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Topic Stage 4 to Stage 5???? Help Go to previous topic Go to next topic Go to higher level

By sosad25 On 2015.07.14 13:01
In the past 4 to 6 weeks it seems that my husband's symptoms are getting much worse. Every afternoon around 4:30 Pm it seems that he cannot walk at all. Over the past two weekends we attended some BBQs and each time it took 3 people to get him into the car. This past Sunday it was so bad that 3 men carried him to the car in a chair. When we got home it took me about 30 minutes to get him inside and at one point he almost fell backwards on to me. His incontinence is now nightly and every day I am washing everything on the bed. When he has these episodes it is impossible to communicate with him. It is as if he is almost in some sort of trance. He has had Parkinson's for 21 years but is only 67 years old. Since our MDS "fired" us at this point I have not gotten another neurologist so I really don't know what is happening. I am beginning to look for someone to live-in and help because it is more than I can handle. Has anyone seen anything similar in terms or total inability to move and not being able to communicate? Is this what happens when people begin Stage 5? I am so distraught and worried I don't know what to do.
I appreciate any insight anyone can give me.
Thank you,.

By Mary556 On 2015.07.14 15:50
Greetings, sosad. It could be something else entirely, but I wonder if your dear husband could be experiencing these symptoms as a result of overheating /dehydration. You said this happened when he was outside at a BBQ.
My PWP Mom has episodes of lethargy when she gets too warm or when she does not have enough fluids in her. Recently my mother had an episode of heat exhaustion; she could barely move or talk.

I tend to think in terms of episodes rather than stages... recover from one challenge and then move on to the next one. That is just my way of dealing with adversity. Looking at the forest instead of the trees, I start to feel overwhelmed and paralyzed.

I hope you will be able to find a new doctor soon. That was some shabby treatment you received, just dropped like that. The MDS should have transitioned you to a new provider. Good riddance.

Prayers for you and your husband.

By LOHENGR1N On 2015.07.14 15:57
Did he get his Comtan refilled? You posted before the MDS and having a problem getting the refill? It sounds like a form of freezing that is med related if it happens each day at a certain time. (Boy what a time to be abandoned by any neurologist and that is what a MDS is, is a neurologist.) How is his PCP? I'd try calling and alerting his primary Doctor and giving him the low down on what's happening. Maybe this urgency will prompt the primary to action in finding a Neurologist for you. Being his caregiver for such a long time you probably know as much about P.D. as a primary care doc. But I'd guess if it's happening like clock work at a certain time each day it is something with the dosing. I believe Comtan is supposed to lengthen the time our med's work or to lessen the on/off period between doses. This sounds like the classic off time between doses. Years ago some Doctors and Experts accused People with Parkinson's of malingering as they were bed bound or couldn't move in an "off" time but when the medicine "kicked" in the could get up and move about. They didn't believe the medicine or lack of it could have such a profound effect on Us. Thankfully the medical field has grown in knowledge since those dark times. I hope You can get in to see a Neurologist soon. Our thoughts and prayers are with you both.

By mylove On 2015.07.16 09:36
This really sounds like sundowning, or an early wear-off, like Al said.

Your neuro was terrible - good riddance. But you really need to have another. It's beyond what a PCP can manage well. Hugs and I hope you find someone who can help soon!

By LOHENGR1N On 2015.07.16 13:53
Sundowning is usually associated with agitation, restlessness and pacing. The opposite of what is being described as happening.

By sosad25 On 2015.07.21 13:31
Thanks to everyone for their thoughts on my issues. I have received some names of hopefully good neurologists here and it will now be the task of getting all his records and getting an appointment in a reasonable amount of time.
Gregg also has severe orthostatic hypotension and I read that with advanced parkinsons that sometimes sinemet can make your symptoms including the hypotension. I probably shouldn't be tinkering with his meds but I have cut back each of his doses of sinemet and he is doing a little better. His dizziness when standing and his freezing is a little better. He did have a fall over the weekend that did require the firemens help to get him up. He's 6'2" and I am 5'3". Also the severe dyskinesia he would experience mid dose is much better. I cant say the same for his confusion and asphasia--I wish I could.

