1. 3 points
    Tough decisions for sure. When my father was terminally ill they lived five hours from us. My children were nine and six, we went perhaps three times over the course of his last six weeks to be with him. The last visit I knew it was the last time I would get to be with him. I cried all the way home. The point is I did what I could do, having done that I could let him go with peace in my heart. You have to take care of your baby first and that should be your priority. You have proved a wonderful daughter supporting when and how you can. Find your path, you know your priorities and one does not diminish the other.
  2. 3 points
    hopefully I don't tempt fate by saying that typically I don't ever fall. Lots of pauses and freezing in my footsteps though. Hope everyone is as well as you can be . .
  3. 2 points
    10K I can relate to your feelings. My Dad passed in 2000. Dad had a genetic type terminal Leukemia that turns into a type b cell Lymphoma. I had a son from a previous marriage that his mom remarried and move away when he was ten over 1000 miles away. Before he moved away I spent every chance I had to be with him. I wanted to be his father and not disrupt his life. I read Pathfinders post about priority. My Dad was in and out of the hospital so many times and live in the same city. That it was easy for me to get to the hospital if needed. My Dad was like yours in that many times we were told he would not come home again. It changed many plans for the whole family. But when you are within a hour away it is in many cases easy to change plans. But in my life and I am assuming in your life as a child your Father made you his priority. He wanted you safe, well taken care of and happy. But most of all to turn into a loving person. A person that grows up to be a parent that must make decisions best for their children. There came a time where my father went into the hospital at the same time my son came in on a flight for our yearly week visit. I Knew at that time in his life how much that meant to my son. Part of that visit was a one on one small trip. Over a three year time of my Dads life I would say there were15 times my Dad had hospital stays where he would not make it. My son and I when he came into town from the airport went straight to the hospital to see his grandfather (my Dad). My dad told us to go as planned. We then left to go on our yearly one on one excursion. It was three hours away. I left a phone number to be contacted in case of emergency. We received the phone call. But we did not get back in time. My son and his step siblings are all grown up now. They all have children of their own. I am older now and have parkinson's that now appears to be something worse. At the time of my Fathers passing I struggled that I was not there. But now know that there are decisions we make by how we are brought up. My Father new when we are no longer are children and become adult we might move away. He knew that move could make a life better for his grand children. As he wanted to meet the needs for you! He would know he raised you to make the right chose. Your daughter is 5 months old. You just can't pick up and go. Your Father Knows you love him! Your mom in time also will know that your Dad would want you to keep your children the top priority. The same he did for you. Just my opinion. Grandfather PWP
  4. 2 points
    Greetings... Well, I am glad to say that this will be my last post on this thread. My DBS journey began in July of last year and is now complete. I am fully programmed and managing very well with only the brain stimulation. All of my symptoms and side-effects are effectively managed and I feel absolutely awesome. My next neurological appointment is not until July, at which time they will compare my DBS state with the "off" state to measure the improvement. It was a long journey, but a successful one. Thanks for all of the encouragement and support. You truly are a family and I am thankful for each one of you. Keep plugging away...PD should never be a death sentence, either physically, or emotionally, or any other way for that matter. Keep encouraged, keep exercising, and keep participating in research. God bless. I'll still be around quite a bit, but this thread is DONE!!! Hugs, Mihai
  5. 2 points
    Better day today, not as unsteady. Our doctor called tonight and no UTI so far, they are doing the culture. They will call us back if that shows something. I briefly told him what is going on with him. Told him I’d call next week for an update. have a great weekend everyone.
  6. 2 points
    I have had PD for 17 years and if I get enough sleep, I feel so wonderful that I could almost forget I have Parkinson's. "Almost", but the awareness of it never leaves my mind.
  7. 2 points
    So sorry your Mom is dealing with yet another facet of PD. I don’t know how you are still managing her care, arching backwards is scary! I can’t imagine how difficult it would be to deal with that. i hate when the doctor isn’t available. It does us no good to call the service covering for the doctor, they don’t know the nuances of my husband’s issues. Same going to the ER, almost isn’t worth it!
