8 years in, DBS on Wednesday. You know you’re sick when you’re actually looking forward to brain 🧠 surgery eh? 😂. I was thinking last night how much I rely on my wife these days. Such a fine woman 👩: cooks food, washes the clothes, takes our pooch for a walk, hold down a teaching job, taxis me about……..
Like the good empathetic boy I was raised 🥴, my mind wanders to the lives of others : how do you cope with bad Parkinson’s if you’re alone? What would I do without my wife? One voice tells me that I’d probably be much more organised than I currently am, knowing that my wife will do so many things. But nevertheless it’s something I fear and was wondering how you singles who have had this crap for a number of years manage?
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jeeves19
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Here are some of the key pros and cons of DBS surgery for Parkinson's disease treatment:
Pros:
- It can significantly reduce motor symptoms like tremors, rigidity, and slowed movement. Symptom reduction is often 50-60% or more compared to medication alone.
- Once programmed, the effects are long-lasting and the patient doesn't have to worry about medication wearing off.
- Some non-motor symptoms like mood and sleep issues may also improve.
- Less medication is required after DBS, reducing side effects.
Cons:
- It's a major brain surgery with risks of bleeds, infections, device issues requiring additional surgeries.
- Programming the device to get optimal results can take some time and follow up visits.
- Symptoms may still progress over time as the disease advances.
- Costs associated with surgery, hospitalization, device, programming are high and not always covered by insurance.
- Some side effects are possible like speech or swallowing problems in rare cases.
- No long term data available on slowing progression with DBS versus medications over many years.
- Requires regular follow up for battery changes and programming adjustments.
So in summary, while DBS provides excellent short term symptom control for appropriate candidates, the risks of surgery and long term costs and unknowns must be weighed against continuing medication management. Careful patient selection and multi-disciplinary evaluation is important.
After 25 years with PD and 11 with DBS, I think many of the pros and cons above are just standard comments. The reality is quite different on both sides of the coin, pro and con because everyone reacts differently depending on placement vs symptoms before surgery incl progression. All the best to all with this disease.
Hi pdp 😄 Happy to answer our experience, my husband is the person who has had PD for 25 years + in reality and yes he is Young Onset at 36 yrs dx 1998, first symptom 1992, right foot Dystonia. I will do a write-up a little later today, no problem, but it's such a personal disease. Cheers B
Hi pdp apologies in advance for the length but hard to keep it short for something that is as important as DBS and living with PD.
My husband was Dx with Young Onset in 1998 age 36 yrs, he is 61 yrs. His first symptom was Dystonia left foot at age 30 approx in 1992. He also remembers in his early teens having a tremor off and on whether that was PD then – UNKNOWN. His DBS surgery was in 2012.
My reply is in CAPITALS.
Pros:
- It can significantly reduce motor symptoms like tremors, rigidity, and slowed movement. Symptom reduction is often 50-60% or more compared to medication alone. YES IT CAN REDUCE MOTOR SYMPTOMS – FOR US, 100% FOR DYSTONIA, TREMOR (EVEN THOUGH NEVER TREMOR DOMINANT), RIGIDITY AND SLOWNESS OF MOVEMENT.
- Once programmed, the effects are long-lasting and the patient doesn't have to worry about medication wearing off. A VERY STRONG STATEMENT. EFFECTS ARE LONG LASTING FOR US YES. SO FAR. BUT INCORRECT THAT YOU DON’T HAVE TO WORRY ABOUT WEARING OFF. KEEPING “ON”, OR IN OTHER WORDS ‘NOT WEARING OFF’ IS ONE OF THE BIGGEST DAILY ITEMS WE HAVE HAD TO ADJUST REGULARLY, TO KEEP ON TOP FOR OPTIMUM FUNCTIONABILITY. UNFORTUNATELY, THE BIGGEST ISSUE IS THE PD PROGRESSION ITSELF. SO WHAT WORKS ONE DAY, MAY NOT WORK THE NEXT.
