Parkinsons… Deep brain stimulation

[scubascuba3]

Keep us going with the updates and good luck, I'm particularly interested as my father has Parkinson's 

[cheeryble]

4 hours ago, cheeryble said:

Thank thank you kindly xylophone.

 

In fact, I underwent the procedure on Saturday@Sripat with a large medical team.

It was pronounced a success.

Within a day or two I started getting an arrhythmic heartbeat as I had been told, would be a possibility while the scarring  inside my heart healed. Happily today I checked with a small gadget I bought call Kardia mobile and it is back to “normal sinus rhythm “. I dare say there will be a bit of back and forth.

Today I went to the cardiologist and neurologist at the Ram.

I told the cardiologist you operation has been pronounced success, he was very pleased, and said it may will last for my life, and gave it a likelihood of 90%. Who knows? I’ll have to take the punches as they come., And just hope for the best.

I also updated the neurologist about the decision of Chulalongkorn Hospital to put me on apomorphine. I was interested if he knew if they used it at night as well as day as night time is such a trial, but Sheryl was right about the likely knowledge base of neurologists here in CM, and he plainly said he didn’t know anything about apomorphine.

My feet have become a little swollen, which I read on the chatGPT can be brought about by levodopa, but as this is a mainstay of my Parky’s meds I can’t even consider stopping it's use at the moment, but will try to give the feet some regular exercise. Albeit slow and very limited in duration for the time being

Chula nave given me an amended timetable of meds to try to ease the aches and effectively the paralysis of nighttime which I am about to start.

 

thanks for help and support!

Those who read through this thread may remember I was turned down for the DBS because Chula didn’t want me going off the anticoagulants during an DBS op and risking a stroke. But of course, now I have had the ablation done it would seem turn ignoramus like me. Maybe my risk of stroke is now reduced.

So you might ask where it why don’t I push for DBS again, especially as I’m not sure if they apomorphine pump is on at night as well as day, something I feel is very important.

there are several reasons:

1) I don’t want to be pushy with people recognized as THE experts in Thailand. There are many factors involved including my age.

2.) the weeks I wait until my appointment at Chula rwill tell me more about the success of the Ablation

3) although DBS is often a very successful procedure the apomorphine pump is relatively simple technology and would likely be much more reliable.…especially given my age. It works within minutes and could be a great way to go.

4) high cost of failure with DBS. Apomorphine very ezxpensive but spread over a much longer period.

5) I don’t have to rule out DBS 100% in advance, better to arrive as already scheduled and “play it by ear “

 

 

[cheeryble]

On 4/5/2023 at 6:21 PM, cheeryble said:

Those who read through this thread may remember I was turned down for the DBS because Chula didn’t want me going off the anticoagulants during an DBS op and risking a stroke. But of course, now I have had the ablation done it would seem turn ignoramus like me. Maybe my risk of stroke is now reduced.

So you might ask where it why don’t I push for DBS again, especially as I’m not sure if they apomorphine pump is on at night as well as day, something I feel is very important.

there are several reasons:

1) I don’t want to be pushy with people recognized as THE experts in Thailand. There are many factors involved including my age.

2.) the weeks I wait until my appointment at Chula rwill tell me more about the success of the Ablation

3) although DBS is often a very successful procedure the apomorphine pump is relatively simple technology and would likely be much more reliable.…especially given my age. It works within minutes and could be a great way to go.

4) high cost of failure with DBS. Apomorphine very ezxpensive but spread over a much longer period.

5) I don’t have to rule out DBS 100% in advance, better to arrive as already scheduled and “play it by ear “

So after the atrial ablation for which I wait to see if there"ll be an improvement, back to the original point of time coming here, which is to deal with my Parkinson’s.

after a long wait, I have now come to Bangkok to be "fitted" for an apomorphine pump and dosage.

I wondered how it could possibly take two weeks of appearing at the hospital every day from 830 to 4, and now I know.

So today was my first day and I have to say it was successful.

After blood and motor tests, they fitted the pump and set it up for a small dose to check for intolerable nausea. Happily, this didn’t happen, and they raised the dose a couple of times through the day. I then had my first day of going through the lunchtime hours without switching “off “. So this was successful too, and they will raise he dose incrementally.

just before leaving Chula this afternoon the apomorphine nurse pointed out my right foot. Since I first got Parkinson’s, my toes have been curled up on this foot, called hammertoe, and I have had a limp..