  8. 2 points
    Hi! I’ve only posted on these forums a few times, but I’m a confirmed “lurker” for quite awhile. I couldn’t resist chiming in here about problems with protein interfering with medication, and here’s what has finally worked for me. I’ve been dealing with PD for 10 years now, and my “protein shadow” has been very long for a few years. If I eat protein, I have to wait 3 hours or more before taking my next dose (carb/levo + entacapone), or my dose might be delayed, weak, or a complete failure. Another complication is that I also have dyskinesia with each dose, so I try to take smaller doses closer together – not easy with that long protein shadow. My husband suggested that I eat all my daily protein at the end of the day after my last dose (he’s also the cook!). I tried it and it worked! I also noticed that most brands of almond “milk” have little or no protein, so I can drink this early in the day without interfering with my meds. I used to be “off” all afternoon after my pre-lunch dose wore off (I always wait an hour after dosing before eating). Now my response to meds is much stronger. I’m still dealing with dyskinesia - that’s the next challenge. Thanks for all the good advice on these forums! One Day at a Time
  9. 2 points
    Hi Stump, Here are a few suggestions. It may involve a trip to a health food store or Whole Foods but vegan cheese is a good option. Kite Hill has a good cream cheese w/chives you can spread on low protein toast. For other toast toppings, roasted eggplant chopped w/herbs and garlic, caramelized onions, sauteed greens. They also have a good ricotta that you can mix into pasta w/some vegetables. Chao brand has a good sliced cheese. Tortilla wraps made with different flours are good for not only for wraps but for quick individual pizzas. Fried rice is also quick and easy if you keep a bag of cooked rice in the freezer and toss with any veg leftover and you can change seasonings to make it different. Sprinkle curry powder, or soy sauce & sesame oil, go spicy w/ chopped kim chi. Low protein pancakes or waffles are available either frozen or you can make a big batch and freeze to reheat in the toaster. Happy Eating.
  10. 2 points
    My Wife , Daughter and were just talking. My daughter asked what time was I born, birthday and year born. Then she hit the conclusion of what my major illness will be. First thing up Neurious system disorder , constipation, stiff joints, eventual dementia as a possibility also said I would be bald. And now after all this money spent and time to find out. Could of just found out on a phone App.. Tom LOL
  11. 1 point
    Jb glad to see you are back in the faster track again. Hope the weather is cooperating for all this weekend. Have a safe one out on the roads. No DBS here. Just thought about you mentioning combing your hair different. WHAT IF YOU HAVE NOTHING TO COMB?? I know someone like that! tom😕
  12. 1 point
    https://parkinsonsnewstoday.com/2019/05/09/low-substance-p-saliva-levels-may-predict-swallowing-issues-parkinsons/ Recently I inhaled by mistake a tiny piece of a bisquit. Really small. I thought I was going to choke to death. What an awful feeling--and from such a little thing! This article on our possibly having low-substance P saliva levels may relate...
  13. 1 point
    I started typing a lot more and boy was it hard! Not just with my hands and arms. My legs began driving me nuts in a crawling, electrical buzzing way every time I typed. I would jump up and run on my treadmill to make it go away. This led me to realize that I have restless leg syndrome. So I started using my “fitdesk “ to pedal while typing thinking it would help my leg problem. Amazingly it made my typing better too! My arms don’t tremble, my hands don’t spasm and twitch, I can type again, albeit more slowly than pre- Parkinson’s. Pedaling helps my writing too!
  14. 1 point
    Hey Miah, Yes i HAD DBS done. aBOUT A YEAR AGO NOW. it was ok, healed well, have to comb my hair differently now. I had a certain amount of pain following surgery was caused by rheumatoid arthritis. springtime, late winter was a blank. i am learning to walk again. people say i look better, ha, they should look out through these eyes. im an ooooooolllder person, I used to read Miah's musings way back when this posting was aired across the countryside from spinning rock hosted by Penny and Johnny. i used to watch for Miha then and he still is one of our strongest advocates. good to hear you miah. peace and happiness to all,
  15. 1 point
  16. 1 point
    Here's the deal - A MDS can accurately diagnose PD in most cases and can offer a small number of treatments to reduce symptoms (I say reduce because none of them eliminate all symptoms and some treatments actually cause unwanted symptoms). If none of the treatments help, the diagnosis would be in question. The MDS will start treatment when the patient states his/her quality of life is affected. I was told that a symptom improvement of 35% or more with medication would support a probable diagnosis of PD and that over 50% would be good evidence. Once diagnosed, the MDS (or more likely a NP) offers treatment based on feedback and results (all subjective measurements). Patients have a lot of control here because each has a unique reaction to treatment choice and dose. It's a frustrating process for the patient and caregiver but there is no other way and no magic treatment. Gardener
  17. 1 point
    Believe me when I tell you that I'm not trying to be sarcastic or facetious with this response. I'm suggesting that you contact the "Doctor Phil" show (https://www.drphil.com/be-on-the-show/plug/15938/). This is not his traditional fare but his staff of producers and directors will see immediately that there are multiple layers of complexity in this story, any one of which paralyzes decision-making. And that, after all, (besides ratings) is the reason Doctor Phil exists. Because we, as humans, add enormous complexity to issues when trying to consider all sides and satisfy them all. Failing to be on the Doctor Phil show or receive any help, you need the assistance of a counselor to help you with the guilt-free narrowing of your choices, prioritizing them, and then setting a plan in forward motion to reach the desired ends. There is a great deal that you do not say in describing the problem. As an example, when you say "we" are you referring to a co-parent of your child, or a life partner to you, or something completely different? It's hard to suggest any course of action without knowing the full lay of the land (and this forum is inadequate for that task). Moreover, even if I knew everything it would be audacious for me to offer any suggested remedies as I have no expertise or professional qualifications in solving these kinds of problems. There may be someone on this forum who can offer you that kind of expertise but it would be like placing a bet now on next year's Kentucky Derby-a completely random event. A more likely example might be seeking a counselor in your own community who can provide professional support in the short and long-term. I'm sure there are many sympathetic readers here who even have relevant experiences. However, none of them would be as good as someone able to view the whole picture and apply the necessary resources for you to carry out your chosen solution.
