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Topic stages of parkinsons Go to previous topic Go to next topic Go to higher level

By marie On 2010.08.27 10:53 [Edit]
Hi everyone, just wanted to know if anyone can tell me what stage my husband might be in. He has severe tremors, ridgity, very poor balance and has fallen a few times. He uses a walker in the house and a wheelchair outside, slowness, constipation, oily skin, very low voice. His mind is very good. He was diagnosed 3 years ago but has had it for 12 years. He is 75 years old and also has conjestive heart failure, but that seems to be under control, he also has a pacemaker-defrillator. Everyone has been wonderful on this forum. Its the best thing I have found for caregivers and patients, Thanks again

By karolinakitty On 2010.08.27 12:30
Hi Marie.. i myself do not belive in setting a patient by the stages. Some fit in so many different categories. While it can give you a generalization, a place to look at, you might be disenheartened by what you read.
If i followed the stage categories, and the different things that are wrong with my guy i could place him at stage 4. However, he's only 53 and has a variety of symptoms of later stages and some of no symptoms in the later stages. Each patient is different and each patient progresses at a different rate than the another one. I know that some patients have been whelchair bound for a while , mine isn't and has no heart problems to go with it. All of the other symtoms you mention, are "A" typical of PD, if there is such a thing....
Here's a link to one website that might help you with the stages:
http://neurology.health-cares.net/parkinsons-disease-stages.php

By lvmymom On 2010.08.28 14:31
Marie, if you read through other posts you learn that everyone is different and you really can't catagorize, but you can certainly learn. Staging cancer is a predictor of survival and treatments - but PD doesn't work that way as you will see as you read through older posts. I will guess that you wonder what stage because you wonder what can be done to slow down the progression? I wonder what your concerns are?

I just know when I first starting visiting here, I was hoping for concrete solutions an helpful hints. Well, I have learned many helpful hints and have learned both sides of PD - from the people with the disease and from the people who love and care for those with PD. And mostly I have learned there are no concrete solutions.

Like you, I love this forum too. I hope you visit often and keep tuned in. My understanding of the disease has flourished. I hope you too can find what you are looking for.

By oshroshr On 2010.09.05 21:43
I also wonder what stage my hubby is in. There are so many different symptoms and he tends to be having trouble with the incontinence through the night. I also have his mother to take care of and she is 93; he is only 65.

It seems that he does better but then,,,a bad day. I would like to know stages too

By Emma On 2010.09.05 23:21
oshroshr, if you click on the link at the end of Karolinakitty's post it will take you to an article that describes the stages of Parkinson's. Alternately, you can do a search on the internet for Stages of Parkinson's and that will get you several articles, although they are all very similar in their descriptions of the "stages". You could also ask your neurologist. Remember that these are just a general guideline and everyone experiences Parkinson's differently. For me it has always helped to know what might be coming next so that I can be mentally prepared if or when it happens, but I know that not everyone feels that way. In spite of the fact that I am one of the few people who seems to find reading about stages helpful, and my husband has gone through them in textbook fashion, I do not think of him in terms of a stage. If I did he would be stage 4. Most of the time I just think of him as my sweetie or a pain in the a** depending on the day :)

By Michele On 2010.09.06 07:49
Emma, I also call my husband a sweetie or a pain in the a** dependiing on the day or time of day. It's nice to know that there is someone who knows EXACTLY what I am going through. Hugs to you.

By Cindy Bystricky On 2010.09.06 12:48
First, I ask that you forgive me for being blunt. My hubby is in his 17th year with PD. He will be 71 in two weeks. No other health problems at all. When I asked the neurologist about stages he said they are more for the doctors than for us. When doctors talk to doctors about a patient they have to have some sort of scale to describe the general conditions of the patient. When I asked our internist(who lost his father to PD) about it, he said why do you want to know? I think he knew why! He said to me," When my husband begins to have problems swallowing and cannot eat, that is the beginning of the end. Until then it is all a guessing game." Soooooo, if you are like me and wonder how much more your loved one can take and how much more YOU can take, this is the answer! God bless all of you, patients and caregivers...........

By LOHENGR1N On 2010.09.06 15:19
Cindy, Your internist is lucky he doesn't have me for a patient, after a reply like that I would probably countered, with that logic after you draw your first breath it's the beginning of the end! For a doctor to answer you like that especially after losing his Father to P.D. is reprehensible. I and many others here have had swallowing problems for years and are still around. It's all a guessing game even then. All I can say is it's a good thing your Husband has a Neurologist. As I've said before, we patients and caregivers/partners gain our masters and PhD in Parkinson's and every once in awhile we run up against a medical professional who think because they have a degree we shouldn't question them. Take care, best of luck and hang in there.

By LOHENGR1N On 2010.09.07 10:55
Well here I am just thinking again, looking at and reading postings. Over time one tends to see a cyclical pattern. What are the stages? Mostly I guess it's a sort of where are we question. An overview, as I've said before I don't much care for these stages as everyone's different and with a different "package" of Parkinson's. These scales of rating have many gray areas between them and sometimes med's will help masking what's progressing and one may slip seemingly from a latter stage to an earlier stage, (this could give false hope that they've stumbled onto a cure or that one is getting better). I've also said heck I could be a stage five of getting hit by a bus for all I know. They say with age comes wisdom, I'm not sure about that but I know understanding comes from experience. So, for those looking for some sort of guide posts anything to stop and get their bearings the easiest scale is the Hoehn and Yahr scale;

Stage 1: Signs of Parkinson's disease are unilateral (affecting one side of the body only).

