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New normal

Bladder control

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Well, where do I go?

This  topic....bladder control... is commonly discussed in senior circles.  Yet, today my heart is heavy after speaking to DH who is 2500 miles away about he wetting his pants while sleeping. This is no big deal..it happens to everyone...senior or not...PWP or not...I get it.  I don't need a positive reassurance why this is no big deal.  It IS a big deal to DH.  My cheering from the sidelines and chanting positive mantras dim while consoling an alpha male. He is at his sister's celebrating his father's 98th birthday.  He had a full day of air travel and is tremoring nearly non stop, and has balance issues. I think his relatives are seeing PD in its true form rather than hiding in the shadows of judgement and speculation.  I suggested he take additional l dopa as environment dictates.  As anyone touched by PD, his voice had a ring of fear....again, my heart is heavy. Repeatedly. I counseled it may just be because of his exhaustion..a fluke.. or it  may be something we need to add to the list.  

DH has deteriorated quickly since his dx March '16. Neurological signs atypical of PD are increasing. I am leaning more in agreement with neuro DH may have MAS P.  As we look back he has had atypical neuro symptoms for over 30 years. We can't determine where he is on a timeline.   Also, symptoms are reaffirming he may have Agent Orange syndrome which can be the reason for any number of things.

So my question to CG's .....is there any correlation between bladder conntrol to any specific timeline of progression?  Is it something that can happen at any point in time? Is it a signal?

This may be a single episode since he has had an exhausting day of travel.  I think I am having  a knee jerk reaction to reality....and there is no one I can talk to,,,not friends, family...just had to get it out of my system.

Any comments?

NN

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I have never read anything about it being related to a stage, it is common in both men and women.

Coach T

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NN...what a great question to ask Dr.Okun..I like many of us would like to read his answer.

Sorry to hear your DH is having such issues. I know how you feel. When my DH was going through his bladder cancer he had an accident or few and it's very defeating indeed.

Best of luck to you both.

D

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My husband had several accidents several years ago and we made the decision that he start using Men's Depends.  He's been using them ever since-no more worries about wet pants. We actually should have done it sooner rather than later and avoided those embarrassing situations.  It's such a benefit to not have to worry about loss of bladder control.  It's Parkinson's, not a reflection upon the individual.  Hopefully your husband can make the adjustment;  it should hopefully help reduce his stress level and let him get on with enjoying the visit.  

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I don't think you can correlate it to a stage.  I do know from experience that stress is a factor. 

 

What is MAS P?

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Incontinence is something that can happen to anyone anytime for many reasons. However for my mom it was PD related for sure and luckily with her dementia she never refused wearing pull ups because she doesn't know any difference from regular panties and she will go whenever so it has to be done.  

It is always a big deal because it's not something that has been happening for long so the shock is not wearing off yet.  We see what aging and disease and stress can do and it's never pretty.

 

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Murray

in answer to your question...MSA is multiple system atrophy.  In short, according to our neuro ,when PWP has neg DaT scan, clinically presents with PD, responds to l dopa for some time...AND has orthostatic hypotension...it is more likely than not MSA. This is assuming other autonomic things have gone awry.  (Google it)  DH has multiple bilateral neuropathies atypical of PD...more typical of MSA. He is progressing quickly.  We've applied to VA...have two docs dx of PD...he was 200 yards off shore de militarized zone in Vietnam...no fresh water...used sea water for everything. Probable cause is Agent Orange.

I have neg DaT scan. Serious autonomic system weakness with variable BP and orthostatic hypotension.  As rare as it can be, neuro says it is more likely than not we both have MSA.  He with MSA C.... me, MSA P

Discovery

Thank you for your response.  I prefer to ask questions of the CG's who have seen it all.  They have proven to be patient and understanding with we who are underinformed.

whenever  I feel fear or apprehension, I talk with them, and always feel safe. They have carried a heavier burden than I, and surpass everyone by their kindness.

NN

 

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On 4/24/2017 at 6:11 PM, carruthers209 said:

My husband had several accidents several years ago and we made the decision that he start using Men's Depends.  He's been using them ever since-no more worries about wet pants. We actually should have done it sooner rather than later and avoided those embarrassing situations.  It's such a benefit to not have to worry about loss of bladder control.  It's Parkinson's, not a reflection upon the individual.  Hopefully your husband can make the adjustment;  it should hopefully help reduce his stress level and let him get on with enjoying the visit.  

Thank you for your reply.  Ya know, aging is a transition itself...so many of the things happening could be just getting old.  DH is (was) a very strong man and prideful. Now, he has urgency so he must urinate immediately...he would kill me if he knew I was revealing this...but we have learned roadside stops are no longer embarrassing...just a fact of life. We've checked for prostate issues..no problems.

carruthers...your thoughts?  Did u see urgency occuring before the accidents?  Is your DH a senior?  Do u think this is PD related?  Now, if neuro is right, then this is more,indication of an autonomic system weakening.  However, DH's father is 98 and his brother passed at 102 after a day of dancing....so age may have less significance.

