Helping Those Who Care for Parkinson's Patients
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Hi Everyone! I'm new to your forum and so happy to find you! A place where everyone can support and help each other! I've been reading your posts all morning and decided to sign up. My husband has PD and was diagnosed with it 3 1/2 years ago right before we were married. He is 53 yrs. old. He's on Mirapex and Azelect. He's doing pretty good. I've noticed his tremor has gotten worse the last year and he's slowing down. He has had a problem the last week and I wanted to see if anyone has had the same thing. He isn't sleeping much because of energy jolts early in the morning every night. He says it feels like lightening going up his spine and it wakes him up about 2 and he is up for hours after that. We don't know if its the increase in Mirapex (which he's going to decrease and see) or its something that happens as time goes by. He gets up and does Yoga and watches a movie until it passes. Sometimes it does it in the day but its become a real problem during his sleep. If anyone knows of this problem I will appreciate if you get back to me. I haven't read this problem on the forum but I haven't read everyone of them. I'm looking forward to being a part of this forum and getting to know you. It's great to have your support and can all be there for each other. |
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In this article, under symptoms it talks about a jabbing, burning pain that some patients may experience. My FIL has also described a feeling like lightning similar to your description. Don't know if this helps, but at the very least, others with PD have experienced the same thing. http://www.ninds.nih.gov/disorders/parkinsons_disease/detail_parkinsons_disease.htm I just found this article which was last updated in Jan. and it has helped us. -Jenny |
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| Thanks so much! I really appreciate the info. I'm going to read the article now. |
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We have this as well, oddly, my husband will be dx'd 3 years next month, at the age of 43. Sleep is a real issue for us. We are now getting up pretty regularly anywhere between 4am-5am, if we make it to 5:30 I feel like we have overslept! It is very hard because we have young kids and by the time I get the oldest up to get ready for school, I have been up for hours! It is very weird, and then I am completely exhausted by 8-9pm. We tried melatonin, a natural supplement, which did nothing. We now take, and have been taking, low dose naltrexone, which many believe slows progression but the claim is not supported (yet) by mainstream medicine. You can google it and learn about it if interested. I can't say it has stopped my husband's progression, he has definitely progressed, but it does seem to help him with his sleep. We still wake up too early, but at least he is not getting up a 1 or 2am, fighting to try to get back to sleep, and finally nodding off at 6am when I would otherwise have to get up to get our daughter ready for school. Hope this helps. I wonder if these lightning jerks are a form of myoclonus, which we all can experience as we begin to fall asleep (and our neuro said they mean nothing and are not PD related). |
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| Thanks! we're going to look into that for sure. This sleeping problem just started about 10 days ago. All this time he's been fine. It's going to be a problem also because he's looking for a job. And you know how that goes the next day if they don't sleep long enough. Is your husband working? Mine just got layed off at Christmas and can't find anything yet. He wants to work as long as he can. He works with computers so the typing is slow with his tremors. I'm wondering about disability for him. It's sad for anyone to get PD, but our husbands are still so young.I appreciate your help!!lets keep in contact. |
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Yes, my husband is still working and thank God, because for him, staying at home makes him incredibly depressed. We have tried that a couple of times to give him some extra sleep, and it has been pretty much a disaster every time. I think there is something about keeping your mind busy, and off your symptoms, that really helps. Plus the routine of going in to the office every day. I completely understand that because my mom is 75 and STILL working! She told me she would be depressed and feel useless if she quit, and I believe her, I have seen it with others. It makes her feel needed, useful, and not as old as she is. Good for her! Hope I'm still going like that when/if I reach that age. So weird, my guy is a computer guy as well! He says programming is mentally therapeutic, and our neuro says keep at it, use that brain, use that brain, use that brain as long as possible (this goes for me, too!). The typing is wicked, lots of times he has to wait for meds to kick in, and then he has a very short window to work with. He tried dictating, but that was too slow and he found it very frustrating. So for now, he is pecking as best he can, and still finds what little joy his brain will allow in the activity. I hope he can always program, because he is so very good at it and enjoys it so much. Good luck with your husband finding a job, while he is looking, perhaps he can still do some programming on the side to keep his brain busy? |
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| Carebear & Lurking: Keep those guys working and DO NOT them stop using their brains. That is the best exercise we Pd'ers can get. I am 77 and still using everything from the chin up fairly well. I started with computers in the 1950s when banks were posting their statements with NCR machines. If either of the guys are having particular difficulties with their keyboard have them look at speech recognition software. I am tutoring on it now. It works! Bob C |
