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Multiple stressors within a close time period


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#1 jerber

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Posted 13 February 2012 - 01:14 AM

Hello all. I am new at this, so first, let me give you some background. I was diagnosed at age 46 ( two years ago). My husband has been great and has helped me beyond my expectations. (I was diagnosed less than one month after he had brain surgery & was still in the process of helping him out). Because I was experiencing heavy tremors, he talked me into going to a movement disorder specialist at St. Joes, which is where he had his surgery - very successful! Finally, I agreed & drove us up to the Muhammad Ali Parkinson's Center in Phoenix. You could have knocked both of us over with a feather when the doctor gave me his diagnosis! We've agreed to take good care of each other " for better or worse". 8 months after my diagnosis, my dad passed away from Leukemia. This was very fast as he passed away just 4 weeks after his diagnosis ( on my daughters wedding day). We had promised him that we would take care of my mother and she has been living with us since because she has low vision & is legally blind. So, now I'm her caregiver & at the time working 10 hours a day. No problem, right? Wrong! I was so exhausted from working & taking her to appointments, etc. my PD symptoms were really acting up. Mostly tremors & major major fatigue & depression. I finally had to take short term disability as I had exhausted all of my sick time, vacation time and personal days (I use the word challenge instead of disability). Work frowns on falling asleep during important meetings! I've been off work now for 6 months, but didn't realize how stressful life would still be taking care of someone & trying to be proactive with my own health. Guilt is an understatement! So, I'll get to my point. We looked into assistance for my mom. Help with transportation, etc. there are many programs that are government funded If you qualify. We ended up finding a retirement apartment community for her that is for low-income & provides meals & transportation, etc. she will be moving next month & is actually very excited. Now, she will have people her own age with similar circumstances to talk to: something she misses terribly. In the mean time, I have taken up Zumba and just love it. Yes, a lot of times my left side does not want to cooperate, but I find it's allowed me to better control my movements, strengh and balance! It is also such a great mood lifter, which I need now more than ever. Curled up in a ball crying for hours is no fun :cry: . I would tell anyone that talking to a relative or friend is so helpful, even if you don't feel up to it. One day at a time is my new found inspiration as well as being able to laugh at yourself! Laughter is the best "medicine" and we do a lot of that around this household! Thanks for letting me vent! :rolleyes:

#2 Luthersfaith

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Posted 13 February 2012 - 03:30 AM

. I would tell anyone that talking to a relative or friend is so helpful, even if you don't feel up to it. One day at a time is my new found inspiration as well as being able to laugh at yourself! Laughter is the best "medicine" and we do a lot of that around this household! Thanks for letting me vent! :rolleyes:



Vents are great. They get rid of old, stale air and bring in new, fresh air!Posted Image


"I have told you these things, so that in Me you may have [perfect] peace and confidence. In the world you have tribulation and trials and distress and frustration; but be of good cheer [take courage; be confident, certain, undaunted]! For I have overcome the world." - Jesus (John 16:33)

#3 MarciaJ

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Posted 13 February 2012 - 09:28 AM

Sometimes we do what we think is right but there are other paths that are better. We have to be flexible enough to see them also. We moved in with my dad. Then found my tremor was PD. I never would have attempted to be a caregiver if I'd known. We stayed with him 1 1/2 years and moved and my siblings became the caregiver. He died at 96.

I have a sibling in a retirement/assisted living home and it's great for her. Hers is church supported, not government, and most of the rooms/apartments are expensive but they do accept some low income and base their rent on income. You should always ask and not assume it's too expensive.

Edited by MarciaJ, 13 February 2012 - 09:29 AM.

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#4 Golden01

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Posted 13 February 2012 - 04:17 PM

jerber:

They say that when it rains, it pours, but I think you've had a flood! So many things to deal with all at once. You are fortunate to be able to go to Barrow's at St. Joe's and the Muhammad Ali Center. You will get good care there.

Are you applying for Social Security Disability after your six months away from work? My husband was off work due to PD for 5 months last year and is now back to work 3 days a week but we are not sure he can continue. In the initial telephone "intake interview" with a disability attorney's office this morning, he was told that he should have applied when he was off fulltime. That because he went back, even part time, the wait time will probably be a a year or more before an application could be submitted. A lot like picking a doctor, we probably need a second opinion from an attorney.

