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LMH,

 

Why were Beta Blockers prescribed? I talked to a retired MD, (pathologist) whose wife had something similar to PD. He asked me if my impression of neurologists is that they are mechanical, (my word not his, can't remember exactly what he said). They don't tend to have a good bedside manner and are very matter-of-fact. Have you read the YOPD paper on the website? You are on the right track to write down symptoms. My wife had most of them at the time of her diagnosis. Dystonia started soon after the diagnosis. She had tremors in her left hand, micrographia (small handwriting), shuffled her feet and was stooped over, moved very slowly, had sever anxiety with panic attacks, hypophonia (soft voice), etc. Hang in there, neurologists use a diagnosis of exclusion often. Look at another neurologist if need be and make sure you take a list of questions and don't leave until they have been answered.

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The beta blockers were prescribed for the tremors. I don't think hubby is going to take them though b/c he won't be able to work while on them and caring for his family is his first concern, which makes this whole thing extremely difficult.... See, his boss wants hubby to take care of his health but at the same time he won't be able to do that and work, from what I can see... I just called our doctors office and asked them to refer hubby to the neuro we would like to see. We'll see how that goes....

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Today's appointment went MUCH better. The wait was awful, aparently just one of those days, but the doctor was great, he acknowleged our concerns and said some of the symptoms did sound like PD. Hubby went ahead and told him he had seen a doctor before who said he had PD and I'm glad he did, I think it supports the possibility of a future diagnosis. After insurance approves, they will set an appointment for some testing. It's possible hubby may have other things going on as well. Anyways, he will currently be treated for essential tremors and they'll go from there. And what was prescribed to him will NOT lower his blood pressure. I'm so glad hubby agreed to see another neurologist and that we were able to see this one. It'll probably be January when he's seen again. Thanks everyone! Hope you all have a great week. I'll update again later. :D

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Got a call today, hubby's appointment for testing will be on the 17th, then his neuro will see him the following Monday. Just thought I would share.

 

OH! So, hubby has been taking his meds at night before bed like the neuro suggested. The following day of taking the first dose, he felt AWFUL. Normal side affects but still, he felt so bad that his boss told him to go home at lunch time. He couldn't even eat lunch, and he slept most of the rest of that day. Mind you, he was prescribed the lowest dose. It was suggested to him that it may be because he has so little fat that the meds affected him so strongly. So that night, he skipped that dose to let some of the meds get out of his system. He felt better the next day, thank goodness. So, then, that night after me suggesting half a dose, he took half a pill which was hard to do b/c it's so tiny, lol. Anyways, it was MUCH better. Still a tad termor in his hands but he was able to work without any problems and was actually pleased to be taking something. His body is getting used to the half dose and the tremors are becoming a little more noticeable again so soon he will be taking a full dose again now that he's had time to adjust. Sorry if that came out all drawn out, lol. I'm just glad he's finally taking the steps to help himself. :) I'll update after his appointment Monday. Hope you're all doing well!

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I can testify that the meds are a life saver.. they won't correct the emotional difficulties.. but in one week my DH was dressing himself, in 2 weeks, feeding himself and in 1 month he danced at our wedding.. I wish you great things. Tracy

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Hey everyone! Hubby had his follow up visit this morning. Kind of good new bad news kinda visit, lol. "Bad" news, the neuro agrees that it is indeed early PD. Good news is this was only hubby's second visit with the neuro so what a quick road to diagnosis!!! We really do love this neuro, he's really considerate, understanding, patient!, and really seems to want to help. He does want hubby to stick with the Primidone and also prescribed hubby today with Azilect. So, we'll see how that helps. Hubby has been taking a whole pill for close to a week now, it still helps as long as he doesn't have caffeine, lol. Overall, we are very happy. I've heard so many stories about how long it took to get diagnosed and I was dreading all the appointments with little results, which could have made hubby want to say forget it. Oh, and he still has to get blood work done, somehow that was left out when he got the other tests done, which we found out today looked normal. Anyways, I wanted to share the news. It really is a relief to have gotten the diagnosis already.

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Hi, LoveMyHubby,

 

I am so glad he is finally getting some care. My PWP first started showing symptoms in 2000 -- his right hand was curling up and he couldn't play the piano as he used to. He had all kinds of tests over several years. He even had acupuncture for his arm! He was so tense, I sent him to a massage therapist. Of course she can't diagnose anything, but she suggested that he see a neurologist about the possiblity that he has PD. So finally he was diagnosed in 2006.

