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jb49

Good morning!!

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jb,  I will add my wishes for a strong, steady, and wholly successful recovery. Thank you for sharing even the difficult parts with us.    

The only advice I will offer is that offered to us on each of your posts: Don't be hard on yourself, try your best and stay strong.

Dianne    

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Thanks for all the good wishes everyone.  I have been getting lots of advice  from a man in our parky group that lives not that far away.  He tells me too that I need to slow down and recover.  I should know that too.  Sorry for the panic attack.   His name  is Rob and he had the same opration as I did, at the same hospital at the same clinic.  I did get my stitches (wire ) out yesterday in town.  I have lots of help here at my house with neighbours cutting my grass. I still have trouble with my sore shoulders and that is an old problem.  And  .today was a better day.  I slept better last nite and that clears up my head as well.  I still have a long wait until it is programmed and turned on.  I look forward to that day.  In the meantime , I need to get the pill routine down to a better scedule which seems to be a bit less than I was taking before.  Thanks everyone for your help. 

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JB - that is well-packed dirt. Primitive Camping, with a composting toilet. No running water.   It was at 7,000 ft so thin air that I wasn't adjusted to!

After DBS surgery it took me three MONTHS for the brain swelling to go down. Take it easy, I returned to strenuous workouts too soon after surgery, basically, I was bored and missed my workout group.

I have myDBS up in my chest. I had that location as docs are still scanning me every six months. It was odd how much my back hurt after surgery. The battery is the front, but it is a 'reflected pain' where the pain has another location. Odd, but does happen to some of us.  

Linda -- Every time I go into my doctor's office they all say "You look fantastic!"  I have confounded my doc's. I like that!

I just keep in good spirits and enjoy every day! My wife thinks I've gone off my rocker buying the van, but the idea is a simple place to sleep. I no longer drive at night or when fatigued. So pull over and nap, or sleep until daybreak. Gives me more options to remain active.

 

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15 hours ago, jb49 said:

Thanks for all the good wishes everyone.  I have been getting lots of advice  from a man in our parky group that lives not that far away.  He tells me too that I need to slow down and recover.  I should know that too.  Sorry for the panic attack.   His name  is Rob and he had the same opration as I did, at the same hospital at the same clinic.  I did get my stitches (wire ) out yesterday in town.  I have lots of help here at my house with neighbours cutting my grass. I still have trouble with my sore shoulders and that is an old problem.  And  .today was a better day.  I slept better last nite and that clears up my head as well.  I still have a long wait until it is programmed and turned on.  I look forward to that day.  In the meantime , I need to get the pill routine down to a better scedule which seems to be a bit less than I was taking before.  Thanks everyone for your help. 

After my surgery it was odd, first time I had experience nausea from my Sinemet!   I was at two Sinemet and a Comtan every three hours and needed that medication, but could feel my neck muscles tighten like crazy... ended up cutting down to one Sinemet every three hours.  Brain swelling plays tricks on your medication levels for a while, often a "honeymoon" effect when you feel like Superman

Thalamotomy and Pallidotomy where two types of brain surgeries that were done years ago. Pretty much replaced by DBS these days. Just inserting the right brain lead brought instant relief to my left side tremor during surgery.   I had dual STN placement, many as my dystonia was the biggest issue I was living with. 

I have very little battery voltage on my right brain, zero tremors on the left side. The right side is not as good, some tremor but worthwhile. The oddest part was during programming how much my voice changed. There was a sweet spot of a good deep voice, but too much voltage and my facial muscles twisted into a knot. Strange things.

I need to check in more often, but at times just get too busy with life. Still working and keeping way too active!

 

 

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On 5/17/2018 at 4:38 PM, hiker said:

Love it! Is that from Oklahoma?

 

Yes!!

