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Rebecca2z

Helping Father & Mother

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Oh good grief, this is not an easy disease. My poor parents. Father was dx two days ago, he is 84 and mother is 82. They live in Maine and I live in California. I myself am ill (and I thought my issues were complicated ! ) This is why I can't make the trip back to Maine to help them, my own doctors are advising against it.

 

What is so hard is trying to help aging parents who don't use the internet and don't know how to ask the community for help.

Although I am surprised at how much I can do via the internet for them.

 

 I am in complete shock about is my dad went to a neurologist a couple of days ago and was told he has PD, they told my parents next to nothing about the disease, They got no brochure or info sheet and they know nothing about it.

 

anyway I joined this forum so I can help them, I know I have a ton of reading here (old posts) But I do need to know a couple of things, One thing is my father can't have a bowel movement, is this common and what is he suppose to do about this ?( He is on Miralax and it doesn't touch the problem and drinks one of those fiber things for the last 4 years.)

 

The other thing and this gets kinda serious, he is  depressed and his anxiety is over the moon, OMG he is worried about EVERYTHING, it's very hard to take.   They are in Maine on the lake (way out of town)  and have to get out of there within the next 2 weeks, they usually go to Fla for the winter. I am trying to get them in somewhere to a doctor there. Not sure they can even make the trip though, in which case I have got to find them a place to live in Maine in town.

I am overwhelmed to say the least.

Thanks for listening,

Rebecca

--
Rebecca Johns
Edited by Rebecca2z

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Rebecca,

 

Constipation is a very, very common problem in PD because all muscles more more slowly. Miralax didn't touch mine either. Based on his age, I would check with his doctor first, but common remedies are prune juice, stool softeners, a laxative like Senna, or sometimes a Dulcolax suppository or Fleets enema to get things started. There are stronger products on the shelves as well but they can be quite harsh and cause cramping. Also, he needs to drink tons of water (not caffeinated drinks) every day!

 

Depression and anxiety occur in about 50% of PD cases and can often predate an official diagnosis. They are very treatable with medication and cognitive-behavioral therapy. 

 

It sounds like your dad needs a new doctor! Instead of a primary care physician or even a plain neurologist, if it is at all possible, he should be evaluated by a Movement Disorders Specialist. You can call the NPF Helpline number on this website for one close to you.

 

There are often disturbing personality changes associated with PD that can really strain even the steadiest of marriages. Let your mom know that if he's changing, she had done nothing to cause it, it is simply part of the changes going on in his brain.

 

Finally, you did not mention if they have placed him on any medication. I would pose any question you might have about PD in general or medications specifically to Dr. Okun in the Ask the Doctor Forum. He is always more than happy to explain and advise where he can.

 

Best wishes to you and your parents. Remind your mom to take good care of herself, especially if she is your father's sole caregiver. You might check their local Division on Aging to see what services might be available to them in their part of Maine.

 

All you Maineiacs out there, you might  be able to offer more insight about your state than I can!

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Thank you so much for that wonderful info ! That is the most anyone has told me ! I took to heart what you said and called the # on this web site and they helped a great deal and yes I agree he needs a new doctor. I got some info on a place in Fla. It took us forever to find a neurologist in the Bangor area, they have lost most of their neurologists.

But the place in Fla has a Movement Disorders Specialist, so now I have my fingers crossed he can go to Fla.

 

Again thank you a ton for your response, it was very helpful, happy to learn about Dr. Okun, didn't know that was here.

 

Hugs,

Rebecca

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Thanks Patricia, I did contact them but they said they have no funding and couldn't really help me, they did give me a list of aging centers that could help with care-taking in the bangor Maine area.

I am now realizing that my mother needs as much help as my father does...

 

I am really thankful for this site !

