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Parkie Orphans

No support system?

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#1 Beau's Mom

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Posted 02 June 2013 - 07:56 PM

I am a Parkie Orphan. I have no family or friends willing to be my advocate and go to MDS appointments, walk with me for exercise, go to the hospital with me to give the nurses what for when I don't get my Sinemet on time, or make sure the doctors read the info in the Aware in Care kit. The NPF recommends that we each have a team that includes friends, family members as well as professionals to help maintain the best quality of life with PD. I attend PD support groups, both face to face and online.

Are there any other Parkie Orphans like me out there? I am not rich and cannot afford to pay a personal companion full time. My daily care needs are met in my Adult Family Home. I have transportation to appointments, but go alone. The local PD foundation suggested I call a church. The "volunteers" at the local senior center charge $20/ride.

I would like to see if there is any interest in training volunteer PD advocates for those times when we really need someone in our corner. I have a master's degree in Social Work, but not in business organization or management. I could write a training curriculum, but don't have the energy to implement it alone. Does anyone besides me see a need for PD advocates? Does anyone have any ideas how one could go about creating a volunteer network?

Please feel free to share any suggestions you might have.
Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#2 dgray001

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Posted 03 June 2013 - 12:16 PM

I guess I'm pretty much a parkie orphan too, although I never really thought of that way. My father suffered with parkinson's for many years and has passed away. I don't really have any close family members who can or are willing to help me, although they all seem very sympahetic. My mom is not really able to help, and is at the age where she expects help from me. My brother is the strong one of the family and he does try to help, he did drive 2 hours down here to take me to my neurologist appt. My son is 20 and out on his own. He's had a hard life - losing his father at the age of 2 and I struggled as a single mom. I could not put any more on this child than i already have. I have withdrawn from most of my friends, but I do have one close friend who has said she'd help me, but I know she's so busy with her own life, she doesn't really have time. Right now, i'm pretty functionable with meds and lead a somewhat normal life from those on the outside looking in. Nobody knows the internal struggles I face on a daily basis. My boyfriend has accepted the fact, but he doesn't really understand and doesn't really help me or even want to listen. He would tell me i'm complaining and "put my big girl panties" on. So yes, now that you mention it, I do feel alone, very alone and i wonder how I will survive in the future when things get progressively worse. I try to not think about it and just focus on today and make the best of today.

I do feel there are people, like us, who don't really have a strong support system that would benefit from the ideas you suggested. Sometimes it helps to just talk with someone who can listen and not be judgmental. I often write in a journal as a way to just release my thoughts when I have nobody who will listen. I guess that's the reason I joined this site, to connect with people who understand what I go through on a daily basis. This is a tough fight and its even tougher when you do it alone, I think a volunteer network would be great. Let me know if I can help. I just finished up my BA in business management, pick my brain before dementia sets in please! Just kidding :-) But seriously, good ideas and i would be glad to help if i could.

#3 Beau's Mom

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Posted 03 June 2013 - 02:00 PM

Hi dgray! What part of KY are you in? My brother lives in Radcliffe and works out of E-town. I've been to KY many times!

So, I am not the only one. Didn't think so. I would love to pick your brain. What I envision is creating a group of volunteers to assist Parkies through going to doctor visits, taking them out to walk for exercise, and being an advocate who will stand up for their needs when they are hospitalized. I have been in several hospitals since last October and believe me, most are neither PD literate or PD friendly. Even armed with an Aware in Care kit from NPF, I had to fight to get my Sinemet on time. If you are sick enough to be in the hospital, your sure don't have the kind of energy it takes to get your needs met from a nurse who insists she knows more about it that you do! I had one nurse leave me without Sinemet, folded over on the bed unable to pick myself up for two hours because she thought I was faking and if I wanted it bad enough I would pick myself up and ask for it! I was rescued by an aide from another floor who saw my evident distress. The nurse had told her aides to leave me alone. Later I asked her what chemical was missing in a Parkie brain and she said she was sure it was Serotonin. Even when I told her it was dopamine, she didn't believe me.

I live in an adult family home which is paid for by Medicare and WA state Medicaid. I get $62.79/mo for personal expenses. All my disability income goes to pay for my care. I am not allowed to have more than $2000 in my account at any given time. Thus the need for volunteers, not paid caregivers.