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On 5/24/2018 at 9:47 AM, TexasTom said:

After my surgery it was odd, first time I had experience nausea from my Sinemet!   I was at two Sinemet and a Comtan every three hours and needed that medication, but could feel my neck muscles tighten like crazy... ended up cutting down to one Sinemet every three hours.  Brain swelling plays tricks on your medication levels for a while, often a "honeymoon" effect when you feel like Superman

Thalamotomy and Pallidotomy where two types of brain surgeries that were done years ago. Pretty much replaced by DBS these days. Just inserting the right brain lead brought instant relief to my left side tremor during surgery.   I had dual STN placement, many as my dystonia was the biggest issue I was living with. 

I have very little battery voltage on my right brain, zero tremors on the left side. The right side is not as good, some tremor but worthwhile. The oddest part was during programming how much my voice changed. There was a sweet spot of a good deep voice, but too much voltage and my facial muscles twisted into a knot. Strange things.

I need to check in more often, but at times just get too busy with life. Still working and keeping way too active!

 

 

Thanks for all of this Tom, happy camping to you.  jb

 

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Tom, love your van! We love to camp.

We are to get a heavy rainstorm this afternoon which is ok as we need the rain.

I’ve been stiff , need to exercise more.

I almost forgot my password. I should sign in more.

This note is really dull. This is why I haven’t signed in for a while. But sometimes dull is ok. Try reading it when you need to sleep . Puts you to sleep pretty fast.

Hugs .

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Dear Marcia,

I understand your post because our lives sound so similar. I have no idea what my password is. I just stay signed in. If I get logged out, I create a new password and add it to a long list of old and new passwords I keep in a book on the table next to my zero-gravity lift recliner. I've been stiff from dystonia in my right iliac crest and hip for three years now. My physical therapist makes house calls twice a week. Riding in a car creates more pain, so I spend more time at home. I finished a book I really liked last night that I started three months ago. It's life in the slow lane; I'm learning to be happy with it. Dull works for me! Post when you can. I love hearing from you.

Dianne    

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Marcia:   LOL!!!!  I always love your dry humor!!  :-)   We all do.

Dianne:  You continue to be a special role model to us all.  I admire your approach to life, especially in light of the very, very difficult things you have had to work through over the years. 

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Thank goodness there’s the manage passwords in google.... little trick I learned....it’s in your security settings... most are saved and you can look them up

But you have to remember your google password 😊

LAD

Edited by LAD

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On 5/23/2018 at 11:48 PM, jb49 said:

Thanks for all the good wishes everyone.  I have been getting lots of advice  from a man in our parky group that lives not that far away.  He tells me too that I need to slow down and recover.  I should know that too.  Sorry for the panic attack.   His name  is Rob and he had the same opration as I did, at the same hospital at the same clinic.  I did get my stitches (wire ) out yesterday in town.  I have lots of help here at my house with neighbours cutting my grass. I still have trouble with my sore shoulders and that is an old problem.  And  .today was a better day.  I slept better last nite and that clears up my head as well.  I still have a long wait until it is programmed and turned on.  I look forward to that day.  In the meantime , I need to get the pill routine down to a better scedule which seems to be a bit less than I was taking before.  Thanks everyone for your help. 

Dear JB,

I am glad to read you are doing ok, although I sense some impatience on your part to finally get started with programming.  It is indeed a different procedure from what is generally reported. But it is definitely a better idea to wait until all side-effects from surgery have subsided before starting sampling the various options available for stimulation.  You reap the benefits of years of experience with previous patients.  If they try certain settings while the effects of surgery are still there, they may draw false conclusions from these initial attempts.  That’s how I analyze this difference in procedure. In my case, stimulation was started within two weeks after surgery.

I think the support of someone who has been operated by the same team and went through the same procedure is indeed the best assistance you may get.

Do not hesitate to ask questions to the doctors who will in charge of programming your stimulator.  Have faith, everything will be allright.

Take good care of yourself and keep us posted !

Mireille

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I had GPi bilateral DBS, but no idea why I wrote STN.  It was one of those foggy memory days when I posted earlier.

Post surgery brain swelling is an issue for some of us.

