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Old 09-23-2010, 07:43 PM   #1
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happyandblessed HB User
How can friends help a Parkinson's friend most ?

I am a very good friend of a woman in her mid 50's with advancing PD. I would do anything in this world to help her. I would be very interested to know from Parkinson's patients, how they think I would be best used to help my friend. Some ideas I have are:

Call frequently just to talk OR listen
Drop small surprises off
Visit or leave alone
etc etc....

It is very obvious her mornings are the worst. Prominent shaking and speech becoming affected as well. When her medicine kicks in, things are much better.

I just want to know what to say. What she would want to hear and how I can be good therapy for her.

we are going to start exercising together so there will be time to talk.

Thank you to those who offer first hand experience of what they would want a good friend to do. My praises go out to all of you fighting this dreadful disease. Just know that there are people like me out there who want to help but just don't know how to help the most. Maybe someone else reading this is learning more about PD and can be a good help/friend to someone else.

Last edited by happyandblessed; 09-23-2010 at 07:50 PM. Reason: title change

 
Old 09-26-2010, 08:10 AM   #2
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Pens'nChalk HB User
Re: How can friends help a Parkinson's friend most ?

I'm not yet diagnosed with PD ... currently am diagnosed with MS ... very similar symptoms to the PD I witnessed in my parents, which is why I'm questioning the diagnosis.

But to your question: I can answer this as an MS patient.

Point out the positives ... as her medication "kicks in", as you say, compliment her. (note: MS medication never "kicks in" or helps with symptoms - just a vague tentative promise of slowing progression.)

Resist parting comments like "Take care of yourself." She is, if PD treatment is as self-administered as MS injections are ... she doesn't want to burden anyone else, but she doesn't need to be reminded that she carries the burden alone.

I find housekeeping more challenging month by month. My windows haven't been washed in over a year now ... will I ask someone to do it for me? no. Can I afford to have someone come and do it professionally? no. Would I do my best to pretend it doesn't matter to me? yes, but it does matter, to me, to my neighbors (who can afford to pay for help with maintenance chores.) Would i want a charitable group of strangers to come en masse to help me out? wait a few months ... I'm getting ready to change my attitude on accepting charity.

I have a life-long friend who is my age but still able to do routine tasks, and she comes every other week to wash kitchen and bathroom counters and floors ... I can pay her a small fee for that much work.

Are you close enough to offer to brainstorm possibilities of hired help? Could you offer to make the calls and interview people for her? Do you live near enough to offer to run short errands to the grocery or pharmacy or library for her?

Please don't say "I hope that gets taken care of," or "Hope you feel better soon." Hope is a passive, empty offer ... see another post on this site for my feelings on that word.

glad you're willing to help a friend ... you will find the right way. Thanks for caring.
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Last edited by Pens'nChalk; 09-26-2010 at 08:15 AM.

 
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Old 09-29-2010, 06:41 PM   #3
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Laura Gale Ure HB User
Re: How can friends help a Parkinson's friend most ?

Dear Newbie,

I am a 64-year old woman diagnosed with Parkinson's in 2003. By God's amazing grace I am now living with my best friend and her husband, "renting" a room in their house. Renting is in quotes because I am getting way more than a room; they have incorporated me into their family.

Does your friend live alone? Does she still drive? Is she in some kind of assisted living situation or does she have a caretaker or others helping her? I could give you some better ideas of how to be a help if I knew more about her situation.

Laura

 
Old 10-03-2010, 02:31 PM   #4
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happyandblessed HB User
Re: How can friends help a Parkinson's friend most ?

This friend has a husband who is very supportive. Also, weekly housekeeping help so those areas are not a problem.
I am going to send food tho for the freezer occasionally where they can pull from it when she doesn't fell like cooking.
I think what I should have said is "what should I talk about with her ? "Do you think she would want a shoulder to lean on from someone not going thru this but who cares so much ? She's got to be anxious and also worried about what's to come since it seems to be progressing pretty fast. Sometimes talking is great therapy and I'm a good listener, just don't have any answers on this one. She's not one to complain or bring it up either.
Thanks for the advice !!

 
Old 10-17-2010, 04:55 AM   #5
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Willieshakes HB User
Re: How can friends help a Parkinson's friend most ?

H&B, the best help you can give is to Educate yourself and your Friend on the Entire degenerative nature of this affliction. Ensure someone is ready to act as the advocate and knows the history of the progression, medication, psychological profile and current less obvious symptoms. This is a team approach, you need experts in Parkinson's and an attentive GP not just one or the other.

Hospitals, other doctors (Dentists, Urologists, Osteo's) and insurance companies do not understand the dimension of this diagnosis, shaking may be the easiest thing you deal with but if you over-medicate to stop it, you will be in even bigger trouble. My Mother has very little shaking after 10 years but every other symptom is alive and well and slowly destroying her.

Good luck, God Bless,

 
Old 11-10-2010, 05:10 PM   #6
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cookiemunster HB User
Re: How can friends help a Parkinson's friend most ?

