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Beau's Mom

What's best for caregivers?

21 posts in this topic

Hello, Caregivers. I am a PWP with a new volunteer position. I will be preparing the schedule, finding speakers and facilitating a group that is a PD support group where many caregivers attend with their loved ones. I start in September, and the previous facilitator has already arranged to have an exercise specialist talk about PD and exercise.

 

Several of the caregivers have mentioned that they really enjoyed it when they had their own time by themselves. It made me question what caregivers would like if they had the exercise specialist to themselves for a half hour.

 

1.

Would you want to be taught more about helping your loved one with his/her exercise?

 

2.

Would you like to hear about good exercises for caregivers?

 

3.

Would you be interested in learning quick exercise/stress relief techniques that would easily fit into your busy schedule?

 

I would greatly appreciate it if you would take the time to let me know which would be most helpful to you. You could just type 1, 2 or 3. I would also appreciate any other suggestions you might have regarding caregiver needs in any area of your lives.

 

Thanks for everything you do!

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3

 

Plus for me, I have learned a lot about cognitive changes, It is a real stressor for me since my DW has them but can't recognize them. It has really been obvious the last month with a couple of trips we took. Also side effects of meds would be a good thing, since the person taking the meds won't recognize them.

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I would like to hear from other caregivers how they cope with living with someone with PD. What do they do alleviate the stress, depression, and loneliness and isolation they feel as a caregiver.

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Sarakay,

I have cows that I do chores for. That gets me out of the house and they are always glad to see me, at least when I have feed:) We still have two kids at home and their activites keep us busy along with the ones in college. I forsee a time when things are going to be difficult when the kids are gone and her cognitive problems progress. Now she drives me crazy due to her lact of ability to communicate or interpret what is going on. The poor executive function abilities drive me crazy, I never know what she is going to do or be prepared or not for.

Coach T

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Coach T - You have a lot on your shoulders. I love hearing about your cows. I am going picture cows on my front lawn when I feel stressed. The neighbors will love it!

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My first time. Never thought I will be blogging on a forum on medical needs, but here I am.

My wife had young onslaught of PD at the age of 39. Since then she has gone to 4 Neuros. She is taking car/lev 6 times a day ER 50/200, ropinrole/requip (4mg) 3 times a day, Azilect 1 mg once a day, Amantadine twice a day (5am, 11am). She also takes car/lev 25/100 non ER as a kick start 3-4 times a day. That’s a lot of carbidopa/Levodopa. She also takes with 50/200 car/lev 6 tablets of comtan 200. Dr. did not go fot Stalevo as the car/lev in Stalevo is not ER.

She does take an anti-depressant Lexapro once a day (limited due to Azilect). She complains of lots and lots of pain mainly on back and shoulder region. She takes 100mg Lyrica twice a day and lots of OTC pain killers like Advil and Tylenol. She has Vid D deficiency and no other issues then PD related issues. She takes a centrum, high does of Vit D, 1200mg of CoQ10 also.

She does not have trembling but has freezing and rigidity issue, big time. She has some dyskinesia but not always and not much unless she is in stressfull or lengthy conversations.

Her condition gets really really worse at night. She crawls to restroom, asks for help every 30 mins or less, wakes up the whole house, has hallucinations and cries a lot and complains of too much pain. At times, now, we are all getting frustrated with her situation at nights as we have work and school (situation has worsened in last 1 year and she is also not a co operating patient). She recently got Quetiapine/Seroquel and has taken only couple of doses with no help. The night situation is getting to hurt everyone at home and she is getting more vocal in those situations and also others are not showing any patience either as she will tire herself with un necessary stuff through the day, not sleep on time and not exercise at all beside just taking meds. She hallucinates a lot and makes up things a lot. During day, she will drive, shop, work at home and all, but night comes and she is a different person. At times she is not well during days but it is worse (almost 75% more, no gauge though) at night with non stop crying, moaning and calling for help.

She feels she is completely paralyzed and need help even to move her hand from one position to other. She takes all meds including small car/lev but nothing helps. Around 7-8Am she is much better.