As Mimilaster commented they want everything healed before programming.  I was meeting with my MDS do dial in settings every two weeks, then every month. It is always moving target as the settings may need to be tweaked. I'm doing very well, but when doing my intense workouts dystonia seems to reappear. My toes like doing a "Vulcan salute" of going all sort of different directions. It isn't a muscle cramp, but full on dystonia. I just hope around a little bit waiting for it to subside.

 

 

 

 

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.Good morning.  I have not been online very much of late,  I think I have grown lazy.  Actually no, I think not, more like it has been tricky typing since I had that operation in Toronto about 4 weeks ago now.  That bilateral DBS procedure.  I had a geat 3 days of honeymoon following that.  Crazy, I almost forgot anything was wrong with me except for the picky stainless steel staples that tried to pull my bushy eyebrows up to my receding hairline.  My shoulders are not operating quite right yet but the kinks are slowly getting worked out.  Sore rotator cuffs I guess they are but I can get them moving when they do get locked up now. I have had them before. I am pretty much back to normal now, presurgery, which means my full run of pills and sometimes they catch and I feel pretty good, or they don't catch and I feel like I am encased in velcro restraints on every muscle.  Or, if I were a surfer, the nice wave to ride does not arrive and I am left paddling circles on the big ocean of Life with Parkinsons before setting off for the shore with my paddling hands pulling me through the water, against the tide, the  wind and soon I am back.   Strange how the pills sometimes lift me to where I need to be and then other times I may as well of eaten those little fruity colored marshmallows.  I am, "patiently awaiting the programing" which will happen the first part of July. 

I count myself lucky that I have the attention of terrific doctors  of great skill,  and great friends,  I hope you are all doing good , and the people that surround me at home  that help me do the things that I cannot physically do at this stage of my life.  I look forward, patiently, to getting programmed and seeing how I feel.  

I have had my stitches all out, and my chest is all healed up where the stimulator and battery ride with me.  I have not had to take hardly any pain medication. And yesterday I went for a haircut and my dog doesn't growl at me anymore. 

So now I will post this and patiently wait for July.  

Edited by jb49
cause it needed editing?
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Hang in there in...try to stretch those muscles and keep moving my friend! 

 

LAD

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20 hours ago, jb49 said:

 

.Good morning.  I have not been online very much of late,  I think I have grown lazy.  Actually no, I think not, more like it has been tricky typing since I had that operation in Toronto about 4 weeks ago now. Four weeks already?  Wow.  That time flew (except for you, more than likely).  :-)  That bilateral DBS procedure.  I had a geat 3 days of honeymoon following that.  Crazy, I almost forgot anything was wrong with me except for the picky stainless steel staples that tried to pull my bushy eyebrows up to my receding hairline.  My shoulders are not operating quite right yet but the kinks are slowly getting worked out.  Wonderful.  Sore rotator cuffs I guess they are but I can get them moving when they do get locked up now. I have had them before. I am pretty much back to normal now, presurgery, which means my full run of pills and sometimes they catch and I feel pretty good, or they don't catch and I feel like I am encased in velcro restraints on every muscle.  Or, if I were a surfer, the nice wave to ride does not arrive and I am left paddling circles on the big ocean of Life with Parkinsons before setting off for the shore with my paddling hands pulling me through the water, against the tide, the  wind and soon I am back.   Strange how the pills sometimes lift me to where I need to be and then other times I may as well of eaten those little fruity colored marshmallows. Love your descriptions.  You're back!!  :-)  Our jb is back!!  I wonder why the pills sometimes don't work?  Are they the PD pills?   I am, "patiently awaiting the programing" which will happen the first part of July.  That's very close now!!

I count myself lucky that I have the attention of terrific doctors  of great skill,  and great friends,  I hope you are all doing good , and the people that surround me at home  that help me do the things that I cannot physically do at this stage of my life.  I look forward, patiently, to getting programmed and seeing how I feel.  Everyone is watching over you so well.  They really care for you and about you.

