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Librarian

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Librarian last won the day on August 13 2016

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About Librarian

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  1. Howdy folks, DH Is a painter (walls, not canvasses) and the doctor has said he can't get on ladders anymore. Um, what? Eek! But we work at a university and they have a nice ADA office and we need to register his "disability" and ask for reasonable accommodation. Background: But, his boss is a racist, sexist homophobic a$$hole. DH doesn't play that and never has. Doesn't make him popular. Then, boss has at least four times given incorrect info to shop. And he lied about a safety violation. In each of these instances DH went around boss, had higher ups reprimand boss and even write him up for safety violation. Again, makes him pretty much hated. Cut to the chase: boss gets to decide whether requested accommodation puts undue burden on shop. We don't think so. So DH can't get on ladder. He can still paint walls, doors, railings and he can use a darn roller on an extension. 1. And if boss says no, screw you, we can probably win if we get a lawyer. Lawyers cost money. Going on disability until we win means serious loss of income. 2. Yep, we can ask for them to find him another job on campus that doesn't require ladders. But there are no such openings right now. Hopefully there will be but not right now. 3. Have contacted several Disability lawyers who have said they only deal with social security issues or Discrimaination cases ( can't prove boss has retaliated). 4. Have looked at JAN network but no wording that fits us. Have looked at PF and MJ Fox site and no wording that fits us. DH probably has years and years (god willing) to work. He just has tremor and a bit of a balance issue. So... I would LOVE to see wording your dear ones have used to ask for reasonable accommodation with PD. Anyone?
  2. Hey, I'm not the best on how-to-cope issues but I do have a few things to say in response to your post. First is the deceptive comment. My dh just got diagnosed this year. He is doing great, mostly just the tremor and that not so bad either. Still dealing with the diagnosis, I just had to come here to the caregiver forum. I felt like a fraud since dh isn't bad and I really don't have to give any care. But you know what I realized? I need to give some care psychologically. And I need to give some care in terms of directing medical attention. He doesn't need much of that but still needs some. I talked him into going to a clinic for an overall evaluation. Speech therapy, physical therapy, doctor, occupational therapy. That talking-into was a form of caregiving. So please please come here to talk about anything you are doing to give support or care. And to get support and care from the forum. They are good at that. They didn't make me feel like a bozo.. I suggest seeing a counselor or therapist. If you are religious perhaps seeing your religious leader. I'm not religious but we have a family member who is a pastor and she gives good counseling or just a needed ear. She also got me in touch with a guy near me who has PD who I can talk to. I know he has PD and I don't but he is willing to talk. Our PD clinic has referral to PD groups but I'm not ready for that so this guy is a good middle ground. Getting out, doing things for yourself etc. are all necessary things. And you can take or leave any of this. Just know that you can come here and are welcome even if you feel you aren't giving "much" caregiving. Oh, one more thing: my coping after the diagnosis was to go online to learn every thing I could. I work at a university so was even able to check out medical articles. It helped a lot. I was breezing along, feeling like I was cool and then wham! I suddenly could not read a darn thing about PD, couldn't cope with seeing anything on TV, etc. Mind, this was months after I'd learned all I could. I'd stopped looking stuff up because I felt comfortable in my knowledge. But delayed reaction set in and I was filled with anxiety if I hear PD stuff. I'm through that stage now but mention it so you won't feel crazy if you go through stages you never expected. DH, on the other hand had a different coping mechanism. He learned a little bit about the disease but then said, okay, I don't need to hear more right now. If I get a new symptom I'll learn about that but I don't want to spend time learning about everything and maybe living in fear. I mention that just to show how different people can cope differently and neither are the right way or the wrong way. Last, I did notice that the forum isn't hopping. You might make a comment or ask for advice and get a quick burst of replies. However, sometimes you'll post and it will be a month before you get a few replies. Don't get discouraged and do check back. I have no idea of the difficulty you face with kids and a your friend with cancer. But I do send you healing thoughts through the universe silly as that sounds.
  3. FF you blow me away. How can so much wisdom and caring exist in one person!?! NN, forget your family, I want you both to move near me! I want both you and FF to move in, lol. Let's buy up a few houses in my neighborhood for y'all and some of the other caregivers here. I can't afford assisted living so this would work. Seriously, just my opinion but as a daughter and sister I would have much preferred a family member to move near me as they dealt with a degenerative disease. I helped during the final stages of my sisters life, she had MS. Even with the extra burden and the unpleasantness of the harsh realities of the disease there were moments of perfect beauty, perfect connection. And many of these moments were when she could not respond. But I could hug her and touch her and sing to her and tell her stories about her life. It was also a way to begin to let her go. I KNOW this is very different from the long slog of caregiving that can sometimes take years. But I also know that PD caregivers also have some of these moments. Plus, it would relieve my worry a great great deal to have my parents here where I at least know what is happening and can take control at least a bit. And man would I be worrying about my mom who'd be doing all the caregiving. I'd want her near just so I could hug and touch and laugh with her. Again, just my preference but you did ask. Hugs and touches and laughs to you all, Librarian
