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#61 zackabenie

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Posted 12 July 2013 - 12:20 AM

Thanks,
that is one of my favorite things to do. As I sit here right now in my backyard gazebo, I am thinking bout getting in for a late night float. I had friends over tonight and they brought either their grandkids or children. I have no kiddos (if you dont count the four dogs +1 do I am baby sitting for 2 weeks starting tonight.) and 3 cats. But my house seems to be where everyone gathers. I am going to put up some more pics in this forum soon. stay tuned for crazy Joelene (yep my real name) photos.
Joelene -
Smile every day and laugh at least once at something the PD is now causing you to do. I personally love the "left" turns that happen as I walk. The smile really works - it makes everyone worry what you have been up to!

#62 invisable

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Posted 12 July 2013 - 08:37 PM

Hey Joelene!

I knew I liked you.....I have no kids either, but love, love, love animals, they are my furbabies!

Edited by invisable, 12 July 2013 - 08:38 PM.


#63 Brad24

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Posted 13 July 2013 - 12:21 AM

Fish in a barrel!

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DETERMINATION "In the heart of the strong shines a relentless ray of resolve...It cannot be stopped, it cannot be controlled, and it will not fail."

#64 Brad24

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Posted 13 July 2013 - 12:21 AM

First fish!

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DETERMINATION "In the heart of the strong shines a relentless ray of resolve...It cannot be stopped, it cannot be controlled, and it will not fail."

#65 zackabenie

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Posted 13 July 2013 - 12:44 AM

I spend 2 nights out of 3 out here reading, knitting, or watching netflix. If I am lucky I sleep on the 3rd night,if not I am out here then. This space is only 29 steps to the pool - and there is little better in my Parky world than skinny dipping at 3am when all are sleeping.
Joelene -
Smile every day and laugh at least once at something the PD is now causing you to do. I personally love the "left" turns that happen as I walk. The smile really works - it makes everyone worry what you have been up to!

#66 invisable

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Posted 13 July 2013 - 01:04 PM

Zackabenie, you have a great attitude, wish I could adopt some of it!

I am in constant fear of "bad boy Parkie!"

#67 Daven

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Posted 13 July 2013 - 02:08 PM

Invisable,

I'm not sure what your constant fear is. If you do have Parkinson's, it's progressing at a snails pace. I think your slow progression indicates that you have something else going on. Parkinson's is so much more than the movement issues. The non-movement issues scare the crap out of me, that is if I could actually crap without help. My biggest fear has always been being diagnosed with Alzheimer's when I get older. I watched that disease steal every aspect of my mother till she was just a shell of a human being. Dementia does not present in all Parkinson's patients and from what I've read, Alzheimer's is rare in PWP. I could still lose my mind as I get older but that will probably be because my children have managed to drive me insane :cool: .

Dave

Edited by DaveN, 15 July 2013 - 07:36 AM.


#68 invisable

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Posted 13 July 2013 - 03:10 PM

Dave N - I love reading your posts to me, they reassure me. I just wish I could truly believe I don't have PD.
I do understand what you are saying about my progression, but my tremor (in leg) is only on one side and only at rest, stops the
minute I move it. This morning I felt it in a few of my fingers on right hand too. Since docs have done every test imaginable, I feel strongly it has to be PD, even though I don't have any slowness of movement since tremor started 4 years ago.

To be honest with you, the fear is killing me, I am in a depression and feel desperate to find out. It is affecting my ability to
enjoy my life and as you can imagine all my relationships.

I try to go on these sites for strength and inspiration, which you people do help me with.

I do thank you, you have a very comforting way of reassuring me that I don't have PD and I appreciate that, it is very kind of
you.

Now, I would like to reassure you, I have read a lot about PD, dementia can be a part of PD, but usually not until very end stage. Dementia is not exactly the same as Alzheimers. I have never read that Alzheimers is a part of PD.

Edited by invisable, 13 July 2013 - 07:32 PM.