Well, guess what? On the first day with its modest dose there’s been a considerable improvement and the toes have relaxed to some extent. The nurse says I can expect further improvement.

so I think we can call that a very successful day, and happy it seems the docs made a good decision to use apomorphine rather than my first choice of deep brain stimulation.

The apomorphine nurse happened to mention when she learned that I had no insurance and paid myself that there are 5000 people undergoing this treatment in the UK. Naturally, this brought to mind the national health service, and the fact that (I believe) I am not a candidate for NHS treatment except for possibly if I go back on the NHS for 6 months.

I have no life plans to leave Thailand, long-term,  have dependents here, and I can afford to pay for treatment here for "X" years.

it has now crossed my mind, given that it looks like the apomorphine route is a good one, to wonder if I could raise funds for future supply of apomorphine……funds in the order of 40kbahtper month from some kind hearted individual in the same way I have "rescued" three dogs. I have of course already invested a considerable sum.

I believe there is a term for raising money this way, would someone know what it is, and have any knowledge on how to go about it. The alternative is does anyone know the rules or wrinkles for getting back on the NHS?

On 4/5/2023 at 6:21 PM, cheeryble said:

 

 

 

[scubascuba3]

1 hour ago, cheeryble said:

So after the atrial ablation for which I wait to see if there"ll be an improvement, back to the original point of time coming here, which is to deal with my Parkinson’s.

after a long wait, I have now come to Bangkok to be "fitted" for an apomorphine pump and dosage.

I wondered how it could possibly take two weeks of appearing at the hospital every day from 830 to 4, and now I know.

So today was my first day and I have to say it was successful.

After blood and motor tests, they fitted the pump and set it up for a small dose to check for intolerable nausea. Happily, this didn’t happen, and they raised the dose a couple of times through the day. I then had my first day of going through the lunchtime hours without switching “off “. So this was successful too, and they will raise he dose incrementally.

just before leaving Chula this afternoon the apomorphine nurse pointed out my right foot. Since I first got Parkinson’s, my toes have been curled up on this foot, called hammertoe, and I have had a limp..

Well, guess what? On the first day with its modest dose there’s been a considerable improvement and the toes have relaxed to some extent. The nurse says I can expect further improvement.

so I think we can call that a very successful day, and happy it seems the docs made a good decision to use apomorphine rather than my first choice of deep brain stimulation.

The apomorphine nurse happened to mention when she learned that I had no insurance and paid myself that there are 5000 people undergoing this treatment in the UK. Naturally, this brought to mind the national health service, and the fact that (I believe) I am not a candidate for NHS treatment except for possibly if I go back on the NHS for 6 months.

I have no life plans to leave Thailand, long-term,  have dependents here, and I can afford to pay for treatment here for "X" years.

it has now crossed my mind, given that it looks like the apomorphine route is a good one, to wonder if I could raise funds for future supply of apomorphine……funds in the order of 40kbahtper month from some kind hearted individual in the same way I have "rescued" three dogs. I have of course already invested a considerable sum.

I believe there is a term for raising money this way, would someone know what it is, and have any knowledge on how to go about it. The alternative is does anyone know the rules or wrinkles for getting back on the NHS?

 

I don't know how you go about getting this drug back in the UK, my Dad is in the UK with Parkinson's and doesn't appear to be on any drugs helping much, although has seen specialists. A Danish friend has a father at a similar stage of Parkinson's in Denmark

[Sheryl]

1 hour ago, cheeryble said:

So after the atrial ablation for which I wait to see if there"ll be an improvement, back to the original point of time coming here, which is to deal with my Parkinson’s.

after a long wait, I have now come to Bangkok to be "fitted" for an apomorphine pump and dosage.

I wondered how it could possibly take two weeks of appearing at the hospital every day from 830 to 4, and now I know.

So today was my first day and I have to say it was successful.