I really appreciate your input...DH is rapidly deteriorating....and has different symptoms from me...so it seems our world is being consumed with PD while we continue to resist it.

Thanx for the support.

NN

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My husband has had Parkinson's for about 17 years.  He's 73 years old.  Having Depends has been such a benefit.  We can now travel and not having to worry about urgent needs.  I see that he needs to use the toilet a lot more frequently at home and we make extra stops while taking trips.  Urgency is just normal now.  Parkinson's is gradually taking more and more of his life-he's having cognitive processing issues but only I notice it, his walking is becoming very impacted-freezing and stutter walking is really bad at night especially when he has to get out of bed to use the toilet.  He wears his Depends on a daily basis-no more wet pants.  I worry about when he will start wetting the bed and we'll need extra absorption but then it'll get worse so sometimes we just need to be thankful for where we are now and not dread the future.  I am so sorry you both have Parkinson's.  That is such huge unfair burden.    If you think DBS might be a possible choice in the future, the neurologists are now promoting it at an earlier age because the outcomes are more long-lived and beneficial.  My husband had a DBS operation and it was almost miraculous.  He wasn't restored to his pre-Parkinson's state (which is what everyone hopes).  He even got his smile back-hadn't seen that in a couple of years.  His neurologist never suggested it-we asked for it and then his neurologist put the process in motion.  It takes months of testing, assessment, and waiting for the surgery so starting earlier is also a better plan.  I see where your husband is waiting for the VA for disability.  My husband is on VA disability.  I hope that is in place for you because the financial help is amazing.  I see he is taking 8x per 24 hours.  This caused dyskinesia in my husband which was helped by Amantadine for several years until even that wasn't working and then DBS was the next logical step.  Best wishes to you both-Christy

 

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okie-doke.  I posted that link mainly for the brands that this site seems to recommend thinking that it might be helpful for some who have reported problems re: the issue with those they are giving care to.

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I hope you didn't take it as a criticism, Linda.  Just a heads up that one of the brands I have used for DH is almost half  as much in price on Amazon.  It pays to price shop.  Thanks for the list of recommended brands.

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Oh, I agree totally, genden.  I should have made clear in my post why I posted what I did. 

I have found the same thing as to price shopping, both on line and in brick and mortar stores.  Shopping for groceries is always a journey, as I go to several stores to get the best prices on things that I can.   It takes a little longer, but it's well worth if the stores are all within a reasonable distance of each other.

Thinking of you and praying for you and your DH in this very difficult time,

Linda

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My husband has had Parkinson's for 25 plus years and started to have issues a couple of years ago. His urologist put him on Trospium and it has really helped with the urgency and accidents..

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On 5/16/2017 at 10:10 PM, carruthers209 said:

My husband has had Parkinson's for about 17 years.  He's 73 years old.  Having Depends has been such a benefit.  We can now travel and not having to worry about urgent needs.  I see that he needs to use the toilet a lot more frequently at home and we make extra stops while taking trips.  Urgency is just normal now.  Parkinson's is gradually taking more and more of his life-he's having cognitive processing issues but only I notice it, his walking is becoming very impacted-freezing and stutter walking is really bad at night especially when he has to get out of bed to use the toilet.  He wears his Depends on a daily basis-no more wet pants.  I worry about when he will start wetting the bed and we'll need extra absorption but then it'll get worse so sometimes we just need to be thankful for where we are now and not dread the future.  I am so sorry you both have Parkinson's.  That is such huge unfair burden.    If you think DBS might be a possible choice in the future, the neurologists are now promoting it at an earlier age because the outcomes are more long-lived and beneficial.  My husband had a DBS operation and it was almost miraculous.  He wasn't restored to his pre-Parkinson's state (which is what everyone hopes).  He even got his smile back-hadn't seen that in a couple of years.  His neurologist never suggested it-we asked for it and then his neurologist put the process in motion.  It takes months of testing, assessment, and waiting for the surgery so starting earlier is also a better plan.  I see where your husband is waiting for the VA for disability.  My husband is on VA disability.  I hope that is in place for you because the financial help is amazing.  I see he is taking 8x per 24 hours.  This caused dyskinesia in my husband which was helped by Amantadine for several years until even that wasn't working and then DBS was the next logical step.  Best wishes to you both-Christy

 

Even Depends don't keep my DH dry.  I am so thankful for bed pads or I'd be cleaning sheets almost daily.

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I use Tena Pull-ups with two extra inserts at night. My incontinence is worse when laying on my back but still occurs when laying on my left side. I seem to remember a recent response from Dr. Okun that incontinence is very common in PD. Stress makes it worse, I'm sure.

I do not need anything during waking hours unless I know I'm going to be unable to get to a bathroom.

Your DH may feel humiliated right now. As he adjusts to this particular "new normal" he may come to acceptance. The best you can do is reassure him that you love him no matter what symptoms h develops.

It's hard to see a loved one in any kind of distress. It's a helpless feeling.

Dianne

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