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shirleyengebretsen

Single with PD

51 posts in this topic

I'm alone too and I'm sure I will get some kind of disease as I get older and that day will come before I know it.   When I see news stories of old ladies who live alone and are found dead days or even weeks later I used to wonder how that can happen but now I  know.   Do what you can for yourself to keep healthy and independent  but also please do not feel bad to rely on friends and family who offer to help.  You will really appreciate it and see it as a blessing. 

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Trust me as someone taking care of someone who does not have a choice in the matter now. You will wish you have someone with you when that time comes. It is scary and lonely and to be forced to trust a stranger to clean you up and feed you,etc is too personal but what can you do then?

Maybe. I pay strangers to clean my house, cook my meals, and to do some some very personal things like going to a Dr. for a checkup. Doesn't seem like it would bother me much to have one caring for my needs.

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Yes, I think we all learn to be fine with what life gives us.  Rogerstar1 was able to make a decision and feels it was the right one.  I was unexpectedly widowed, with no choice in the matter.  A few years later now, I see some truth in the idea that my spouse has at least been spared watching the decline of the one he loved.  Also living alone has made me more active, both physically and mentally, because I have primarily myself to rely on.  I guess we adjust to circumstances.

 

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When you are still in the early stage and can take care of yourself then it's a no brainer.  Who doesn't want to be independent and not have to rely on someone to get things done?  I'm speaking from personal experience taking care of a mother for over 10 years who cannot do a thing for herself.  The level of care you get from a family member is so much more than from someone you pay to be good to you but then it's hard to understand what I mean when you are not at that point yet.  Caregivers who are doing this for family will know what I mean.  I'm not saying you will be abused by a stranger but if you have family to depend on then be thankful you are in a good place.

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You are absolutely right, miracleseeker.  I have been unusually lucky to go so long with such slight symptoms, and I have learned from daily contact with a PD caregiver that the patient and the caregiver who are spouses have a definite advantage.  I have also learned from her experience that no matter how great, how deep, how long-lived the love of that couple may be, there is significant strain for the caregiver and sometimes feelings of guilt for the patient.  It is a highly complex relationship, and when the time comes that I can no longer live alone, I realize that I will not have that advantage of my spouse as my caregiver.  I have already begun visiting and evaluating assisted living facilities with tiered care in an effort to prepare for my future as well as I can.

 

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Hi J,

 

You still amaze me with your slow progression.  My mom takes Mirapex with Stalevo but is not doing as well as you.   I wonder what you are doing right?

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miracleseeker,

We've heard many times that we are ll different - so you never know if someone with slow progression is doing "the right" things or if he is a just lucky person. 

Just a week ago I met my friend's father who has PD for 15 years - and still manages with a very small does of levo (don't remember exactly how much - but it was REALLY symbolic), and everything he does is walking 30-40 min per day. No supplements, no exercises, nothing..

 

Maybe J knows some secret - I'd be glad to hear it too - but there is no one recipe for everyone, I am sure  

 

waiting for J's reply :)

 

BTW, here is what she wrote in her profile : " think the three most important ways to fight PD are exercise, optimism/laughter, and the right balance of medications.". Same well known secrets ...

Edited by Natasha

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Walking 30-40 minutes a day is exercising.  So that's what he's doing right and probably lives a low stress life.   I'm sure everyone wonders what they could be doing with their life right now if they progressed as slow after so many years with it.  Life is not fair.

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As far as caring for another spouse I think it as a good thing.My wife while she doesnt have PD she does have health problems which need attention.We all get old so  we must of course do our best to stay well and have no regrets and guilt later on.

In  years past I look back at my uncles and aunts and grandparents.One thing very common was they stuck together till the end which I to plan on doing.

Love has no burden

John

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miracleseeker

You are right - walking is exercising, but it is almost nothing comparing to the activities I read about - running, riding, force exercises, etc.

And still such a result .. Life is not fair, yes..

Low stress life - sounds like a dream ) . I wonder how some people manage to stay calm and relaxed most of the time - I am trying hard and there are some results, but I am far far away from what I'd like to be. Also - he lives in NY - seems to me not the best place for low stress life (?)

Anyway, I always remind to myself that I am lucky enough - could be better, but could be much worse..   sometimes it helps ) 

 

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A positive attitude is all we can do for ourselves when disappointments keep creeping in.  Something always comes up as a result of my mom's PD and I just want to scream and give up but I can't.

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I want to find some warm words .. but nothing can express the feelings ..at least not with my English )

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Hello again, miracleseeker and Natasha and others --

 

As far as I know, I am doing nothing different from other pwp.  When people ask me why I'm doing well after 19 years, I give the same answer Natasha gave: luck.  I do exercise: two- to four-mile walk or hike five days a week, elliptical 40 min. twice a week, stretches daily.  That's about it.  Many pwp get more exercise than that.  Then there are the medications: Azilect, Mirapex, Sinemet, Amantadine, Domperidone.  It is possible that taking Azilect so long has slowed the disease somewhat.  Recently my doctor and I rebalanced dosages so that I am taking more carbidopa/levodopa and less Mirapex.  He was a bit uncomfortable with my 6mg. per day of Mirapex, and I was feeling a slight progression of symptoms, especially balance and distance judgment.  It's too soon to say if the new regime is making a difference.  Just in case it matters, the supplements I take are Vitamin C, Ubiquinol (from CoQ-10), Inositol, low-dose HRT, and glucosamine for arthritis.  By the way, the Domperidone above is for my digestive tract; PD struck my stomach before my hands and gait.  It counteracts gastroparesis.