We are new on this path of looking at SS Disability and have a lot to learn. He was able to move up is appointment with his MDS to later this week so feel we can get some advice on whether he can expect to ever return to full time work or not. His internist handled the paperwork for the short-term disability because my husband sees him more often. The internist indicated my husband cannot work more than 3 days a week given how bad his symptoms get when he's working, and that we'd need the expertise of the MDS if we are begining to look at SS Disability. Right now he gets paid for the 3 days of work and receives long term disability pay (66% of salary) for the other 2 days. We are older than you but had planned on him working for another 6 years or so.

#5 jerber

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Posted 14 February 2012 - 10:10 AM

1329167878[/url]' post='46154']
jerber:

They say that when it rains, it pours, but I think you've had a flood! So many things to deal with all at once. You are fortunate to be able to go to Barrow's at St. Joe's and the Muhammad Ali Center. You will get good care there.

Are you applying for Social Security Disability after your six months away from work? My husband was off work due to PD for 5 months last year and is now back to work 3 days a week but we are not sure he can continue. In the initial telephone "intake interview" with a disability attorney's office this morning, he was told that he should have applied when he was off fulltime. That because he went back, even part time, the wait time will probably be a a year or more before an application could be submitted. A lot like picking a doctor, we probably need a second opinion from an attorney.

We are new on this path of looking at SS Disability and have a lot to learn. He was able to move up is appointment with his MDS to later this week so feel we can get some advice on whether he can expect to ever return to full time work or not. His internist handled the paperwork for the short-term disability because my husband sees him more often. The internist indicated my husband cannot work more than 3 days a week given how bad his symptoms get when he's working, and that we'd need the expertise of the MDS if we are begining to look at SS Disability. Right now he gets paid for the 3 days of work and receives long term disability pay (66% of salary) for the other 2 days. We are older than you but had planned on him working for another 6 years or so.



#6 jerber

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Posted 14 February 2012 - 10:40 AM

Golden01,
You are right about Barrow's. I feel very fortunate. Right now, I'm in the review stage of being approved for Long Term. I worked for a local police department for 10 years in their police hiring unit. Unfortunately, part time was not an option & because of the job, I couldn't call in last minute & take the day off. After too many "off days" ( falling asleep on the way to work or in the middle of training, work. Having tremors when Im fingerprinting an applicant or just crying in the file room). Or when we would have testing , I needed to be there at my assigned position whether I was able or not. As you know, this alone can be a stressor which causes more symptoms; vicious cycle. I can understand the whole "policy & procedure of the Disability claim. It's frustrating to say the least! I feel for your husband. Because he wanted to work several days a week, it seems he's being punished for that! Makes no sense, but I've come to realize that the "process" makes no sense. The last time I spoke to someone with the company handling my Long Term claim, I was so depressed after having to explain over & over that PD is a progressive disease & you don't know when you're gonna have a " good" day or not. Just talking about it all day over & over was about enough to send me over the edge & believe me, I'm a very positive " glass half full" kinda gal! So bad that my sweet hubby came home & gently took my phone from me & dealt with everything else between my dr and Long ter company from there on out. Basically, ltd co was having an issue with me not seeing my MDS for a long period of time ( he was out of town & had to cxl my appointment). I would call the nurse if I was experiencing problems or need my mesds adjusted . LTD co. Said they needed written progress documentation from my dr office during that time period even though they already had the Attending Physian's Statement of Disability. I advised them that just because I didn't have office visit during that time period doesn't mean that the PD " went away" during that time! Posted Image I can feel for what you're going through! These companies need to be educated or get some tact when dealing with people! I'll be thinking of you & your husband. Hang in ther, but it's not easy !

#7 Golden01

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Posted 15 February 2012 - 09:55 AM

You are right about it not being easy!

My husband's company provides only a few days of sick leave (3-5), after that you go on short term disability (STD)so we started dealing with the "need for ongoing documentation" right away. I do have to say the STD company was pretty good to work with. For us, the need for more frequent appointments was solved by having my husband's internist provide the documentation about whether he could return to work or not and we saw him for monthly visits which satisfied the STD folks. My husband usually sees his Movement Disorder Specialist (MDS) quarterly. The internist has been very helpful to us including sometimes how to say things either at work or with the STD company ("my doctor says I can't return to work"). Now that my husband is moving to requesting LTD, the internist indicates we are going to need the MDS to provide more detailed information on the impact of the Parkinsons. We've been able to move up his quarterly appointment by a month and see her on Thursday to get started on the process (another patient cancelled!).

Interestingly, the internist had never seen my husband's symptoms at their worse (how they are when he works, even just three days). At the last appointment, he did. The doctor immediately turned the discussion to what might be needed when applying for LTD. This is hard.

