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Topic Any advice? I am overwhelmed Go to previous topic Go to next topic Go to higher level

By happygranny On 2008.12.31 18:52
Things are worse because it is the Christmas/New years season and getting neurologists to help is impossible.

PD is new to my husband and I. As I stated in another message, in hind site he likely had PD symptoms 10 yrs ago.

Because his mother had Alzheimer's and his dad had Familial Tremors, and he has Prostate cancer and the stress that goes with that, we were thinking a lot of his symptoms were related to any or all of those three issues.

-When he started having 'crazy' dreams and lashing out, hurting me in his sleep in 2003, we talked to his doctor about it and he Rxd clonazepam. We thought it was stress-related, or Alzheimer related.

-When he started walking quite stooped, the doctor took x-rays in said he has arthritis.

- This spring when he started having panic attacks over what I considered nothing to fret about, his doctor told him to breathe deeply and read a book about dealing with stress.

-When the prostate cancer counselor suggested we ask his GP for a referral to a Geriatrician we were told he didn't need that, he was 'fine', just needs to relax.

- In august when he then started to have constipation and I was feeding him lots of fiber his doctor told him to eat more fruit - we went back two weeks later and he said to try and find a regular time of day to have a movement....when we went back 2 weeks later he took an x-ray and said there was little in his low bowel so even though he had not had a movement in 4 days, we were told not to worry about it, but taking sennekot would be okay

- in Early November my husband went back to his doctor to say he was still miserable with constipation, using oral fleet was his only recourse and he was shaking a lot with irritating spasms in his arms and shoulders and not sleeping and panicking easily and his doctor said he would refer him to a neurologist. Three weeks later when we phoned to find out what was happening with the referral, we found out he had not done the referral.

-Things started getting really bad in late November when he started having very painful contractions/spasms and I took him to the ER Dec 3rd where he was Dxd with PD and given an Rx for Levo/carb, 100/25 three times a day and we had an appt with a neurologist for...Get This....July 28, 2009!!!!

- I took him to a walk-in clinic (we were not going back to his GP) and got a quick referral to a geriatrician. This got things moving quickly, esp with the report from the ER, and we did get in to a neurologist Dec 15th.

-He is now taking 2 leva/carb 100/25 in the AM, 2 at 5:00pm and 1 Leva/carb 200/50 CR at bedtime, I have also started to add leva/carb 100/25 at 1:00pm, but doing that slowly as he has had hallucinations, so as of now at half a pill for a week, he has just started taking the whole pill at 1:00 2 days ago. He also takes 5 mgs of clonazepan at bedtime. I have tried giving him 1/2 or 1/4 clonazepan during the day to settle his agitation but it puts him to sleep and he is so depressed about his life either in pain or sleeping so he doesn't want to take it.

He has tried Tylenol 3 for pain but that makes his constipation worse and also makes him sleep too much.

He is continuing to get worse. His painful muscle contractions/spasms and agitation is getting more intense every day despite the increase in his meds. It is breaking my heart to watch this happen so fast.

We don't have another appt with the neurologist until Jan 14th and with each day that passes I am desperate for help. It is all new to me, though I am trying to educate myself, but I haven't found much about this kind of fast downhil spiral in just one month and I have no PD professionals to talk to until Jan 14th, though I might phone when they open their office on Jan 5th and beg for help. That is still 5 days away.

What can I do? Is this not unusual? Is ther something else we can do? We are in Canada and the health care system doesn't work very well at all, even though it is "Free".

Thanks for listening.

Jeannie

By annwood On 2008.12.31 20:19
Jeanie - you need to sit down and take a deep breath. As I advised in another post there is really nothing you or the neurologist can do at this point - that makes it very hard on you, I know. Your husband appears to have a sensitivity to the PD drugs and it is taking longer to get him to an effective dose. A higher dose of medication is going to be the only thing that might make his symptoms improve. He also appears to be in the later stages of PD so many of his problems like the hallucinations and anxiety may be a result of the disease. PD is an incurable, progressive disease and there are so many problems associated with it that we aren't told.

Most PD pts develop hallucinations, paranoia, depression, constipation, muscle pain, immobility at some point in the disease. Try as we may sometimes there is nothing to be done. I can understand your desperation because you want there to be an answer - sometimes there isn't.

Stay with us.

By lurkingforacure On 2008.12.31 21:16
I am really sorry for you in your situation, to have things occur so quickly, at least it seems that way, since as you said your husband probably had PD for years and just now all of these symptoms appear and get worse. If it makes you feel better, our neuro told us my husband had probably had PD for at least five years, and that we were "very sophisticated" patients because we were in his office a good two years before most folks would be-not sure how true that is, since it was my husband's co worker's comments who scared us and sent us running to see him. But my point is, most PDers are told that as well, that they have had the disease for years, just did'nt pick up on early signs. And then when you do, well, apparently things are pretty far along.