After blood and motor tests, they fitted the pump and set it up for a small dose to check for intolerable nausea. Happily, this didn’t happen, and they raised the dose a couple of times through the day. I then had my first day of going through the lunchtime hours without switching “off “. So this was successful too, and they will raise he dose incrementally.

just before leaving Chula this afternoon the apomorphine nurse pointed out my right foot. Since I first got Parkinson’s, my toes have been curled up on this foot, called hammertoe, and I have had a limp..

Well, guess what? On the first day with its modest dose there’s been a considerable improvement and the toes have relaxed to some extent. The nurse says I can expect further improvement.

so I think we can call that a very successful day, and happy it seems the docs made a good decision to use apomorphine rather than my first choice of deep brain stimulation.

The apomorphine nurse happened to mention when she learned that I had no insurance and paid myself that there are 5000 people undergoing this treatment in the UK. Naturally, this brought to mind the national health service, and the fact that (I believe) I am not a candidate for NHS treatment except for possibly if I go back on the NHS for 6 months.

I have no life plans to leave Thailand, long-term,  have dependents here, and I can afford to pay for treatment here for "X" years.

it has now crossed my mind, given that it looks like the apomorphine route is a good one, to wonder if I could raise funds for future supply of apomorphine……funds in the order of 40kbahtper month from some kind hearted individual in the same way I have "rescued" three dogs. I have of course already invested a considerable sum.

I believe there is a term for raising money this way, would someone know what it is, and have any knowledge on how to go about it. The alternative is does anyone know the rules or wrinkles for getting back on the NHS?

 

1. What you refer to is "crowd sourcing", you post an appeal on something like GoFundMe. You will be competing with people in life and death situations so don't expect much.

 

To get non-emergency care on the NHS you need to have permanently returned to the UK. There are no specific proofs/definitions for that, but the intent is definitely not for people living abroad to be able to fly in and out for care. That said, there are people who have maintained a UK address but live all or most of the time in another country and continue to get NHS care.

 

on totally other subject - what was the total cost for your ablation at Chula?

 

 

[driver52]

On 12/22/2022 at 4:26 PM, cheeryble said:

is India a worthwhile option?

cheap motorbikes over there....

on a more pertinent note, google autophagy, nobody you know will have heard of it.....why's that then? well, there's no money in it for big pharma eh

ditch sugar in your diet for starters, cut carbs too, learn about fasting, your body renews itself that way....

good luck

PS my neighbor was living perfectly well alone with parkinsons at 85 till her daughter decided she had to go in a home and promptly sold her large house ????

[cheeryble]

1 hour ago, scubascuba3 said:

I don't know how you go about getting this drug back in the UK, my Dad is in the UK with Parkinson's and doesn't appear to be on any drugs helping much, although has seen specialists. A Danish friend has a father at a similar stage of Parkinson's in Denmark

Scuba it sounds like yr father is in a similar state I was in and perhaps most Parkinson’s sufferers are in, called fluctuation where even taking a bunch of drugs they are wearing off….in my case for several hours per day I was "off" instead of "on", and headed for bed way too much of the time.

I know people aren’t being adequately treated because as well as being under the care of two doctors and a nurse we see an apomorphine nurse most regularly. She actually works for the Apomorphine company and has told us a lot about them.it seems they are German now, but she clearly said there are 5000 UK residents receiving Apomorphine. Given the large population of PD patients there makes it obvious that a small proportion are on Apo who would benefit from it.

what I can’t help you with is how to get into the Apo system. I used Sheryl's method here in Thailand of seeing the top man and being referred to the dept he runs.

[cheeryble]

2 hours ago, Sheryl said:

1. What you refer to is "crowd sourcing", you post an appeal on something like GoFundMe. You will be competing with people in life and death situations so don't expect much.

 

To get non-emergency care on the NHS you need to have permanently returned to the UK. There are no specific proofs/definitions for that, but the intent is definitely not for people living abroad to be able to fly in and out for care. That said, there are people who have maintained a UK address but live all or most of the time in another country and continue to get NHS care.

 

on totally other subject - what was the total cost for your ablation at Chula?

 

 

Exactly Sheryl……Go Fund Me.

guess there's no harm in trying.

 

as for the ablation it wasn’t in Chula but in Sripat CM, and cost 430,000bt

[cheeryble]

In a nutshell I now wear the Apomorphine pump, and we consider it a success.