This forum is a true lifeline. I wish everyone here the best in their struggles with this terrible disease.

By Lynnie2 On 2015.07.22 09:58
Could I ask how much Sinemet your husband takes.
My husband takes 2 (100mg/25mg)
four times a day.
I asked our doctor if he quit taking them would he get stiff and he said Yes.
He also naps a lot during the day and I think it's the pills.
He gave him some other pills to make him more alert but the side affects were worse than the symptom so he isn't taking them.
Good luck with the doctor and hope he can help your husband.

By Mary556 On 2015.07.22 11:59
Sosad, please be careful how much you change your husband's dose of Sinemet. There could be repercussions. The total amount needs to decrease (or increase) gradually. Last summer when my PWP was in hospital her amount was changed and started to have more symptoms so I tried to research. I believe the recommendation is to go down by 10% for a month, then if there are no problems, go down another 10%, like that. My Mom takes 6 tablets per day. Her neurologist wants her to increase, but she gets so confused and has difficulty to function at a higher dose. Sometimes I have fluctuated her daily amount by 1/2 pill (out of 6), but no more than that.
Best wishes and prayers for your husband and yourself.

By LOHENGR1N On 2015.07.22 12:17
You cannot stop taking Sinemet all at once! It can be fatal! You have to gradually decrease dosage. This goes for most all of our drugs. In fact years ago they used to try "drug holidays" in some cases when they tried these the patient was always hospitalized because of the danger involved. Always consult with the doctor before reduction or increase of medications. Linny, this is a sobering statement the doctor stated yes to being stiff? I'd have answered yes if he stops talking them he'll be stiff in a coffin! Pardon my bluntness in this answer, but it sounds as thought the doctor doesn't know much about the medication they are prescribing. There is a movie "Saving Milly" you can find it on you tube in segments but the whole movie is there, My PCA strongly recommendations all care givers watch it as it follows Milly journey through P.D. the movie is well done and I learn each time I watch it. I'm sorry I don't mean to upset anyone or make them cry. My heart goes out to each and every one of you on the forum. We do need to research our medications and treatments as many times the Doctors will go with the info handed out by the pharmaceutical companies and they promote the positive and not any negative sides to meds. Again I meant no hurt to anyone or to make any caregiver feel bad. As my heart aches with yours throughout this battle with this disease

By sosad25 On 2015.07.22 12:26
Oh my goodness, I had no idea that I could be hurting him. He just seemed so much better and not as dizzy on the lesser amount of Sinemet. He was taking 2 25/100 pills 5 times a day. He still is taking meds 5 times a day but I guess I should at least be giving him 1 1/2 at each dose.
Thank you for telling me this. I feel so terrible that I could be hurting him. I think I am about at the end of my abilities as I am crying as I am typing this.

By ResistanceFutil On 2015.07.22 17:39
Sosad- please, no one is criticizing you and you're doing your husband so much more good than any little unintentional harm. You're just trying to get your husband some relief and as you learn more about the medication you will adapt accordingly.

Your questions and comments and the responses you are getting are helpful to me and many others. You are doing a lot of good. I'm glad you're so open and honest about your situation - this thread could save the lives of many.

By Mary556 On 2015.07.22 18:43
Dear sosad, sometimes it helps to cry a little, but please do not beat yourself up. You are not an insufficient caregiver. It is very clear how much you love your husband and want the best for him. How could you possibly know everything about every drug? You can't. That is a doctor's job and your neurologist abandoned you. You could not consult with him because he was not there. That is not your fault.

