Gradually moving towards to DBS


#41

Thank you emvee.

We do indeed have a son whose name begins with M, and yes he is a partner.

Yes a very small world and shrinking by the secondbig grin.

Thanks again, best regards, Tractorman.


#42

That's brill TM I am over the moon for you keep me updated xx


#43

Had a follow up appointment at the JRH yesterday. Despite the size of the area my bruising covers, (Topless male model career over, like I ever had one!) it extends below my left elbow by a couple of inches, all is good. Wounds healing up nicely, not even the merest hint of any problems so far.

The basic outcome was "see you in 5 weeks."

Regards,

TRACTORMAN


#44

Hi TM tried to send you a private message on here would not send strangely. Just want to see how your doing my mobile number has changed hench private message. Can you PM from your end you're number then I will give you a call best wishes K xx


#45

Well now what can I say? Got switched on Tuesday Morning not shaken one little bit since then, daily pill consumption cut from 2250mg to 1250mg with a serious prospect of more to follow! Walking greatly improved likewise sleep quality! Getting some dyskinesia on RH side which I didn't have before, watch this space.

Nifty little remote control, choice of 2 programmes taken from the best settings for me as tried out on Tuesday Morning. Can switch DBS off or make adjustments above hospital setting by up to 0.4 in 0.1 increments or drop all the way to zero. Currently running on hospital settings of 3.3 RH, and 2.6 LH.

As the process, like almost everything PD, is very individual it took approx 3 hours to get the settings that worked for me. Walking pretty poor at first on Tuesday, but yesterday and today, spot on!

If you are thinking of asking about DBS or are waiting to go through the process, based on my experience thus far all I can say is GO FOR IT, don't hesitate. Yes there is plenty to worry about, massive amounts even, but getting this far with shaking gone (covered up) and to sleep solid all night long.......

Best regards to all,

Tractorman.


#46

This is good news TM still time to go before your fully recovered but so far so good glad you're experiencing it all in a positive way.

Best of luck for your recovery and keep fighting the good fight.

BB xx


#47

1 week after switch on. Still impressed with DBS.

Last Friday I was getting some dyskinesia, usually at about pill kick in time. Spoke to the Advanced Nurse Practitioner who did the switch on, discussed the dyskinesia, decided which pill to stop, ANP then spoke to the Doctor, reduction authorised, consequently now only taking 1/3 of the meds I was pre DBS. Quite likely more reductions in the pipeline too.

I went back to work Monday, working shorter days for this week, full on next week is the plan.

My favourite quote so far was when my 16 Year old daughter said "I didn't realise how tall you are", that's the improved posture box ticked then....

Best regards to all,

Tractorman.


#48

Bloody brilliant TM pleased as punch for you mate xx


#49

Here we are 5 months on since getting DBS installed and I'm pleased to report it is all going on very well. I'm now down to taking only 25% of the weight of meds I needed pre op. If I get stressed yes my left arm shakes a bit but nothing compared to pre op levels. Today I took all of the meds I no longer use back to the pharmacy for disposal, a small act I know but it felt great! 

DVLA still under performing you could be forgiven thinking they've lost the ability to read. Despite sending all the details of where and who to contact regarding my DBS they appear to have contacted everyone but. 

Thanks for all the good wishes I've received along the way, and new friends I've made both with and without PD and or DBS.

Wishing you all the very best for the festive season and on into 2018, may your "ONs" be long and your "OFFs" short and shallow, by whatever method works for you!

Regards,

Tractorman.


#50

Hello All,
A quick update. I attended a routine post switch on review appointment last week at the John Radcliffe Hospital Oxford. All good. I explained that in some situations I get some minor tremor breaking through in the shape of left hand and arm start to shake little. I am still blown away by the science behind DBS. The Advanced Nurse Practitioner made numerous tweaks to the program one of which left me fidgeting in the chair like a schoolboy desperate to spend a penny! That tweak was not saved. Anyway, now running on “program 2” which the ANP set to target the aforementioned tremor, so far so good. The main tweak was taking the pulse frequency on my LH side from the base line 130Hz to 136Hz. If I don’t like it I can revert back to “program 1”. Will update again very soon.

Regards,

Tractorman.


#51

After 14 years diagnosed, the thing I have been hoping wouldn’t happen, happened.

At the top of the M&S escalator I froze. It was an instant thought, if you step on this you will fall and it will hurt or it will hurt even more and then… At least I had the excuse that my meds were Off at the time.

I am officially scared of getting on an escalator. Lift’s are a little better if someone holds the door before my body tests the safety gear. Stairs are actually a blessing.

So as my P enters a new phase I am embarking on the DBS solution. As I understand it the best outcome is that the electrodes keep you in a state equivalent to how you feel when you are switched on.

It’s hard not to be optimistic but the team in Bristol do seem to know what they’re up to.

Any words of guidance of how to unfreeze in daily life and things to watch with DBS are welcome.


#52

Hi Kendo,

Re things to watch with DBS.

When switched on for the first time I thought “Oh is that it” but as the brain settled down it was quite clear that it was a game changer! I consider I got lucky because it works very well for me. Sadly I know that some folk who’ve had DBS have had much more of a struggle and have yet to get the benefits from DBS that we all hope for. I only had it installed July 20th 2017 and got switched on August 29th. Hence compared to others I’m something of a novice. I had it done at the John Radcliffe Hospital Oxford and have nothing but praise for the team, before, during and after the operation, likewise the on going follow up routine appointments.

I’m happy to chat on the phone on the subject, if you wish send me a PM and I can ping you a contact number.

Regards,

Tractorman.


#53

Thanks for the reply. It’s taken me a while to find this post again. Glad it’s working for you. I’m aware the set up is crucial.

Did you go for the rechargeable or whip out every 3-5 year battery type?

I would call if I could hold a sensible conversation, but sadly that’s one thing that I really struggle with. I can shout but getting my voice going is the tricky part for me. I’ve heard DBS can make your voice quieter, but as my problem seems to be linked with starting muscle movement, the physical effects of DBS on my limbs may be help my jaw and tongue. I can but hope.


#54

Had an appointment at the JRH last week. Had to do the neuropsychological assessment one year on since installation of DBS. Fairly happy with how it all went, however would of been better if I hadn’t left my glasses in the car at the park & ride car park! Great start to an appointment, parts of which test your memory!

Not certain of the rules but they can’t/won’t tell you if you’ve got any answers right or wrong…

Looked after very well as usual at the JRH.

Regards to all,

Tractorman.


#55

hazewell123

3d

Hi im going dbs assessment in a couple of weeks . I was asses3 before in tbe local hospital came of my meds the nighr before as planned and the next day my tremors were on holiday but they did rear their ugly head later . Im just worried that thus will happen again and the neuro panel will not see the real tremor in real time and say no yo dbs …am i worrying over nothing …o. getting anxiety just thinking about it x