  18. 1 point
    Linda you are so right we are all different. Raising my dose is helping but not nearly as much now. The symptom of balance and walking speed has slowed faster then ever before. My Rem Sleep Disorder has also increased probably two fold. My are have been more painful. My hands would take a roller pin to flatten them straight. The odd part my tremor has lessened. And the blood pressure dizziness has worsen. Doctor wants wants more testing. MRI of head. Wants a closer look at the cerebellum and b stem. Well I guess one day at a time. One thing about being awake when everyone is sleeping. Too much time to think. tom
  19. 1 point
  20. 1 point
    I went to WPC 2016 in Portland, and am registered for the conference this year in Kyoto. My interest is as a PwP. I’m going again, so it was definitely worthwhile. I have to say, however, that I found things on the periphery to be more interesting than most of the lectures. By periphery, I’m referring to things like the book nook presentations, and the poster area, which is an eclectic mix of research info, community programs, and people with Parkinson’s sharing their insight, experience and stories. As a caregiver, you’ll undoubtedly have a different perspective. I posted my thoughts after the 2016 World Parkinson Congress on my blog: https://parkinson.fit/reflections-on-world-parkinson-congress-2016/ - Brett
  21. 1 point
    Waruna, I don't think many disagree that most people will have to take meds post DBS. The thing is my wife would probably be in a wheelchair at best without DBS. She gained seven years as far as her symptoms went. She had the surgery over 4 1/2 years ago and she is still better than she was before the surgery. The only change from the previous symptoms is her balance and that is worse, but I don't know of a claim for DBS improving that and in fact DBS can make balance, speech, and cognition worse. Her balance was starting to go before the DBS. Her speech is worse, but it was getting worse before DBS and certain settings do make it worse. She is still walking, driving, and working some. She is taking some Sinemet, but none of the other drugs for her dystonia that made her a miserable person to live with. DBS is not perfect and makes things worse for some people, two I know of personally. It is an individual choice and there can be no blanket recommendation as to do it or not. We just wish everyone well with their decision and warning people of how poorly it can go is definitely something that should be done as well as how well it can work. It isn't a cure, just a tool in the arsenal to fight the effects of this disease.
  22. 1 point
    Hello all... I understand what you are saying about research...but this medication (the inhaler) was worth the time and money in my opinion. Like I said above, I was in the trial for it. It gives a quick on (about 5-7 minutes) and a boost until the next dose of levodopa. It's not meant to replace sinemet or any other PD drug. It's simply meant as a "rescue med"....if I recall from the trial, I think it was only allowed to be used so many times per day....not sure if that was a trial parameter or if that's true for the actual medication.... As for the cost of the med, remember that the drug company probably spent millions bringing it to the market. They have to get their money back somehow....after 7 years or so, the generics can enter the market. Also, remember it would probably never gotten to the market if it were deemed ineffective anywhere along the way.... The whole insurance thing is difficult to navigate; however, I'm glad it doesn't stop the research altogether. Someday when they figure out how to slow the progression of PD (or cure it completely), we will have to thank the researchers who stood on the shoulders of every other researcher and piece of research to bring us a cure. It's all part of the entire process. I pray for a cure....hopefully everyone with PD feels the same! Without hope, we have nothing! Peace, Mihai
  23. 1 point
    Chuck172 My observation of other in exercise class seems that tremor is one of those gray areas. Meds work for some. But it seems stress brings it out. I noticed that those with tremor shake worse the tired they get. There are those that swear about Sinemet working to improve it. My tremor was secondary to balance issues, stiffness, cramps, and rem sleep disorder. My tremor has of late lessoned and I have become stiffer and worse balance. Not to scare anyone but I think tremor dominate though not being great to have IMO function better. Last week I had my 6 month with the doctor. I am struggling in that the doctor is thinking MSA-P. I have not told my wife. I need more testing. I have not at this point decided to have more. It is not easy to handle all the unknowns. Best advise keep moving and remember Parkinsonism has many gray areas. No one can predict tomorrow ! Live each day and the next is a new one and live it. Even those in perfect health are in that same boat. Tom PWP???