#8 Golden01

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Posted 16 February 2012 - 09:57 AM

You work for a public employer so your situation may be different than my husbands (private employer with massive layoffs over the past few years). Here's something we learned along the way that may be a question for your LTD company:

Ask if the LTD pays the percentage of salary you've indicated or if that amount might be reduced if other disability benefits (such as Social Security) are received. While my husband's Employee Handbook and the annual benefit info always mentioned the LTD would pay 66% of his salary until age 65 if he became disabled, turns out in the actual policy, (30+ pages) which we didn't receive until he started down the LTD path in January and we requested it, what they pay is up to the 66% adjusted for the SS or other benefits (private disability insurance is excluded from the calculation). They automatically referred his case to an outside company to help with SS application with strong pressure to "assign" benefits so they could be paid back for any "overage". Turns out, because he went back to work part time the outside company closed his case immediately. We had done our planning based on what was in the handbook and were counting on the 66% of his salary. Turns out with their adjustment, once he became SS disability eligible, the amount from his company's LTD would probably be about $150 a month, much less than we had calculated.

You are right about it not being easy!

#9 jerber

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Posted 17 February 2012 - 05:16 AM

You work for a public employer so your situation may be different than my husbands (private employer with massive layoffs over the past few years). Here's something we learned along the way that may be a question for your LTD company:

Ask if the LTD pays the percentage of salary you've indicated or if that amount might be reduced if other disability benefits (such as Social Security) are received. While my husband's Employee Handbook and the annual benefit info always mentioned the LTD would pay 66% of his salary until age 65 if he became disabled, turns out in the actual policy, (30+ pages) which we didn't receive until he started down the LTD path in January and we requested it, what they pay is up to the 66% adjusted for the SS or other benefits (private disability insurance is excluded from the calculation). They automatically referred his case to an outside company to help with SS application with strong pressure to "assign" benefits so they could be paid back for any "overage". Turns out, because he went back to work part time the outside company closed his case immediately. We had done our planning based on what was in the handbook and were counting on the 66% of his salary. Turns out with their adjustment, once he became SS disability eligible, the amount from his company's LTD would probably be about $150 a month, much less than we had calculated.

You are right about it not being easy!



#10 jerber

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Posted 17 February 2012 - 05:40 AM

I've become familiar with the LTD issues. If I am approved, I will eventually have to apply for SS. I'm still in limbo. When I first received a call from the company's rep., she told me they didn't have enough medical documentation (as I mentioned before). She also said something that I find very strange : something like - at this point, with the documentation that we have received from your neurologist (including all of my MDS records and their paperwork that my dr. completed indicating I should NOT be working) you will only be eligible for $50 per month. What?! Did I hear that correctly?! I didn't know that LTD had a time limit for in between dr. visits! And that "should not be working" as a final evaluation held little to no merit. If I went a certain time period in between office visits (as I also mentioned, my dr. was out of town and I went more than 3 months in between visits, but did recieve assistance via telephone from his office). The LTD company had my medical records from my last visit (which, at the time, was less than one month prior!) I hope you can get more assistance or appeal. That's just not right. Posted ImageGood luck and let me know how it goes



#11 Golden01

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Posted 17 February 2012 - 09:11 PM

Visit with the MDS specialist was hard yesterday. She helped us see that my husband needs to stop working and is working with us for the date (March or April) that will work the best for us (some things we need to do before he is no longer an employee). Turns out, because of a new electronic medical record system, she could look at the note my husband's internist had written two weeks ago. Her notes from yesterday's appointment matched the other doctor's almost word for word so shows agreement in the medical assessment and recommendations. Also asked for recommendation for a counselor that works with PD patients as this is hard. My husband really isn't ready to not work even though he knows he will feel better if he does. It's a process and not easy.

Back to LTD, one of the things we've learned already is that it isn't really how many records we provide but exactly what they say. For example, the MDS identified left hand tremor, cognitive issues (slower response time, difficulty multitasking, etc.), and walking (stooped posture, some foot drag when tired or stressed, chance of falling) as the three most problematic symptoms for my husband in his current job assignment. From his internist, we learned that sometimes "less is more" and to provide just enough but not too much information. He encouraged my husband to say "my doctor says I can't return to work" and not a lot else to his employer and the disability companies. That doctor explained that, in his experience, the disability companies are working for the best interest of your employer not for you as the employee.

Good luck to you on this journey.




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