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jb49

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Good team!  :-)   I enjoy hearing about Leia.  She also looks like she could have a little setter in her(?).   And that is so cute about Bob being so enchanted with leia.

Mrs. Tex, surely hope you get to have the arm sling removed tomorrow.

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Good morning Tom, Ella, Linda and everyone else.

How are you doing Dianne,  Emma what is  going on in Ireland these days.

Marco is a small dog, very defined in muscles and a short coat which doesn't shed much luckily. He is a solid tan colour and runs in leaps and bounds.  He loves running with big dogs playing dog tag, or whatever they call that game.  He likes to chase the chickens but respects the fact that those girls are not easily chased and have sharp toenails  and beaks. I will have to take time someday to load some photos into the bucket and post them.

I had an MRI done at the local hospital this week.   I picked up the CD yesterday and will take it to Toronto next Friday at the Hospital where the DBS surgery takes place for an initial visit with the surgeon.  Wow, that would be great if I could have better control over my off times.  I often meet people in town that say Hey John, you look great.  I try to explain to them, that yes I do feel good this hour, that is why I am now in town, driving around shopping.  But, my explanation goes on to them, you should of seen me an hour ago trying to tie up my shoe laces and in about another 15 minutes I will feel the trembles coming back, and like Cinderfella, I must get home before the clock strikes "your system is out of levodopa o'clock."  I think when I am "on" I look quite normal and I am in the yard or in town doing what has to be done and people likely think, "That guy should be at work!  Nothing wrong with him. Lazy he is..". But that time period of feeling good enough to do stuff is becoming a smaller percentage of my time every day.  But I tire of trying to explain that hidden part of my day to non parkies who have trouble understanding on and off periods of Levodopa. 

And that is my story of the day.  And my "poor me story" would fall upon deaf ears in the refugee camps of Europe, the flooded monsoon rained upon ravaged areas of Asia, the starving people in tent cities of Africa, the flooded victims sheltered in Houston, and  in Florida where Irma  approaches like the neighbourhood bully loaded down with water balloons and a bad attitude.  

Ah, have good weekends everyone.

jb 

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Hi, jb.  Marco sounds like a cute little thing.  It's so funny about the chickens and him!  We'll look forward to any photos you send.

I sure can relate to your explanation of feeling uncomfortable that when we have an "on" time, people assume we are fine, and some even think we don't have Parkinson any more!  It's just about impossible for them to understand when we try to explain.  I've finally ended up saying to them that what is going on is inside of me, so people can't see if much from the outside if my meds are working correctly.  And I usually end up, on many attempts to explain that don't get through to them, that there is no way to explain the disease in a way they can understand.  Sometimes I ask them just to believe me, even if they don't understand.  I often wonder why they don't just look Parkinson's up on line to find out more about it.  Do you ever wonder about that?

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And P.S., jb.  You've never been a "poor me" kind of person.  You were responding to my asking you how you are.  :-) It's always so helpful and appreciated when someone explains well in their reply to being asked.  Then we know better how to go along with you through your experience (and for those of us who pray, it helps us know how to pray for you).

And we'll be waiting to hear after you go to the hospital next Friday what you find out what's helpful and educational about the process and just generally how things go (if you care to share that, of course).

Take care!  :-)

Linda

 

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Hi all!

Texas Tom, love the dogs! We had a dog which was pretty smart. She trained us pretty good. She passed away and right now we are fostering our son and DIL two cats.

 

Hope everyone is doing well and staying out of the hurricane's path.

Edited by MarciaJ
leaned too much on the enter key.

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Good afternoon to all.

jb, I agree with Linda. You do not spend much time on the pity pot. Your positivity has brought joy to me and to most of us innumerable times. I'm grateful that I can share my experiences here where we at least speak the same language. Outside of Parkyland, most do not understand.

I purchased an excellent comic book recently by an Alaskan newspaper cartoonist who received the same revolting diagnosis as the rest of us. Like you, he has a way of making me laugh and cry at the same time. He even discusses his experience with DBS.

https://smile.amazon.com/gp/product/0271071028/ref=oh_aui_detailpage_o06_s00?ie=UTF8&psc=1

It is well worth a read. Now when I get a new caregiver or want to share my experience with friends or family, I hand them the book. It saves me a ton of energy.