I have had my stitches all out, and my chest is all healed up where the stimulator and battery ride with me.  That is real progress!!  I have not had to take hardly any pain medication. Incredible.  I had dental surgery two weeks ago, and after the pain shots subsided afterwards, I had to take pain meds.  It took me about a week to get over that procedure.  I surely hadn't expected that.  And yesterday I went for a haircut and my dog doesn't growl at me anymore. That is so funny!  I LOL'd!!

So now I will post this and patiently wait for July.   

 

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I think perhaps we are all holding our breath waiting to hear from jb. 

Meanwhile, life goes on. I saw my MDS today. I've been having myoclonic jerks (small surges of electricity) that make me want to jump up from the seat of my walker and run as if I'm in danger. I had described them to my MDS two months ago as an exaggerated startle reflex, which he didn't address at all. Thanks to Dr. Okun, I used the correct terminology and a change was made in the rate of my Duopa. I'm so grateful for the things I learn on this forum.

Dianne 

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Sorry Dianne, Take a   deep fresh breath.   I'm right here!  I am doing ok.  I patiently await July and the program that will fire up my new dbs hidden in my chest two finger widths below my right clavicle bone. Hello Linda, She Ra and LADy and Em and Marcia and everyone else.  Hi Tom and Bard and any other guys as well. 

My shoulders are good and are  much improved.  Man, it has been hard watching others cut my grass and such things. I did manage to get a garden planted with some help.

Soon I will be back to doing old things again I hope.  Or else do a shift to a new set of things to do.  

My hair is pretty scary looking still.   I did get one haircut last week.  I got used to wearing a little toque, or a bandanna to keep things clean around the cuts and stitches.  I still wear it to cover up the wiring bumps,  where the connecting wires tunnelled under the skin from my chest, up my neck around my ear and up to my head are hidden, It is amazing how they hid all the wires with a minimum amount of cutting flesh.   My security bandanna.  Keeps my head warm too.  The hair gets longer, things will look better with the next cut. 

I am not so fast typing, I try not to spend too much time on the internet.  Often I read stuff in the morning and plan to answer things at night.  At night I fall asleep before doing this.  Hence the blanks blocked out.  Sorry you were holding your breath Dianne.  Is your pump working better now?  My pill routine is back to about what I was doing before the surgery.  Hit and miss with whether or not they catch.  I hope my dbs does away with those miserable off times. 

Well, that is about all for now,  I hope that everyone is doing as good as possible.  Meanwhile I wait as patiently as a small acorn on the forest floor waiting to become an oak tree, for July and the startup of dbs. 

Be good every one, take care!

jb  

 

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It's great to hear from you, jb. I understand the disconnect between what I plan to do in the morning and being too tired to do it later in the day. It happens to me nearly every day.

My daughter and son-in-law are arriving on Sunday for a 10-day visit. Lillian was just diagnosed with a rare progressive autoimmune disease that has no cure; Primary Biliary Cholangitis. There is medication she can take to delay progression. She had an allergic reaction after two days. We are hoping that a different generic won't cause an allergic response. It is beginning to sound eerily familiar and deja-vu-ish. 

 

Stay happy, everyone.

Dianne  

 

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On 6/15/2018 at 3:59 PM, Beau's Mom said:

It's great to hear from you, jb. I understand the disconnect between what I plan to do in the morning and being too tired to do it later in the day. It happens to me nearly every day.

My daughter and son-in-law are arriving on Sunday for a 10-day visit. Lillian was just diagnosed with a rare progressive autoimmune disease that has no cure; Primary Biliary Cholangitis. There is medication she can take to delay progression. She had an allergic reaction after two days. We are hoping that a different generic won't cause an allergic response. It is beginning to sound eerily familiar and deja-vu-ish. 

 

Stay happy, everyone.

Dianne  

 

Prayers to your family! Stay strong & stay hopeful!!

 

Lori

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