 

Believe me, if I knew what secret ingredient in my Parkinson soup was keeping me stable, I would share it with the world.  But I just cannot think of anything I do that thousands or millions of others aren't already doing as well.  (I do eat lots of sweets now, yet I would hesitate to prescribe ice cream, candy, and cookies as a cure for PD!)  As long as I'm on meds, I have no tremor, no dyskinesia, no gait problems, no freezing.  I have experienced all of those, though, when off medication, as I was to participate in a research project about six months ago.  When a doubting Thomas asks, "Are you sure you have Parkinson's?"  I can say that I'm absolutely sure.

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It's even more amazing that you have been on 6mg of Mirapex a day and can still function and not get foggy in the head.  My mom takes .50mg morning and afternoon then .75mg before bed so she can sleep longer and more soundly.   From day one of taking PD meds she was always sleepy and continues to today.  I envy you.   Have a great day!

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It is strange, but Mirapex never made me sleepy.  I'm still taking 4.5 mg. per day and have no side effects.  It's carbidopa/levodopa that I have to be careful with.  It caused low blood pressure and lightheadedness when the doctor doubled my dosage.  I backed off a little and gradually worked up to the double dose, and my body seems to have adapted.  It has favorably affected my piano performance, though!  Between two and three hours after a dose, I feel that my hands are "normal" at the keyboard again.  Then I can feel the sharp control fading again.   These meds are fascinating.

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I think Mirapex lasts longer in the body.  If you didn't have side effects from it then why did he decrease it?   My mom only reacts well to Stalevo instead of plain Sinemet.  That causes dyskinesia for her and it does not last very long either.   How different my mom's life would be if her PD progression was like yours. 

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Miracleseeker --  Yes, I understand how different your mother's life could be.  I always feel good encouraging newly diagnosed patients to be hopeful because of my case.  But I feel terrible writing about slow progression when I realize that many who read it have no such luck and cannot maintain hope forever.  And I also know that my own situation will change eventually.  However, I do wish I could grant every pwp my current rate of progression!

 

I had to change doctors within the complex at Oregon Health Science University, because my former doctor was going into research full-time instead of 80% each week.  The new doctor, like most doctors here and more so abroad, did not think a Mirapex dose that high was completely safe.  Apparently, the drug has been known to create no visible bad effects over the course of many years, then suddenly to show deleterious effects.  I was informed of the possibility by one of the Parkinson's nurses.  I have not verified it, but I know that in the warnings provided by the drug company, dementia and hallucinations were among the numerous side effects noted in the elderly (which I am fast becoming).   Some doctors have even declared 6 mg. per day an overdose. 

 

Best wishes to you and your mother --

J

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Hi, miracleseeker --

 

As it happens, I have just changed my dosage again.  I must be ultra-sensitive to sinemet (perhaps like your mother?), because at four 25/100 mg. pills per day, I started getting the precursor to dyskinesia -- something entirely new for me.  When standing, I developed a tendency to sway back and forth.  I could stop it at will, but then unconsciously, I'd begin again before long.  So I am back to three pills a day and rarely have the swaying urge now.  My gait and balance are still okay, and I try to remember good posture, though I often catch myself slouching.

 

How is your mom doing?  Is she in a stable period?

J

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Not popular, just lazy -- I hadn't deleted anything since 2015!  Thanks for the heads up.  Now there is plenty of room in my mailbox.

J

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You all amaze me.  Thank you for sharing.  I can relate to those with very few family members on whom to rely as "caregivers" and I greatly appreciate concern and consideration for "friend" caregivers.  Being very new to this disease I have little to offer other than my appreciation for the strength and grace so many on this forum exhibit.

 

Living Interdependently is something I am consciously working to improve and I offer it as a concept that may bring some clarity and/or comfort.  The only person we are guaranteed to be with for our entire lives is ourselves (and even that person can be a stranger at times - no? :wink: ).  We must learn to rely on and like ourselves as we are, especially when there are things we cannot change, but living "independently" is something our society (in the US) seems to value maybe too much.   We seem to link being "dependent" with being burdensome and/or somehow less "valuable".  There is a special balance between the two that I read about many years ago called "interdependence".  The term defines itself and I acknowledge that it is likely as individualistic as PD, but I believe it is fundamental to wholehearted, joyful living.

 

Interdependence has to be a conscious social and attitudinal choice, and it's not always "comfortable" but I believe it is possible with clear communication (which is a never-ending exercise and not always verbal) and the ability and willingness to accept that we ALL have something to offer in every situation.  Just sharing energy and "humanness" is often more rewarding than we recognize.  Think of how "good" it feels to pet a cat and hear/feel him cat purr, or have a dog put his head in our lap or sit by us because he wants to be near us, etc.  Other creatures seem to understand the value of "sharing quiet energy"; we are wise to learn from them.

 

Interdependence also requires a team of options (not only human) and trust among the human members since "no" needs to be an acceptable answer to the request for help.  The key is "no" doesn't mean "never" or "don't ask again" and it certainly shouldn't mean the need for help goes unmet, although it might be delayed.  I recognize that sometimes "no" is not an option caregivers have, but with a "team" built by living interdependently, maybe "no" is an option for any one member more often?  If Margaret Meade was correct in her statement "it takes a village to raise a child", why don't we continue to need the village "after we've been raised"?  Also, we have to accept that even when we feel "helpless" we have something valuable to offer.  Needing help can be very valuable.  Helping other living things is one of the most rewarding experiences humans can have.

 

I like the interdependent, wholehearted, joyful living concept, but I admit, I have by no means perfected it in my life.  Thank you for allowing me to make this forum "part of DH and my team".

 

Keep going, as J. so wisely reminds us - Laugh Often, best of luck and please keep posting.

 

Peace - 

Edited by Lonnise
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