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Topic What is inevitable? Need some honest input Go to previous topic Go to next topic Go to higher level

By jcoff012 On 2015.01.06 14:48
Since dealing with so many health professionals because of my Mom's declining health (non PD). I am worn out and spending a lot of time pondering, researching, etc.

To that end, and after reading so many past posts, I would appreciate input as to our future with PD. You see, although we are entering our sixth full year after dx, Carl is still highly functioning, takes very few meds at low dose, and has a myriad of small problems with tremors, obcessive behavior, drooling, etc.

But, would someone tell me if there really are issues ALL PWPs face as the disease progresses? For instance, is it a given he will have dementia, be incontinent, freeze? Or, is PD a patient specific disease?

I fully realize that no two people are the same or are at the same stage of progression, but the course of the disease is weighing heavily on my mind.

After being told my Mom HAD to be incontinent because she was 95, I had to call for a medical conference to prove she was not and COULD move into assisted living when necessary...this just happened, and is why PD issues are at the forefront.

Thank you all ahead of time. You know me by now...just curious and anxious for answers from accurate sources. Hugs, Jane

By brainstorm On 2015.01.06 21:32
With my mother, she was not physically incontinent but the logistics of getting her to the bathroom sometimes took longer than she could hold since she was not ambulatory. Caregivers do the best we can but when the body slows down physically and the meds work over time, incontinence is a given, and can be both fecal and urinary. For example Regular Sinemet always made my mother suddenly need to go void but we could not get her onto the potty in time sometimes. So whenever I gave it to he, I knew that within 25-30 minutes she will need to go to the bathoom so I would just plan for it and put her in before she asked, that way we didn't have accidents as often.

Dementia only affects 30% of Pd patients, but again the meds as time goes on work less and hallucinations may occur more often and other cognitive changes begin to occur which may not be dementia per say but there may be forgetfulness involved.

By jcoff012 On 2015.01.06 23:00
Thank you for commenting, Brainstorm. My MIL had Parkinson's for over 22 years and my husband is well into his sixth year, so we have lots of experience, but, I guess what I am asking is, other than all we read about stages, etc., are there certain things that are inevitable as PD progresses?

We basically know there will be problems, but are there specific things that every PWP cannot avoid? We seem to be "lucky" so far, and are extremely grateful. But, he works very hard at exercising, therapy, and diet, etc...he is doing all he can, but is he destined to have a certain lifestyle that is common in this disease? Maybe it is a dumb question, but I cannot help but ask.

By mylove On 2015.01.07 00:50
That's a good question, Jane, and one I'd like the answer to as well. Maybe we will ask at our MDS appt this Friday. After all, Ben is so different - he does NOTHING that he's "supposed" to do as far as that goes - he doesn't exercise, we don't take supplements of any sort, he doesn't get good sleep (that's another issue altogether), he drinks, smokes, and consumes prodigious amounts of coffee, and he wouldn't eat if I didn't coax him into it at least once a day. The only thing he does for PD is take medication. At the same time, he has no other medical conditions of note to complicate things, and has been progressing (oh, please let it continue to be so) fairly slowly.

So....if we put all of the outside factors together, I'd have to say that between us all our patients cover the spread. The scientific question is if they are all developing some symptoms in common independent of all the other factors - pure Parkinsons, if you will. The inevitable factors that you're looking to identify.

The next logical question is this, then. Does ANYTHING make a doggone bit of difference in the long run? Diet, exercise, supplements, the next magic pixie dust to come across the internet...? I know that if he didn't have a proven physical response to the medication he probably wouldn't do it either.

I want that sneak peek at the road ahead too. I'm desperate to be able to plan. The not knowing is deadly.

By LOHENGR1N On 2015.01.07 08:56
Ah...caffeine and nicotine, both help Us PWP. Both things Doctors scold people to cut out or lower consumption of. Go figure huh? Ben's slow progression, my slow progression. Maybe they should look at these trying to slow disease progress? You've got two case histories right here staring them in the face. Just a thought.

By jcoff012 On 2015.01.07 18:32
As I said, Al, make that three, although Carl DOES do everything he can...His only vice is Coca Cola, but he has cut that back, too!

He doesn't smoke, RARELY drinks alcohol, walks two+ miles each day in less than 45 minutes, does LSVT exercises five days a week, reads a book a week and works on the computer daily for his mind...

Makes you wonder, Michelle and Al, why PD is so very different in each person...but that begs the original question...

By mylove On 2015.01.07 22:29
It IS bizarre. I really think there are a whole ton of things we don't know. Al...does your doc acknowledge the caffeine/nicotine benefit? We finally got ours to admit there were studies that backed it.

