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Topic Husband with PD and his work Go to previous topic Go to next topic Go to higher level

By Agrits54 On 2010.06.09 16:06
My husband just found out last month he has PD..He came home last night from work, madder than I have ever seen him. He had a talk with his boss, right after he found out, just to let them know. Cause they had noticed a change in his speed of walking and other little signs. So for the past few weeks everything seemed to going fine, until last nite.

My husband works in hospital maintence, on the 2nd shift where he works, he is totally by himself, responding to calls, like if one of the beds isn't working correctly, replacing bulbs in the lights, different things that may come up. And if there is a fire alarm, he has to climb lots of stairs, make sure everything is alright, get in touch with people, cancel the alarm if it is a false alarm. Stairs are really getting hard for him to do now but he does the best he can.

The reason for him being mad is this, his boss and some of the other fellow employees, are questioning his diagnosis..Jack doesn't have tremors at all, his is his gait, his speaking at times, etc..So yesterday, he gets to hear, 'well my neighbor trembles all the time' or 'my uncle shakes so bad'. He tried to explain from what he and I have read, not everyone has the tremors, that is just a more, outward sign, but not everyone has that.

He is really thinking hard on retiring, he has been working there for 36 yrs..He is 56 yrs old and has just about had his fill. Of course, that causes stress, on if and when he should do that.

I have worried for years about him being the only 1 on the 2nd shift, some things he has to do each night are dangerous, like blow the boiler, if he got hurt, who would know in time to help him. Security would probably come looking for him but would they be in time..

His next appointment was to be in September, but he got me to call and have it sooner..So he goes back in July, he is planning on talking to his doctor about getting on disability.

So how do you handle, JERKS, who question, what a professional neuro doctor, has told you!? I could come up with a few, but :D..he might get fired.

By LOHENGR1N On 2010.06.09 19:47
Agrits54, Hi and welcome to the forum. While things have gotten better over these long years and there is more public awareness about P.D. there still are so many misconceptions. I Myself would probably retort something like and where did you get your degree in Neurology? However I'm not employed or trying to keep My job. I've been for the last 24 years trying to educate the public about Parkinson's it's an uphill battle. Many years ago MJF came out about having P.D., He was doing spin city at the time and was talking about having a thalamotomy and working for another 10 years. You can not imagine the number of people who asked "Why don't you get that operation MJF had, it cured His parkinson's!" We all know it didn't work out that way, however it created public misconceptions to be dealt with. And still they have a radio host mocking His condition now! All I can do is say I know of which you speak, the cure for ignorance is education. The cure for stupidity? A two by four? I don't know. One thing I do believe in is karma, so I leave it to that. Again welcome to the forum, take care, best of luck and hang in there.

By lurkingforacure On 2010.06.09 20:51
Hello and welcome to our forum. It sounds like things have not been very good for awhile at your husband's job and the PD is just the icing on the cake. We all know stress is a big no-no for our loved ones with PD, so if the work is too stressful (and you have some pretty major safety concerns for your husband on top of that...) then perhaps he should consider leaving. Bad morale at a workplace can ruin an otherwise very happy work situation.

Before he does that, though, you and he need to talk about what he will DO with all the time he will have if he quits. I found that my husband has a VERY hard time not working. He is miserable at work an awful lot because he has so much pain or is sleepy or the stress of ten people trying to talk to him at once, but he is more miserable not working. We tried a day or two here and there of not going in and it was clear he NEEDS to keep his brain busy doing what he loves (computer programming) but the day-to-day dealing with the people and office management are killers.

Our neuro told us that many PDers get depressed when they quit work (whether they want to or not, that point comes for all of us) because they then have a lot of time to think about how lousy they feel. So we feel, for us, it's better to work which helps my husband take his mind off his situation as much as possible, for now. Plus he loves the programming part, and of course feeling needed is something all people crave intuitively. So I would sit down and have a heart to heart about what your days/weeks/months will be like if he leaves his job.

As far as people making ignorant comments, just get ready. I never cease to be amazed at what people have said to us, behind our back, or under their breath so we can hear. I used to fantasize about getting even with some of these morons but I no longer have the energy for that and I now feel sorry for them at how ignorant and lacking in compassion they are.

By karolinakitty On 2010.06.09 21:32
Agrits54 ... My guy is 53 and been DX almost 2 years ... he doesn't work, disability can take up to three years. Here in SC, the attorney we had told us that 95% of cases get turned down the first time, second time, only about 45% of that 95%even go for round 2, then about 95%of those are denied, then your have your hearing which can take 18 months or longer to have. So be prepared for that. Also, if he still has any intellectual capabilities, they will deny him. We've been there and done that. I had a big battle with them but won. Even though i had an attorney it wasn't him or his office that helped the case. I did a lot of letter writing and his case ended up in the legal office in MS, because of a certain intelligence test they gave him, whereas they told us it was memory/concentration.
My guy has PD plus.... has very few outward tremors but still has the"inner" tremors that cause his muscles to keep moving all day long. He has the slowness, rigidity, stiffness, dementia, an eye palsy, and some other normal PD traits. He was first dx with PD, then January of this year we were able to go MUSC Movement disorder clinic where he was diagnosed with PD Plus. If you google that, you will see there are several diseases listed under there that go hand and hand with PD. Some have different symptoms then others. While the doc said he was under the umbrella of PD plus he set his sights on DLB, Dementia with Lewy Bodies and i think that was because his cognitive thinking and short term memory loss were so bad.
You may ask your neuro for a referral to a movement disorder clinic. They do so many more tests to see what is what and they know more about PD then the normal neuro. It may take a while to get an appointment but it was well worth it for us.Neuros know what PD is and I'm not knocking your doc, it's just that the Movement Clinics see patients like that all day everyday. Neuros see a variety of different cases.
Like Lurking said, stress is a big culprit and he doesn't need that to add on to his troubles.
If the job is a big problem and he knows maintainence maybe he could do side jobs, but if he has a good insurance plan maybe he could just hang on. Our drugs are expensive and there in help out there, it's just going through the paperwork.
Mine kinda enjoys his retirement. He putters all day long to keep active and has his fishing to keep him busy. He's a fighter and like a few other guys on the forum here, he has a good positive attitude.
Stay with us and ask anything you like. We are not shy and sometimes teel it like it is, but sometimes that is the best way. Candy coating this diseasse helps no one. As LO said people who don't know about this disease, think it's nothing but a shaking disease and it is not. There are so many other things that go along with it. Mine has been called a drunk, because he stumbles and walks "funny", and lots of other "fun" stuff but he goes forward with head up, at least as much UP as he can get it..... :)