Quote:
Originally Posted by Willieshakes View Post

Hospitals, other doctors (Dentists, Urologists, Osteo's) and insurance companies do not understand the dimension of this diagnosis, shaking may be the easiest thing you deal with but if you over-medicate to stop it, you will be in even bigger trouble. My Mother has very little shaking after 10 years but every other symptom is alive and well and slowly destroying her.

Good luck, God Bless,
Willie, I'd love a bit more info about this. My mother is getting what I consider to be mediocre care right now. Bi-annual visit wither her neurologist, and that's it. I believe that she is being treated for the shaking at this point, and nothing else. Is there something in particular that we should be paying attention to? I think right now, she is focused on enjoying life while she can, which I can totally understand.

 
Old 11-11-2010, 02:44 AM   #7
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Willieshakes HB User
Re: How can friends help a Parkinson's friend most ?

Well Cookie, your Mothers lucky to have you and that you care enough to ask the right questions! My Moms experience has been a very slow onset and addition of symptoms over the years was always understood to be just PD progression. Unfortunately most of the mental manifestations have turned out to be medication induced. We found that out after her PDD started getting severe and scary.

All Neurologists are not created equal, her original one for 10 years was adding medications every time she had a visit. They helped with some things but hurt others much worse than the PD symptoms. We finally got her a fantastic Neurologist at the University of Rochester that specializes in Parkinsons', he is fabulous, I can call him and he will call me back or Email me within minutes if I need, I wish we found him 10years ago.

After de-medicating her of $1500 a month in various pills, she came out of the delusional cloud for over 4 months, the first time in two years! No adverse shaking or other issues. The drugs had caused the PDD not PD. Because her Dopa-chemicals unbalance all by themselves and regularly, she has slowly slipped backwards over time with other symptoms, depression is her latest growing issue.

Her delusions are not so bad anymore but almost everything but the shaking is getting worse daily. Her self ambulation, care, eating, drinking and normal life skills are all but gone at this point and I'm hopeful but not convinced that they will ever return, even with the best treatment, this thing can't be stopped, just slowed down a bit.

My best advice is to seek a Dr that truly specializes in this, no general Medical training or 2 day conferences prepare them for Parkinson's Diagnosis or Treatment, the symptoms are confusing to even Doctors that eat, sleep and drink PD; is it Old age, another illness or Parkinson's that is causing Mom's latest quirks? If they don't treat the Parkinson's specifically and consistently, your mom could be worse off after treatment than before.

Hang in there Cookie, its a tough battle but worthy, you can make a significant difference in the comfort and care of your Mom. She has many Demons to battle in her future and she will need a team of Medical professionals, skilled assistants and loved ones to help her and you. Sounds like your going to be the Captain so pick up your armor, cellphone and keyboard, you will need all three, many times a day!

The internet is your friend, the advice you get may be helpful but don't treat her with it please! Only a Medical professional and your Pastor have any real useful suggestions or insights that can assist both you and your Mom in this. If you wish to assist them in assisting your Mom, keep a daily log of all activities, symptoms and issues and make sure her medications are delivered accurately and on time (+/- 10 minutes) and never miss them! ADA her home as soon as possible, ramps, handrails, comfort height toilets, walk in showers with seats and hand showers and clearing away the clutter are good places to start. Be prepared for anything, slips, falls, psychological and eating/ voiding issues are just as common as shaking for PD Sufferers. Be ready to move quickly at a moments notice!

Prepare a Emergency pack, it should include at least one day of medications, a complete prescription list with times and quantities, list any allergies or specific no no's, all contact names and phone numbers both professional and personal, a copy of any DNR's, Proxies and a list of POA's, a couple days of clothing, her daily log book and a cellphone with all contacts stored in it if Mom doesnt have one already (The Jitterbug is an awesome phone for the elderly and can be used on an hourly or monthly basis).

Above all, Keep a stiff upper lip and question everything, get a second opinion if you have even an inkling that its appropriate or necessary. Get your Moms finances and transitional life plan in order (24 hour caregivers and nursing homes will cost her from $6500 a month to $15,000, medicare will pay none of that) and look for a local support group!

Good luck and God Bless you and your Mom! JR

 
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cookiemunster (11-11-2010)
Old 11-11-2010, 08:39 PM   #8
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Re: How can friends help a Parkinson's friend most ?

Thanks, JR! I appreciate all of your insight! I can guarantee I will be re-reading this often! (Since as you know, her progression will continue to change, and what might not be an issue now may certainly be an issue in the future.)

 
Old 11-12-2010, 04:43 AM   #9
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Willieshakes HB User
Re: How can friends help a Parkinson's friend most ?

My Pleasure, last but not least, Both you and Mom have to make the best of everything good that you can muster everyday! Good luck, JR

 
Old 11-23-2010, 09:33 AM   #10
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ParkieDude HB User
Cool Re: How can friends help a Parkinson's friend most ?

We're all different. I needed physical therapy but someone else may have a different need.

I'd simply ask directly "What do you need"?

My answer, of course, would be "Chocolate".

 
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