 

The important thing about starting the meds is that they enable good movement and control for the disease. See if there are any exercise groups offered for PD in your area. My hubby's doctor referred him to a PT program that uses "BIG" therapy. The exercises over emphasize the movements  so that the muscles and nerves can find new ways of talking to each other. When my PWP was going he did very well. There is a book with these exercises called "Delay the Disease . . ." which you can order from Amazon : http://www.amazon.com/Delay-Disease--Exercise-Parkinsons/dp/1424332087/ref=sr_1_6?s=books&ie=UTF8&qid=1389414674&sr=1-6&keywords=parkinson%27s+disease

 

Exercises are useful for keeping the body moving but also relieving stress and helping the PWP feel they are participating in getting better. I have seen this with my husband.

 

I'm so glad you and your husband are making progress.

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*sigh* I'm feeling a little down. It's hard being strong.... Hubby told me last night that he feels he's developing dementia. I think it's more of a fear at this point, but when does memory loss turn into dementia?... His memory problems seem more like short term memory, and very often. He said every single time he goes to his truck to get something he has to stop and backtrack what he was doing to remember what he needed.... He is also becoming more and more moody, having what I call "fits" over the slightest things. It can't be good for our kids and that's another worry I have. But maybe knowing daddy has PD (which they do) will help them understand? He has been feeling better since starting the Azilect, the cloudy head feeling is better he says and his balance has improved BUT the Primidone is not working like it was and he doesn't want to keep increasing the dose or taking it twice a day. By something he told me last night, I think he now regrets waiting so long to finally see a neuro. I told him I tried to get him to go but I can't make him, you know?...

 

I have too much going on and it's catching up with me and now my health. Getting more personal, I'm dealing with my weight. I was on a great routine, losing weight, feeling good about myself then got sick and haven't been back on track since and that's been a few months ago. I've probably gained 5-10 lbs which can really make a difference and cause problems. I'm fatigued, tired no matter how well I sleep, irritable, worried, stressed. I finally bought some vitamins that are helping some but I really need to get back to exercising.... And what I haven't shared but want to get out of the way is I have been having issues with random muscle spasms all over my body, my hands have been shaking for a few years now (I trained at a salon for a week and my boss asked me why my hands were shaking, all I knew to say was I didn't know, that they just did) and are getting worse but especially my left hand and thumb (more of an occasional twitch) and I feel dumb b/c I forget often. When I was in high school and even now I just jokingly tell others I'm "blonde", which I know is horrible..... The muscle spasms are starting to worry me b/c they're happening more often, and b/c of that I feel I'll have to see my doctor about it soon..... Sorry for the "vent" but I had to let it out, I don't have anyone else I can tell this (about hubby) to that actually understand what's going on. His next appointment is in March...

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My neuro says that taking medication does not alter the course of the disease.  So, his waiting to see a neuro probably hasn't had any effect on his PD.  As for the short term memory loss, that seems perfectly normal for almost all neuro degenerative diseases.  Like probably everyone else on this forum, I have moderate short term memory loss and I have just learned to deal with it.  In fact, I write myself notes and use a lot of other mental crutches, but unfortunately frequently forget to take the note - LOL!  All you can do if laugh about it!

 

As for your muscle twitching, that's often caused by low magnesium.  Have your doctor check for that.  It's amazing how magnesium supplements will stop those twitches!

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That's funny. So many times I've written a grocery list and forgot to take it, I put them in my phone now. You really do have to take a humorous view to things like this or it'll really take a toll. It's hard though, and I don't want my hubby to feel like I'm making fun. He's gotten a lot more sensitive lately. :( We just take it one day at a time, sometimes one moment at a time....

 

I'll mention magnesium to my doctor, thank you. Those little twitches can be a real pain in the rear, especially when it's my eye lids, lol.

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LoveMyHubby,

What other drugs besides Primidone is your husband on? I would think that Primidone could cause memory problems as it is converted to Phenobarbital which is an anesthetic. the agonists Mirapex and Requip will do that the same as several other drugs. that would be a concern. I have had tremors in my hands when stressed out, none now. Try the magnesium and potassium supplements and see what they do for you. I would see a doctor though.

Coach T

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Aside from the Primidone, he is on Azilect. I'll let him know what you said. He's not liking that the Primidone isn't working like it was, the tremors are coming back despite increasing the dose. The neuro said he could take two a day if needed but hubby really doesn't want to do that....

 

I will try the supplements, and also see what my doctor says. I'll probably have to wait til payday before I can go. Til then, I'm taking a good mutlivitamin that's helping with my energy, and coconut oil. :) Thank you coacht.

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