  24. 1 point
    Then maybe I'm atypical...I have a ton more energy than I did before DBS (because I'm not exercising 24/7 via dyskinesias). I also sleep less due to my energy level. I have offset the less sleep issue by increasing my workload to "tire me out." It works just fine. I'm just saying to try the simple options first before trekking to Florida for something that could have been resolved otherwise! Just my humble opinion... Mihai
  25. 1 point
    Before the troubleshooting thing...try to adjust your settings a little at a time...don't increase or decrease too quickly so you can monitor the effect of each change. You shouldn't have to worry...the latitude they give you to change the settings should be very safe. If that doesn't seem to help, then have your programmer try some different settings. That may solve the problem! Mihai
  26. 1 point
    Tweets32 I hope you get things adjusted. People here on the forum are very understanding. Just saying hello. Tom from the middle of the USA. PWP
  27. 1 point
    good benchmark for PD is loss of smell
  28. 1 point
    Not sure of that tour's specifics, but we took an Amtrak from Galesburg, IL to Sedona, AZ around 8 years ago. Rented a minivan from there and went through the park. Loved the trip and can honestly say I will never step foot on a plane again.
  29. 1 point
    I have the same issue with my left foot. It is a condition known as Dystonia. I was taking 4 - 4mg tabs of Zanaflex (generic, Tizanidine) per day. With the use of AROMATHERAPY ASSOCIATES' DESTRESS MUSCLE GEL, I am down to one dose at bedtime. I rub the gel on the arch of the bottom of my foot, between my toes and on my calf. The muscle gel spreads easily, so you don't need a large portion. Also, I find that just standing up with my weight on my left foot frequently stops the spasm. If your mom cannot safely stand, extend her leg straight out with toes pointing to ceiling. Gently push her foot towards her head, recognizing her stopping point. I have found anyone of these suggestions more effective than massage. I hope you check into the possibility of Dystonia. I wish speedy relief for your mother.
  30. 1 point
    https://ladpdjourney2.wordpress.com/2019/05/07/parkinsons-awareness-a-tumble-a-tuck-a-roll/ new post 😊
  31. 1 point
    Pathfinder I feel for you. I no you are in a catch 22 in that you must get you husband up.( for his GI motility) And blood pressure and bowel movement can be an issue. You and miracle seeker have taken on a job out of love for that person. I think in many ways being the caretaker is harder to deal with, then having parkinson's! I draw my conclusion from your posts. Many can learn for you two and others. Tom PWP
  32. 1 point
    Sorry to hear that. Nothing feels right when they are in pain. My mom has been jumpy all day. I don't understand how a little c/l taken once in the evening for the past week can cause so much damage. I had an argument with my helper when I got home from work today. She is such a nag that it gets on my nerves. I told her I stopped the medication already but yet she repeats it over and over again that I should not give her the drug anymore. I feel helpless like you. Tomorrow is another day.
  33. 1 point
    I fall quite often, mainly because my head is faster than my feet which remain glued to the ground while my body is making a left or right turn. I feel completely helpless and always need help to get up, can't pick myself up. As I move usually quite swiftly the fall is generally spectacular (for the people watching) but thank god, although it happened an average of once a month in the past year, I was lucky not to hurt myself. I seem to be more careful now when I attempt to make a turn (it's about time) but I could'nt say for sure it won't happen again.