- Some non-motor symptoms like mood and sleep issues may also improve. NOT FOR US, MOOD HAS BECOME ONE OF THE WORST SYMPTOMS. MY HUSBAND WAS NEVER MOODY BEFORE. BUT APPROX 2 YEARS AGO THE FIXATED, INFLEXIBLE ‘MODE’ MOOD STARTED AND WE FEEL IT IS DIRECTLY RELATED TO LEVODOPA USAGE WHEN IT REACHES OPTIMUM ‘ON’ IN HIS BRAIN. HE IS NOT THIS WAY WHEN ‘OFF’. IT’S A REAL BUGGER, BECAUSE HE CAN’T FUNCTION 100% WHEN FULLY OFF. THE GOAL IS ALWAYS TO STAY ON, SO THIS MOOD IS A SHOCKER. WE DON’T FEEL IT’S FROM THE DBS AS IT WOULD HAVE SHOWN UP SOONER, SO FEEL IT’S PROBABLY A COMBO OF LONG TERM LEVODOPA USE AND/OR PROGRESSION. THERE ARE A FEW OTHERS WHO HAVE PD, ON OTHER SITES, STRUGGLING WITH THE SAME ISSUE.
- Less medication is required after DBS, reducing side effects. NOT TRUE FOR US. MEDICATION DROPPED AT FIRST A LITTLE BUT INCREASED FAIRLY STEADILY FROM 6 MONTHS AFTERWARDS TO THE 2100MG PER DAY LEVODOPA HE IS ON NOW. HE ISN’T TOPPED OUT ON THE LEVODOPA YET, BUT IT’S TRICKY BECAUSE EVEN A ½ PILL MORE CAN START DYSKINESIAS.
Cons:
- It's a major brain surgery with risks of bleeds, infections, device issues requiring additional surgeries. YES FOR SURE, BUT AS WITH ANY SURGERY, YOU NEED TO WEIGH THE BENEFITS AND COMPROMISES TO ASCERTAIN RISK TO YOU PERSONALLY. DEVICE ISSUES FOR US, HAS BEEN NEGLIGIBLE. ADDITIONAL SURGERIES NOT NECESSARY AT PRESENT AS HAVE RECHARGEABLE BATTERY.
- Programming the device to get optimal results can take some time and follow up visits. ABSOLUTELY TRUE – PROGRAMMING TO US IS ‘THE NUMBER ONE’ OF IMPORTANCE. IF YOU DON’T HAVE A GOOD PROGRAMMER THEN THE DBS IS NOT GOING TO FUNCTION ‘FOR YOU’ TO THE OPTIMUM. MY HUSBAND HAS 4 PROGRAMS ON HIS DBS. BUT IT’S NOT THAT EASY TO FIND EXCELLENT PROGRAMMERS, ESPECIALLY IF YOU ARE BOUND TO ONE REGION OR COUNTRY.
- Symptoms may still progress over time as the disease advances. ABSOLUTELY, WITH MOST CHRONIC DISEASES I THINK. THEY WILL STILL PROGRESS WITHOUT DBS.
- Costs associated with surgery, hospitalization, device, programming are high and not always covered by insurance. NOT SURE ON THIS EVERYWHRE, BUT IN THE U.S. EVERYTHING (EXCEPT CO-PAY) IS COVERED FOR US.
- Some side effects are possible like speech or swallowing problems in rare cases. YES FOR SURE, SPEECH IS DEFINITELY WE ARE FINDING, FOR US, AND MANY OTHERS A BIG PROBLEM AND IT’S DEFINITELY NOT RARE IN MY OPINION. THE WHOLE ‘ENT’ AREA CAN BE COMPROMISED STARTING WITH THE SPEECH AND SLOWING DOWN OF THE MUSCLES IN THE THROAT AND VOICE BOX, I THINK THAT IS HOW IT WAS DESCRIBED TO US. SO CHOKING IS SOMETHING WE HAVE NOT EXPERIENCED BUT WATCHFUL FOR.
