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#1 chelle

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Posted 31 August 2013 - 05:21 PM

I'm starting this page because as much as i love being able to post about all the things I hate I also love to hear when people have good news or good days.

I have overall had a good week but several things have made me excited. One is that my genetic testing came back negative so Im happy to say that my kids will not get YOPD or at least not from me. that in its self lifts the world off my shoulders.

Next its one of my two favorite time of the year. Football time Woop Woop! So excited to watch LSU play tonight. We tend to like college football more than NFL. Excited for Friday Night Lights!!!! My sons first High School football game was yesterday and they won!


Other things im excited about is that Oct 15 is almost here which is opening of Bow Hunting Season in Alabama. I love going to our camp cause the phones don't work and its so peaceful. I guess its worth the 6 hour drive. Its nice that my dad and his friend which is my best friends brother went in together for land so we always have great people at the camp. I know some are offended by hunting and Im sorry but i enjoy it. And my freezer is running low on backstrap, sausage, hamburger meat ect....

Last but definately not least nights when there is a breeze will be a warm welcome to the hot hot hot South Louisiana weather.

I have truly been fighting through my pain to try and enjoy life a little more. I hope everyone has a blessed and safe Labor Day Weekend. XOXO to everyone!

Chelle

#2 Beau's Mom

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Posted 31 August 2013 - 09:02 PM

My excitement for the day has been that I've had a pajama day (thank you, Kim!) and done nothing except nap and win big on video computer slots which don't cost me a penny. It was a gorgeous day and I had planned to take my electric wheelchair out to the library, but discovered that it's closed beginning today for remodeling. Not to worry, the librarian is coming to me Wednesday afternoon anyway. Then, next week I should get my move-in date for my new apartment! I've gotten some items paid for, and will look for others in the next three weeks. I've been comfortable enough in the hotel, but will be glad to be in a permanent home. I have been moved from pillar to post 16 times in the last 12 months! Happy days, y'all!
Dianne

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

#3 chelle

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Posted 31 August 2013 - 09:11 PM

I call it bumming because I like to spend my weekend in sweats and a tshirt. I'm sure I'm keeping yoga pants in business. Haha. Its funny cause when my prego friend calls for us to go to the movies she always says I'm bumming today will u bumm with me. Its sounds odd when I read what I'm writing. Congrats on the new apartment.

#4 Lee Meddin

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Posted 02 September 2013 - 10:21 AM

Greetings all, Lee Meddin here, diagnosed April 2010. I’ve developed a Parkinson’s news site that you might find interesting (part free, part paid). Each day I scour the web for breaking Parkinson’s news; when I find something worthwhile, I post it, with a link back to the original article. Many of the articles are very hopeful (new discoveries, therapies, etc.), which is why I started the site. Take a look and let me know what you think, and how I can improve it. See www.parkinsonsnews.com, and reach me at info@parkinsonsnews.com. Thanks.

#5 Donald Ennis

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Posted 04 September 2013 - 08:28 AM

Chelle,
I hope Oct 15 comes quick for you. I have spent the last 3 weekends tuning up my bows, fixing arrows and preparing also, bow season starts for me on September 23, and I have a big 12 point that has been my "Moby Dick" for the last 4 years.

I had a great day at the beach to start my week, and will be ending my week camping with my son and his boy scout group out a Ft DeSoto, one of the best beachs in the country. I love living in Florida.

#6 Brad24

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Posted 05 September 2013 - 03:02 AM

Chelle love this post! I know how you feel about the genetic testing. Mine came back negative also! I was worried especially because my grandmother had PD.

I am getting ready for archery season too. Plus the good walleye and striper fishing is coming up. Please post pics I will also.

Life on the Neupro Patch is so much better for me. Less cramps diminished tremor heck I feel half normal and I am bench pressing 300 lbs again!
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."