  34. 1 point
    I hear you about the leg and foot cramps. Sometimes, they are bad. I always used to eat bananas when they got bad, since the potassium is supposed to help. Here's another (albeit crazy) idea that someone suggested to me. Put a bar of Dove soap in your bed near your leg or foot that cramps. See what happens when you try that. I know it sounds nuts...but it seems to work on the cramps. Maybe it's more of a placebo effect. I'm not sure, but it does seem to help. If not, you're only out the cost of a bar of Dove soap. Plus, it smells really good! And no, I do not work for the Dove company or whatever manufacturer makes it! Mihai
  35. 1 point
    I sometimes feel normal for about 15 to 20mins,then after,symptoms creep in gradually with activities.
  36. 1 point
    LAD and Pathfinder, please be careful. Dianne
  37. 1 point
    No one will ever be glad they had a restricted diet on their last breath so yes let them eat what they want.
  38. 1 point
    When I recover I will make you a video of how to tuck & roll LAD
  39. 1 point
    Hubby has severe Gasteoparesis, it took sometime to find optimal food and medication schedules. Works great now. He also has well controlled type 2 diabetes, he loves and tolerates ice cream well, so I let him eat it as often as he wants. So little pleasures left to him, if ice cream makes him happy, he gets it when he wants!
  40. 1 point
    So sorry to hear about falls and RA. I don’t rush anymore because I have fallen in the past. LAD is right. We need to know how to fall like a stuntman. That’s what I call it but not sure I know how to do that. I tripped once on the vacuum cord and accidentally fell right cause I didn’t get injured, not even a bruise. Now I use a cordless vacuum. The neurologist gave me a sheet on preventing falls which mostly I already knew. I have fallen twice when it was not caused by tripping. The house we have has three steps down to a family room where the washer and dryer are. We are considering moving to a place that doesn’t have any steps. Hoping everyone doesn’t have falls in their future. Hang in there jb. M.
  41. 1 point
    Most of the time the cause is from not picking up your feet when you walk or run but unexpected obstacles can get in the way and then all bets are off. Be careful!
  42. 1 point
    Hi Beau's mom, My best guess would be to check with your insurance plan for other pain management doctor's that may work with spinal cord therapy. Another option may be to have a pain management doctor near you contact the doctor who did mine, who I was so lucky to find. His name is Dr. Michael Sikorsky out of Rochester Michigan. I hope this help and please keep me posted.
  43. 1 point
    Hi Carol, I am the caregiver to my mom who has had PD for 20 years. It is a lonely existence and I can't get off this merry go round because I won't abandon my mom to the home. No doctor can seem to find the right meds to help her so I've been trying on my own and then get them to give the ok to prescribe the drugs. I take the guess work out from them and they move on to their other patients. We've had quite a few CG's on this forum that were in your shoes and their DH's have now passed away. You are glad that your burden is finally lifted when that happens but at the same time you have lost your soul mate. It's a terrible journey. Sooner or later the dopamine will get less so it's unavoidable. All I can do is try and play catch up. It's a losing battle. I'm sorry you are going through this alone. I feel your pain and I know what you are going through to a certain degree. Please keep posting. Please let me add that what will make you feel better is to have good support from people who won't let you give up. My sister gave up long ago and couldn't care less what happens to mom. It kills me to see her decline while my sister just rolls her eyes and shrugs. Everyone has a different story to tell. No two experiences are alike. A good pep talk helps a lot. We have to keep moving.
  44. 1 point
    This thread is very helpful, i do feel so alone sometimes, and crave the company of a fellow Parkie, as no one else has a real clue, because of course we work hard at being brave and not being a bother, at being a helpmeet and good company rather than a drag. i haven't written in ages because i was tending my dying mother, then tending her estate, then i developed parathyroid adenomas and have suffered from calcium issues that complicate the PD to the nth degree. i have one parathyroid gland left and i think it may be toast, my PD has worsened exponentially since my latest surgery in February. Where i once had rigidity and paralysis in my right arm/hand, i now have tremors in my right arm, right leg, and sometimes my lower lip...i have biphasic dyskinesias, tics and grimaces and no longer wish to travel or actually see anyone that i am not especially close to...i feel best in the morning, when i have been off the Sinemet for the longest, i am wondering if that is because i take lorazepam after my first sleep (i take Sinemet at bedtime and read my kindle for around forty minutes, sleep for three hours, then cannot get comfortable no how, so i get up, take lorazepam, do a sudoku, ken ken and a crossword, eat a fried egg sandwich (because i only eat 2 meals during the day and i know that protein is important for producing endogenous dopamine), and sleep for 4 or 5 hours more. I feel pretty good when i get up, normal arm swing, etc, do about forty minutes of yoga, then work in the garden for 50 to 90 minutes, then do a short spell of free weights and calisthenics and then take my first dose of Sinemet of the day. Right now i am due for my second dose of Sinemet and i am restless and tremulous and bradykinetic and bradyphrenic...right arm/hand semi-paralyzed..very uncomfortable...i experience some relief from the Sinemet for which i am very grateful, then when the dyskinesias kick in in the evening i start imbibing a few drops of tincture of cannabis in hot water, which makes it bearable... i know the benzodiazepines are notorious for cognitive decline but so is loss of sleep! pick your poison! i'd rather have that period of relaxation and zero anxiety than suffer 24 hours a day...i am so grateful that i am retired and my DH is so supportive. Thank you for starting this thread, i have been a lurker of late, and you are all so kind and compassionate to one another, it's heartening, i just wanted to share my story with people that can understand, it does get lonely in the real world surrounded by all those hearty healthy positive thinkers..though you gotta love em!
