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Parkinson's Disease
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Posted 8/13/2012 8:59 PM (GMT 0)
I am new to this site and I have been reading alot of helpful information.  I wanted to ask if anyone could answer a question for me.  I have been taking care of my mother for 5 yrs. she was diagnosed with PD then but im not sure how long she had it before she was diagnosed. In November it will be a year since they put a peg tube in for feeding but she was still vocal and could still help me get her in and out of the wheelchair, the bed and also help me change her diapers.  I had to take her to the emergency room the other day because she had a terrible UTI and the insurance would not cover the medication the DR. perscribed her and he did not respond to the message from the pharmacy to fax another script for her.  Sorry.  So on this past saturday I had to take to emergency because all the sudden she was not helping get in and out of chair or bed and not helping with the diaper changing.  Since that trip she has not been able to speak or barely help me at all.  My question is.  Is it possible for her speech to go just like that and how do I know what stage we are in?  I have a appt. with the neurologist tommorrow but I want someone that is familiar with this to explain this to me or answer my question.  Im scared that I am not going to be able to take care of her and I cant bare the thought of putting her in a nursing home.  Thank you for any responses.
Posted 8/16/2012 4:15 AM (GMT 0)
Hello,

So sorry to hear this. The medication for the UTI could be causing the lack of speech I think. Hospitals give powerful dosages of any medication. They forget to look at the size of the patient and just administer the same dosage for all in my opinion. My mom is wearing diapers most of the time but its only to catch emergencies. I still take her to the bathroom every few hours and make her go on her own. Her legs get weak so she can only stand or walk for 10 minutes or so before she has to sit down. She does not talk much anymore which is the most frustrating part about this disease. Without communication from her I'm just playing guessing games of when she needs to pee or poop. She hallucinates a lot after her medication so she moans and groans and grinds her teeth. I am just helpless watching her in this fragile state.

The doctors are useless because they are more clueless than me. Perhaps your mom will be better after she's done with the antibiotics given to her. I remembered my mom had all kinds of side effects from them. Good luck.
Posted 8/16/2012 4:17 AM (GMT 0)
Sorry but I forgot to mention that UTI itself can cause her to be frail so once she's clean of that then maybe she will be her old self again.
Posted 8/18/2012 2:34 AM (GMT 0)
Thank you Bella I think your right about the antibiotics today the primary told me that the parkinsons might be causing the UTIs and yes it is very frustrating playing the guessing game it would make me angry if I didnt realize that its the disease and not my mom.  I just worry so much if im doing the right thing by keeping her here with me the docs all say im doing everything right but I worry all the time if I am.  They suggested that I get hospice to come in and help me a little bit.  Thank you so very much for your reponse I appreciate the suggestion about the

 antibiotic and hope your right!

Posted 8/18/2012 3:53 AM (GMT 0)
My mom cannot swallow medications whole so she chews everything I put in her mouth. This is not good because she takes Stalevo and it is meant to be swallowed whole. Her neuro had wanted to put a peg tube in her for the medication to be absorbed intact. I said no way Jose and instead have been crushing it for her. It's not as good as the intended way but it's good enough for now. Due to her dementia I know my mom would play with the tube and get it infected as a result so I refused.

It is very tough doing this alone. I work full time and take her to a daycare center and then I hired a caregiver to pick her up from the center and go to my house where she stays with my mom until I get off from work. On the weekends and holidays it's all me. I wake up about 3 times a night to take her to the bathroom. If I'm lucky she holds it until I do but most days she just lets it out and floods her diapers where then I do laundry in the middle of the night because she had wet her liner or sheets along with her PJ.

I have sibling but none live in my city and I know it's on purpose that they do not change that. I get very angry and think why me but it's not about me. I do this because I don't want my mom to suffer and get lesser care from strangers. She hasn't said my name in years and I'm not sure she even knows who I am but I'm familiar to her. Everything happens for a reason or.... I've just chosen the life I have. Whichever it is I have accepted it.

I know exactly how you feel and what you are going through. You may be suffering but each time your mom smiles at you then you know it's worth it because you are the best daughter to her and you bring her comfort and security.
Posted 8/18/2012 3:01 PM (GMT 0)
Thank you Bella I needed that and just to let you know I have a sibling that I have been fighting with for weeks now shes my moms baby shes 38 and my mom misses her she lives in my moms house rent free because mom wanted her to have the house.  The problem is today mom is having a good day and wants to go over there and my sister wont return my phone calls.  Enough of that my mom has had a peg tube since last November almost a year, she could not swallow and had asperational pneumonia 2 times in 2 months so we really didnt have a choice.  I was worried about her pulling it out but so far so good.  She doesnt have the dementia yet that I know of but she does what they call freezing where she stares off into space and is not aware of anything around her.  She has been in wheelchair for 2 years she walks from chair to the bed or from chair to the potty with my full support.  I have read that if the person is not moving their feet to sing a song or one of their favorites to get them swaying and them stepping and honestly it has worked since I started using this tip.  I want you to know that I appreciate your responses and it is really nice to talk to someone who understands what I am going through.  Honestly once again thank you so much for your responses.
Posted 8/18/2012 7:55 PM (GMT 0)
Dementia makes it very hard for the caregiver. You are lucky she is not at that stage yet and hopefully never will. No matter what people say one sibling will always do more than the others. Unfortunately no one ever fights on wanting to do more. Good to talk to you too. Good luck to us all.
:-)
Posted 8/19/2012 3:49 AM (GMT 0)
My husband has been diagnosed with Parkinson in March of this year, but we didn't live together so, I didn't realize how bad he was. I now live and help him with everything including helping him turn in bed, put on his socks, make his meals. He started Sinumet in March, it's helped some.