By Emma On 2010.06.10 05:40
Welcome to the forum, I think you will find that this is a great place to get information and just to vent.

I'm sorry that your husband is going through these problems at his job. As far as the ignorant comments, and I know what that's like, the best thing he can do is look at those situations (and there will be more) as teachable moments. There are some true jerks in the world but I really believe that most people are just speaking from lack of knowledge. Parkinson's used to be called the shaking palsy and that's how most people still think of it. When my husband was first diagnosed we both thought that tremors would be the main thing he had to deal with. We had no idea. The truth is that most of us are not doctors and know very little about specific diseases until they affect us or someone we're close to. Personally, I seem to have a big hole in the filter between my brain and my mouth and I've had to learn to plug that up sometimes so that I don't alienate people by making snotty comments when education would work better. It's tough.

Before he decides about applying for disabilty do your homework. You can't get disability while you are working so he will need to quit his job before he applies. Then it's a big crap shoot and as karolinakitty said, if you are denied on the first go round you have to appeal. The whole process can take up to three years so you have to have the financial resources to get through that time in case you're turned down. My husband got approved on the first try, but I had some experience with Social Security and disability before that and I did a LOT of research before filling out the application. They will look at whether or not your husband can do any job, not just the one that he is currently doing. And they will have him examined by a psychologist to dtermine if he has any cognitive issues. If his physical symptoms are severe enough to keep him from working at any job that won't matter, but otherwise it will probably be the determining factor. In real life we always want to focus on the positive and what the person with PD can do, when you apply for disability you have to switch gears in your mind, get negative and focus on what they can't do. If possible I would suggest talking to an attorney who specializes in SS Disability before you make a decision to take that step. I found that doctors don't really know much about it, they define disability differently than Social Security does and Social Security doesn't care what your doctor thinks, they have their own criteria for determining diasabilty. I don't mean to be discouraging, he may well qualify, you just need to know that it isn't a given and be prepared for that and go into it with your eyes wide open. If you want to know how much he would get on disability look at the statement SS sends out periodically. Whatever it shows that he would get if he retired at age 65, or 67 or whatever it is for him, that amount is pretty much what he would get on disability. After being on disability for two or three years (I can't remember which) he will get Medicare, regardless of his age.

Good luck to both of you!

By packerman On 2010.06.10 09:41
my hubby is 53 and on SS Disability. it took 2.5 years and 3 denials.

thru his employer, mine had long-term disability insurance that paid him while he waited, so we were quite lucky not to have to go without some source of income.

see if your hubby's employer has disability coverage on him. maybe you could go that route until he gets approved?

edited to add: if you have kids, SS will also pay a monthly amount for each one until they reach 18. this is what's funding my son's college tuition.

By heather2161 On 2010.06.10 11:56
My husband was 53 and had always worked as a custodian in the schools. Due to budget cutbacks he was laid off and then shortly after that diagnosised with PD. We are in Oregon and his SS disability was approved in approx. 3 months. We completely and truthfully filled out the forms and I as his spouse included a two page description of what things he was unable to do that he previously could do. We did not have a lawyer, but had great cooperation from both our primary care physician and his neurologist in submitting complete medical records etc. We were warned it most likely would get denied the first time but that didn't happen. We submitted the forms and he was then interviewed over the phone (we lived in a rural area at the time) and then he was granted his disability. I know there are many horror stories out there and each state is different, but I just wanted you to know there are also good outcomes. Good luck to you.

By parkinit On 2010.06.18 13:31
I don't know how many times I have had to break this down for people. We were ignorant once, too, before we became "Parkinson specialists" (said tongue-in-cheek). I lay it out very simply: There are two types of Parkison's - one is the tremor - very evident and visible, the other is a 'rigidity' type of Parkinson's where the person is stiff. If they still question it, tell them to do the research.

I find it admirable, acatually, that your husband's coworkers care about your husband and are trying to help in their own way.

By lvmymom On 2010.06.18 14:25
Your husband friends and coworkers just don't know. It is simple. I agree with the post above this one. I find their navie questions a means of getting to know your husband's illness better and it shows they care. Maybe a good answer would be "I know, many with PD do have bad tremors. I guess I'm lucky that symptom hasn't been one of mine. I'll keep my fingers crossed". If he has worked there 36 years I imagine he likes something about it. Keeping the body and the mind strong is easier when you are useful and active.

I believe that people are generally nice and caring; when they ask questions it is not with doubt that they ask, it is with concern and a desire to know more.

Take care and good luck.

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