By EachDay On 2015.01.07 22:40
To answer your question from my viewpoint, PD slows down the entire body outside and inside. I'd say that is one trait in common. How that slowness affects the PWP is patient specific. The PWP's own body and other health issues determine how PD will manifest itself. 18 years into this journey and having participated in several support groups and helping my father who had PD and talking to many PWP's who are at all stages, I'm finding my best strategy is to know what is possible to happen, how to help the PWP when it does but best just to deal with what is happening today.

By LOHENGR1N On 2015.01.08 00:57
Michelle yes my Neurologist does recognize the benefits of caffeine and nicotine. I just had a three month checkup Tuesday with Him. I've been going to him since the start of this journey in 1986. We discussed problems that are now occurring (a lot of dystonia in my shoulders, trunk and hips) we're keeping medications levels where they are for now the sinemet doesn't seem to be working as well but it may be a batch in the lower limits allowed I just opened so we'll see. Jane, you know I don't like the stages or scales out there but they will give a broad view of what to expect. As we say everyone is different but also you have to take which medications a PWP is on into what to expect also. We have to read up on the side-effects of each although not everyone will get or have every side-effect you can bet they'll have some or a couple. So that effects what package of P.D. and treatment symptoms we'll have. Yes it is a mess. And I think it is because side-effects of these newer drugs are not viewed as such but viewed as a symptom of P.D. is where a whole lot of confusion occurs not only in our view but the medical fields view as well. My Neuro and I were talking and He said I've done remarkable for the length of time I've had this to which I replied it was because He's a good Doctor, that He get's it If I say I can tolerate what is going on then he backs off and lets it be. His reply was of course no sense in complicating and upsetting it if it is going okay with you, we could run into more problems tinkering than we might solve. And We are each others safty valves too not so much any more because we understand each other and have grown to understand over the years. He's suggested in the past a med but I've nixed it and I've suggested med's and he's nixed them because they wouldn't help what I wanted. It is my wish for every Parkinson's sufferer out there that they can find a great Doctor who understands what being a Doctor is and remembers the first rule "Do no harm" what really struck me about him and it must have been over a dozen years ago was my friend and I both had back to back appointments mine was after my friends and when I went in the Doctor was standing there with a sad look on his face. Me being me asked whats the matter Doc? You look like someone just ran over your dog! He sighed and smiled a little and said you guys are what's the matter. He went on to say I didn't know I had both of you today and back to back. I'll never let this happen again. I said hey come on we're wise guys but we're not THAT bad. He said no it's not that, it's because there is nothing I can do for you both! I can give you drugs as problems arise but I can't cure either of you. I can't stop the disease, all I can do is to watch you both progress and helplessly stand by as you do! That was a special moment a eye opening bonding moment when just how much he cared was shown. So I wish that everyone with Parkinson's Disease can find a Doctor who cares that much about them to be so honest and caring as to share that with them. but I've gone off track here and better close this down for now....... take care, best of luck and hang in there

By jcoff012 On 2015.01.09 22:32
Al, that was passionate and wonderful. I agree..a doctor who cares and truly understands is Heaven sent...and why we drive to San Francisco and spend the night for each visit at UCSF! Or, We drive four hours to Eureka once a year for my annual cancer checkup...and always will...I love both of these doctors and consider them friends. I, too, wish and hope everyone can find such gems...doctors who are compassionate and real...lovely!

By j2motley On 2015.03.12 15:06
I seem to be struggling with the same sort of question. I am the adult child of a PD patient. She is about 12 years into this. Unfortunately she has also developed dementia and struggles to carry on a simple conversation. We are fortunate that my dad has kept her home and they have in-home now 24 hour care because she has developed difficulty swallowing and nighttime incontinence. She can not walk or balance without assistance. Each recent progression of her illness has caught all of us off guard and the deficits have been unrecoverable. I know each case of PD follows its own course, but if these issues are happening, is that an indication that her body is breaking down faster than we realize? I know she is still in there and at times is very frightened. She knows what is happening to her. I just want to be able to prepare myself, my kids and my dad and be there for my mom. This disease moved so slowly for so long...I think we were blindsided by the most recent downturns. Sorry to ramble on. thanks for any input that you all have.

By LOHENGR1N On 2015.03.12 15:59
j2motley, Hi and welcome to the forum. Your question and statement of slow progression then being blindsided by the most recent downturns? Has any new medication been added or have they adjusted the doses of medicine she was taking. (this doesn't have to be in the past week or month, as some of our medications can take several months to build up in our system) Delusions and delirium can often be confused with dementia especially in Parkinson's patients. Dementia starts out slow and progresses slowly over time it doesn't suddenly appear if Your Mom's did I'd look at Her medication and it's side-effects. You've found a great place filled with wonderful, caring people here who I'm sure will post trying to help answer any concerns you have and to help in any way. Again welcome to the forum take care, best of luck and hang in there

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