#7 sarahjo

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Posted 05 September 2013 - 06:48 AM

had a very busy three weeks, getting my daughter ready for college, went on a road trip to my sisters, and Monday we drove to the college to drop off our daughter get her situated, and we came home yesterday, its been one of those yah moments, and yet sad at same time, but the yah moments out way the sad, I am excited to hear about her adventures (challenges, successes, and so on) also some other great things oldest is getting married, been running here and there for wedding stuff, (thank goodness for a wedding planner to keep us on target, LoL) my son's school work should be in anytime excited that I still am able to teach, I love teaching, I just couldn't do the kinders anymore. I will be homeschooling my son, under our school, I think its still call homeschooling. anyhow its a good thing, and I am excited about it. also got some great blessings this week, as we were in Lancaster, Ca. dropping my daughter off, my neuro, instead of having me go through the sleep study again, determined that I needed the cpac machine, and ordered it for me, so I am excited to see if its gonna work (besides insurance paid all but 80. for everything I need/ don't know for sure but I think that is good, at least for our pocket book) , we have been sleeping with celling fan on high and that has helped my sleep, also I went to my primary dr. last week (like I said lots of appts.) and I lost 8 pounds since my last visit. and my bp was down to 150/100 yes I know still high but better than 180/112 so in getting the cpac Its suppose to help my bp even more. also exercise changing eating habits etc. oh a huge blessing this week also got meds laid out to the right formula so hope this will continue to help. I am excited about a lot of great things, I believe some of this good stuff has helped my STINKIN THINKIN, and given me a better ATTITUDE. I was reminded the other day what we think is how we become, and I was in a very neg. place, and I am not perfect but trying to keep a positive attitude thanks chelle for starting this post, my next in put wont be so long. just have had an amazing amazing couple of weeks...you all have a great day, I love hearing the great things everybody get to go through in their lives, it lifts my spirits even if mine our yucky, I missed you all this past few days, one more great thing to add, I am so greatful to all of you my new found friends, I have maybe two or three real friends that try to understand what I am going through but they truly don't so I am so excited about all of you and our friendships that are developing in our pd family.... Blessing to you all, and good day sarahjo

Edited by sarahjo, 05 September 2013 - 06:59 AM.


#8 Beau's Mom

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Posted 05 September 2013 - 09:12 AM

My electric wheelchair was fine-tuned a little yesterday so I will feel a little less nervous using it in public. At home, of course, there is no need to use it since my walker is handier. So, it's practice, practice and practice not feeling embarrassed when people look at me funny during the learning process. It reminds me of when I passed Driver's Education in high school. The instructor came into the pediatric hospital room where, as a Candy Striper, I was feeding his young son a popsicle after a tonsillectomy. I passed the class with the following note: Dianne is a nice girl, but she needs a lot of practice!
Dianne

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

#9 chelle

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Posted 06 September 2013 - 07:42 AM

Good Morning Everyone

Im so happy to see that even when we have bad days or can't do something we want or need to do we have each other to fall back on. Thanks to everyone on here for that.

Tonight My son's football game is going to be odd but exciting. The reason I say odd is we used to live DTR (down the road, as we call it) until Hurricane Katrina wiped us out. Now we don't live down there anymore so it will be strange watching my son play for the team that has always been a rival. Im excited but miss being DTR. Where we are now is town and Im such a Country/Bayou girl. My kids seem to be growing up so fast.

I will probably skip around on subjects but man am I hungry! I have never wanted to be skinny just healthy but we have so much good food over here. I could really go for some beignets and a vanilla latte.

I hope everyone has a great weekend. Mine will consist of a yard sale cause I hate clutter and watching Football. Im sure the Saints play this weekend so that will be nice. I will try and post pics... if any of my friends on here have Instagram or twitter let me know so i can add you. I get on Instagram more often then twitter... also if any one is in the NOLA area the Parkinsons walk is coming up. Should be nice and maybe even a good day for the zoo after.

#10 Donald Ennis

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Posted 06 September 2013 - 08:20 AM

Had a really bad cramp,in my shakey arm yesterday, I'm so happy it's not so bad today. Excited to be heading out Camping with my son and the Scouts tonite.
Chelle, I know what you mean about good food out on the Bayou, I love going out to visit my cajun family. good food and good people

#11 Brad24

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Posted 07 September 2013 - 05:30 AM

I had a bunch of bad Neupro patches that wouldn't stick. I was a bad few days of foot and back cramps. Got the new ones yesterday boy is the patch good!!

Good luck Hunting this year guys!
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."