- No long term data available on slowing progression with DBS versus medications over many years. OPINION ONLY IS THAT DBS DOES NOT SLOW PROGRESSION WE FEEL. IT’S A VERY HARD ONE TO JUDGE IF THERE IS NO DATA, AND WE ALREADY KNOW THAT TAKING MEDICATION OVER MANY YEARS IS FOR MANY NOT THE ANSWER BECAUSE MANY PEOPLE CAN’T JUST KEEP INCREASING LEVODOPA, OR OTHER MEDS BECAUSE THE SIDE EFFECTS OF THE MEDICATION BECOME AS BAD AS THE DISEASE ITSELF WITH PROGRESSION.
- Requires regular follow up for battery changes and programming adjustments. THIS IS COVERED ABOVE, BUT FOR A RECHARGEABLE BATTERY YOU DON’T HAVE REGULAR FOLLOW UP BATTERY CHANGES. THE BATTERY LASTS SUPPOSEDLY UP TO 15 YEARS WITH BOSTON SCIENTIFIC. WE ORIGINALLY HAD A NON-CHARGEABLE MEDTRONICS, WE CHANGED TO RECHARGEABLE SO NO EXTRA SURGERIES. PROGRAMMING IS ABSOLUTELY NECESSARY, SO YES REGULARLY.
So in summary, while DBS provides excellent short term symptom control for appropriate candidates, the risks of surgery and long term costs and unknowns must be weighed against continuing medication management. Careful patient selection and multi-disciplinary evaluation is important.
IN SUMMARY – DBS - HE FEELS THE DBS WAS LIFE CHANGING AT THE TIME IN THAT IT CONTROLLED IMMEDIATELY THE MOTOR SYMPTOMS. IT’S ONLY BEEN IN THE PAST 2 YEARS THAT HIS SPEECH HAS STARTED FAILING (very quiet, slurred) AND IS NOW A MAJOR ISSUE. BUT THE NUMBER ONE PROBLEM WOULD HAVE TO BE THE FALLS . HE DOESN’T FREEZE, HE WALKS PRETTY WELL AND CYCLES, NO PROBLEM UNTIL STOPPING. THEN HE LOSES HIS BALANCE. USED TO MOTORBIKE NOT NOW. DRIVES STILL. HE HAS ANYTHING FROM 5 TO 20 FALLS PER DAY MAINLY FORWARD, SOME SPINNING SIDEWAYS, SOME BACKWARDS. WE FEEL THIS HAS BEEN DIRECTLY EXACERBATED BY THE DBS AND ITS CALLED POSTURAL INSTABILITY (advanced). HE’S TALL AT 6’3” SO BIG TREE FALLS HARD. HE WEARS KNEE PADS WHICH HELP IMMENSELY. FROM EVERYTHING I HAVE BEEN READING RECENTLY IT’S VERY COMMON AFTER DBS FOR MANY PEOPLE TO START HAVING GAIT ISSUES. BUT WE KNEW NOTHING ABOUT THIS BEFORE DBS SURGERY, OR EVEN THAT IT WAS A POSSIBLE SIDE EFFECT. IT SEEMS THAT IF YOU HAVE AN ISSUE BEFORE DBS, WITH GAIT OR VOICE, THEN IT COULD POTENTIALLY MANIFEST WORSE. THE SHAME IS – HE HAD ZERO ISSUES BEFOREHAND.
