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tiger_pup00

Well....

38 posts in this topic

A little background... DH fell off a ladder about a year ago hurting his shoulder, hitting his head, etc and every once in a while suffers pain in that shoulder. Well, last night he was feeling his shoulder trying to pinpoint where the pain was coming from. Baaaaddd idea. Not only did he find it, but the pain from feeling the tendon that was hurting caused him to go into a bad full body tremor, for lack of better words. He can handle a LOT of pain but it was so bad he was in tears and then the shaking, it was hard to watch. I keep telling him he really needs to go to our doctor so he can send him to the neurologist. I don't know what difference it would make but he's wanting to get a certain amount of work done before taking time off. I feel helpless. I can only do so much. I know he feels like less of a person, hopeless, depressed b/c he can't do all the things he once could. He was up in a ceiling doing work and a coworker and his boss told him to get down b/c he's in his 40's now and men in their 40's don't get up in ceilings, lol. He thinks just b/c he can get up there and do what needs to be done is ok, just b/c he can! What if he were to fall on the way down or lose his balance and fall? The doctor he saw about his shoulder said if he ever fell on it again it would shatter it. Who knows what else it would do to him.....

 

He also has mitral valve prolapse and has issues with his kidneys and liver which I think is another reason he doesn't want to try any medications for his PD, afraid of it making things worse.....

 

UGH.... I try to reason with him logically b/c it's like talking to a Vulcan sometimes and he usually finds a way to disagree with me.......

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So sorry, this is hard. Hope you can find the right doctor that he will be comfortable with seeing.

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Lovemyhubby, It is more like trying to reason with a child in my case, nothing works for the most part. Someone else suggesting something works much better.

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At this point I think the only way he'll see the doctor is if his boss tells him to go. His boss has asked if he's seen anyone yet and then said he'll eventually need to. I just feel like he keeps making up excuses not to but if he keeps putting it off I feel it's only going to make things worse. I guess he feels like since he can still get things done, so he thinks, then he doesn't need to try to get started on any medications in case it makes things worse since it may take time adjusting to them. Does that makes sense? Like I said, I don't know what to do, he doesn't want to listen. I can't make him go.

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sinemet doesn't really take time to adjust too as long as the dose isn't too high. Also, it works quickly and doesn't last long, that is why it needs to be taken so often. An hour after taking it can turn a person around. Does the boss know about the PD? If so that might be the only way he will go.

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I'm not sure exactly what his boss knows. My DH changes what he says. I don't think it's on purpose, I think he forgets and doesn't admit it. His boss knows something is wrong though. Everyone has seen the tremors. DH has said before that some coworkers knows it's PD but then yesterday he said they just think he's just been shocked too many times (whatever).

 

From all I've been reading it looks like Sinemet has less side affects than other medications but still helps. He is really pessimistic about taking anything for the PD. And I would hate to have to go behind his back and say something to his boss but it may come to that point. We have a friend who works with him, maybe I can ask him to say something, lol..... I think it's just a matter of time. He told me after that bad episode he doesn't know how much longer he can keep it up, keep working... He's worked hard his whole life though and can't even imagine not working so I think that's making it hard on him to decide what to do.

 

I love my DH very much and will always be there for him but this whole thing is stressing me out. :cry:

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Does the friend know about PD? if so, that would be a good person to suggest it to him. He could always take the meds on the weekend if he is afraid of the effects.

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Yes, he does. I'll try talking to DH again and bring up trying the meds on the weekend, that's a good idea.

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I agree and in some weird way sinemet works great for me. When I get close to a dose time I find myself feeling crappy. I take the dose and within a half hour or so I feel better. This happens a lot when I am very active, working out, fishing, cutting wood etc. sometimes I even take the dose a little early if I am feeling bad. I have tried the agonists and they did not agree with me but recent I am on the patch and it seems to have boosted me good.

 

Everyone is different I hear people saying the agonists are great. They made me sick at the beginning and grumpy! The patch so far seems a lot better I hope it pans outs because I worry about using up the sinemet.

