[JB]

Hi Sherman and Tony,
My husband has PD, Young PD, is 60 now and has had it close to 30 years, slow progression but he has a lot of falls now, has DBS also, but I am sometimes terrified with his driving… “S’ing on the road so over the white lines on the curb side, always right close up behind cars and lots of other things. I really hope that when he decides it’s time, he takes the responsible path you have done.

I think it’s going to be an awful argument as he sees nothing wrong with his driving and that it’s all just style… I really don’t think so.

I will show him this post at some stage and hope that he will think deeply on whether the time is coming soon because what you did for your wife, by stopping, to put her mind at ease is absolutely top notch in my book. All the best.

[JB]

Hi Toni,

My husband is 59, Young Onset PD….. and I agree it’s interesting that it never comes up in conversation either with our Neurologist on the irregular visits we have or with anyone else (which is normal I think).   I do update her how things are going though with our sex life, and then we discuss, so it is nice to do that.  She has suggested some medications to help in the past, but we really don’t want to add more meds to an already over ‘med’d’ situation.

I have found over the past 20 years, that our sex life has become less by quite some.  What is part of normal aging vs Parkinsons is an interesting question though?  I’ve been encouraged and discouraged by the way Parkinsons OR the meds cause different issues with our sex life though.

Also you mentioned Rejection… that definitely for me, being the non-PD in our relationship, was really difficult for a time until we started to really deeply talk about how things affected him, physically and mentally…. and me putting away my precious ego I suppose, thinking it was me, when it really wasn’t and isn’t.

We don’t think Sinemet CR 200/50 or 100/25 affects it.  Anti depressants definitely have an effect so he is not on any now for 7 years.  But as much as we feel the PD meds don’t interfere particularly with his interest in sex, over the past few years the cognition does.  Distraction is a huge thing for us, where he needs to be fully ON and focused.  Spontaneous sex you would think would be out of the question, but in reality it’s the only way for it to happen, as in when he is ‘ready’ mentally.   BUT in saying that, I have been able to stimulate him to be able to have sex even when he has been fast asleep, so potency is not really an issue.  Just patience.

The biggest issue is ‘staying power’ and physically nothing going on even when mentally he is interested.   The body just does not want to co-operate.  😉  Again patience is THE only thing to do for us or wait another day.

As I mentioned about aging and spontaneous sex – well that’s not <span style=”text-decoration: underline;”>always</span> so easy for women to just be ready, well I have found that anyway.  Our bodies change after it seems age 50.   That was a bit of a shocker, it seemed to be like a light switch.  The whole saying “if you don’t use it you lose it” seems to not be a phenomenon after all darn it.

Anyway – there are ways around that as we all know and it works well… but as I say, I feel, or we feel that if the desire is still there, and the love then there is no reason a good healthy sex life cannot be achieved.  Definitely not as many times as when we were younger, but hey, it really doesn’t matter.  One intimate moment can be enough, and should be enough, whenever that is, when you love someone and at some point there could possibly be no more actual ‘intercourse’, and if that happens, then we will deal with it at the time.   Good old fashioned talk goes a long way too, as does just touching and holding someone you care for.  So many options in reality isn’t there…

The other thing that causes an issue is the ACTUAL PD – the movement degeneration.   Getting the right movement started being an issue, so then of course you need to get more adventurous so that what you are doing is not putting undue pressure on the other to perform… Probably high wire acts are out of the question for example…. sorry only joking… it can be a hilarious subject actually can’t it, if someone can talk about it uninhibited).

I will leave it at that… I’m not sure if that helps at all…. but I can only say –  never give up, and also never put pressure on the other person, that definitely doesn’t help.. understanding and patience and BEING ABLE TO TALK ABOUT IT.

P.S.  You haven’t mentioned whether you are married or on your own, but I hope my answer covers both.

[JB]

Interesting thought and better than I think my husband does.  He stores all his meds in one container.  Yes it makes it easy for him to get at, but I am really concerned that intermingling the meds and the wearing on each other will cause issues.