IN SUMMARY – LIVING WITH PD FOR 25 YEARS FOR HIM – THE FATIGUE IS A BIG THING, ALWAYS HAS BEEN. FOOD AND MEDS TOGETHER HAS NEVER BEEN AN ISSUE. THE ONSET OF SHORT TERM MEMORY, EXEC FUNCTION ISSUES IS A LITTLE SCARY BUT WE JUST HAVE TO KEEP AN EYE ON IT. CONSTIPATION AN ISSUE NOT ONLY FROM THE MEDS BUT THE PD ITSELF. DEPRESSION IS A BIGGIE FOR MANY, LUCKILY WE DON’T HAVE TO USE ANTI-DEPRESSANTS BUT THE ‘LOWS’ ARE THERE. COMPULSIVE BEHAVIOUR – YES DEFINITELY HAD WITH AGONISTS, STOPPED USING THEM. WE CONSIDER OURSELVES LUCKY THAT HE IS ONLY DEALING WITH PD, MANY PEOPLE HAVE A LOT MORE TO DEAL WITH.
I MUST FINISH WITH ONE ITEM THAT WE HAVE FOUND AMAZING WE GET AMAZING SOLACE FROM, IS ANIMALS. WE ARE CAT PEOPLE, BUT IT’S AMAZING WHAT A LITTLE UNCONDITIONAL LOVE DOES FOR THE SPIRIT, LIFTS ONE UP WHEN DOWN – HIGHLY RECOMMEND. 😹🐈
I am so grateful for your very detailed explanation and information. It is quite informative. Thank you so much.
Your insight has given me additional information that will help me decide if I should still go ahead with the DBS. I am also technically young onset as I was diagnosed at age 48, which was 10 years ago. I am tremor dominant and I have been struggling with significant speech issues in recent years after I was switched to Rytary. I have since switched back to Sinemet and it took about a year for my speech to kind of normalize.
I am diabetic and therefore infection is the primary risk factor. For now, Sinemet with Nourianz is working well, so I am going to hold off DBS as long as I can.
This is a very frustrating disease where there is a fork in the road at every turn. I must say that I have found that spouses such as yourself and my beloved wife and the other spouses in this forum (there are plenty), are the bedrock of Parkinson patient survival. Our generations are quite lucky. I pray for the future generations that will have to deal with this stubborn ailment.
Hi pdpatient, I’m curious about your comment that rytary caused speech problems for you. How did you know it was the rytary? My speech has gotten much worse over the last 2 years which coincides with my starting rytary. I had problems before but mostly with a soft voice. Now I can’t enunciate and slur my words so much that it is unintelligible. When I asked my doctor about it, he said it shouldn’t be any different since rytary is c/l the same as sinemet is, which makes sense, but still I wonder why my speech is so much worse…..
Just like you are doing now by tracing back the timeline. I was initially not sure and since I was on a bunch of medications I had to go through a process of elimination.
The problem with Rytary was multifold. I could not ever get to full ON time fast enough and when I did, my speech got way worse to the point that I was totally unintelligible. The ironic aspect of the damned medication is that everything else seems alright with no tremors, better gait and outwardly almost a looks fine after perhaps the second dose. But, the moment I opened my mouth, BAM! I sounded like a pathetic excuse for a human. Lost my job over it. I cursed myself for ever asking the doctor for the opportunity to try out Rytary.
My MDS also disagreed with me just like yours is. However, my job loss also meant that I lost my insurance and Rytary became unaffordable overnight. My doctor had no choice but to prescribe me Sinemet. It was the happiest day of my Parkinsonian life😂
My speech has almost become normal, the way it was before Rytary. Except for the fact that I speak a little too fast. I am working on it to fix it. Hopefully it will be resolved and I hope I can get a new job again. Young onset Parkinson is a curse!
BTW, I think that the long acting component of Rytary is the culprit. I also believe that doctors are incentivized in some way by the manufacturer and they are reluctant to take us off the medication once we are in. Perhaps the long acting component is not strong enough to support voice muscles or perhaps it messes up the vocal chords in some way.
Thanks for the response. I retired mostly because of my speech but it was probably time anyway and when I was offered an early retirement package, I took it. I don’t tolerate sinemet IR well at all; it makes me really nauseous. I was taking the CR/ER version of it before rytary and it made me less nauseous but it still upset my stomach. Rytary is so much easier to take from this standpoint. I feel great after the first dose of the day, but after the second dose, my head gets really heavy and foggy feeling and my speech gets worse and it goes downhill from there.