You are under a lot of stress right now. Cry a little if that seems to help, then try to pick yourself up, brush yourself off and go forward. Your husband needs you. We all make mistakes from time to time. You are doing your best. Keep doing your best. It is only by chance that I happened to read that warning about decreasing Sinemet last summer and wanted to let you know. We are so blessed that our friend L-grin (Al) is here to help us understand. Try not to worry. Take one day at a time. You are a great caregiver.
Peace be with you.

By kjh2506 On 2015.07.22 22:24
Have you had him checked for a urinary tract infection. UTI's really change elderly people, and normal symptoms don't seem to show up. Happened with my mom who has PD and it was a mild infection. Please check that out with your GP.

By Mary556 On 2015.07.22 23:41
(link to Saving Millie - part 1 of 9)
Thank You, Al.
God bless all of our PWPs and caregivers

By LOHENGR1N On 2015.07.23 09:04
Mary, thanks for posting the link for those who want to watch it. Sincerely Al

By Mary556 On 2015.07.24 09:05
Dear sosad, just to clarify... I believe the amount to start decreasing Sinemet is 10% of the total daily amount. If your husband was taking 10 pills /day (5 x 2), then he could probably go down to 9 pills /day without a problem. His GP should supervise this and advise you until his new neurologist is found. I'm not sure if I read correctly, but if you decrease every dose from 2 to 1.5, his daily amount goes from 10 to 7.5 ... 25% or more seems to be too much of a reduction.

If your husband's PCP is not aware of all his recent problems and change of meds, I believe you want to make that your priority to speak with his primary doctor today. Tell him your husband is having frequent episodes of falling and freezing. The doctor could refill his Comtan RX and could test for urinary tract infection, as kjh has advised. Incontinence, falling, confusion can be indicators of UTI. Your DH may have multiple issues that need to be sorted. Possibly the doctor will recommend he go to the hospital for an evaluation. Stress to his PCP that your husband's condition has declined to the extent that it is difficult for you to care for him by yourself now. Hopefully his condition will improve as the causes are identified and he receives the best treatments.
Best wishes and prayers for you both.

By sosad25 On 2015.07.24 12:38
Thank you everyone for your help and thoughts and prayers. And please know that I was not upset at anyone for their comments.
In terms of his meds I had not changed the first and last dose at all only the three in between. So he has been taking 2, 1.5, 1.5, 1.5, and 2. So overall I reduced by 15%. Which I understand is still 5% to much.
Of course our PCP is on vacation this week and his first available appointment is next Wed which I have booked.
Gregg is doing a little better. We were actually able to go out for a little dinner last evening.
Also I have found a new neurologist and spoke with the office on the phone and I am in the process of filling out all the paperwork. I told them what happened with the last doctor and they said they have never heard of such a thing especially with someone with Advanced PD. They need to review the paperwork and will then call us with an appt. Hopefully very soon.
I hope everyone is doing well with their particular situations. I know this is so difficult for our PWP as well, probably even harder.
Thanks for the link to Saving Milly. Just an aside the actress who plays Milly is Madeleine Stowe. My name is Madeleine too and we both have the French spelling of the name:)
Hugs and Smiles to everyone

By Mary556 On 2015.07.24 14:19
Great news, Madeleine! Happy that your DH is improving and you were able to enjoy a nice dinner. Hoping you will be able to see the new neuro doc soon. (I'm not educated but 10% to 15% does not seem like a big difference to me.)

French is my Mom's first language. Our usual morning greeting is "Bon jour, MaMa! Bon jour, PaPa!" "Bon jour, Marie!" . then Mom asks me "how are you" in french, I say "ca va bien" - then we switch to English. Lately MaMa forgets that *je ne parle pas francaise* and she starts rattling off entire paragraphs in French. I have to laugh.
My Pépère used to sing a little French song "Marie Madeleine". I'm trying to learn the words.

Thanks again, Al. I watched two segments last evening. It may take a few days in between.

God bless all PWPs and caregivers.

By Mary556 On 2015.09.12 07:47
Fighting in NYC, scroll to AL's post on 7/22 at 12:17

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