He has tried using one of these daily med keepers, so all the doses for each time in the day are separated and it looks good but totally useless in that he doesn’t use them in order, so in reality you can’t really tell if the dose is taken or not.

To note on this, he is only 59, and Young Onset PD, and in control of all his functions, most of the time, albeit cognition is up and down with ON/OFFs…..  so I have no idea what a good solution is for storing meds, apart from me giving them to him from SEPARATE med containers 🙂

Would love to hear of other alternatives.

[JB]

That’s wonderful to hear… very pleased you have family around and support and are enjoying some awesome outdoors fun. Bit of a shame your posting is not working. I have no idea what to tell you on how to get that to work, except maybe trying on a different computer or cell phone. Computers – they are wonderful and a scurge.

[JB]

I totally agree with you Richard on the lack of help regarding the non motor issues. I really feel my husband would benefit greatly from core strengthening and ways to help muscle strength so he doesn’t fall. He is really tall and falls really hard, but he wears knee pads which helps immensely. But the failing strength in the legs and core, even though he cycles daily is very worrying.

[JB]

I agree with Bruce that Estrogen products used for a few weeks can help some people. We have found that a product called Sensi-lube is fantastic. It’s like natural fluid / excretions that we as women normally have when younger. I recommend you try if you can get it. Normally from pharmacies or online around 7.00 Euro per item. Use lots of it on whatever or wherever you need…. Good luck.

[JB]

Hi Bruce, I’m sorry to hear about the loss of your beloved recently. I won’t even try to imagine how despairing that must be. I worry about that if something ever happened to myself, how my husband with PD would cope.

I thought reading your response about your Neuro having little interest in the subject was sad. It’s such a huge part of all our lives, or was, so I’m really sad your Neuro is not comfortable to speak about it with you, or at least recommend someone to talk to about.

I’m so glad to read also that your symptoms are very well controlled. What a gift that is.
Keep smiling – and researching the subject is all I can say. I have not found anyone answers to the issues we have ( I wrote a large article above last year on the intimacy side) which you may have seen or not. The whole change in most women also with or without PD is a shocking thing to encounter. I mean who would have thought at the age of 60 that things could change so dramatically to ones body without being asked first about it. 😉
But Estrogen as you say above to Darrell I agree helps some people. I hope you have a good support network around you now your wife is not with you. x

[JB]

Hi John, WOW – I must say I was beginning to think I was imagining everything and that it was me not being understanding enough. I THANK YOU wholeheartedly for your post. My husband happened to be sitting next to me and read it with me. It’s exactly how he is when ‘ON’. I wonder why it happens?

It’s really heart warming that you recognise that this isn’t who you are as a person. My husband has said that as well, but it doesn’t change the fact that yes – he is ‘not so nice’ in this state. I am hoping he will take on board what you have said.

I send you big hug and wishes, to your wife also…. it’s the deep affection and love we have for our husbands that keep us going and a post like this, amazing !

[JB]

I can only agree Kathleen that my husband definitely finds projects, or more than one thing at a time to have to do, totally difficult. A To do list has been impossible, so I do them and try to help that way. I find it so difficult when he changes after taking meds, from a kind caring non confrontational person to a more argumentative person as he gets more Dopamine to the brain.
He is clearer, more articulate which is great, really great, but also fixated and concrete in thought so as I said above, difficult for decision making if there are differences of opinion.
I wish you well, it sounds like the Psychologist you have is great.