I don't know if she will want to take seroquel for long or not and will it help or not, but all in all she is taking too much meds, but Doctor knows?

 

Can anyone shed light and has anyone encounter this situation? We all love her very very much, really care for her, help her a LOT all day but also get very annoyed during nights. I think the meds she is taking are too many but the Uni Prof she sees knows it all and wants her to go for DBS for which we are sure she will fail the psychological profile miserably and she does not want to get bald.

I still believe there is much that can be done and her NIGHT SITUATION is very weird. We have been on vacations in last 1 year anb she has behaved very well.

 

Thank you.

Edited by Optomist
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The nights sound so hard and it must be so difficult to know what to do. I haven't been in a situation like yours so may not have any answers. I did go through a period where my husband responded badly to his PD medications. Fortunately, his MDS recognized it quickly and took him off the medication after a short time although it took about two months to get him "back". Here's my thoughts, you see her more than the doctors do so I think your guess that it is too many meds is right; her University based Professor is probably an MDS and very good but a second opinion is often useful; consider a consult at a NPF Center of Excellence, even if it means traveling for an assessment (since she did okay on vacation, that might work out); a consult with a local MDS not affiliated with the University might be useful too; post your questions on the Ask the Doctor and Ask the Pharmacist Forums; leave no stone unturned trying to find the answer to the nighttime changes; encourage her to do things in the daytime that will help her feel better and sleep well (exercise, eat right, etc.); since she has been to four neuros, you have had experience with different doctors, find the MDS you are most comfortable with and know he/she will be your partner in the years to come; and know that while this is your first time posting in the forum, and although others here may not have answers for you, we are with you in knowing how difficult this must be for you. Good luck and keep us posted.

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Optomist,

I agree with Golden01, it sounds like a toxic combination of drugs. There are so many side effects and interactions that could be causing a lot of the problems. We especially did not have a good time with the agonists such as the requip she is on. It is rough.

Coach T

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Having mistakenly been given a severe overdose of carb/levo regular and ER for a period of several months, I know this can cause severe psychiatric symptoms. The hallucinations sound more like an agonist reaction. I recommend writing to Dr. Okun on Ask the Doctor and also to the Ask the Pharmacist forums. And, as Coach suggested, get those meds evaluated immediately. Get both the MDS and the psychiatrist involved. If necessary, seek inpatient psychiatric hospitalization at a university medical center where she can receive a full-scale evaluation. That's what it finally took for me and believe me, my loved ones appreciated the rest they got when I was finally hospitalized!

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Thanks Golden 01, CoachT and Beau's Mom for immediate responses.

 

Golden01, she did went to one of the top Parkinson's doctor with Baylor 2 yrs ago and we did travel for that. Dr. Jankovich. He did help by reducing ropinrole/requip from 24mg to 12 and he wanted her off Azilect too. The current guy okayed 12 mg of ropinrole but put her back on Azilect as he thinks it helps slow down Parkinsons.

We do have a psych office visit in a month..but she just took :herself off" the seroquel that was for such issues as it made her sleepy but she did not really slept, if you understand what I am saying. She walked and fell once and she believes this medicine will not help.

OPTOMIST.

Thanks fellas!

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Dear Optomist,

 

I still highly recommend an immediate emergency room psych consult. As Dr. Okun said, the Seroquel (a psych medication) helps ward of hallucinations. If she's refusing to take it, she will only get worse. If you are near Baylor in Houston I would take her to the ER there. I was evaluated there and I believe that's where Dr. Janovich was the medical director. If you are near Dallas, the best psych unit is at Zale Lipshy University Medical Center, You can call for an over-the-phone assessment with an intake counselor. The number is 214-630-7285. Believe me, you do not want her to fall. I fell on December 30, 2011 and am still recovering from the effects of a broken upper arm. I am not an alarmist; I am a master's level social worker with direct practice mental health training and my own PD/depression issues. This does not sound like something you can handle at home alone. Your wife deserves the best help available from a team of psych and neuro doctors who understand all the interactions between medications and who will work together in her best interests. I wish you all the very best as you deal with this intricate, difficult and stressful situation.

