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08-04-2013, 02:17 AM | #21 | ||
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grLurckingforacure your replay is right on the dot. Personally, it made me evaluate the supplements I am currently taking. Thank you for that.
To Mouka, this forum helped me to look into the future with less dread that I felt after being diagnosed with PD year ago. Yes, the thought to "end it all" before it "ends you" came to mind but I decided to fight it and learn in the process about myself and about this disease. I would apply this to any sickness I might still to face. Look at Nan Cyclist doing things that many "healthy" persons couldn't do and many others on this forum who research, volunteer for trials, and take time to answer questions from people they don't even know. The decision how to react to this situation is with you. If it would be happening to your best friend or to your wife what would be your advise to them? Bo Last edited by Bogusia; 08-04-2013 at 02:39 AM. Reason: spelling |
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08-04-2013, 06:14 AM | #22 | ||
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Junior Member
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As for PD. I am convinced I have it because unfortunately, I present every possible symptom. It'as just that I don't have visible tremors now. But I know they are on the way. I still can type and write but I have to tense my biceps tremendously to still have fine motor control. The final effect being that my biceps are hurting from the constant tension. My back muscles also hurt because they are tense all the time. I am under an enormous amount of stress because I dread the future and know what's in stock for me. Sleeping pills buy me a couple of hours sleep each night. I am sweating constantly. I guess I had PD all along. I just didn't pay attention to it until symptoms became too obvious. I withstood enormous hardships to achieve the relative success I enjoyed. I don't want to go away. I still have 10 years of mortgage left to pay and 3 kids to raise. My son is severely handicapped. So forgive me if I am stressing out about the future. It's what I am dealing with that is stressing me out. |
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08-04-2013, 07:45 AM | #23 | ||
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Senior Member
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I would suggest you read the book "Could It Be B12?" written by Sally Pacholok and Jeffrey Stuart. Severe B12 deficiency has a ton of symptoms of much scarier conditions. And many drugs docs prescribe can mask what is really a B12 deficiency, so be on the lookout. Your thyroid may be totally out of whack as well, you don't say how old you are in years, but stress will age us like nothing else does. I would suggest you read "The Thyroid Solution" by Ridha Arem, because he lists the tests one needs to fully see what is going on with the thyroid. With both of these, you will see that the acceptable "ranges" medicine has set for vitamins, minerals, and hormones are flawed: what level is good for me is not necessarily good for you....also, the level I needed when I was 20 is not going to be the same level I need at 40, 50, 60, etc. These "levels" medicine has set are fixed, and if someone is within the range, they are deemed to be fine. But our bodies do not stay the same our whole lives, we are constantly adjusting as we encounter this or that stressor (emotional like a new job or physical like a broken arm or getting the flu)...so it only makes sense that our body's need for various vitamins and minerals would fluctuate as well. Sometimes when things like this happen, it is a good time to take a look at where we are in our life. You are stressed for a reason (or sounds like, many)....make a list of those things worrying you and see if can find a way out. You will probably put PD on your list: the only doctor you have been to has told you that you do not have PD. Why in the world take on a burden you have been told you do not have? You have huge stress, put that on your list instead and you and your wife try to figure out what you can do to alleviate at least part of it. Looking deeper: are you happy? If not, why, and what can you do about it? We cannot always fix what is not perfect in our worlds, but we can work around those things and try to be at peace with them. . Would you rather be told you do not have PD by a doctor, as you have been, than to be told you do have PD, put on PD meds for years and dealt with the horrible side effects of those drugs, only to find out decades later that you did not have PD? This has really happened to people! Be careful. |
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"Thanks for this!" says: | Bob Dawson (08-04-2013), lab rat (08-05-2013), reverett123 (08-04-2013), soccertese (08-04-2013), Thelma (08-05-2013) |
08-04-2013, 12:18 PM | #24 | ||
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On a different note, if I were to try some PD medication, what would be some obvious positive effects? Would it help with my balance? Would it help with my emotionless face? Would it help with my back cramps? Does PD medication deal with all these aspects at once or does one have to take a whole set of medication to deal with each aspect of the disease? |
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08-04-2013, 01:15 PM | #25 | |||
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If you have done a lot of desk work /reading postures over many years, that can be why you have some of that stiffness & muscle tension.