I have been to Bangkok for a follow up and as there are no lesions or swelling’s on my stomach, they are allowing me to wear the pump for up to 13 hours per day.

 

The ablation has not been the same success, and a couple of weeks ago I had another cardioversion.

As I felt palpitations and arrhythmias after a couple of days I thought this was going down the tubes.

I then realized that I actually most of the time it was working OK. My wife checks my blood pressure every morning, three times laying down three times sitting up and three times standing up, it has been OK and I have had a good heartbeat, 70 or under

The odd thing is the odd thing is that I have often been feeling very unwell. So the last couple of days I have taken readings on my cardiamobile device, a single lead EKG for the first time ever I have had a read out… Well, you can read it.  For the first time  since the beginning of this saga is me it tells me AFib is not detected.

[cheeryble]

So why have I been feeling so ill?

Well, I was suspicious of the wave form. On the EKG.

so I looked up on Google, and got this below.

it’s clear that the waveforms from Google have a decent spike.

sos where is my spike on the EKG? Rather, it seems to spike downward if anything

 

I have a electrophysiologist follow up on Friday and I can ask then.

But I’d be very interested to learn something before that.

[Sheryl]

7 hours ago, cheeryble said:

So why have I been feeling so ill?

Well, I was suspicious of the wave form. On the EKG.

so I looked up on Google, and got this below.

it’s clear that the waveforms from Google have a decent spike.

sos where is my spike on the EKG? Rather, it seems to spike downward if anything

 

I have a electrophysiologist follow up on Friday and I can ask then.

But I’d be very interested to learn something before that.

Q

Is that your EKG on the right directly above? As it looks normal.  The rhythm strip you posted in the post before that, on the other hand, does not. It is a bit too short to be sure what it is, maybe atrial flutter or heart block? Anyway definitely not sinus rhythm. As you say you are also feeling unwell I suggest you not wait for Friday but see the cardio doc sooner. 

 

The height and shape of QRS complex differs in different leads. I have no idea what your home machine equates to in  that respect.  I don't think those machines are suitable for much more than heart rate and identification of a few obvious arrythmias. 

[cheeryble]

2 hours ago, Sheryl said:

 

Thanks Sheryl.

I have an appointment in Sripat Friday but happen to know that the doc consults in Ram on Thursdays from 6 to 8pm

 

perhaps relevant to the urgency (or not) here is that I believe I had an EKG before my cardioversion 9 days ago which he would have inspected before the procedure or possibly it was taken a few days before which aided his decision to cardiovert. Presumably this EKG would have evidence of important heart conditions.

 

it’s also possible that my feeling unwell may have been linked to my Parkinson’s,it has been quite difficult to separate symptoms of one from the other sometimes.

 

Hmmm….

[Sheryl]

EKG will  show evidence of any current myocardial ischemia, past heart attacks and present cardiac rhythm. It cannot really  predict future arrhythmias.

 

Is it possible to get and post a longer rhythm strip, keeping very still during? 

[cheeryble]

On 7/17/2023 at 11:15 PM, Sheryl said:

 

Is it possible to get and post a longer rhythm strip, keeping very still during? 

I decided on a middle course to speed things up a bit.

I now have an appointment at the Ram for tomorrow, Thursday, at 5pm.

if they don’t send me straight for an EKG I shall order one and have it ready for the oppointment.

Stay tuned.

[Sheryl]

4 hours ago, cheeryble said:

I decided on a middle course to speed things up a bit.

I now have an appointment at the Ram for tomorrow, Thursday, at 5pm.

if they don’t send me straight for an EKG I shall order one and have it ready for the oppointment.

Stay tuned.

Good.

 

As you are post ablation they will surely do an EKG

[cheeryble]

On 7/17/2023 at 11:15 PM, Sheryl said:

 

Is it possible to get and post a longer rhythm strip, keeping very still during? 

Dr Narawut gives terrific value for money, and we seemed to be with him for an hour again.

"how have you been?"

so I went through the reasons I thought what we'd done before had been a Success…
improved BP, much improved pulse rate, Kardia Mobile changing their verdict away from AFib, etc. I then moved on to how ill I’d felt sometimes including this morn8ng.