I'm really pleased that you have found some of what we have said is helpful. Certainly so much to deal with isn't there. I'm interested in this Nourianz - but it's an Agonist which my husband didn't do well on before. Definitely something to keep up our sleeve though. All the best.
Hi Bunny. Totally agree with most you have said.My HWP had DBS in 2005. Was amazing for tremor but badly affected his walking. Then 12ish years ago his PD moved to his left side and the tremor when 'off' has never been properly controlled. My husband is 30 years with PD and almost 74. I often wonder if he would be any worse without DBS. His PD nurse says as time elapses he will become more dependent on the drugs and I think this is so. He is lucky to get 2/3 hours out of his c/l. Falls are a problem but he recently had his settings reduced and I think it may have helped a bit but it is also a case of 'less is more' with the medication.
We go to Royal Hallamshire in Sheffield in uk and are usually seen every 6/9 months. The nurses are wonderful. He was given DBS because he had to stop taking the dopa agonist due to compulsive behaviour. He doesn't have depression or moods but he is not as active as your husband. I just wish his apathy would go.
I asked him recently if he was glad he had had DBS and he said yes.
Hi Jeanie, yes it's been long lasting for him, which I'm pleased. It really is such a bummer the affect on the gait and for him the tremor. I was thinking about it the other day when writing the post and speaking to my Husband as to how he felt it would be different without the DBS and he still feels that for him, it is far better because of the motor skills that are controlled, especially the dyskinesias which are probably 90% controlled.
Interesting what his nurse has said about the meds. Is he into STN or GPI? Bilateral? Also interesting that you lowered settings to help with less falls and it worked. We did similar recently as well and it definitely has reduced them we feel but it seems to have made the speech worse.
6 to 9 mths is pretty good for programming. We have not had programming for over 2 years now with traveling around so much, so it's a definite minus. 3 of his programs have disappeared off his IPG probably from him over-writing them by accident, but it's so important to have the separate programs to be able to change to for eg; speech, walking, less dyskins etc. Our fault obviously.
Would he benefit from a low dose of Anti depressant do you think to improve the apathy? They're such yucky pills though for side effects we found, hence went off them. Agree re Agonists - we had the same issue with compulsion.
Good luck that the falls keep reduced, we pray for the same...
I keep mentioning anti depressants but our general PD nurse will only deal with one thing at a time so I am trying him on Lions Mane and restarting B1 Therapy. Yesterday we went to a hypnotherapist who said to me ' Looks to me like you should be in the chair instead'. We have gone through hell past 7 weeks. No idea what has happened to him. Since our holiday abroad.
I hear you, on the stress on the 'caregiver' side. Some days become overwhelming with so many things to keep in mind.
I'm surprised that the PD nurse won't even look at Anti'Ds, it's well documented that PD causes chemical imbalance for many and use of the right AD can help immensely. Can you speak to his Neurologist who in reality is the best person to advise.
I'm not sure JeanieBeanie, but when we have traveled and it's been a lot over the past 8 years, my husband is always worse for weeks after from the actual stress of the travel. He doesn't feel it mentally so much as physically his body is saying 'enough already'.... ?
Exactly. I am trying him on this Lions Mane but I feel that soon I will' kick some ass' and insist on seeing his regular PD nurse. We tend to see them in Uk and to be fair, they do seem to know more as they are dealing only with PD every day.
Interesting, and makes sense that there are some good ones when dealing with PD every day. Certainly not the same in our home country. Hope you 'kick some ass' real soon, sounds like it's needed...😀🐱
My circumstances are opposite to yours. I am 61 and my husband takes up the slack where I can't. He has lymphatic cancer and was at death's door about 2 years ago. I was diagnosed with PD in 2006. We look after my mother of 84 as well.
Good morning and happy new day, Jeeves. Please don't take any offense to what I am saying.
