I just 'celebrated' my third anniversary of being officially diagnosed with PD. My wife has been super supportive this entire time by sharing any information she finds, she comes with me to all my medical visits and asks plenty of questions of the doctors. I only recently started taking sinemet (I was trying to go about this without medication and use only supplements and regular exercise). The sinemet has helped with my overall energy, bradykinesia, stiffness among other symptoms. These improvements have enabled me to go full bore with my exercise routine (5x/week to the gym, boxing, ping pong, hiking and running) and she has acknowledged that my demeanor and how I carry myself has greatly improved.
However, when I was first diagnosed (I was 56) she joined a Facebook page for caretakers for PwP and saw the writing on the wall with what the future may be in store for the both of us and it is not pleasant. This has led to a strain on our marriage as we walk through this journey. She has been very pleased with my recent improvements but the door has been opened and cannot be closed (she avoids that FB page). We are both seeing a therapist to deal with the mental aspects. What, if anything else could we be doing? We talk about what we are feeling regularly. Perhaps we are doing all we can for now and this aspect of dealing with PD is a journey that is unique to each one of us. I never imagined how difficult the emotional toll would be. Thanks for letting me vent.
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Fatherof5
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I think you are both doing just fine: I would be surprised if strains did not develop in your marriage. This from a male caretaker five years in. It has been a difficult adjustment for me - given my age then (65 yrs), cultural conditioning (male) - to become a caretaker.
My spouse’s anxiety is mind boggling: probably the hardest thing to deal with. For instance she always feel I would drive her off the road, as I swerve through and fro on our potholed roads. An argument ensures. I shut up, because I should know better that snap as she goes off the rails.
So I read all the stuff, completely aware where it may all end. She prefers not to know, and for the most part can only identify the Sinemet in her some times 20 pill daily packet.
But I feel confident - probably unfounded - that the future will be fine. For me Health Unlocked is a fabulous place to be for the many conventional and unconventional therapeutic options suggested.
So here are my suggestions:
On Health Unlocked: Read the post. Go down the rabbit holes. Use the search bar.
On Food: Change your diet, which essentially means stay away from processed meals.
On Exercise: Doing well in this department.
Care Taker Support: It would be well that the caretaker take some supplements as well. Foundational supplements are (1) B-Complex (2) Omega 3 Caps (3) Magnesium Glycinate (4)Trace Minerals (5) Vitamin C/Quercetin Complex.
And finally there are the marriage vows - “in sickness and in health, until death do us part”.
You cannot know why you on this journey, you can only hope that brings a greater awareness and insight into life’s essence. ✨🥂✨
Thank you for your comments. Regarding nutrition and supplements, we both shop and eat organic (whenever possible)and take many if not all the supplements you list. My wife is a certified nutritionist and health coach and I am so thankful for the information she shares with me. It has been my anxiety that is major issue and she has unfairly been the recipient. I need to find a way to control it and preferably without taking medication
Lithium Orotate- 10 mg is a good place to start to get a grip on anxiety, if you do not want to go the way of drugs.
My spouse in her last nine months in the work place was on a regular dose of 20mg per day. I am not too sure why we lapsed in the last three months of her employ, but she retired in a very anxious state.
It became very obvious in the first week and then the scramble to get hold of this supplement to bring some calm back into her life.
Lithium makes me a bit nervous as for every positive thing I read, there seems to be a negative one. I've got hopes for Psilocybin although it will no doubt be ages before we have a chance at it in the UK. Medical cannabis is strictly controlled to the point of being virtually impossible to prescribe. Not sure a magic mushroom derivative will be rushed through either. Sorry that turned into a rant.
My wife has been very supportive. Im one who prefers to suffer in silence so I offer her every choice to do what she wants and be 'free'. I'd be upset but understand if she ever left but I'd more upset if she stopped being a friend.
But why worry about what might happen. You can end up bringing on things that might not otherwise happen. Live for the day, try and show her some smiles and learn to laugh at yourself.
Your state of mind can definitely màke you worse.
There are many who live many years with mildish symptoms.