 

Thanks Diane, I sure like how you do 'roll around here'!  I ordered 3 books from amazon on PD, one for caretakers of PD patients and two on PD and had them sent to my parents, I honestly think they will feel so much better once they have some information. I don't see how anyone can even begin the acceptance phase until they are empowered with information on this disease or is it a disorder or both ? .....still learning .....lol

thanks you guys!

hugs,

Rebecca

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Rebecca,

 

Thought I pass along what my neurologist recommended I do for my constipation.  He recommended that I mix 1/4 cup of apple sauce, 1/4 cup of wheat germ, and 1/2 cup of prune juice.   This mixture was pretty nasty so I modified it a little.  I mix a 1/4 cup of apple sauce and 1/4 wheat germ, heat it up in the microwave for 40 seconds, sprinkle some cinnamon on top and I have my dinner desert.  After dinner, I drink a glass of light plum juice.  As you can see its not exactly the same concoction, but its been helping along with a nightly dose of Miralax and I drink a minimum of 64 ounces of water every day.

 

I hope this helps your Dad some.

 

Dave

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Constipation can be a very serious problem for people with PD. The suggestions shared here are tried and true and have worked for many. Another thing that may help is eating yogurt every day. A probiotic supplement like acidopholis can help too. Don't every underestimate the value of taking daily stool softeners like Colace. Between my husband's PD and a medicine I take for breast cancer that causes constipation, we by stool softeners in the multipacks. My mother-in-law just had a hip replacement and is staying with us so we are going through them fast! 

 

Here's another idea, especially good if the juices are very cold - half prune juice and half apricot nectar. 

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Golden,

 

Just a heads up on the stool softeners.  I used to take them regularly every day for about 6 years.  I was up to 8 pills a day.  I read an article on the internet last year that indicated that long term use of stool softeners can actually have the opposite effect and cause constipation also.  So, if you find yourself taking more and more pills, you may need a holiday from them. The same article did not indicate any problems with long term usage of Miralax. This was just my experience.

 

Dave

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Rebecca - If they can make the trip to FL, I highly recommend the area around Boca Raton - the PD support here is incredible.  Once you pay $25 to join the local chapter of NPF, you're eligible for the free surf & turf (land & pool) exercises @ the Y (several times weekly), also the weekly yoga & tai chi classes.  There's also a phenomenal once a week, hour and a half Boca Ballet for PD class that is amazing - not just ballet moves, but modern dance, tap, etc. moves designed for all levels of PD - w/ a live accompanist who plays great stuff - classical, show tunes, modern, etc. - and delightful people who participate - and really gifted, enthusiastic leaders & assistants who provide whatever help is needed during the class.  (It's patterned after a program begun in NYC.)  We also now have a weekly 1 hour PD radio program, monthly talks by professionals  @ our chapter meetings.  You couldn't ask for more help & support.  We have a couple of movement specialists in town and some excellent neurologists - also the U of Miami offers a great deal, though is farther south.  The local hospital is building a neurology center right now.  The forums on this website have been a real gift to me (diagnosed a yr. ago) - so much info & support - keep reading!  It's too bad that your parents can't tap into this - it'd help them so much - but you can relay a lot of it to them.  Good luck to all of you.

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Rebecca,

 

Thought I pass along what my neurologist recommended I do for my constipation.  He recommended that I mix 1/4 cup of apple sauce, 1/4 cup of wheat germ, and 1/2 cup of prune juice.   This mixture was pretty nasty so I modified it a little.  I mix a 1/4 cup of apple sauce and 1/4 wheat germ, heat it up in the microwave for 40 seconds, sprinkle some cinnamon on top and I have my dinner desert.  After dinner, I drink a glass of light plum juice.  As you can see its not exactly the same concoction, but its been helping along with a nightly dose of Miralax and I drink a minimum of 64 ounces of water every day.

 

I hope this helps your Dad some.

 

Dave

Thanks Dave, I will read this info to my parents, this sounds like something he would do too.