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One thing to consider, no matter where you decide to get medical advice, is to be sure a good MDS heads up her care and helps you pick the specialists involved so that they are familiar with PD.

 

Do you have the NPF "Aware in Care" kit? If not, think about ordering it today. The lists of drugs not to use, tips for caring for a person with PD, etc., are very helpful when a person with PD has to go to the hospital. Here's the link: https://secure3.convio.net/prkorg/site/Ecommerce/378878176?VIEW_PRODUCT=true&product_id=1361&store_id=2162.

 

Sleep is important and lack of sleep makes everything harder both for families and for the patient with PD. Would a couple of nights of respite care (maybe a home nursing service if she's not hospitalized) be a possibility? Even if you have to pay out-of-pocket, sleep sometimes is more precious than gold and leaves you better equipped to handle what comes.

 

Most of all, the one thing my husband and I have learned since he was diagnosed with PD in 2005, is not to try to play doctor. He got very sick when we assumed symptoms were his PD getting worse and it turned out to be a thyroid problem. You would have thought we would have learned but then we made medication adjustments ourselves and made the symptoms from the thyroid problem worse. Since then, he sees both the MDS and internist regularly and we ask them the questions instead of trying to figure things out on our own. Some doctors think undermedication is often a problem for people with PD. As Beau's Mom has described, overmedication is a serious issue too.

 

Hope you are finding some answers and that everyone is getting some sleep.

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Thanks All once again..had much better 3 days..but right now 1:40 Am looks threatening. She is complaining of pain she had 5 days ago for 3 nights..lets see ..keeping fingers crossed! I am up!

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Doing well for past 3 days. Some freezing and back pain one night but for most it is going well. Instead of taking 6-7 50/200 + 3-4 25/100 caridopa/levodopa we are down to 4+3 or 5+3.

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Glad the past 3 days have brought some sleep. Getting the medicines just right can be a challenge - too little, too much, or just right! Insomnia is top on our list of questions for my husband's MDS today.

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coachT - always good when you weigh in! Glad to hear from you again.

 

Optomist - Hope your nights have been restful. Maybe this will help all of us:

 

525087_10151827822661110_1085568119_n.jpg

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Hello, Caregivers. I am a PWP with a new volunteer position. I will be preparing the schedule, finding speakers and facilitating a group that is a PD support group where many caregivers attend with their loved ones. I start in September, and the previous facilitator has already arranged to have an exercise specialist talk about PD and exercise.

 

Several of the caregivers have mentioned that they really enjoyed it when they had their own time by themselves. It made me question what caregivers would like if they had the exercise specialist to themselves for a half hour.

 

1.

Would you want to be taught more about helping your loved one with his/her exercise?

 

2.

Would you like to hear about good exercises for caregivers?

 

3.

Would you be interested in learning quick exercise/stress relief techniques that would easily fit into your busy schedule?

 

I would greatly appreciate it if you would take the time to let me know which would be most helpful to you. You could just type 1, 2 or 3. I would also appreciate any other suggestions you might have regarding caregiver needs in any area of your lives.

 

Thanks for everything you do!

 

Since I have already developed an exercise routine for myself I would have to say #1. I keep stressing to my PWP (DH) how important it is he exercise. Now I just need to find out what he's willing to do that will fit into his schedule since he is still able to work, for the time being....

Edited by LoveMyHubby

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This is my first post but I wanted to respond to Sarakay who asked about how you cope with living with someone with PD. My DH was diagnosed in 1999 and is recently getting much worse. I'm finding that he can't do the "business stuff" of the family anymore but he still thinks he can. Taxes this year took weeks to do and ended up done incorrectly which now incurs penalities, etc. Maybe the only way to cope with the awfulness that goes along with watching your life disintegrate is to talk to others in the same boat. It made me feel better just reading what other people say. I plan on checking in every day if possible, reading what others are feeling and doing.

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