Thanks for the response. My wife and I have started having that talk, one where we live on the same property but have a small cottage in the back where one of us can ‘get away’ so to speak and I would have a part time caretaker. We try to not look too far ahead but it is hard and yes, my symptoms may never get worse and that’s what I hope for
I have had diagnosed PD for 20 years and my wife of 55 years is my caregiver. She did not sign on for this job, nor was she trained for it but she does a very good job. I try to give her as much freedom as possible to have some kind of life. One thing that is very help full is our local Parkinson's support group that is attended by both men and women patients and caregivers that meets every month. Most PD patients are men and most caregivers are women , so the caregivers also meet once a month at a lunch women only. She has formed friendships with women caregivers who are experiencing problems same as she is and I know it has been helpful.
PS
As I said , most PD patients are male and most caregivers female but I have seen more caregivers that are male bailout . Some times people can not and do not want to, nor are they suited to be a caregiver and someone else or some other arrangement must be found. The PWP must set the caregiver free to do what they want and need to do. Difficult but no ones fault really.
PPS
One more thing and I will shut up
There is an inevitable ending to life but there is no inevitable end game for PD. We will not all turn into senile burdons who can not function on our own. PLUS there are many positive things happening in PD treatment , enough to make us very optimistic . There is hope .
Bydureon (a.k.a., Exenatide), a repurposed Type 2 Diabetes drug, is now in third-stage trials in UK for stopping Parkinson’s in its tracks — results expected 2024. Testing — mice, open label, double blind — has been going on since 2010 and it has been positive every time.
According to a very sensitive test, Homeostasis Model Assessment for Insulin Resistance (HOMA-IR), 2/3 of Parkinson’s patients are supposed to be insulin resistant. IR may be treated with Bydureon (Exanatide). Just an angle that might get us one step closer to getting Bydureon.
South Korean researchers have learned how to dial our cells back to stem cell stage -- and are now administering monkey stem cells to parts of their brains that are short on dopamine producing cells -- with the hope they will fill in and take over the job.
Started this before with stem cells from other monkeys and had some success I think until local immune systems attacked foreign cells.
I’m going to take a risk here and mention the factor of spirituality. Further, I’m guessing you (and your wife) are a loving, generous and wise person and have a good spiritual foundation because you are a Father of 5! For me and my husband, PD has challenged our faith. It’s a real spiritual workout! It’s like wrestling with God. I pray a lot more than I ever did. Not just praising, thanking and then presenting a list of petitions, but also listening for God through Bible, Church, small faith groups, rosary, daily Mass, writings of great saints. This listening has led me to thank God for PD (unbelievable!). Yes there’s a ton of suffering, but suffering leads to real growth in relationship with God who is so wonderful and amazing. I sometimes feel bad for my good hubby who has his own health issues, and my kids who may end up with responsibility for one or both of us. And I get mad at God who is letting us go through this. But then I ask myself “would I deny them this opportunity to get closer to God?” No! And I ask “Did God let his own son suffer horribly for a good reason?” Yes. And how did God’s Son get through it? The answer is prayer, good friends and relatives, faith, hope and love. And is the result going to be fabulous? If I do it with God the result will be love. So Yes, I expect the result will be deep deep love forever. Thank you Jesus (God)! Praise your holy name.
It remains a complicated story Gallowglass. How did that poor son of God get through it when he hung on the cross? Probably not with 'prayer, good friends and relatives, faith, hope and love' as you say. Sorry, but we don't call it not without reason a agony, how appropriate. Nice if you are assisted by your partner, but you will really have to find your way around it yourself.
Nice reply! The Bible tells us He prayed on the cross . The words “my God, why have you forsaken me” are from a psalm. He did good loving works on the cross. He forgave the bad thief and saw to it that his mom would be cared for. He had faith and hope on the cross “Father into your hands I commit my spirit “. He had friends at the foot of the cross. (Two Mary’s st John). He got through it and ROSE from the dead. All we need to do is pick up our cross, love Him and follow Him.