  4. JillianD, I may be totally full of sh$t but that sounds like a really abusive situation. From him and from his children. I'm not talking about the sex part- I truly believe that could be the side effect from the meds. It really sounds like that. I'm talking about all the other stuff you described. The lies, combativeness, etc from DH and the stuff from the children, especially the way they are dealing with the death of their mother around you. I wish you all the best and hope you are able to get away a bit. And if you decide you have to completely walk away I hope you can realize that that might be the most courageous thing anyone has ever done. But if I'm way off base, I still wish for you that you can get some respite and support as you deal with the difficult situation.
  5. Wow! What an incredible amount of support and advice and just simple acknowledgement! Thank you all so much. I hope that in the future anyone dealing with a mental illness and running scared will see these postings and get the wisdom and love and reassurance and advice y'all have provided. - I am on meds and have a great triumvirate of medical doctor, psychiatrist, and therapist. I've signed all the paperwork for them to be able to talk to one another and they actually have done so! If I start 'slipping' they will step in. I have the best medical doctor on the planet. She saw me having a psychotic breakdown, helped me through it and then later asked me if she could be my medical doctor. She actually wanted to make sure I had a doctor who understood my special needs and would see to my physical health in a way that would work with my mental health. And she does. - further putting on the oxygen mask I made a series of appointments that I have put off for years to take care of my health problems (found out I have kidney disease so will treat that- good thing I did this). - have gotten agreement from DH to - go to all day clinic to meet with specialists to get baselines on health - join gym with me so we'll keep up his strength and balance and my health and stamina - go to lawyer to start POA and all the other authorizations. AM REALLY GLAD you mentioned having back ups for this, not just me for him and him for me!!!! Never thought of that but it is oh so important! We don't have kids, we don't have anything to do with his family and I'm the youngest in my family so can't count on my siblings being around much longer to be able to act for us. I like the idea of having friends with authorizations. - I am trying to get out of the house and have actually tried to make a new friend. I joined a book group as well. These are huge steps for me. I've isolated and know I can't do that if I'm looking for support. So, thank you all. And again, I hope that anyone coming along in the future with this kind of concern will be able to read your welcome, support and advice and warmth.
  6. I thought I'd refresh this question in case any new folks might see it and consider responding. Im the one who has a mental illness (bipolar I- the one that comes with nice hallucinations at no extra cost ). My DH just got diagnosed with PD and I'm learning and giving support. I'd just like to touch base with others in support roles who are also dealing with mental illness. I bet more of us are out there. Every person on this forum has a unique set of challenges. My hope is that someone reading forum postings who has a mental illness might see this post and feel like it is ok to discuss this as one of their challenges. I'm not trying to push this topic. I'd just like to have it out there for a bit in case any lurkers () want to come out of the woodwork. I promise to let this topic fade away if there are no more responses. I wish you all peace...
  7. Hey NN, you may never see this reply since it comes so long after your post but... I appreciate you asking this question. I too have a loved one who just got diagnosed. He doesn't need physical care. And he doesn't have dementia. But he does need some care in learning what this is and what he needs to do and making and going to appointments and so on. So that means, by folks here, that I don't count as a caregiver. And they are right. I count, really really count, as a lover and partner to my husband. A helpmeet as he navigates new waters. But that doesn't mean the advice from these truly miraculous and still human CGs here isn't something I can't benefit from. In fact, part of my coping mechanism as I adjust to this diagnosis is to scour this discussion forum for the insights and humanity I find. I love what Christie wrote. And I learned from the comments reminding us to stay partners when we are partners and become CGs only if and when it becomes necessary. While I will continue to glean, as you put it, insights as I read other posts I am grateful to those who actually do give advice when asked, as you asked in your original post. So Thanks!
  8. I can't tolerate marijuana but I can see that it might help. I have a lot of anxiety so I use lorazepam which most people see as legitimate but some of those same people get up in arms when marijuana use is mentioned. So, I'm not really answering your question, am I? But I do hope you get the support you need here and I really really really hope you don't get flamed for asking a question.
  9. This is my first post. DH just got diagnosed with PD. He's at early stage. Not on meds, has tremor in right arm, leg and face. This is good! He's not very far along. And who know? He may not progress very much. Bu I need to get on here to see if I can locate others who are or will be caregivers who also have a mental illness? Are you out there? I am bipolar. A year ago I had a major problem with it and i was hospitalized three times in two months. Of course I'm on meds and seeing therapist and all that but I've not returned to "normal" and I'm so scared I won't be able to help the love of my life through all of this. His head is in the sand. He won't read anything about PD, doesn't want to consider whether plans might need to be made for the future. And it IS the future. Again, they have discussed meds but have not put him on anything. We don't need to do anything drastic. I'm cool with my role of finding out information and giving it to. Him as he needs it but we do need to do some things. But God I'm scared I'll lose it again when he most needs me! Anyone have these same fears? Oh, I digress!!! Again, the reason I'm posting is to find others with mental illness here. I want to connect with you. Be able to share our fears and hopes and experiences. This is not a 'woe is me' post! I just want to see if any others are out there. Thanks.