I am open to any suggestions you may have. My number is 425-877--6214 (PDT). My real name is Dianne Dickerson. Please feel free to call me or write to me here. Thanks for your interest!
Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#4 Golden01

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Posted 03 June 2013 - 06:23 PM

In my church, we are encouraged to volunteer through a community program that trains volunteers to help people stay independent. I haven't participated, but know others that have assisted the same person for several years (can be grocery shopping, taking to doctor's appointments, etc.). Maybe there is something already existing where you live. Here's the link:

http://www.duetaz.org/

#5 Vanillab1027

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Posted 03 June 2013 - 07:03 PM

Although I am not a parkie orphan (or at least not at this time), I have an idea that might help. Perhaps newly diagnosed parkies could be organized to help those farther along in our area of the country. Not only would be it be a way for us to pay it forward, but it would also give the parkie orphan someone who understands the disease, speaks the language, and could be a better assistant and advocate in medical situations.

I have skills in organizing data and coordinating people and events. Let me know if I can help somehow from here.

#6 Beau's Mom

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Posted 03 June 2013 - 08:46 PM

I would appreciate anything you can offer. It would be delightful if we could help each other. It would depend on each person's acceptance of their disease, and their ability to get out and about. Of the 1 million PWP's in this country, only a small fraction make it to support groups, forums like this or Facebook groups. I believe it will take others who have an interest in PD--caregivers whose loved ones have passed on, adult children of PWP's, etc. Throw out ideas and let's see what comes of it.
Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#7 Beau's Mom

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Posted 03 June 2013 - 08:51 PM

I live in the least church attendance state in the US. I have called several churches to no avail. They want you to be a member. The handicapped bus service in my county doesn't even offer rides on Sunday. I've tried Volunteers of America, Catholic Charities, and the Senior Services in two counties. Money is very tight and all charitable agencies are cutting back on services. If we want this done, we will most likely have to do it ourselves. I have no doubt that we can.
Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#8 Golden01

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Posted 04 June 2013 - 08:35 AM

Have you talked to the folks at your Area Agency on Aging? In my area, they also help folks who are disabled. This website has a "service finder" feature: http://www.aoa.gov/

#9 Beau's Mom

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Posted 04 June 2013 - 10:06 AM

Golden01, is that only in Arizona? I would like this to be a nationwide project. I will Google duetwa.org and see what comes up. Yes, I have talked to the local AOA. They referred me to Catholic Charities, who limits their services to doctor, social service and senior centers only, and it is only transportation; they do not go into the appointment with you. Thanks for your input.
Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#10 Golden01

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Posted 05 June 2013 - 07:37 AM

Duet is probably just in Arizona. You might contact them to see if they know of similar programs in other states. They've done wonderful work in Arizona for over 30 years.

#11 dgray001

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Posted 07 June 2013 - 09:19 AM

Dianne,

I'm in central ky - in between Maysville and Morehead, roughly 60 miles East of Lexington.

I have been thinking about this discussion and unforunately there just isn't anything available in my area that i'm aware of. I agree, its up to us to figure something out. We can put our heads together and hopefully come up with some ideas. It just hasn't been a creative thought provoking week for me, but I'm still thinking.....

#12 Rick_PacNW

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Posted 10 June 2013 - 04:08 AM

Hi Dianne,
I live about 35 miles south of you, in Federal Way. I was sorry to read of your experiences at your doctor's appt. I'm in the early stages of PD, so I'm interested in what you describe: people in the early stages helping out those a little further along 'in the journey'. I could become a Parkie Orphan too, in the future. My adult son lives with me now, but that could change as the years pass.

I go to the Booth Gardner Parkinson's Care Center in Kirkland, and I'm very pleased with the doctors & staff. Would that be an option under your Medicare?
-Rick

#13 Beau's Mom

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Posted 10 June 2013 - 11:49 AM

Hi Rick. Nice to meet you! I was being seen at Booth Gardner but now see a Dr. Kim at UW. My neuropsychologist is still at Booth Gardner, though; Dr, Kristy Sherman. I just came from my weekly visit with her.

I am very interested in talking with you. You can PM me your number and I will call you. My number is listed in a previous post if you have free long distance. I have been asked to write an article for the NWPF fall newsletter regarding this issue. I will be submitting an abstract for a poster for the World Parkinson Congress in Montreal in early October and that will defray some of my traveling costs.

