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…[Read more]

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…[Read more]

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…[Read more]

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 thing…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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 co…[Read more]

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 thi…[Read more]

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 ‘…[Read more]

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.

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.

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.

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…[Read more]

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.

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…[Read more]

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 fa…[Read more]

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….

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 s…[Read more]