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Rebecca - If they can make the trip to FL, I highly recommend the area around Boca Raton - the PD support here is incredible.  Once you pay $25 to join the local chapter of NPF, you're eligible for the free surf & turf (land & pool) exercises @ the Y (several times weekly), also the weekly yoga & tai chi classes.  There's also a phenomenal once a week, hour and a half Boca Ballet for PD class that is amazing - not just ballet moves, but modern dance, tap, etc. moves designed for all levels of PD - w/ a live accompanist who plays great stuff - classical, show tunes, modern, etc. - and delightful people who participate - and really gifted, enthusiastic leaders & assistants who provide whatever help is needed during the class.  (It's patterned after a program begun in NYC.)  We also now have a weekly 1 hour PD radio program, monthly talks by professionals  @ our chapter meetings.  You couldn't ask for more help & support.  We have a couple of movement specialists in town and some excellent neurologists - also the U of Miami offers a great deal, though is farther south.  The local hospital is building a neurology center right now.  The forums on this website have been a real gift to me (diagnosed a yr. ago) - so much info & support - keep reading!  It's too bad that your parents can't tap into this - it'd help them so much - but you can relay a lot of it to them.  Good luck to all of you.

Wow this sounds awesome sandy, I want to go there ! ;)  But this will be too far for my aging parents, they will be in the Gainsville area which after doing the research I see that the doctor who is on this forum is a doctor in Gainsville, so I am hoping that I can get him into that doctor. I know he will be in better hands then where he is at in Maine. Not sure he can make the trip though.. Thank You kindly for this great info, you are so sweet to tell us all about it.

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Constipation can be a very serious problem for people with PD. The suggestions shared here are tried and true and have worked for many. Another thing that may help is eating yogurt every day. A probiotic supplement like acidopholis can help too. Don't every underestimate the value of taking daily stool softeners like Colace. Between my husband's PD and a medicine I take for breast cancer that causes constipation, we by stool softeners in the multipacks. My mother-in-law just had a hip replacement and is staying with us so we are going through them fast! 

 

Here's another idea, especially good if the juices are very cold - half prune juice and half apricot nectar. 

Thanks Golden, as I am learning more and more I see you guys are spot on about PD patients having constipation issues. How awful - but I do like your idea adding in some yogurt, maybe a supplement like Culturelle - this just makes sense to me too. I am sorry you and your husband are having all those issues, wow I hope you guys are getting some help too, you sure have a lot on your plate. Thanks for being so supportive while having so many of your own issues. Your all amazing in here, I am so happy I found this group.

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Ok can I  ask for some more help?  My dad has been started on parkinson meds ( 6 days ago- his PCP put him on it even before we knew if he had PD) ) and they have just about stopped the palsy in his hands, but he is just sitting and staring - won't read or watch tv. anixety is over the top.

 

The doctor put him on an anti-depressant but it hasnt kicked in, and I don't think it will for a couple more weeks.

 

Is it normal to just sit and stare like that for hours?

 

Thanks

Rebecca

Edited by Rebecca2z

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The "poker face" of PD was one of the symptoms that made my family sit up and take notice and suggest I see a doctor. I had tremor, but it wasn't as obvious as your dad's was. Since your dad has not yet seen a neurologist, or better yet a Movement Disorders Specialist (a specialized neurologist) for a full evaluation I can only say that it is a classic PD symptom. It may have been there before but is much more noticeable now that the tremor has lessened.  And, since he just started his meds, they may not be optimized for all his symptoms.

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I think the "poker face" of PD is one of the most problematic symptom and often not addressed. I think others, including health professionals, misread feelings of the person with PD because their face does not express the emotions we expect. I try to ask or check on feelings but don't always remember to do that. 

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Thank you for the info on the 'poker face'. I can see where people would not know what the person is feeling. My poor mother has been freaked out about it.

I have to say all the info and advice here has been extremely helpful. I called a place  this morning in Portalnd Maine called the The Parkinson's Center

of Maine/Port City Neurology, Dr. Ed Drasby is the doctor there.

 

 Dr. Ed Drasby is a Movement Disorder specialist. Here is a pdf about his center, this might be helpful for others in Maine looking for

a good medical team for Parkinson's. http://portcityneurology.com/PPWinterSpring2012.pdf

 

I feel good about this place- got an appointment on Nov 7th. So keep all your fingers and toes crossed we get some

help.

Again thank you for all your helpful suggestions. I am trying to put a list of questions together that my mother can ask the doctor, when your not informed you don't even know what to ask so I thought this might help.