Stage 2: Signs of Parkinson's disease are bilateral. Balance is not impaired.

Stage 3: Signs of Parkinson's disease are bilateral and balance is impaired.

Stage 4: Parkinson's disease is functionally disabling.

Stage 5: Patient is confined to bed or wheelchair.

I hope this helps those looking for an overview, if we look at it like a crude map, maybe it does help. Take care, best of luck and hang in there.


By mrsmop On 2010.09.07 15:40
I have two issues with the Hoehn and Yahr Scale:
The Hoehn and Yahr Scale only seems to address the physical aspects of PD and not the cognitive aspects. A cognitive decline certainly impacts the kind of care and/or supervision one needs.
Secondly, how does and intervention such as DBS affect where someone falls on this scale. My hysband used to have complete freezing episodes, which without the DBS would have made him wheelchair-bound. The DBS eliminated complete freezing. I have read that DBS does not slow the progression of PD, but it seems to reverse many of the symptoms. I do not know where to place him on the scale, and am clueless as to what to expect either short range or longer.
I sure wish I had more answers.

mrsmop

By LOHENGR1N On 2010.09.07 19:51
mrsmop, The Hoehn and Yahr scale is very outdated in the regard you stated I just posted it because it is easy to read and understand. (you want technical? try the one Neurologists use among themselves). One scale or the other isn't going to satisfy everyone. They serve as a broad map or overview of this disease. I don't have the answers to all the questions, nor in my answers can I speak for everyone. We're all different in med's, side effects, symptoms. Heck no one has all the answers that's why our prognosis is Guarded. (To be watched. To be observed.) When a symptom or effect of the disease surfaces the Neurologists react and prescribe certain Medicines to treat that symptom or effect, trying to make it more livable with or gain more control. They might through study be able to see something coming before We can but they can't stop it. All that can be done for the time being is to try to lessen it's impact for awhile. We all know from either the Patients or Caregiver/partners view the shock, numbing blow the "you have Parkinson's Disease" announcement or pronouncement has on Us (just by the fact we're here on this forum).

We feel like we've just been set in a small boat pushed out in the current without a paddle. We feel so alone.........please don't get me wrong with this as I sometimes wish I were alone. But I come online and more are here new ones to take the place of friends passed, trying to make sense of it all. This is a crazy disease, so many struggles involved, so much stolen from Us, so much hurt and pain then when the struggle is over for some we leave behind a maimed broken bitter survivor. Lost in the trying to back to somewhat normalcy. I wish I had the answers, but I'm rambling now so I'll end this post. Take care, best of luck and hang in there.

By karolinakitty On 2010.09.07 20:32
mrsmop, i know what you are saying about these stages.
It's nice to know you have something to look at, to compare to, but i find so many things off balance myself.
That is why i just don't follow them. I can't put my honey on one or another, i can't find a "stage" that is true.
I like Al's analogy about the boat..... you are told you have PD, then you have to figure out the rest....
There are no true answers, there are no true stages and there are no true rules. Each patient is different, no one is the same, no one PD person accepts the meds like the other. We have such a battle to face and in my eyes, we only have each other here on the board to help us "paddle" through this mess. Whether we agree with each other, or whether we take opposite stands, we all are in this together, but we face different roads with our loved ones.
As Al said ... with each passing of someone we know here, there are more to follow. If we can just pass on some of the info we think may be right, or pass on what we personally have experienced then we have educated a whole new set of folks, and so on and so on. Maybe, sometime in the future, folks won't have to come here and ask questions, or get suggestions on how to handle something because each one of us have added something more to the list of:
The caregiver/patient book on PD

By Cindy Bystricky On 2010.09.09 01:03
Lohengrin, I wanted to clear up something. The doctor said,"..swallowing problems AND CAN NO LONGER EAT". Key words are the ones in caps! This doctor is a very good doctor and has known me, as well as my husband, for many years. He knew I wanted to know how would I know when the final stage was upon us! THAT is why he answered as he did. And he also knows our wish is to NOT use a feeding tube. We decided that long ago. Al has lost alot of weight these last 2 years, and so he wanted me to understand the importance of eating as much as he can for as long as he can to insure proper nutrition. Sorry , if I misled anyone.

By LOHENGR1N On 2010.09.09 08:39
Cindy, Thanks for the clarification. I just posted about the swallowing because and I know I'm guilty of this at times of checking the forum pressed for time and skimming through the posts. And sometimes the first thing mentioned is what sticks with us. I just didn't want our caregivers to think that swallowing problems meant it was final stage. I didn't mean to upset you or anyone and I apologize if I did. No problem here, thanks again. Take care, best of luck and hang in there

By oshroshr On 2010.09.10 16:28
I always want to know the stages so I might prepare things in the home or move to a more supportive home for my husband. But once into the third stage, it seems that it is difficult to know what and when to expect another change. It has been a lot of years now and a lot of different doctors. But now we have a movement disorder neurologist who seems to really know the disease. But no info is given on stages without questions to the md and sometimes I just want to feel better prepared.

This is very frustrating just like being lost on a trip to somewhere.


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