#12 sarahjo

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Posted 07 September 2013 - 07:39 AM

Good morning everyone, just wanted to say sons books came in yesterday, and it funny I am excited I have two ladies in our church that are also homeschooling that have boys my son's age, and a little older, this is exciting because we are going to be having p.e. and field trips together, and that was my only one concern about homeschooling is that he would withdraw from ppl. but no chance. He will be able to have friends his own age, and possibly have a good friend he can talk to, when he is scared about what is going on with me, and so on, my son is a mama boy you could say, in this since he watches over me, and makes sure I am ok, ex. last night had a friend that needed to talk she has been going through a rough time, one of her sons just left also for college, shes had shingles three times this year, her extended family is a mess, so in short she needed a shoulder, I believe that if we want to have friends we MUST be available for others in their time of troubles, no matter time of day, that being said, I believe that we not be selfish all the time about our illness, and you know when I left her at midnight, we were both laughing and reminiscing even though both in so much pain and barely able to stand straight we had a great time, she is feeling depressed and whats the point but again its not me, but just being available for ppl. helps not only them but us as well, like I said in my other post, that I only have about three really close friends and they don't know how to help me when I am down or in so much pain, so its nice when we can just hang and laugh at each other and remember old times, I love you all and do hope you have an amazing day, Its gonna get crazy for me i will try and check in and read your amazing post they lift my spirits when i am down and my family thinks i am crazy because i will be reading some post and i will be like oh man , or yeah and the just look at me with a funny look but that is ok, i had to explain to my wonderful husband that as much as he tries to understand what i am feeling that you all can relate, and he got to read some of your post, and he has so helped him also, he has been reading more and finding me stuff to read POSITIVE findings and so on about pd, also he was hit with the reality that this illness is not going away, and hes been more understanding. Love you all i am rambling again, so i will say good day my friends, i hope and pray that some day we can all get together with our families and meet one another. sarahjo

#13 chelle

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Posted 07 September 2013 - 07:09 PM

Good morning everyone, just wanted to say sons books came in yesterday, and it funny I am excited I have two ladies in our church that are also homeschooling that have boys my son's age, and a little older, this is exciting because we are going to be having p.e. and field trips together, and that was my only one concern about homeschooling is that he would withdraw from ppl. but no chance. He will be able to have friends his own age, and possibly have a good friend he can talk to, when he is scared about what is going on with me, and so on, my son is a mama boy you could say, in this since he watches over me, and makes sure I am ok, ex. last night had a friend that needed to talk she has been going through a rough time, one of her sons just left also for college, shes had shingles three times this year, her extended family is a mess, so in short she needed a shoulder, I believe that if we want to have friends we MUST be available for others in their time of troubles, no matter time of day, that being said, I believe that we not be selfish all the time about our illness, and you know when I left her at midnight, we were both laughing and reminiscing even though both in so much pain and barely able to stand straight we had a great time, she is feeling depressed and whats the point but again its not me, but just being available for ppl. helps not only them but us as well, like I said in my other post, that I only have about three really close friends and they don't know how to help me when I am down or in so much pain, so its nice when we can just hang and laugh at each other and remember old times, I love you all and do hope you have an amazing day, Its gonna get crazy for me i will try and check in and read your amazing post they lift my spirits when i am down and my family thinks i am crazy because i will be reading some post and i will be like oh man , or yeah and the just look at me with a funny look but that is ok, i had to explain to my wonderful husband that as much as he tries to understand what i am feeling that you all can relate, and he got to read some of your post, and he has so helped him also, he has been reading more and finding me stuff to read POSITIVE findings and so on about pd, also he was hit with the reality that this illness is not going away, and hes been more understanding. Love you all i am rambling again, so i will say good day my friends, i hope and pray that some day we can all get together with our families and meet one another. sarahjo


I hope we can all meet one day too. Yall help me not feel lonely in my madness. And I love that's its not where we have to worry about people interfering with our relationships with our spouse's. I guess cause we respect those who have familys and those that don't. Its unexplainable how many rough times yall get me through. I feel blessed.

Not sure hold old ur son is that u will be homeschooling or if they are into sports but my sons football team has a home school kid on it. They are able to play at any school in our parish... (county's).

Anyways ima keep it short LSU is playing. Love our Tigers!!!