Is there any way you can get one more last minute consultation with your care team about the pros and cons of electing to do the DBS now?
Given that you are in the UK, this might be unrealistic. But I had to ask.
I am basing my suggestion after reading your recent posts and I am concerned. I am also basing my suggestion on my own recent experience and had similar thoughts and concerns. I expressed them to my care team and we all came to the conclusion that I can wait till I am genuinely ready.
Hi jeeves19I'm 53 and been diagnosed with pd for 12yrs. My main symptoms are constant fatigue in which I have little energy to complete jobs around the house & garden on a daily basis. A tremor in both arms that is becoming harder to control through medication( 2 x 50mg dispersible first thing, 6 x 125 throughout the day, 1x125 cr in evening, the 1 x Opicapone before bed. I also get ridgety in the neck and shoulders and when walking I tend to drag my left foot. Crippling joint pain in lower body!! I've also been to Southmead for a consultation in which the consultant recommended dbs for myself. BUT I'm really unsure whether this is the right procedure for me!! I have a very good friend who chose to have dbs 4 years ago. It took a year or more for him to feel happy that he had the operation. He had issues with balance. Walking normally and speech. I'm not sure I can cope with these issues for over a year, and to add to that would I be able to see a nurse for adjustments to dbs with this department understaffed( this was 4 months ago).
I would wish for anyone's pros & cons of dbs to be given for everyone to read because it's such a big decision to make. Gd luck
Marc. I hear you buddy, but the only thing I can say is that I’m about ready to throw myself under a car symptomatically. I’m upping the meds quite a bit higher than yourself and even then it’s touch and go if they’re going to work. They’re so unpredictable and unreliable. So yes, I’m taking a chance but feel that life is pretty bad at the minute. Occasionally we have to hope for better eh?
Recently just met someone who had DBS done in April here in the US. Said if anyone asked she would tell them the truth and think again because she had issues with her eyes. Just last after seeing a few different docs re her eyes, turns out it is just dry eye/allergies and had nothing to do wit her DBS surgery. She feels great and would recommend to others - as long as they have done their homework on the pros and cons and one's expectations, confidence in the doctors, and such.
My husband states if I weren't here with him, doing daily tasks, being his best friend, his advocate, he would be in assisted living.
I'm a single guy with PD, albeit for only 5.5 years. Thankfully I'm still getting on rather well, live my life pretty much the same as before I was diagnosed. But i do wonder how I will do years from now as the PD progress. But I try to live my life one day at a time, and I'll deal with that when the time comes.
Best of luck with your procedure, wishing you a fast recovery and remarkable results!
I think so Marc. We talked it out and she said that because the dystonia was Levadopa responsive, it still made sense to go for the STn. In addition, she’d liaised with the Neurologist and my programmer and both endorsed the choice of the STN. Good enough for me I reckon! Thanks for the goodwill. Much appreciated and I’ll let you know how it goes. 😊
Hi Michel. Thanks for the sentiment and I’m going to Bristol. This is quite a drive for me but I chose this centre specifically. I’ll feedback of course.
All the very best for Wednesday. Will be thinking of you and wishing you every success with the procedure. Bristol Hospital seems a centre of excellence from what I ve read, you’ll be in good hands.
Hope so Zella. No guarantees and getting the program right sounds like a drag but I’m really fed up with this disease now. Feel like I’m just about to jump out of a plane on my first ever parachute jump! Chocks away. 💪😵💫
hi Jeeves, you don’t know me as I haven’t posted before. But I’ve been checking out your posts and really appreciate your telling us about what you’re going through because I too am down to have DBS in late October with the team at the Radcliffe in Oxford. I was diagnosed in 2016 and was generally doing very well until about 18 months ago or so… especially active sports wise and taking care of what I eat, albeit with more stress in my life than I would have wanted. Since then my “on” window has progressively reduced, and I’ve also been experiencing slowness of movement, painful muscle cramps, and horrible dyskinesias twisting the left ankle with increasing body swaying and arms gesturing, especially in the evenings. From thinking that I’m perhaps really not ready for DBS, to when I’m going through these “off” periods and thinking it can’t come soon enough, it’s been a bit of a roller-coaster to say the least. But I’m now pretty much quietly settled on having it done whether I’m in “off” or “on” modes. Thanks for the courage of your posts, and like everyone else in this amazing community, I’ll be rooting for you Wednesday.