If head/shoulders are rolled forward or hunched it can cause a lot of strain in the upper back/neck muscles, even trigger points that would need to be treated for them to resolve. A good PT should be able to assess posture and treat. Might be good to look into some physical therapy, I'm surprised the dr that you went to didn't at least suggest trying that..
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08-04-2013, 01:39 PM | #26 | ||
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I can't sleep now. I have twitches in my muscles. I feel some numbness in my hands. Especially the left hand. When I start relaxing to sleep, something jerks. A hand or a leg, and it wakes me up. Now while I am writing, my biceps are tensed to a maximum. They should not be involved in my typing. But I guess I am tensing them involuntarily to achieve fine motor control. These are the issues I am dealing with. And the doctor did not pay any attention to these issues. Maybe I have some other disease, other than PD. But after doing a lot of reading on PD, all my symptoms match. That's the bottom line. I was wondering if I were given some PD medication and my symptoms would disappear, that would indicate PD. Am I right? |
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08-04-2013, 01:50 PM | #27 | |||
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Why not try a therapeutic massage therapist while on your vacation to see if that will help? Sauna's or hot tub may help with the muscle tension..
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08-04-2013, 02:51 PM | #28 | ||
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Can someone please answer this simple question: Does PD medication address all issues related to it or just motor problem? I mean by putting some dopamine, or dopamine like substance inside one's body, does that alleviate all the symptoms one suffers from?
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08-04-2013, 06:13 PM | #29 | ||
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If you do any reading about PD from people who have it and deal with it every hour of every day, you will soon learn that the PD drugs help in the beginning....they have a honeymoon phase (although we never really got that, not everyone does), and then the side effects begin. If it were me, I would never "try" a drug to "see" if it helped me....you can get addicted or worse, your body can be damaged.
Our take on PD drugs is this: sinemet, WHEN IT IS WORKING, a big IF (better not eat anything, you won't get any benefit) helps, sometimes, with mood, vision, and gait....it does not help our tremors Sinemet does not last very long, unfortunately...do some reading and the range is a few hours, depending on the person, his/her metabolism, if they've eaten and what they ate, etc. Mirapex, WITH ITS HORRENDOUS SIDE EFFECTS, can help with tremors....be prepared to get sleepy every time you take it, start suffering brain fog where before you were mentally crystal clear, and worse, once you start taking it, you will be a slave to it. We have tried to get off of it three times and failed, the withdrawal/pain was simply unbearable, and we have a very high pain tolerance and a very strong will. Please do not think if you have PD you can simply take a pill or two and all will be well. Like many, I could write a book on our experience with PD meds but suffice it to say, they are: 1, unpredictable in their effect (degree of benefit as well as duration) 2, include side effects that are the very symptoms they are designed to alleviate (dizziness, shakiness, nausea, to name a few) and 3, sometimes, even if you take them on time, they just don't work and you have no idea why. Not to preach, but I would be spending my time working on my relationship with my spouse, sounds like there are some issues there, and focusing on my kids. Sure, go see an MDS, get the second opinion you seek....but that is just a dx, and at the end of the day, whether or not you have PD does not define the type of person, husband, and father you are |
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"Thanks for this!" says: | anon72219 (08-05-2013) |
08-05-2013, 12:16 AM | #30 | ||
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*admin edit* I have 2 daughters 13 and 7. The 13 years old will learn how to cope with this, but my 7 years old will be devastated. She is extremely close to me as we spend a lot of time together. My son was born with a sever handicap. He does not even know I exist. So my presence or absence won't make much of a difference for him. My mom will be crushed too as I am very close to her. She is a strong lady and raised 5 kids without my dad. My dad died in service almost 40 years ago. I am so lost now. I can't sleep. I take sleeping pills and they buy me 4 hours of sleep at most. Then I am back running in circles like a hamster in his wheel. This crap is so unfair. Last edited by Chemar; 08-05-2013 at 06:11 AM. Reason: NT guidelines |
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