He looked at the new EKG and the 

Kardia Mobile EKG when extended to a more useful length and pointed out that the waveforms were just fine.

he basically said my heart was fine apart from slightly enlarged bottom chambers and conduction problems, but said my real problem was my Parkinson’s meds interacting badly with each other and me.

 

we decided that the missus and I would have a teleconference with the Parky’s docs at Chula to see if to see if my drug regime can’t be improved. Also suggested such things as loads of water, wearing compression stockings, and putting my legs up the wall.

 

come back in late August to check progress.

I must admit whereas I was rather fearful of going through another night now that I’m know I’m not going to damage myself or have a heart attack getting on my feet in wee hours it all seems a lot better.

 

[Sheryl]

6 hours ago, cheeryble said:

Dr Narawut gives terrific value for money, and we seemed to be with him for an hour again.

"how have you been?"

so I went through the reasons I thought what we'd done before had been a Success…
improved BP, much improved pulse rate, Kardia Mobile changing their verdict away from AFib, etc. I then moved on to how ill I’d felt sometimes including this morn8ng.

He looked at the new EKG and the 

Kardia Mobile EKG when extended to a more useful length and pointed out that the waveforms were just fine.

he basically said my heart was fine apart from slightly enlarged bottom chambers and conduction problems, but said my real problem was my Parkinson’s meds interacting badly with each other and me.

 

we decided that the missus and I would have a teleconference with the Parky’s docs at Chula to see if to see if my drug regime can’t be improved. Also suggested such things as loads of water, wearing compression stockings, and putting my legs up the wall.

 

come back in late August to check progress.

I must admit whereas I was rather fearful of going through another night now that I’m know I’m not going to damage myself or have a heart attack getting on my feet in wee hours it all seems a lot better.

 

Great news.

 

The arrythmia (conduction issue he referred to) is AV block but only 1st degree. And might indeed be due to meds.

 

Great that the ablation worked...haveyou been able to go off the anticoagulants?

[cheeryble]

On 7/21/2023 at 7:05 AM, Sheryl said:

 

 

Great that the ablation worked...haveyou been able to go off the anticoagulants?

Thankyou so much Sheryl.

The anticoagulants weren't mentioned, but your question suggests withdrawal would be desirable when possible

maybe I shouldn’t learn too much about the anticoagulants, more to worry about!

 

I have an hour ago tried on compression stockings we bought.

they were a wrestling match for,my wife to get them on me, honestly I can’t see them being a daily option. But we will give them a chance and check for any noticeable BP drop when I take them off…..got my doubts. How can I ever go out in them looking like my grandma I don’t know!

[Sheryl]

6 hours ago, cheeryble said:

Thankyou so much Sheryl.

The anticoagulants weren't mentioned, but your question suggests withdrawal would be desirable when possible

maybe I shouldn’t learn too much about the anticoagulants, more to worry about!

 

Anticoagulants are a must in A-fib. IF you remain no longer in ital and IF there is no other medical kndication (like history of stroke, heart attack or severe coronartmy artery disease) then stopping may be an option. 

Among other thins anticoagulants make having surgery, dental work, invasive  procedures (e.g. colonoscopy) rather problematic.

[cheeryble]

Update:

the apomorphine pump and associated tube to the needle which has to be changed every dayis a bit of a pain to wear under my shirt, and it’s a bore loading the pump and doing the injection daily, but this is as nothing compared to before when the tablet meds wore off way too soon, and at night I couldn’t even turn over in bed.

Everyone says how well I look and sound.

I’m very glad they made me go this route instead of deep brain stimulation, with which one cannot be sure how well it will work.

 

as for the AFib the ablation, which worked at first, didn’t last, and some weeks later I went in for a cardioversion. This combo has worked to the extent my doc says I "don’t have AFib".

 

is it all perfect? Not at all. The Parkinson’s gives me low BP which is amplified by the Madopar giving lower BP which Madopar I still have to take along with the apomorphine, and the low BP is quite consequential, especially as I am trying to exercise to regain my strength.

I take something to try to keep the BP up, but it’s still not right. I once arrived at the Ram for s9mething unrelated and the obligatory BP check was so low they put me straight on a gurney.