 

hugs,

Rebecca

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Here are my questions for my parents to ask new doctor- Is there something else that should be on list

Thanks !

1. What stage is my illness in now? What about my mental state- what stage is that?

2. How quickly do you think my disease will progress?

3. Can I go for walks? What types of exercise and wellness activities are most suitable for me? Should I have a cane, which one ?

4. What physical changes can I expect? Will I be able to keep up the activities,  I do now ?   Are there any restrictions on my activity?

5. What treatments do you suggest now? Will that change as the disease progresses?
 ~ Surgery DBS ?

 

6. What are the side effects of medication? Is there anything I can do about them?

7. Should I make any changes to my diet or lifestyle? I have extremely low cholesterol,
(
total 74)

8. Are there any complementary treatments or therapies that could help me? Such CO Q10 ?
(see last question)

9. Am I a good candidate for any clinical trials? What are the latest developments in Parkinson’s treatment/Is there a clinical trial appropriate for me?

10. Is there a support group or counselor you recommend ?

11. How can I manage my stress and anxiety, which a major problem for me right now

12. Can I fly to Florida for the winter and fly back to Maine in the spring. I am having frequency problems from all the water I drink- how to fly with problem?

13. Can I remain in my home, will my wife be able to take care of me. Will I eventually need long-term care?

14. I have major issues with constipation, What are the best ways to prevent or manage constipation?

15. How will you monitor my Parkinson’s treatment/Who will coordinate my care?
Will you monitor my Parkinson’s treatment?

16.  I have problems with my sleeping.  What treatment options are available for sleep disturbances?
 

17. Request for handicapped parking

 

18. Should I or Can I safely take Coenzyme Q10 supplements (200–3,000 mg/ day)  with the Parkinson medications? Can you comment further on this ?
( my daughter read that early research shows that this supplement slows the decline in Parkinson’s patients. She read most have tended to be pilot studies, noted: there are published preliminary clinical trials showing that CoQ10 may offer promise in many brain disorders. Novel therapeutic interventions that modify mitochondrial function are currently under development, and a large phase III clinical trial is underway to examine whether high-dose oral coenzyme Q10 will slow disease progression. )
 

 

 
















 

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You are a great daughter. I think your list of questions is terrific. One other thing we've found helpful is to make a notebook for my husband (I now have one too) that has everything medical in it. We have a plastic sheet for business cards of all the doctors in the front (makes it a breeze when filling out forms), a section for lab tests results, another for notes from each visit, one for x-ray or test results, etc. The notes section helps us prepare for the next visit with each doctor. Also, don't forget to order the NPF Aware in Care Kit: http://www.parkinson.org/Improving-Care/Education/Education--For-Patients/Aware-in-Care%C2'>

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Aww thanks Golden for your kind post.

I am going to call the office supply place in my town and see if I can find one of those plastic sheets for business cards. I have one of those too, Stanford gave it to me, I have been thinking of emptying mine and sending it to them, they it need it more. I have found that thing very handy.

I love your idea of a note book with tabs, that would make things so much easier for my mom and my fretful dad.

 

I think I did order that NPF kit, I called them and asked for info to be sent to my father and after I did that I saw on their site they had the kit, so I am not sure if they are sending that or not. But my parents would like that.

 

I talked to my parents yesterday and told them I found them a new doctor and my dad says " don't get your hopes up" errr, he's really depressed. So sad to see a man who was strong up until a year ago go down without a fight.

 

Thanks for the tips, I am all over that !

hugs,

Rebecca

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To obtain a handicapped sticker for your vehicle the patient needs submit a Department of Motor Vehciles issued official form signed by the physician.  Bringing said form along on the first doctor's visit will save a return for that limited purpose.  In DC they issue both short and long term disability stickers.  The nature of our illness unfortunately calls for the second.

Edited by Rogerstar1

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oh good info Rogerstar !

I hope I will be able to proceed with all my plans, just got a call my dad is trying to harm himself again.

He so depressed. waiting to find out what is going on, so helpless in california as he is Maine.

sob

rebecca

Edited by Rebecca2z

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