#69 zackabenie

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Posted 14 July 2013 - 12:29 PM

This may sound crazy. But, finding out there was an answer to why I had such hand tremors, would "wander" off to the left when walking, especially embarrassing when walking with someone, or my personal favorite, when walking down a long hall way covering all sides of the hall due to my weaving. I went through the entire range of explanations both to my self and others. I am really tired, I am really stressed, and the "no I havent been drinking". So at least the dx of PD gave me a sense of peace. But on the other hand there is the terror of what to come. I am only 7 years into this disease and the past 2 have been a journey. I had to resign from a high level position in a national bio-science firm, which gave me and my husband a comfortable middle class life, running 4 miles a day, and (Dave you might not agree with this last one) , wearing sky high fabulous heels. Now, we watch every dime, my disability only pays a little over 1k a month, I can't run any more, hell, I have to use a cane to walk, and those sky high heels - well I am shopping for fabulous flats now.

But, somewhere in the middle of the last 2 years, I made the decision that I was going to be in as much control of this as possible. I made the decision to have the DBS surgery, I ride my bike when either my best friend or husband can go ride with me, or I get in my pool. Hubby has devised a great sound system for me at the pool. Music has always played a part in my life. Hubby is retired from career 1, as a sound engineer for international rock and roll bands to teaching at UTexas so he can be home with me. Nothing makes me happier than doing my morning workout in the pool listening to anything from Judas Priest, Eagles, Rolling Stones, etc. to Gilbert and Sullivan. If I didn't have such a good relationship with my neighbors, I am sure I would have met the police by now, 'cause I don't play it softly! The DBS has given me relief from the constant tremor, but brought on the balance instability and make my speech more of a problem.

Finding these forums has been a great relief to me as well, friends and my husband are great, but being able to correspond with other Parky's who really understand the issues is a comfort and informative. As a woman, I have not been able to find someone in my area, and who is around my age to talk to...

Now - let's all celebrate. Joelene slept last night 9 hours. It was the first time in 76 hours that I had slept. My cycle seems to be 48-72 hours with no sleep, then a crash. My neuro is concerned and has done 2 sleep studies and prescribed all kinds of meds. Right now in my cabinet is Lunesta, Serequel, Trazadone, Gabapentin and Baclefen. All of which I am supposed to take together. I can take these and stay wide awake but feel like crap. So I have been not taking them and the cycle remains. Neuro and I have discussed this and I decided to give this a 2 month run. I gave the heavy drugs a try for 2 months.

I agree with you both that the dementia is one of my biggest fears, being sort of trapped in my body now due to physical constraints is nothing compared to that. I have done the full day cognitive psychological study to give me a baseline, and will make this a yearly test, or more often as needed.

Joelene
Joelene -
Smile every day and laugh at least once at something the PD is now causing you to do. I personally love the "left" turns that happen as I walk. The smile really works - it makes everyone worry what you have been up to!

#70 Daven

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Posted 14 July 2013 - 06:23 PM

Joelene,

Don't mind the high heels, it makes women's legs look great. I know, that was very sexist but why else would you women do that to yourself if not to look good.

I've had sleep issues long before I found out I had PD. I have extensive nerve damage in my lower back. One of the things the nerve damage does is it causes the muscles in my lower legs to fasciculate 24/7. Most of the time its just harmless twitching, but when I lay down its like bugs are crawling under my skin. Both my wife and I do not appreciate this. I started taking Trazodone years ago to help get to sleep. My MDS has me taking Melatonin 1 hour before bed because he believes I'm acting out my dreams. Every night I wake up sitting on the side of the bed, its weird just sitting on the side of the bed. My wife tells me to come back to bed.

I've not done a full day cognitive psychological study but my doctor did do a baseline of my memory recall during my initial appointment. I failed miserably on that one.

DBS makes you hard of hearing? :)

Dave

Edited by DaveN, 14 July 2013 - 09:30 PM.


#71 LoveMyHubby

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Posted 17 July 2013 - 06:12 PM

Me and my hubby (PWP) :wub:
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And he will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away. -Revelation 21:4

#72 Brad24

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Posted 02 August 2013 - 08:45 PM

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My favorite fishing spot.
DETERMINATION "In the heart of the strong shines a relentless ray of resolve...It cannot be stopped, it cannot be controlled, and it will not fail."

#73 Brad24

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Posted 02 August 2013 - 08:58 PM

Meeting little brother for first time

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Brothers. (Little brother 1 1/2 years later)

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DETERMINATION "In the heart of the strong shines a relentless ray of resolve...It cannot be stopped, it cannot be controlled, and it will not fail."




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