#14 sarahjo

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Posted 08 September 2013 - 11:06 AM

thanks chelle, one of my friends also said the city league, so I am going to look into it, my husband use to lift weights and has recently gotten back into it, my son will be thirteen in nov. so we will be getting him is own weight set, and getting him started, he's excited, to be working out with his dad, I hope that maybe I can also, right now I am looking forward to being consistent going to the gym, and my exercise classes, and schooling a.j. (which is his nick name, but informed me last night that he wants to go by his real name now, which is Andrew Joseph Davis, (like his dad) ) I am so Blessed beyond anything imaginable So Monday (tomorrow) is the big first day of school, hope to chat with you all in the evenings. Bless you all and I am off to church. Love to youall

#15 chelle

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Posted 08 September 2013 - 07:25 PM

thanks chelle, one of my friends also said the city league, so I am going to look into it, my husband use to lift weights and has recently gotten back into it, my son will be thirteen in nov. so we will be getting him is own weight set, and getting him started, he's excited, to be working out with his dad, I hope that maybe I can also, right now I am looking forward to being consistent going to the gym, and my exercise classes, and schooling a.j. (which is his nick name, but informed me last night that he wants to go by his real name now, which is Andrew Joseph Davis, (like his dad) ) I am so Blessed beyond anything imaginable So Monday (tomorrow) is the big first day of school, hope to chat with you all in the evenings. Bless you all and I am off to church. Love to youall


Sarahjo,

That would be awesome for him to work out. My oldest is 14 his name is Brodey. He worked out at our YMCA every evening after football over the summer. I wish i could show u a pic. Its unbelievable the difference it has made with him. If I can remember how to post from photobucket I will put a pic. Hope all goes well with homeschool. Talk to u soon....

#16 chelle

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Posted 08 September 2013 - 07:41 PM

Sarahjo,
Here you go I figured it out. Its hard to believe he just turned 14. In the last year he has grown so much. When your son starts working out, you should take a before picture and take some more as he progresses. Do you have Instagram? Im getting off for the night. So hopefully your day tomorrow goes as planned. Do yall have like a homeschool group or is it just you. I know here they have where you can do it at home or they get together as a group. Almost like their own little school. You might have answered this above but by the time i respond ive already forgot what I read. haha.
Chelle


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Edited by chelle, 08 September 2013 - 07:48 PM.


#17 Donald Ennis

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Posted 09 September 2013 - 11:49 AM

  • Sarahjo,
We are also homeschoolers, your kids can participate in any extra-curricular activities offered in the public school, this was a fight that was won almost 2 decades ago in the court system, the reasoning is that we are still paying for the public schools in our property taxes. We use alot of curriculm online, as far as feeling withdrawn, we have experienced just the opposite, not only do my kids interact better, they interact with poeple of all ages, not just kids there same age, (where in the real world will they only deal with kids thier own age). My son is involved in Boy Scouts (age 11) and the girls (age 17 and 11) participate in everything from Drama with a local performing arts group, to the oldest is working days (which kids in the public school can't),

I had a great weekend At Ft Desoto beach with the kids (and the Scouts), got burned to a crisp. I did have 3 occasions where I lost my balance and fell. One of those was really scarry as I was in the Grocery store, as I was falling a complete stranger caught me. He was shocked based on his innetial comment, " what the F...." but was very understanding when I explained the situation to him, turned out his mother also has PD and he was out with her shopping. Guardian Angels are everywhere.

#18 sarahjo

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Posted 10 September 2013 - 01:50 AM

Thanks chelle, and Donald, today went very well, in short there is about 38 children, just in two churches here where we live that we will be doing things with, Andrew decided the other night that he didn't want to be called aj anymore that was a little kids name, we will see, anyhow he did very well today. thanks for the insight. bless you all.

#19 Brad24

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Posted 10 September 2013 - 06:44 AM

Chelle, that's a great pic with your son lifting. Tell him to keep it up and follow a good diet too. I am sure with your good cooking he will be fine. Fitness is a great thing to start young and it will be easier for him to keep it up for the rest of his life which we all know is important. Just don't let him over do it. Trust me two shoulder surgeries have shown me the importance of warming up stretching and rest. My MDS who specializes in PD advised me to do the most strenuous workouts I can do. She feels this delays PD progression more than anything.

Have him learn rotator cuff exercises. They are boring and do show on the outside but they are important!

On another note getting ready to vacation in the Chesapeake next week. Plan on pending some fun time with the family and do some fishing.

Edited by Brad24, 10 September 2013 - 06:45 AM.

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."

#20 Brad24

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Posted 25 September 2013 - 06:23 AM

I finally found a way to keep my Neupro patches to stick all day! After having trouble and having to leave an important detail at work early one day I shaved my upper thigh areas. The patches stick now better than ever and I feel so much better. My workouts are better. I bench pressed 310 # the other day and did 22 pull-ups the next. I love the patch!
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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