By the middle of next week, I will know more about when will have the correct tubing inserted for my Duopa. I've been through the wringer with tubes in recent months. Even for all that, I prefer Duopa to oral carb/levo.

Next on my emotional agenda is my daughter coming from Texas to Seattle. Her dad is dying; the doctors want to discuss hospice with her. I will probably not see her during her ten-day visit because she does not like mixing the two sides of her family and would rather have teeth extracted without anesthetic than talk about feelings. I am always ready to support her when she asks. I still have both my parents. Her pain must be unbearable as she and I also lost her brother in February. She insists there is no afterlife and refuses to believe in God. I pray for her every day. Without faith, I would be up a well-known creek without a paddle.

Blessings to all!

Dianne

 

 

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Happy Friday to all!  Jb- you won't be down for long...it's not your style! We are here to pick you up!  

 

Be well!

 

LAD

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Dianne, the middle of the week is very close now...

I truly am so sorry about the issues regarding your daughter. You handle it well, but I can only imagine how it must hurt.

I'm stopping to pray for you right now, asking the Lord to continue to give you strength and wisdom in dealing with the situation with your daughter, and that you feel His love and presence in a special way--not just for this situation, but also in your everyday life with the challenges you have.

Take care, and know that you are very special.

Linda

 

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Dianne- my prayers are also with you and your family. I tell my boys all the time that if I did not have my faith foundation, I would not have made it through this far. 

Lad

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On 9/8/2017 at 3:32 PM, Beau's Mom said:

Next on my emotional agenda is my daughter coming from Texas to Seattle. Her dad is dying; the doctors want to discuss hospice with her.

 

 

 

Dianne -  Is this the man who sent you to the Nursing Home when he couldn't deal with your PD?

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Good Monday Morning.

Thanks for all the emotional support that you Ladies deal out to me.  You are all very kind to me as I lay out my doubts for the world to see.   As positive and forward thinkers, you watch out for those that need a kind word and you are quick with advice and encouragement.

 I realize the quandry that I present to people.  I know that the general population where I live want me to say that I am feeling good when they enquire as to my status. Nobody really wants to hear the downside.  I understand that.  But if people believe my answer that I am doing fine, that makes my reply misleading and dishonest.  So I think that I will stay positive in my thoughts and attitude, honest in my answers to those who ask how I am and reconcile myself to how I am and what I can do.  I must say though that when I answer with "I am going to Toronto to have electrodes implanted into my brain, it gets their attention.

LAD,  it is good that you have three sons, a husband and parents to care for. You don't have time for downtime.  Actually, all of you watch out for others and never do you complain for yourselves. That is what makes you all so sweet!

Well, it looks like Irma is running out of gas.  What a storm! What about Houston?  They were front and centre on all our news channels, then wham, onto the next calamity which was Irma.  Even the 16th anniversary of 9/11 where 3 thousand people lost their lives, gets tucked into the news a little deeper. 

Dianne, I hope that your Daughter will come visit you. Maybe it will be memories of Casey that could draw her closer to you. I hope that the opportunity presents itself in the next 10 days for some reconciliation.  I hope that I am not being Nosey, ok, I am. I just think that you both would be happier if you could be closer in your thoughts.

Well, I better get at the day.  Where do the dust bunnys under the furniture come from? I hope that the Canadians stranded in the Caribbean islands  stop  crying for the Canadian government to send airplanes to bring them back. The risk was there when you went, suck it up, help the locals, the airplanes will start again soon.

Have good days everyone..

jb

Edited by jb49
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Quick Hello and Good Morning to all.   Mrs. T got up early to join me at my MDS meeting, as she feels my summary reports are too poly Anna, as I never complain. Funny one was holding the DBS reader when my good doc did the adjustment. Tremor went to no tremor while holding it. Both my Doc and Mrs T caught that, I didn't even think twice about it. Also increased my Aricept to see if that helps with cognitive issues, never a dull moment.

My wife asked if I had place the flag outside the house this morning. For the life of me couldn't figure the reason, until she reminded me it was September 11th. I was thinking it was still August.