We can start locally, though. I look forward to talking to you!
Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#14 Beau's Mom

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Posted 12 June 2013 - 11:59 AM

I have begun my awareness campaign for the Parkinson's Orphan Volunteer Advocates network. Please check it out at https://sites.google.com/site/povanow/. If you can help me develop the site and promote the idea in any way, please let me know here or at pova.now@gmail.com. Thank you.
Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#15 sarahjo

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Posted 14 June 2013 - 12:04 AM

awesome Dianne, i will pray this will take off, there are so many ppl out there that have no idea, you are so amazing, blessings to you and again thanks for being there when i first signed on.

#16 Beau's Mom

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Posted 14 June 2013 - 08:29 AM

Sarajo, my pleasure. You can do more than pray if you have any skills that can help me build this nationwide. That means finding out what's available, or not, in your area. We have to document the need in numbers in order to apply for funding to get this rolling. At this point, I couldn't even buy a roll of stamps to mail out flyers! Together we can make this a reality! Pass it on!
Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#17 Beau's Mom

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Posted 16 June 2013 - 01:52 AM

A New Normal


Every so often when you have a degenerative neurological disorder like Parkinson ’s disease, a new symptom appears that wreaks havoc in your daily life. For me recently, this has been loss of my ability to swallow more than a few bites of pureed food at a time. There will be no more burgers, medium rare steaks off the backyard grill, or baked potatoes with all the trimmings. No salad, no Buffalo wings and no Papa Murphy’s pizza, even if I have a coupon. Never again will I enjoy that first bite of cake, warm chocolate chip cookies fresh from the oven, or buttered popcorn while the previews are playing. No pastries; no pretzels, no spinach and avocado dip. No Mexican chips and salsa, or Chinese Kung Pao Chicken. No sitting on the Seattle waterfront with a fresh basket of Ivar's fish and chips.

Because of lactose intolerance, there will be no milkshakes, hot fudge sundaes or Dove Bars. No desserts made with cow's milk, like chocolate pudding or strawberry shortcake with whipped cream. No pumpkin pie. No biscuits and gravy, omelets, or grilled cheese sandwiches. No yogurt, frozen or otherwise.

Most difficult of all: No chewing. Do you realize how much aggression you can get rid of by chewing beef jerky? Add to that the inability to walk alone for exercise and you have a recipe for severe stress buildup!

Being a resilient person, I will adjust to this new normal, as I have to so many others since my diagnosis. It will take time. I will move from sadness to anger to depression to irritability, to resignation and back many, many times. In the end, as always, I will reach acceptance and move on.

I have a lot I want to accomplish. I have tons of experience, strength and hope to share. There are projects to start and see through to completion that will benefit Parkies everywhere. There remains much room for spiritual growth. I have much to do, and miles to go before I rest.

My life is not over. I still have much I want to do. I have less energy because I'm not getting good sustenance yet, but that is in the works. I walk like a drunk, even with my walker, because poor nutrition affects my already impaired balance. I will need more frequent rest periods.

But, my electric wheelchair should arrive in about three weeks. I chose the color myself: Purple Rain, the perfect choice for a hazel-eyed girl from Seattle. When I get it, I will motor down the road to Jamba Juice and get a free sample, because that’s about all it takes to fill me up. I can see a positive side to this already!

Edited by Beau's Mom, 16 June 2013 - 01:53 AM.

Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#18 LarryH0123

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Posted 16 June 2013 - 09:12 AM

Dianne,

Your post above was quite inspiring. You are a strong woman and your spirit shines bright.

I have contacted the Hawaii organization that helps PWP to see if they, or any other organization they are aware of has a no cost advocacy service for those who have no caregiver and no funds to pay for assistance with things like trips to the doctor or other necessities. I'll let you know what I find out.

#19 Beau's Mom

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Posted 16 June 2013 - 09:27 AM

Thank you, Larry! That's exactly the kind of information I need! :cool:
Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#20 LarryH0123

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Posted 19 June 2013 - 08:15 AM

Aloha Dianne,ponded to my email and said "

I got a response back from our local PD organization. They recently have become a part of the NPF national organization. The VP responded to my email and said " In regards to covering services, we presently do not offer this. We are working on building up our revenue but do not have enough of a consistent stream to sustain this right now. One consideration on the table is to have scholarships or grants"

I will try to find out if there are other organizations who may provide these types of services here.




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