 

I have overactive bladder so bad it really affects my sleep (14 pees one particularly bad night!). We found a med which worked wonders, halved the dose for the second week, went in for a check and he said sorry it’s making your sodium so low it’s unacceptable. No more options it seems.

I now wake up with a very uncomfortable bloated stomach which I read is very common with Parkinson’s. I am just waiting for advice from Chula on this. My excellent pharmacist says ha has something which will deal with it too, but I’ll wait on an answer to my message to Chula and do it properly.

The candy on the cake is another charming symptom of Parky’s or Parky’s drugs which can come at this stage…..hallucinations. They havent been bothersome but are getting stronger and the Ram psychiatrist says they are a real issue where sufferers speak to people and animals whcih are not there. Atypically he more or less insisted I take a med for this.

 

so I have a list of meds as long as my arm which I don’t like at all.

I am uninsured.

As for costs, the apomorphine is particularly expensive and I must look again at sourcing it perhaps abroad. I came here today looking for a thread about sourcing but didn’t find. Is there one?

we have to keep my stock of apomorphine in the fridge so don’t know if it needs that to  comes from BKK without cooling.

 

all in all though some considerable success!

thanks again specially to Sheryl

trade name is APO-go

 

 

 

 

[scubascuba3]

30 minutes ago, cheeryble said:

Update:

the apomorphine pump and associated tube to the needle which has to be changed every dayis a bit of a pain to wear under my shirt, and it’s a bore loading the pump and doing the injection daily, but this is as nothing compared to before when the tablet meds wore off way too soon, and at night I couldn’t even turn over in bed.

Everyone says how well I look and sound.

I’m very glad they made me go this route instead of deep brain stimulation, with which one cannot be sure how well it will work.

 

as for the AFib the ablation, which worked at first, didn’t last, and some weeks later I went in for a cardioversion. This combo has worked to the extent my doc says I "don’t have AFib".

 

is it all perfect? Not at all. The Parkinson’s gives me low BP which is amplified by the Madopar giving lower BP which Madopar I still have to take along with the apomorphine, and the low BP is quite consequential, especially as I am trying to exercise to regain my strength.

I take something to try to keep the BP up, but it’s still not right. I once arrived at the Ram for s9mething unrelated and the obligatory BP check was so low they put me straight on a gurney.

 

I have overactive bladder so bad it really affects my sleep (14 pees one particularly bad night!). We found a med which worked wonders, halved the dose for the second week, went in for a check and he said sorry it’s making your sodium so low it’s unacceptable. No more options it seems.

I now wake up with a very uncomfortable bloated stomach which I read is very common with Parkinson’s. I am just waiting for advice from Chula on this. My excellent pharmacist says ha has something which will deal with it too, but I’ll wait on an answer to my message to Chula and do it properly.

The candy on the cake is another charming symptom of Parky’s or Parky’s drugs which can come at this stage…..hallucinations. They havent been bothersome but are getting stronger and the Ram psychiatrist says they are a real issue where sufferers speak to people and animals whcih are not there. Atypically he more or less insisted I take a med for this.

 

so I have a list of meds as long as my arm which I don’t like at all.

I am uninsured.

As for costs, the apomorphine is particularly expensive and I must look again at sourcing it perhaps abroad. I came here today looking for a thread about sourcing but didn’t find. Is there one?

we have to keep my stock of apomorphine in the fridge so don’t know if it needs that to  comes from BKK without cooling.

 

all in all though some considerable success!

thanks again specially to Sheryl

trade name is APO-go

 

 

 

 

As for sourcing meds, worth trying Medisafe Pharmacy, they get recommended a lot, quick at email responses

 

[email protected]

[Sheryl]

7 minutes ago, scubascuba3 said:

As for sourcing meds, worth trying Medisafe Pharmacy, they get recommended a lot, quick at email responses

 

[email protected]

You can also directly communicate with them through Messenger on their website. Immediate response.

[cheeryble]

On 9/22/2023 at 2:05 PM, Sheryl said:

You can also directly communicate with them through Messenger on their website. Immediate response.

I’m afraid Medisafe do not have the Apo-go