Leih is tearing around, thankfully with her toy rope. For a moment I thought she had my cpap hose! So far, so good. Settling in nicely.

One day a time, and I'm enjoying my morning espresso.

 

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13 hours ago, Beau's Mom said:

No, Niracleseeker. My daughter's father was my first husband. We've been divorced since 1980.

I see.  Thanks for the clarification.  This must be very hard for you all. 

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Our boys are opening up!!   :-)  Seriously It's so very good to read your posts, Tex and jb.  Really, really, and really.  Love hearing about how things are going and what thoughts and feelings are inside you, and the humor and strength you both show through it all.  You're manly men, with depth, and consideration for others.  (Yes, you are.) 

Tex, am so glad to hear Mrs. Tex was with you at your MDS visit, and also that the adjustment was successful in helping lessen your tremor.   And yes--"One day at a time, and enjoying espresso."

Mrs. Tex, how is your shoulder doing?

jb, you have a lot of company here as to your second paragraph above.  And love the last sentence of that pp. :-)

Patriots' Day.  I had to look it up.   For the U.S.:  https://www.timeanddate.com/holidays/us/patriots-day    It is very similar to the Canadian civil holiday, jb.  And jb, Simcoe was mentioned.  I'll try to find the site so you can read about who he was.  http://www.canadahistory.com/sections/eras/british america/Simcoe.html

I forgot that Patriots' Day was also a remembrance of 9/11.  A friend of mine lives on the other side of the mountain where the plane crashed on 9/11, and she said that she and her neighbors heard the crash but had no idea it was a plane. 

And I just learned that Patriots' Day is also in remembrance of the victims of the Boston Marathon bombers..

Edited by Linda Garren

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Hope all is well! I'm at a conference with my hubby so I'm in my own during the day to explore. The hotel is huge and I've gotten lost trying to find our room twice but I'm getting my steps in every day! I'm learning everyone gets lost so it's not just me! Lol

 

happy Wednesday!

 

LAD

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I had a rather frustrating meeting with my gastroenterologist today. I see that I will have to downgrade my expectations to preferences as far as doctors being willing to listen to my reality when it contradicts their opinions.

On the way home, my caregiver and I stopped at Sally Beauty Supply so I can temporarily dye my hair purple. It will be a little restorative fun. If I don't like the results, I will wash my hair repeatedly while singing I'm Gonna Wash That Man Right Out of my Hair!

Dianne

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Hmm, that is an idea.... we should all dye our hair purple! Would make for an interesting conversation.

Mrs. Tex is doing fine, sling is odd and ready to start physical therapy. She really needs to get out and volunteer as she is spending too much time watching me!

JB, I hear you. 90% of the folks don't want to hear the details, the other 10% do but I try to use caution to not overwhelm them. So it is either "I'm fine" or "doing as best as I can". My wife is the one who gets a little too stressed out.

We're at an impasse as I have decided it is time to sell off a lot of things, and pay off debts. I abhor being in debt, and she is always "just get another credit card and worry about it later". So she wants to go on a cruise with friends in January, but I want to see our credit card debt down to zero by the next year. Thankfully my kids understand the evil of debt, my duagther even commented she skipped a trip with friends as she didn't have cash to pay for it.   Medical bills and "emergency" things have kept the debt wheel rolling, so I'm like if we sell everything off, it goes to paying off the debt!  Oh, interest for debt last year was $8400.  I would love an extra $700 a month, but she is worried we will never get a chance to go on a vacation. That would pay for one heck of a nice vacation!

Meanwhile friends down on the Texas coast are busy rebuilding their hotel. Aviation themed rooms, which was a blast. They pretty much have to gut everything down to the studs and start over from there. Out of the twenty units, they have six usable - but restricted those to rent only to families who lost homes but have jobs there. There are so many "looky loos" they would spend an hour driving 10 miles, pretty frustrating. So we will stay away until next Spring. Port Aransas, TX if you look at the map.  Need to fire up the CNC wood machine to make them a few things they would appreciate... reminds me I still need to make up some leash hangers for the Golden Retriever folks.