I agree it is a spiritual workout. Being someone who has relied on his own strength (pride) to handle adversity, this illness and the ability it has to drag those closest to you down as well has been a challenge and made me slowly realize that I/we cannot do this on our own strength. And as hard as it is to accept, this PD and my journey will benefit someone else somehow
Get a spiritual dimension to it: you and your wife will surprise yourselves at how good you’ll feel in adversity if you’re united and each putting the other first, I don’t claim that I ever wanted PD but have to admit that some of my better moments as a person have been evident amidst it’s travails. Similarly, my wife has been a rock and I’ve grown to love her more due to the circumstance.
This trial has shown us how strong, or as the case may be, how weak our faith has been. It has certainly been a wake up call. There has been much anger and asking why (I am aware of the verses that answer the why) and I/we are slowly addressing our faith issues
I sympathyse completely it is hard to imagine how hard can be if you haven't got it my wife has totally lost patience the falling which is daily dyskinesia and all the other shit that accompanies this condition you have to k eep fighting or it will control your life all the best
I am just over five years since diagnosis and I am pleased that my experience is nowhere near as bad as I expected. I realize that everyone has a unique experience and my situation can change at any time, but as I said in a recent post, "doom and gloom are not inevitable."
My husband was diagnosed 18 months ago an like your wife I go along to medical appointments and research as much as I can, we have a great local PD group but don’t attend all as it can be upsetting seeing what the future could hold. However everyone has different symptoms, stages and it doesn’t mean you will be like that. I found the best way to cope is to remain positive. My husband attends the gym 4 times a week, does table tennis, boxing, tai chi, walks and cycles.. exercise is the key! Another thing is to socialise with friends as much as possible, go out with your wife even just for coffee and book holidays. None of us know what’s in store for us so just make the most of every day. Depression unfortunately is part of PD my husband takes a tablet which has helped. Maybe a tai chi class, Qui Gong or yoga could help you relax. I wish you both all the best.
Your husband’s exercise regimen looks exactly like mine except I run instead of cycle and that helped immensely . I need to do more meditation however and restrengthen my faith
Hmm. I guess my advice would be to appreciate what you have. My situation is quite different. I was diagnosed 8 years ago and within a year of that event went through a divorce (my wife left with another guy) and lost my career (I was squeezed out, in the nicest way possible, under disability provisions of our partnership agreement relating to long-term illness with cognitive implications). I spent the next 5 years raising two teenagers as a single father and have been on my own since. It doesn't seem very likely that I'll find another partner given my situation, so in addition to not having had a "caregiver" throughout this initial 8-year period it is unlikely that I'll have one in the future, so whatever lies at the end of this road I'll probably face on my own.
I don't say any of this to complain, but merely to get to this next point: even with all of these events that could be described as challenges, I realize every day how lucky I am. We live in an age of remarkable abundance, safety, and comfort. Technology (including medical technology) is astonishingly helpful. If you are fortunate enough to have saved enough to get by life is pretty darned easy and comfortable compared to what most humans have experienced throughout history, especially humans with a chronic illness. You also report getting some benefit from therapy, not my thing but if it helps you that's a great bonus on top of all the other good news. PD is a bummer but you have an awful lot of marks in the "win" column, too.
Long way of saying, in response to your original question ("What else should we be doing?"): Don't let the disease drag you down. While it certainly has its challenges, it is not the end of the world. Plenty of people handle it on their own; you can certainly handle it together. Take a step back and realize that while it's a challenge, it's a manageable one.
" It doesn't seem very likely that I'll find another partner given my situation "
not so old one , many, many people find friendship, companionship, and mutual benefit from new relationships into their 80's. You probably have much to offer a lonely women . Look at old friends who have lost their husbands . I think that you have assumed too much. Also you may be looking i n the wrong places if you are actually looking. Try the local gym for multiple benefits .
Thank you for your comments. One bad habit I have had is to look at my circumstances from a ‘half empty’ point of view. I need to flip that view point to ‘half full’
Sounds like you're doing all the right things. We're all getting older together too and that's a tricky trip in itself. I take meds for anxiety though and found that helpful, my wife agrees. Psylocibin was nice for me but didn't change anything long term unfortunately.
Feel strange since I don't know you but my advice for anyone in the PWP/caregiver partnership would not be to offer the partner "freedom", instead trying the positive tack, letting them know they're great and pointing out your appreciation when they do something helpful. Makes you both feel better
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