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jb49

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The weather outside sounds frightful, jb. I'm so grateful for the milder weather here in Western Washington. 

I hope everyone had a relaxing Sunday. 

Dianne  

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1 hour ago, Peace said:

LAD-I can't watch your sons performance.  It says my browser is unsupported:(.

Which performance? My YouTube links are private right now. I will change them back in a few weeks. 

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41482569591_3841e2e746_b.jpg

I went to a PD symposium and got to meet Brian Grant..it was a game changer when I read his story after my DX ...he was a great speaker!  

 

Yes  I am little but he is a big dude!

 

LAD

Edited by LAD
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LAD,  Brian Gant spoke at the WPC 2016 in Portland OR. I was there; were you?  I probably won't make it to Kyoto next year.

Dianne 

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10 hours ago, Beau's Mom said:

LAD,  Brian Gant spoke at the WPC 2016 in Portland OR. I was there; were you?  I probably won't make it to Kyoto next year.

Dianne 

No it was in Baltimore. I know he's from the Portland area. I would love to go to one of his retreats.

 

LAD

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21 hours ago, LAD said:

Which performance? My YouTube links are private right now. I will change them back in a few weeks. 

The Bitsy Bontana .  I thought it was a video but maybe it's just a picture???  At home I use internet explorer and it said my browser wasn't supported.  I just tried it here at work with firefox it opened as a picture but no video. 

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4 hours ago, Peace said:

The Bitsy Bontana .  I thought it was a video but maybe it's just a picture???  At home I use internet explorer and it said my browser wasn't supported.  I just tried it here at work with firefox it opened as a picture but no video. 

Yes it was a picture.  He just did a video submission so once that is over I'll post it. 

LAD

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Hi JB,

It would be nice if you did not have to wait for DBS as long as initially scheduled.  Once we have made the decision to have surgery, we don’t want to wait for ages !  We would prefer to have it done as quickly as possible.  At least that how I felt. 

One thing you have to be ready for is the « micro lesion effect » created by the insertion of the electrode into the brain.  Right after surgery, you feel great.  Coming out of the surgery theater, I remember feeling ready to go out and eat at a restaurant (surgery lasted 11 hours so I was kind of hungry).  BUT this overwhelming good feeling is only temporary. This can prove very disturbing and disappointing as you’re made to see how well you can feel,  only to fall back to a less favorable state. This great feeling can last a day to a full week.   [ I'm not too sure about the average duration, you would need to ask the DBS team ] So don’t be overexcited right after surgery you may feel a lot better than you will in a day or two. BUT the good news is : there is a positive correlation between micro lesion effects  and results /improvement degree.

JB, I  enjoy reading your posts detailing your "activities".  THe maple syrup season brings back fond memories of a year spent in Ottawa, some 40 years ago,  the "sugar shacks". That was so much fun!

Take good care,

Mireille

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On 14/04/2018 at 5:33 AM, em45 said:

Thanks again jb for lifting my spirits..am I right in saying 'Sweet Caroline' ?

Take Care Friends..

Em

sorry I was thinking of .Neil Diamond .

Em, I felt like giving  the James Taylor Carolina song a listen today.  I hope I can get it to link up here for others to hear it as well.  Tis no wonder that  our resident Lady Superhero, Shera,  who works by day in Atlanta but resides in her cabin in South Carolina and  whoaa?  Oh, I just checked that out on a map, and that looks like a lot of driving, maybe I got that wrong. Anyways, this video is very nice to watch and no wonder People enjoy North and South Carolina. Now, if I can make the link work.

.https://www.youtube.com/watch?v=4z8lS--AyBU

 

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27 minutes ago, jb49 said:

Em, I felt like giving  the James Taylor Carolina song a listen today.  I hope I can get it to link up here for others to hear it as well.  Tis no wonder that  our resident Lady Superhero, Shera,  who works by day in Atlanta but resides in her cabin in South Carolina and  whoaa?  Oh, I just checked that out on a map, and that looks like a lot of driving, maybe I got that wrong. Anyways, this video is very nice to watch and no wonder People enjoy North and South Carolina. Now, if I can make the link work.