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Brad, Don't worry about using up the sinemet. The doctor at Mayo said to find the dose that works and then work our how often you take it. You may just have to start taking it more often is all. Too much causes the dyskinesias and compulsive behavior.

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DH hasn't made an appt yet. He told me this evening his sister invited us for dinner Friday night. He thinks it's only so she can "fuss" at him for not going in yet, lol. I haven't had the opportunity to talk to our friend.... Just thought I'd give a little update..... Curious, is Sinemet pricey? We do have insurance and personally I'm not worried about the cost since it could mean DH feeling better, to some degree. I'm wondering if that's another thing he worries about and why he doesn't want to go in yet, afraid he can't afford the meds in the first place. *shrugs*

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I don't believe sinemet is but I know the dopamine agonists can be pricy. I have good insurance so I am lucky there. I believe my Neupro patch would be around $200-400 per month without it.

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Sinemet or the generics are relatively cheap compared to the agonists, saved us thousands. The thing Dr Okun mentioned was to stay on the same one all the time Sinemet versus a generic as there are differences in efficacy even though there isn't supposed to be any. Not all generics are equivalent in efficacy compared to the name brand. Saying that, my wife does well on the generic. If she were to take the name brand it might be too much or not enough at the same does, who knows.

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Good to know. Yea, we usually get generics anyways since it's basically the same as name brand, including over the counter items. Why pay more if you don't have to, right? Lol. I'll keep that in mind though for future reference. I would hate for there to be a mix-up (it happens!) and end up with another brand and it have ill effect on him. Again, for future reference, he's not on anything yet....

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No. No doctors visits, nothing..... Only good thing to report though is he may transition into an IT position at work which should be a little easier on him physically.... Symptoms haven't gotten any worse. I haven't asked him how he has been at work but his legs have been ok at home, for the time being. ...He does seem to be waking up in the middle of the night more lately....

 

Sorry for the absence, I've been having back issues so have either been resting or putting my energy and focus into housework. :)

 

OH, it may be a while before it's needed but I did order one of those free hospital kits found on this site. It came last week. DH actually looked at everything and thanked me for it. That was a shocker, lol.

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Hello everyone. Sorry I've been MIA. Have had a lot going on but that's nothing new, lol. I do have an update though!!! Hubby's condition has "progressed", enough to the point that his boss has TOLD him to see doctor for his PD. SO, during a recent visit to our doctor (we've been sick), hubby mentioned his PD and needing a referral to a neuro. He now has an appointment for Friday, the 15th. I honestly don't know his experience with PD, I'm just glad my hubby is finally taking that step. It's a big one and he's avoided it long enough. His legs haven't been giving him any problems, somehow he has the ability to adapt, but his fingers and hands have been curling up and fingers getting stiff.... It has really affected his work. Many have seen his episodes, I know he's embarrassed. If he's with someone and it happens he just tells them he has to wait a moment, usually ends up explaining it. The friend he works with, I don't know, it's like at first he didn't believe hubby had it but then he's seen the symptoms but he's wishy-washy, lol.... Anyways.... Sorry for the babbling..... I've started homeschooling our kids so I may not be on often but I'll be sure to update after hubby sees the neurologist. Hope you all are doing well, under the circumstances. :)

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Good luck with the visit to the neurologist on the 15th. I'm impressed with you homeschooling your children on top of everything else. 