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babdidol, Thank you so much Bob with your help and input! My husband is on the computer many hours of the day. He is layed off from work and looking for a job now. He does have the speech recognition because his tremors make him double each letter. It works very good its: Dragon Naturally Speaking version 10.Sounds like your doing pretty good! Thanks! |
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| Lurking, I wanted to tell you my husbands speech recognition for the computer works really good! It's:Dragon Naturally Speaking version10. I think you said your husband didn't have much luck with the one he is using. My husbands sleep is getting worse and now its in his feet. So I told him your husband is taking something at night. I have to look up the Mirapex he's taking and see if thats a side effect or its part of PD. I wanted to ask you how your husbands work is about his PD? My husbands job didn't know he had it. He would be in an office alone a lot and at meeting put his hands under the table. Now he's looking for work since e was layed off and its obvious he has it. Its gotten worse the last year the tremors. |
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Carebear, I think that's the one we tried. The problem for my husband was "holding it all in my head", as he puts it, as he tried to dictate the code. He does massive software architecturing, including the graphics, before he gets down to the nitty gritty of writing the code, and it's just too much. I have seen some of his architecture drawings, with the boxes that lead to other boxes, and the last one took up pretty much the entire wall space above his desk, it was almost ridiculous. Mirapex, some people love it and it works wonders, we barely tolerate it but have to take it because it is the ONLY thing that helps with the tremors (for us). It makes my husband very sleepy, but we found that if he only takes a .5mg at a time, instead of a whole 1.0mg, the sleepiness was reduced and he still got some, not as much, tremor control. He now takes .5mg mirapex with each sinemet and that seems to be working. It was really hard, because he'd take the mirapex, and be so sleepy he couldn't work, yet his tremor was pretty much gone so he could really type if only he could focus! Exasperating. The good thing is that he titrated down from a total of 3.0mg to 1.5mg, and has stayed at that level for a year or more, I forget exactly. The other side effect was that the mirapex makes him feel like his head is "foggy" as he puts, and he hates that. In the morning, when the drugs have pretty much washed out of his system, his head is really clear and he loves that feeling (pretty much how we all feel all the time, I no longer take this for granted) but once he takes the meds he gets cloudy and really has to work to focus. What a nightmare that must be. Taking half as much mirapex as he was has really helped reduce that foggy feeling. If you try this, be sure to titrate down slowly, like reduce the amount by .25mg a day for a week at a time to where you get to the right balance. I found it very interesting that our neuro admitted that mirapex was really the only thing that helps tremors, and that sinemet is for rigidity (mainly), and the azilect for alleged progression delay. I was surprised, I thought we were the only ones whose tremor was not helped by sinemet. And I was surprised to hear him say that really, sinemet only helps with the rigidity, which we also unfortunately have badly. It is very, very painful and so little I can do to help. Keep your husband's brain busy, it would be very easy to get depressed, being out of work on top of the PD. Oh, on the telling people: my husband is incredibly private. And that is a huge understatement! He owns his tiny company so he has no "boss" per se, and has only told one senior employee (a mistake, by the way). I suspect that when he HAS to, when he is ready, he will tell the others. He still has not told his family, nor our kids! I had to be the one to tell his dad, but with the strict instructions that the news not be shared with his mother, because she is frail and he doesn't want her to worry. It is a very difficult family situation, to say the least, especially at family gatherings, and there are lots of those because most of us live in the same town. Sometimes I would just like to be able to fall apart in front of our kids but can't. It's probably for the best, although it's hard. I don't know what my husband would do if he had a boss, but would guess that he'd try to keep his condition private absolutely as long as possible. When your husband finds a job, could he work from home? My husband has the ability to work remotely from home, but it's very hard with the kids at home plus our connection at home is so much slower than the one he has at his office. Our neighbor does computer consulting of some sort and he works at home almost all of the time...he has lots of flexibility in terms of hours which would be great for someone with PD, and he doesn't have to go in to an office. Maybe your husband could look for some programming work that is more in the nature of consulting instead of having to physically come in to an office. I really don't know the market but programming is one of the trades that seems very conducive to home offices. Our prayers are with your family as you search for work and I hope he finds something he really likes soon. When my husband was dx'd, we discovered that if you had to try to categorize the people who got PD, it was as follows: clergy teachers programmers There are exceptions, obviously, but a larger than normal percentage of folks in these professions get PD. Programmers, isn't that interesting? We decided that it's because the people that go into these professions tend to be selfless, and very giving of themselves to others. Something about that personality is tied in with PD. I tried to think of one jerk who got PD, and could not! Why is it that the turds of this world escape PD and our wonderful loved ones get stricken? Crazy. |