Does anyone know if it's possible for him to have had Parkinson's for 10 years and the VA doctor, or his regular doctor, misdiagnosed him with arthritis, and many other things, without catching the Parkinson's.
I would appreciate input.
Posted 8/19/2012 3:54 AM (GMT 0)
Also, he is only 63, cannot walk without a cane, slurs when he talks and has chonic back pain.
Can anyone tell me about the time between stages,
Posted 8/19/2012 3:56 AM (GMT 0)
Does he have the classic symptoms of shaking and shuffle walk? That's always a red flag for PD to doctors. If he was diagnosed with Arthritis and given pain meds i don't think that would take care of his real symptoms if he did indeed have PD way back then. If you say he's in really bad shape but was only diagnosed this past March then he must have had it a while. I always thought the only sure way of knowing if you had PD is to take Sinemet and if it helps then you probably have it. There is no real test out there that can confirm it 100%.

He is really lucky to have you back in his life. You are his angel of mercy. You will have a very long road ahead as a caregiver. I've been doing it for about 10 years now for my mom. Granted she wasn't that bad at the beginning but it was gradual and now we are at the point where I have to do everything for her.
Posted 8/19/2012 4:07 AM (GMT 0)
Hi suespac I cannot tell you about the time between stages but I can tell you that I had my mother to 4 different neuro docs and the 5th finally diagnosed her and he recognized it in 10 min. she then started on the sinumet and it was like nite and day she was still working then and I could tell when she got to work whether she took the med or not. We worked together. My mother was differnt or maybe not when it first started she kept falling down, she wasnt dizzy or had no other things happening she just kept falling down. She was ok for about I would say maybe 2 yrs. after she was diagnosed and then it has went all down hill since. She is now in a wheelchair has a peg tube in because she cant swallow and sometimes doesnt talk or make a noise for 3 days at a time. But today she had a very good day and I thank god for the days like today, they are just getting far and few between. I dont have a clue what stage she is in and wish someone could tell me but as far as I can figure out every patient with PD is different. I commend you on what you are doing for your husband. If you find out anything that is for sure about the stages could you let me know and I will do the same for you. Be strong its not an easy thing to do.
Posted 8/27/2012 8:31 PM (GMT 0)
Wow .. I wished I had found this site several years ago.  My mom also had A-Typical Parkinsons and demenia.  She stopped talking, couldn't walk or really move.  I had a service come in and care for her 24 hours a day but then one person could not pick her up to take her to the bathroom, to sit, etc. ... so, ended up having to put her in a nursing home.  I've felt terrible about it - she passed away after a year there.  This is a horrible disease - I really feel for all the caretakers here.  My prayers are with you.
Posted 8/27/2012 9:01 PM (GMT 0)
Thank you DebbieMH for the prayers.  I have been dealing with this for five years and it is very ugly.  My mom just recently stopped talking and now she started back again than god.  When she stops completely I dont know what i am going to do.  If I put her in nursing home I know I will just sit there 24 ours a day to make sure they are taking care of her, so I think I am better off keeping her here with me.  The doctor suggested and put in a order for Hospice and the lady was very helpful but we are trying speech therapy if that doesnt work then hospice will come and help me thank goodness.  Once again thank you and if you dont mind how old was your mother when she passed?  My mother is 71 and we have been dealing with this ugly disease since she was 65.

 

Posted 8/31/2012 10:49 PM (GMT 0)
Hi Guys its me again, I took my mom to the emergency room because her peg tube fell out and the doc said she had Im not sure if he was saying N stage parkinsons or if he was saying end stage parkinsons does anyone know which one is correct thats the first time i had someone refer to her parkinsons as N or end stage? Thank you for any responses.
Posted 9/6/2012 11:17 PM (GMT 0)
My mom is like a rock when I pick her up each time. Partially it's because she isn't helping and then sometimes it's her PD meds wearing off and she has no energy left to help. But I still pick her up with all my strength. The alternative of sending her to a home so she can be someone else's problem will not work for me.

Why would the doctor think she's at the end stage just because the tube fell out? That could happen for various reasons. Strange.
Posted 9/8/2012 6:22 PM (GMT 0)
Hello everyone. I am a caregiver and have been for 10years. I have had a patient who went from being verbal and just stopped talking altogether. HOWEVER, once her UTI cleared, she was back to almost normal. UTI can affect people n diverse ways. People with parkinsons have a tendency to stop midstream through no fault of theirs...the diseases makes it hard so they develop frequent UTIs. Over time, you will have a big episode of UTI tht needs hospitalization. Your loved one could shut down literally if not given very strong antibiotic. With the antibiotics, you have to make sure that they are hydrated very well otherwise you will have dehydration as a side effect. Theres a wonderful product in the grocery stores called water enhancer. You squirt a little  bit in their water and it tastes like a treat. Im so sorry for everybody going through this. It is a terrible disease that robs everyone and everything...
Posted 9/12/2012 8:31 AM (GMT 0)
Im sorry Bella33 I realize that that is what it seemed i meant to say I didnt explain that very well,  the doctor was talking to another doc and I heard him explaining my moms condition as N or end stage that comment didnt have anything to do with the tube.  My mom has also kinda stopped helping with getting up and down but I keep trying to keep her moving as I dont want another bout with pnemonia havent had that prob since we got peg tube.  Does anyone know anything that relates sweating very bad to PD?  Seems here lately that my mom is always soaked with sweat. Thank everyone for your words of advice.
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