Our Yukon Retriever (the husky/golden mix) is at the Vets today. Poor girl has eaten in a couple of days, we thought the puppy had been sick, but wrong dog. She had eaten/regurgitated a t-shirt! She has a history of eating things like underwear and socks, but oddly enough passing them. No I do not recycle those articles of clothing. Out vet is arranging for ultrasound as the x-ray looked good, but she is out kid. Yes, our dog's tend to get spoiled, but when it comes to medical they get great care.

 

 

 

 

 

 

 

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Things got changed on here and I can't seem to find where to check for PM. Maybe I haven't looked closely enough.

Anyway not much new stuff here. Except I'm getting tingling toes and legs. I think I need to move more and sit less. 

We won't be camping for awhile. Sold the RV. Just too large. So large that you had to tow a car or you couldn't get around. I guess the kids will have to come visit us. 

And so as the sun sets in the west I make an observation, there is no such thing as having too many friends. Here's to health or as much as we can get. 

m

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HI everyone, 

Nice to hear from you Marcia.  You won't miss filling up a big travel home with gas at least. 

Well Dianne, how did the purple colouring go.?

Hi Ell, LAD, EM, Mrcl. Skr... hope everyone had great weekends.

Linda, how are things on the coast.

Tom, you are right. Credit cards can save the day, but they always need to be repaid. And the interest charges are very high.  

It has been a busy week.  Tuesday we got run in to from behind while we sat stopped in our car at traffic lights.  A young kid, very apologetic bumped into us from behind.  I had to deal with getting quotations for repairing my car and  settling that.

Early Friday morning we went to the train station and rode the rails to Toronto, followed by a quick 3 subway stops, a transfer above ground to a streetcar and were soon at Toronto Western Hospital for my first appointment with the dbs clinic.  It was quite a thorough 2 hr. appointment starting with a younger neurologist who put me through all the little motor control tests that everybody here likely has done already.  That was followed by another interview with a more senior doctor who outlined the process a bit further.  It will take a few appointments  and assessments before they decide whether I  am a good candidate for surgery.  I hope it all works out.  

It was incredibly warm here  this  weekend for the middle of September.  I hope it stays this way for awhile.

You are right Marcia, one can't have too many friends.

Good days to all 

 jb

 

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jb, the hair coloring went well. It's temporary and will wash out in a few days. I have enough left for a second application before I decide if I want a more permanent change.

Fall arrived in Seattle today. It seems unlikely that there will be any more days above 70 degrees this year. At least the rain will help the forest fire situation. I won't miss the smoke.

I trust you will get the answers that are best for you from the DBS team in Toronto. They seem very thorough from your description.

Is your car still out of commission? I hope you won't have to ride one of the horses into town to get groceries.

Dianne

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5 hours ago, jb49 said:

HI everyone, 

Nice to hear from you Marcia.  You won't miss filling up a big travel home with gas at least. 

Well Dianne, how did the purple colouring go.?

Hi Ell, LAD, EM, Mrcl. Skr... hope everyone had great weekends.

Linda, how are things on the coast.

Tom, you are right. Credit cards can save the day, but they always need to be repaid. And the interest charges are very high.  

It has been a busy week.  Tuesday we got run in to from behind while we sat stopped in our car at traffic lights.  A young kid, very apologetic bumped into us from behind.  I had to deal with getting quotations for repairing my car and  settling that.

Early Friday morning we went to the train station and rode the rails to Toronto, followed by a quick 3 subway stops, a transfer above ground to a streetcar and were soon at Toronto Western Hospital for my first appointment with the dbs clinic.  It was quite a thorough 2 hr. appointment starting with a younger neurologist who put me through all the little motor control tests that everybody here likely has done already.  That was followed by another interview with a more senior doctor who outlined the process a bit further.  It will take a few appointments  and assessments before they decide whether I  am a good candidate for surgery.  I hope it all works out.  

It was incredibly warm here  this  weekend for the middle of September.  I hope it stays this way for awhile.

You are right Marcia, one can't have too many friends.

Good days to all 

 jb

 

 I saw my son at college this weekend! We brought him his passport for our upcoming trip. I pray he gets to where he is to meet us to fly together. The whole terrorist bombing in London has made me nervous but my son said "we are going...if we don't go...they win..." 

 

Happy monday to all!!!

 

LAD

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