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| Lurking, One jerk who got P.D. ? Adolph Hitler! |
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| Love that! And what a jerk he was! But was he actually dx'd, or from what I read, there was really only speculation that he had it, based on photographs and looking at how he held his hand, arm, etc. I have never read anywhere that there are medical records actually dx'ing him with PD. |
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Lurking, Hi! My husband takes Mirapex .875 3 times a day and .625 l time and then Azilect 1 mg. 1 time a day. It's not helping the tremors much. They've gotten worse the last year. My husband is private to and I'm really nervous when is does go for a job interview what will happen if they notice his tremors. When he gets nervous they get really bad.Or course he's not going to tell them unless they ask. He is looking into working from home, which would be the best doing consulting work. He does IT work. He knows computers really good.Then we were thinking of opening our own business. But I don't think that's a good idea because I'll end up running it and taking care of him at the same time. We were thinking of a retail business. With Michael J. Fox behind us there has to be money poured into the research for this answer. Our family knows his has PD but not friends. He told I think 2 people outside of family. He doesn't talk about it to them though. That must be very stressful for you at your family get togethers. Nobody notices any changes in him? his walk or slowness or tremors? thanks for the prayers and i'll keep you and your husband and kids in mine. Talk to you soon. |
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Carebear, only my husband's brother has noticed anything. What actually sent us running to the neuro were some comments made, all within one week, from employees who said things like "why aren't you swining your arm when you walk?" and "you look like a deer caught in the headlights", he googled this, and we were horrified at finding PD linked with this. We thought the worst he would ever be dealing with was high blood pressure, which runs in his family but he doesn't have. Ah, to just have high blood pressure and NOT PD! Stress definitely makes my husband's tremors worse, and to top it off, it makes his meds expire much faster. He calls it "burning through the sinemet", because when stressed, he will need to take more sinemet more often, and risk dyskenesias, in order to function. Our neuro has given permission to play with the sinemet dosage, which I appreciate, because I find that some days he may need only 3 sinements, other days, as many as 5. He hates those days, though, and it's rare when he will cave and take that much. I would not be too hasty to nix the home-based business idea. I always planned on going back to work after our kids started school, part-time at least, and have decided if my "work" is helping run my husband's business, well, that might be the best of both worlds, because until a cure is found, he will continue to progress, at some point having to work at home, and I can help earn some income as well as take care of him, instead of having to pay someone to do that. I would look carefully at what lies ahead, worst case scenario, as hard as that may be, and do a list of pros and cons, with what you can handle and what you would have to pay someone to help with. I am a small woman myself and would have a very hard time lifting my husband...OK, actually, there's no way I could lift him, so would have to have help with that when we got to that point. Things like that, will help you get a clearer picture of what would be best for your family. Plus your husband will probably be a lot happier working from home, than not working at all. You might want to discuss these options with him to get his feedback, and then go from there. Keep looking for a job, sure, but have a plan B in place he doesn't find one by a certain date. FYI, on another forum a lady recently dx'd with PD went looking for a job. She had three interviews: two of them, she told about her newly-dx'd PD, and of course they said it would not affect the hiring decision (ha), the third one, she said nothing. Guess who did not offer her the jobs, and which one did? Yep. Sad, but true. I'd be careful what I said in any interview. |
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| Lurking, Supposedly it was well documented by His doctor (along with treatments given for His Parkinson's). Hitler as far back as 1933 was mentioned as having P.D.! LOL, sometimes the computer is like having one of those "magic 8 balls" from childhood, I typed did Hitler have Parkinson's Disease? into my browser and shazam! Take care, best of luck and hang in there. |
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Hi, Caregiver and welcome to our forum. Yes, I knew that Hitler had PD. Now that is one case where the person should have quit working sooner! |
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Hi Ann! Thanks so much for the welcome! I think I'm really going to like this forum. It's wonderful talking with people with the same problems! We can all support and help each other. I look forward to talking with you!! |