Thanks Mac. I’m somewhat surprised at how many people have picked up on my little tale. This thread - for example - was me just nosey about how people cope when alone with the disease. That virtually seems to have been pushed into the margins as a side issue compared to me innocently remarking that I’d got the Big Op Wednesday. I’m genuinely surprised yet touched by the messages of goodwill from the community. Heartwarming stuff indeed.
All I can say Mac is that when you’ve reached the point of meds becoming unpredictable, unreliable and - in some cases - your enemy, then it’s probably time to go eh? Some people declare that they were able to throw meds away for 10 years whilst others reckon they could reduce them by merely 25%. We’ve just got to take that chance, put ourselves in the hands of the clinicians, say a prayer and then send it out to the universe or the Lord (delete as appropriate 🤔😂🥴). Keep in touch.
pdpatient, I’m really sorry you’re experiencing the roller coaster without social support. If you’re talking about a social safety net as in state funded initiatives, I’m not so sure it’s all that great in the uk these days… but probably (from what I read) better than US - although I’m really not sure. Either way, I hope you feel like you’re able to pick up at least some level of ‘support’ through communities like this, as I do.
Cheers Aaron. How’s things with you pal? Still lifting the weights? I think one of my most damaging factors, was having an operation on my foot. This prevented any running, cycling, cross training for about 7 weeks. Mr P made some real headway in this period sadly, especially with my energy levels. I would try cycling and after 5 minutes I was totally knackered. Kept getting back on but never managed to regain my old ‘snap,crackle and pop’. Keep at it Aaron.
The ability to be independent is something both people with PD and people without PD must consider as far ahead of time as one can possibly do this. I assist a person who lost their ability to drive due to PD, lived away from public transportation and relied on friends to help with shopping and appointments. This was sustainable for only a short period of time before the friends started to burn out. Due to finances and a small number of friends, it was decided that the best option was to sell the house and move into an assisted living environment. This wasn't ideal from the PWP's perspective as it was such a radically different way of living but, in reality, turned out to be a great move. He is much more socially engaged than the prior isolation of living alone, has access to 3 meals per day, activities to occupy the day and can have transportation to do shopping at stores. I think if you have family or very close friends you might continue to live your life as "normal" if they can commit to this level of support. I wouldn't be afraid of transitioning to assisted living (if you have the $$$$) as the tradeoffs are more positive than negative and truly allows for more independent living.
I always admire the candor in your posts. Looks like like you will have well-wishers all around the globe. Best wishes for a successful outcome from Maine, US.
Jeeves, I totally agree with your sentiments. I, too, am blessed with a wonderful wife who makes my PD life bearable. I hope that each of you with PD has such a helpmate. I'm having PD DBS surgery later this year and am looking forward to restored function. Question for those with DBS installed; is your handwriting improved?
It's interesting that we have some parallels. My husband supports me a lot, with cooking, transportation, etc. I've been thinking lately that I might try a week or more without help. I think there's an element of "benefit having Parkinson's" that isn't healthy -- allowing us to be more dependent and reinforcing helplessness patterns. If you were raised in the Dr. Spock era, many of us were left to cry at night as infants which has long term impacts on emotional and physical health (major early stressor). For me, this has been always (unconsciously) wanting to be taken care of in some way.
Of course I appreciate my husband's efforts immensely. But I also am thinking that it would be yo my benefit to leave that leaarned helplessness behind...