[JB]

Hi Therese, I have wondered over the past week if the degradation into arguments is actually partially caused by the loss of things that are important to him or your husband. The PD takes and takes from them, and from you and I also. The last 18 months has been seemingly faster progression of the PD I feel. His executive functions are seemingly taking a hit, maybe it was after catching Covid even that the brain fog and short term memory took a hit, not sure. Stress and anxiety are certainly an issue for all of us and the worst thing for PD people I reckon. Unfortunately I don’t think there is an easy answer as to how to help. I am finding I need to listen acutely to him when he speaks as I can determine where he is at cognitively and decide what I want to discuss of importance at that time. It’s easier to discuss

On and Off times explanation: When a person is OFF. This is when the person has run out of meds in the system. They start ‘wearing off’ from being ON. ON is when they are fully medicated to the optimum – full of Dopamine so to speak – when the meds are ‘full’ in the system. For my husband the Sinemet CR 200/50 and Sinemet 100/25 are his meds. WEARING OFF is the time between peak ON time and OFF. The meds are slowly being used and running down to near nothing. It’s not optimum to be totally OFF but it’s a difficult thing to determine WHEN to take the next dose. Some people will take doses at specific times each day, but the trouble with that, in my husbands case is he could easily then be over medicated which is just as bad as being off for him. Dyskinesias start in the head and neck area…. so there is no point taking too much Sinemet for him. Hope that clarifies a little. Sorry – not so great a clarifying.

[JB]

Thanks Linda, sorry I replied on another persons post so have reposted this to you. That was a very well written reply and it responds well to what I have said. Yes I definitely need to be more patient and to time things so that the corrosive moments do not get to that stage of his ‘mood’ or ‘mode’.

It’s been a few weeks onwards now, and things have been a little better and I think its because he recognises the issues when he is fully ON and we are just being more tolerant with each other, especially with not overloading the situation, any situation with too many questions or deep discussions at that time.

My husband actually does like you do.. he tells me now when he just can’t discuss something and it’s very easy for me to accept and back right off. PD is such a disturbing stressful thing for anyone so it pains me to add to his stress, so we have to make this better and it feels like we are starting. What a learning curve though, after 2 years probably of this…. I can end by saying I hope it gets better, the modes, but I think it won’t.

His meds are well controlled for the time being with ON/OFFs but they still happen unfortunately. It’s a forever changing thing… but mainly every 4.5 hours. Thanks again Linda and sorry for the tardy response….. been a bit mad over Christmas. Happy New Year.

[JB]

Hi Rosie, I used to feel like you in that I didn’t understand why the anger and frustration was being taken out on me until I started thinking like Linda says above…. it’s not ‘his’ fault. It’s the PD for most of the issues that we are having.

I have just started thinking this many times things escalate and it helps immensely and makes me, I don’t know – feel more humbled in our relationship I think..

[JB]

thanks Linda, that was a very well written reply and it responds well to what I have said. Yes I definitely need to be more patient and to time things so that the corrosive moments do not get to that stage of his ‘mood’ or ‘mode’.

It’s been a few weeks onwards now, and things have been a little better and I think its because he recognises the issues when he is fully ON and we are just being more tolerant with each other, especially with not overloading the situation, any situation with too many questions or deep discussions at that time.

My husband actually does like you do.. he tells me now when he just can’t discuss something and it’s very easy for me to accept and back right off. PD is such a disturbing stressful thing for anyone so it pains me to add to his stress, so we have to make this better and it feels like we are starting. What a learning curve though, after 2 years probably of this…. I can end by saying I hope it gets better, the modes, but I think it won’t.

His meds are well controlled for the time being with ON/OFFs but they still happen unfortunately. It’s a forever changing thing… but mainly every 4.5 hours. Thanks again Linda and sorry for the tardy response….. been a bit mad over Christmas. Happy New Year.

[JB]

Mary Beth, my husband is really badly troubled by soft voice.  LSVT he has done and it hasn’t helped him at all.  I think he probably didn’t put enough effort in with it, but he is only just turned 60 and had PD for 25 years now since dx.  He can certainly sing loud and speak out loud when he puts major effort in, but as soon as he goes to converse its back to less than 40db.  It’s impossible.  I spend my days asking for repeat, speak up… it’s incredibly frustrating for us both.  We do speech training at home every day, but so far nothing really helps alot I’m sorry to say.  DBS we found at first helped with tweaking the Groups, but now not so.