  45. 1 point
    I'm kind of late to the party on this string but everyone's posts touched me. I needed to hear what everyone said and I appreciate the honest feelings shared. One frustrating and sad thing I deal with is that I no longer talk to my few close friends about what's going on with me regarding slow thinking, loss of strength, muscle aches, fatigue, apathy. They'll ask how I'm doing and if I say well I've noticed increased slow thinking and it's scaring me, they'll say well my thinking isn't like lightening either and as we grow older things change. Cramping in my hands? They have it too. Fatigue? They experience that too now that they're in their late 60's-early 70's. I used to reply that this isn't "getting older" changes but I've just stopped saying anything. I'm self-employed, have a bookkeeping service. Sometimes I need to enter a complex transaction so I'll look for a similar previous one to see how it's done. I find what I need and just stare, confused. It's really complex - so who entered that? Me? I knew how to do this? I'm scared because I don't remember any of it and I'm sure I couldn't create this if I didn't have my own previous entry to follow. I'll tell a friend this and she'll just say oh I forget things too. But this is different. I feel very alone at times like that. But you all understand. "We walk in each other's shoes" ... thanks Tom.
  46. 1 point
    Amen! Thanks, Tom for sharing feelings that most of us have but don't often share. The mornings are the hardest for me. I babysit my grandson one day a week and I almost go into panic mode the night before as I'm never sure that I'll be able to pull myself together by 7am. I usually start at 4am and by the time I get home I'm completely wiped out. I'm so afraid to let on that this is becoming very difficult as I don't want them to stop asking me to watch him. Being a grandparent is the best thing about growing old! Gardener
  47. 1 point
    Very true! When I was first diagnosed with PD it really didn't bother me. Even though I was an RN, I just thought of it as a "shaking thing" and an explanation of why I was having difficulty with writing or using a computer mouse. I was ignorant of the true nature and extent of the disease. But now, the PD has progressed to the point that not only is it severely affecting my daily life, but I can tell that I have some very bad days ahead. One of the hardest parts for me is having to watch my wife work two jobs to make up for my lost income, and the guilt I feel when I'm tired and hurting and don't even feel like cleaning the dishes. My biggest motivation for pushing myself is not wanting to be any more of a burden on her than necessary. I also realize that if it is sometimes difficult for her to understand what I'm going through, how much less do other people understand who don't live with a Parkinson's patient and only judge by appearance. As you indicated, despite what I have written here I am generally a happy person. It is good, though, for other Parkinson's patients to know that these types of thoughts and feelings are normal, and that other patients feel the same way. Trying to be upbeat and positive all of the time can alienate some people who are really struggling and just need validation of their struggles rather than a pep talk. Kevin
  48. 1 point
    nice idea for a thread... LAD
  49. 1 point
    I know my DW says that before I got on meds she'd notice my left hand tapping to maybe slowly tremoring in my sleep sometimes. Since the meds that hasn't happened. I would say that first thing waking up usually isn't as bad as later in the day. Though "later" can start as soon as maybe an hour or two after waking.
  50. 1 point
    I was diagnosed at last as parkinson's patient in the year 2005. It take me seven years to be diagnosed as Parkinson's illness. I have seen three neurologlists for the past sven years in three different countries. The first neurologlist told me I have in the process of age ageing and I am normal. I was treated as a normal patient by the second neurologlist in another country. I am very fortunate I am in the early stage of Parkinson's and slow in progression . Regular exercises and medications relieve me from body stiffness and mobility. I thank Dr. Chew Nee Kong. Kuala Lumpur, Malaysia for his execellent medications for treatment of my Parkinson's disease. He is actively involved for awareness of Parkinson's in Malaysia.
  • Create New...