.https://www.youtube.com/watch?v=4z8lS--AyBU

 

Your'e  right jb link works...lovely video..Em

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Good Morning everyone.

Hello Mireille,  well, as it turns out, things have been accelerated. Get your running shoes on and hang onto your hat I say to myself.  I asked my Neurologist last year if he would pass me along to the Toronto Western Hospital for a DBS procedure. After a wait of only about a couple months, I was contacted by Movement Disorder Clinic and was given a date to come to Toronto for an assesment to see if I fit the "Candidate Profile".  That first meeting took place in September of last year, 2017.  It was a 2 hour test and interview at the clinic by a neurology Resident Doctor. I was not available for a scheduled followup appointment in the fall, and with the Christmas break approaching I was put over into the new year.

The next meeting was a 2 day Neurological testing session that took place in January of this year.  It also had a testing of my motor skills with no drugs in my system.  We stayed at a nearby hotel, I took my regular levodopa at about 7 in the evening and arrived to be tested at about 9 the next morning.  After doing the motor tests that you all have done , I was given my regular tablets of levodopa.  We waited for them to absorb into my bloodstream to gush out my arteries and back through my veins as my heart pushed the blocks of Dopa into my waiting brain where they were assembled  and waited like a bunch of couriers, awaiting thier turn to deliver a message to my muscles.  I repeated the motor tests, scored much higher, and that was a good thing.  DBS is more effective on candidates who respond well to Levodopa. 

Later that day, after the extensive brain power testing to establish my cognative ability, or lack thereof,  the assessment team told me that I would be discussed at a meeting but I was 95% into the que for DBS.  At that time, August was suggested as the date.  They would be in touch.  And they were with a phone call asking me to attend a  meeting with the surgical team in two days to replace an appointment time that another person had to cancel,.  That was about March 3.  At that time it was thought that the summer would impact the schedule and I should look towards late September, perhaps even October cautioned a resident as I was leaving.

Two weeks ago they contacted me with an appointment for an MRI.  I wondered why so early and when I enquired about that a week ago,  I was told that the surgeon had been alloted more surgery hours, a schedule had been redrawn and could I be available for the DBS on May 8th.  I just learned this at the end of last week.  I have to go to my family doctor tomorrow for pre admission documentation, to Toronto on Friday for pre op teaching and blood testing, and posssibly an mri on Saturday. 

It seems a bit sudden now, but it will eliminate a summertime of worrying about it.  I have lots of support here for rides to Toronto and help at the farm.  The surgeon and his team inspire me with confidence and there is a wonderful Lady in the DBS department at the hospital who has control of the calendar to co ordinate all things. 

I am getting a Boston Scientific unit with the new style of directional leads which will hopefully allow the programers even tighter control of the stimulations.  I am also taking part in a research trial as  to the effectiveness of the new directional  leads.  I am hoping that I get good results, as in a smoothing out of my off and on  cycle of drugs. I hope that I can remain still, and calm for the operation. It will be in 2 parts with the leads being installed into the "gray matter" on the 8th of May and the control implanted into my waiting chest 2 days later  on the 10th.  At that time I guess they will also be pushing the wires under the skin of my neck and between my scalp and skull right up to my new attenaes, still freshly rooted  into my brain. That means 2 operations but it will eliminate the 12 hour marathon.  

I am a little worried about it all. I would be crazy if I wasn't worried some.  But I also am happy that this should improve my life, help the doctors learn new skills and methods and hopefully I won't be as drug dependent.  Worried a bit yes, but I am approaching this with a positive  outlook for treatment of what is proving to be a nasty disease.

I gotta get busy here, things to do.  Like shovel snow off my steps.! What rotten weather we have had the last 3 days.

Be safe everyone, 

jb     

Edited by jb49
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Hi jb-May 8th huh?  That is exciting!  So great.  I'm really happy for you.   I know it's a little worrisome but that's normal but hang in there cause this is a game changer.   I'll remember to carry my "jb penny" that week and think of you often.  We're all here for you! 