[JB]

So many incredibly helpful posts on here. My husband had DBS in 2012, it changed his life as well.  He is 60 now, so young PD when he was dx.  He has barely ever had tremors, and he had DBS to the GPI part of the brain, which helps more with dyskinesias we were told.  Not such a downgrade in medications.  We feel he has more falls now, but this could easily be progression as DBS does not help gait.   He didn’t like particularly the operation itself, but he wasn’t in any pain whatsoever throughout.  He also has Medtronic implants, and a Boston Scientific rechargeable battery.

[JB]

Roy, I relate totally on what you have said regarding in reality, putting yourself where your other half with PD is at.  I am working hard on doing this, because we tend to forget that ‘patience’ is oh so necessary with people with PD.  I am a very impatient person, but have been learning in leaps and bounds that ‘patience, understanding and ’empathising’ with each situation is the only way for calm.  Oof what a learning curve……  you DO  ‘reap what you sow’..

[JB]

Great reply Gil, I totally agree with humor and hugs…. sometimes nothing is needed to be said.  I could definitely try to do better on that with my husband, more laughter, more smiles….  making life lighter instead of controlled by the ‘beast’ so to speak.   Plenty of JOY in each day absolutely.

[JB]

That is identical to how my husband does his doses…. has to up 1/2 or 1 tab ER or IR when doing cycling or exercise.   Works well…..  He had DBS in 2012, not to the STN area but the GPI so his meds reduced a little in the beginning but now are back up to the same doses, if not more unfort.

[JB]

Agree Jo,  senna can be harsh.  His neurologist said what he is taking is fine and he keeps to a certain amount, a pinch and a half twice per day  🙂  Good luck with the other options…. I have written them down as well, in case we need to try something different along the way.

[JB]

Haddon, Sandra, David,   at specific times also my husband gets depression and anxiety together.  If he falls it brings on both…..along with shortness in breath at night which also brings on anxiety, worry, normally when meds are nearly worn off.  The only thing that makes it better is fully ON meds.  Also exercise (riding his bike) makes him far less depressed.

He has DBS, now 10 years which controls VERY well dyskinesias.  He never had tremors.

[JB]

Hi Richard, my husbands falls have gotten a lot worse and talking to him from behind is really bad, but unfortunately DBS has not helped with falls at all, in fact it seems to be worse, and is probably progression.  We have no answer yet for how to make falls less except I catch him or hold his hand out which helps steady him.

[JB]

Hi Jo, my husband is 60 now, young onset PD 23 years ago… he started struggling with constipation about 10 years ago and in the last 8 years has started on Senna leaf tea leaves along with a fruit tea (non caffeine) each afternoon and night time before bed… it keeps the constipation at bay so he goes every 3 days without having to use a heavy laxative.  Senna leaf being natural.  It is an irritant so that is how it moves things along so he takes as little as possible which is 2 teaspoons approx per tea twice daily.  In the last 2 years we have added a stool softener from the U.S. called Colace without laxative in it.  It’s also been fantastic and he takes 1 in morning at dose time and 1 in evening at dose time.  He does meds 4 times per day normally.

[JB]

The same for my husband Fred, falls are a big thing, walking through a tighter space, or walking through an open space.  No rhyme as to what causes it.  And as soon a he is on the deck, he stands back up again immediately and then falls again…. stubborn to the end.  Cane’s don’t work for him either, as like you he turns or spins around when a fall starts so it doesn’t help.  Even hiking poles, one in each hand don’t work….  🙁

[JB]

I think that is the thing Marie, isn’t it…..  there are so many amazing ways to connect, it doesn’t have to be purely sex, as laughter is absolutely one of the most amazing stimulants in my opinion.   It’s how my husband and I met, through laughter and smiles….Ha… nice thinking back on those times and realising how important it still is….