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UGH! I'm so mad I could scream!.... Sorry, had to get that out.... We just got home from hubby's appointment. It didn't go well at all. It started by hubby calling this morning before we went, he was told this morning it was only a consultation visit. I can understand the need for the doctor to see him and get to know him a little before actually diagnosing anything but hubby didn't like the idea of paying to be seen, just to chit chat, if you know what I mean... Anyways, we get there and I KNEW I should have gone in with him, though I can understand wanting to go alone b/c of course, the kids are with me 24/7... But I always ask questions he doesn't think to ask or doesn't WANT to ask.... To summarize, the neuro doesn't think he has PD, he thinks he only has tremors b/c hubby can sit still (which hubby can do when he puts his mind to it!!), AND he's not over 50!!! As soon as my hubby told me that I told him he needs to see another neuro. That statement alone makes it obvious he doesn't believe in early onset PD. The only supportive thing he had to say was that he was worried about hubby's hands and legs cramping up but even then he thinks it's a muscle disease which at the moment I can't think of the name of it but I'm sure you know what I'm talking about. Is it Muscular Dystrophy? Anyways, I can NOT believe he just thinks it's tremors! HE said EVERYONE has tremors, just some are worse than others.... You know, as upset as I am right now, it probably was best I didn't go back there..... But really, if it was just essential tremors why does he have SO many other symptoms??......... He prescribed him beta blockers and wants to see him in a month... He told hubby if the blockers don't work then he'd have to take other actions.... We paid a $50 co-pay, which IMO is worth it just b/c we're doing what we need to do, we're taking the steps to figure this out and DO something about it but hubby feels it was a waste of time and money, he's in a bad mood and is very pessimistic, more than usual..... I need advice. Should he try the blockers? Should we try another neuro??.... I'm so stressed right now....

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sweetheart, I can so relate I have a husband just like that, but I would say try anything that would make ur honey feel better, and give him space to calm down, it is frustrating, Did you get to meet the dr. at all? what does your honey say about going to a different dr? Some men are stubborn they work so hard for the money for their families, and to spend it in five minutes and not get a definite answer is frustrating for them also.  Try to be understanding fix him one of his favorite meals, offer him something to drink etc. Remember luv this is on his shoulders and you should try and spoil him a bit, this is one of those moments you shake your head and let him vent and don't add your opinion. (as hard as it is) unless he asks. Ask him if he would like to try another dr. or if he has faith in this one. If not then go from there. Best of luck, Sarahjo

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LMH,

 

I understand where your coming from.  I made a post in another thread (http://forum.parkinson.org/index.php?/topic/15316-prozac-sleep-apnea/#entry62846) for someone who is in a similar situation.  It's rough being in limbo land, but at least the doctor isn't blowing your husband off.  He definitely sees something is wrong, he's just not sure what it is yet. If it were me, I would take the prescription hoping that it works.  If it doesn't, he can at least check off one thing from the list of what it is not.

 

Dave

Edited by Daven

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I know it's a process but just the fact that he doesn't think people younger than 50 can have PD makes me think he's not the right neuro for us. Even hubby told me there was a certain "air" about him, like he was thinking "Now what does this guy have wrong with him?", know what I mean? Some doctors shouldn't be doctors if they don't really want to help people. I can understand the elimination process but for a doctor to completely ignore or outright disagree with what a patient is telling him is wrong..... On the bright side, after calming down and discussing it a littler more, hubby is willing to see another neuro. There is another we can see, he's a little further but from what I've heard he is experienced in PD patients and I haven't confirmed it yet but I "think" he diagnosed a local with YOPD, so if he's the right neuro who saw her then he KNOWS there is such thing as YOPD.... I just hope our doctor will refer him.... In the meantime... I read the beta blockers that were prescribed to hubby lower blood pressure and now I'm not sure he should take them b/c hubby has lower blood pressure than most people. AND he's not suppose to.... basically he can't work while taking it... And that's something else hubby didn't like, the doctor just shrugged like it wasn't his problem... If hubby can't work while on meds, he won't take them.... I'm going to try and get our doctor in touch with the other neuro Monday.... Maybe that one will take hubby more serious, and I suggested to hubby to write down every symptom he can think of before seeing anyone again. I didn't think of it before....

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LWH,  I definitely understand about a doctor showing disinterest or just to busy to really pay attention.  I think my first MDS cared and wanted to figure out what was wrong with me, but he was very busy when I saw him.  My appointments last about 5 to 10 minutes, not enough time to figure something out.  Good luck with the new doctor.

 

Dave

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