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Hi, jb.  I'm so very happy to hear things are going along more quickly for you.  I think I can relate a little to how you feel.  I'm having a tumor removed from my brain in a few months.  (I want them to take out my brain and replace it with a fresh one but be able to download "me" from my first brain...)  :-)  LOL!  Mine is a meningioma (large and dense and hopefully still benign ) in the cerebellum area.  The surgeon is going to take off the bottom part of the tumor that has not yet grown into the brain.  I had no idea it had progressed to that point.  So my results are also an unknown and can also, as in DBS, possibly result in having some side effects from the surgery.  I think we need to place our situations in the Lord's hands and trust Him for whatever the outcome.  He'll be with us and with the surgeons, and may His will be done.  His ways are so much higher than we can understand, but they are for good, and He promises that when we see Him someday, we'll then understand.  And He will honor our trust in Him.

Will be thinking of you and praying.

Linda

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Linda-I did not realize you had this issue that you have been dealing with.  I will be praying for you and for a  positive outcome from the surgery. 

Take care.  God has both you and jb in his capable hands and is holding both of you close.

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Thank you, Peace.  I appreciate you so much for your support through the years, and I cherish prayers right now, as I'm sure we all do.  I just hadn't said anything because I haven't been able to participate in the Forum because of being totally overwhelmed with so much I'm behind on.  Right now I'm trying to gather the info I need to request an extension for my 2017 Income Taxes and pay an estimate.  I still have to finish my 2015 and 2016 taxes as well.  I was granted extensions for those previously.  I found out that we have THREE years from the due date to submit our tax forms as long as we pay an estimated amount of taxes due for the year by the deadline (today for this year).  This is a new life.  I was--WAS--always a Type A person.  This has been an overwhelming adjustment.  I remember others saying the same thing.  I know I'm not alone.  I feel for everyone going through things like this. 

What would we do without this wonderful, loving, supportive forum?!  :-)  Thank you so much for being such an important part of it.

 

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Hi Jb and Linda, I wish you both best of luck in your forthcoming important brain surgeries.May the good Lord see you through without complications.We will be waiting for the good news of quick recovery.And to those of us still contemplating on getting surgery help,may God give us the courage,and may cure be found for this terrible disease.Amen.

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Goodness gracious, jb! That is exciting news. I'm so happy for you. You won't have much time to worry with it coming up in less than a month. I'll be praying for you.

Linda, your news is distressing. We have our weekly prayer call on Wednesday. I will ask for prayers for best outcomes for both you and jb.

Dianne 

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Thank you so very much, Dianne.  Very much.  I'd especially appreciate prayer that a blood disorder I have that can cause clots does not interfere nor cause problems bleeding out, so to speak (Polycythemia Rubra Vera is the condition).  Thank you.

 I have been blessed to have a top, top, top, top Hopkins brain surgeon who has done thousands of surgeries on these kinds of tumors.  I still have a lot of questions to ask him, though, like how many had side effects (and what kind) post surgery.  Am so glad to know that the Lord is by my side, and anything negative that may happen is for a reason and in His hands.

Take care, and much love to you.

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Dear jb and Linda thinking of you both...I will light a candle guys.

Best wishes..Em

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Thank you, Em.  Some good Irish prayers sound good.  Right now I could use a strong cup of Irish coffee!  I did recently buy some peach schnapps, though. :-)  Once in awhile I'll take a few sips of that, watered down a little, as the fumes can themselves be overwhelming.  LOL!  99Peaches is the best.  99 proof.  (What does that mean, anyway?)  :mellow:

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Let me know if you make it to Ireland Linda,,,I; make a good Irish Coffee,,

Em

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That is very tempting, Em!  :wink:  I've never been abroad except to Canada (LOL!) and California (another LOL!) and Guadaloupe, which was beautiful but a lot of French people who made it very clear they did not care for Americans.

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Good morning everyone,

Linda, I wish al the best for you.  As you deserve it!

THANKS go out to you Linda and everyone else who follow our lives and care about the outcomes.  I am humbled by the concern shown for each other here on this forum.

All the best to all of you and I thank each of you.

jb

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