Very interesting Rebtar. Unfortunately I won’t be able to go the independent route for the next couple of weeks, but I hear your idea and reckon that you’re probably right.
I feel like use it or lose it applies here. If you stop doing something you can do it is one less thing you will be able to do in time.
Problem is mustering enough dopamine/willpower to do something hard that is much quicker for someone else to do (or for the caregiver to watch and wait for it to be done much slower than they would do it).
Very important I think to take back some tasks that are hard to do and master them again one by one.
Yes, I see that in my 20 year old son who has adhd type symptoms, but undiagnosed.
He is getting on top of it in a weird way. He is making himself do physical stuff like turning the shower to cold after a shower and jumping in cold pool(in winter) to force his body to do things it doesn’t want to do. He reckons it helps him do uni work as he is toughening up his brain to do things it doesn’t want to after years of letting himself take it easy.
Your son has probably stumbled upon this latest trend of using cryotherapy or the more accessible therapy of cold water immersion for shocking the body to produce beneficial results.
I am using head to toe cold water showers. It produces an instant shock but dangerous to do because there is a risk of fall. Not sure if it produces large amounts to dopamine but it does make me feel better especially during the summer. No sure if I can do it during winter.
Yes, he is young so hopefully heart ok and slipping not a problem for him.
The other day he said guess what I made my body do? (It was freezing cold with sleet and rain and after dark). He had got into his swimming togs and made himself run down our street in the dark and weather and back , then jump in the very cold swimming pool (middle of winter here) before getting in the spa pool. That’s mind control! And it is helping him force his brain to study. He’s doing so well this year at uni after 2 wasted years doing nothing at high school.
About $40 k Sara! DBS is free in the U.K. (well it free exactly as we pay taxes towards it), but FUS in Switzerland is ridiculously expensive and there’s no control over the levels of things once it’s done. DBS is much more flexible and adaptive depending on the patient’s symptoms I feel, and the new multi directional leads enable power to be delivered in one direction whilst turning off or minimising it in another.
I have had Parkinson’s for 14 years and discovered this site about three years ago. I have never posted and I’m in constant awe of the unselfishness and time people so generously spend sharing their knowledge and experience.
it’s hard to type it’s hard to dictate, and it’s hard to be funny when you’re in pain. But I have to step out of the shadows to say thank you so much although I don’t know you your posts always make me feel better. They are funny direct empathetic and and humane. So I will be one of expect many people who don’t know you at all but will be rooting for you. so all the best and you go where many have been before you and were able to say I feel a bit better than I used to.
I hope so much that you will feel much better than you do now, and I look forward to you writing all about it
Gonehomr. That’s so kind and thoughtful. Thanks for your generosity of spirit. I actually suspect that the bravery that somebody else perceived in me is more like the naïveté that most products of the English public school system display I.E that whatever they have to say MUST be interesting to others 😂. Funny? Nah….,..come up my local one night and I’ll show you some really funny guys, but humane? You might have got me there. One thing that this disease has indeed taught me, is the value of compassion and kindness towards other people’s suffering. That’s definitely worth celebrating eh? Thanks again and I wish you well.
It’s getting late in the day, so just a little beep to join all the other voices here and wish you all the very best for tomorrow! We’ll be thinking of you.
Thank you Ethin. Will be admitted at 7 am. My Japanese surgeon (good with knives you know? At least on fish 😂) will either be at her best on her first patient of the day (fresh) or still sleepy 😴. I hope for the former!
Keeping you and your team in our thoughts today…may the best of outcomes be yours to celebrate…we’re rooting for ya!! Like so many here have expressed Jeeves, your honesty in sharing your journey is so helpful and heartwarming. Many thanks and best of luck!!
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
apologies in advance for the length but hard to keep it short for something that is as important as DBS and living with PD.
TTFD - I think I made a judgment error.
I am not convinced that I have PD. Could anyone tell me if they have had any of these experiences?
Hi, I may be bored with the questions but I know I will get the answers here.