Some things you can try that may help and even if they don't, you will be doing something (which is very important to me):

massages for the muscle pain and cramps (even if you have never massaged before, somehow having those loving hands on his back, shoulders, wherever, helps my husband)

music he likes, music can help get people moving, there is research that has been done that somehow, PDers may not walk well but can dance! even if he doesn't dance, he may enjoy listening.

get out in the sun, recent research indicates a lot of PDers, and non-PDers, are deficient in vitamin D, the best source of which is the sun. the older we get, the longer it takes to make vitamin from sunlight, and so you have to stay out longer. also, darker skinned people take longer to make their vitamin D from the sun, and have to stay out longer as well. It is hard in winter, but I try to get my husband out for at least 10 to 15 minutes a day. It seems to lift his mood a bit, as well, but who really knows.

reduce the stress for both of you. easy to say, I know, but you will find EVERY PDer says stress makes things worse. I cannot imagine how scary it must be to have a body that does not do what you want it to do, hurts you, and every day it's a new body with new parts that don't work in ways different from the day before. And to know it will only get worse, it must be mentally horrendous. Anything you can do to take your and your husband's mind off of what is going on now, while you wait to see the neuro, and any other stressor that you are dealing with, can only help.

As for you, educating yourself as much as possible will help you more than you know. Some sites that can help really educate you: patientslikeme.com and neurotalk.com, as well as this one. Annwood had a recipe for constipation that she said really helped her husband, and my husband's constipation clears up pretty much the day or so after he takes a couple spoonfuls of extra-virgin organic non-processed or hydrogenated coconut oil. We mix it in his oatmeal and smoothies and sometimes if he's feeling desperate he will just eat a spoonful or chunk of the stuff, it is solid at room temperature. You can search our past posts on this topic and get more information about this if you are interested.

I hope the New Year brings you out of this darkness and onto as stable a place as possible. Remember you are not alone.

By happygranny On 2008.12.31 23:05
Thank you Annwood and Lurking, lots of good advice, including taking a deep breathe, which I am doing. He already appreciates my massages....

It is hard for me to accept that this is it, that there isn't going to be some relief for him. I thought once he upped his levo/carb he would do better for a while anyway, but he seems to be in free-fall and I guess I have to accept that some how.

There is support out there in our city, but as it is Christmas no one is available now when I am having such a hard time learning what is going on. Thank goodness for this site or I would be a worse basket case than I am.

Yes, I did follow one of the recipes and he eats it every morning. He also takes 4 sennekot (2 in the am and 2 in the evening making sure they are taken away from his other meds). He also started Lactulose, 2 Tbsps in the middle of the afternoon. It is getting things moving a little bit better, though he is quite bloated. I did read about your coconut oil and had trouble finding it and stopped looking, but I will get going on it after New Years.

He is a very thoughtful kind loving man and all I want to do is help him feel better. That might not be the kind of better we had in mind, but at least help him relax and feel loved.

He has always had difficulty taking pills - he is more sensitive than most people and so just doesn't want to take any. When he gets agitated it is hard to talk to him, and it is hard to get him to take his meds.

Oh, boy, I have a lot to learn.

Did I tell you I have Lyme disease and am going through my own problems dealing with the pain and fatigue?

Yes, yes, poor me. Normally I am a glass half full type, and I will get there again.
One good thing, when my husband falls asleep during the day I have the same sense of relief I used to have when my colicky babies would go down for their naps.

Thanks so much for being there. I will follow-up on all your good advice.

Jeannie

By LOHENGR1N On 2009.01.01 00:31
Jeanie, a fast spiral generally, not always, but generally points to Parkinson's Plus, a group of neurological disorders that the Neurologist will have to rule out. Yes, He probably had Parkinson's for awhile. I think if you asked every one of Us with Parkinson's Disease We would all tell you the same thing. The Doctor said we probably had it for years!?! Why? Because the tremors, lack of balance, poor posture, soft voice, penmanship going bad really don't show up and become recognizable enough to run to the Dr's until about 80% of the dopamine producing cells in the substantia nigra are destroyed (dead). Once He gets to the neurologist and the med's are onboard at therapeutic levels He might surprise you in regaining things you thought were lost. Ann is right it is not curable, I think this is a reason most Neurologists won't use stages! (with us pt's anyway) One can be exhibiting say stage 4 and a tweak in drugs or intro of a different med may gain more movement or calm a tremor, and look like stage 3 thus giving a false hope of getting better (the underlying disease is still progressing, however on the surface it looks like it isn't). keep trying to hold on till the Dr's Jeanie and post and vent all you need we're here for You both!

Lurking, Check the medicine esp. if He's taking any blood pressure med for warnings about exposure to sunlight. Many med's have reactions to sunlight, and may call to limit exposure.

At the end of the televised movie "Saving Milly" M.J. Fox says, and I don't quote here; Some of you may have heard of Mort Kondracky and some have heard of me. Now you've met Milly. This terrible disease can strip us of so much, take away so much from Us but it cannot take away our dignity unless we allow it. Milly's life is a testimony to that! Hang in there everyone, take care and the best of luck in the New Year!

By lbellomy On 2009.01.01 18:12
LOHENGR1N has mentioned Parkinson's Plus. You might read up on Lewy Body Dementia and see if your husband fits the symptoms. The one thing that you will read on Lewy Body forums is that the patients are extremely sensitive to meds and there are some meds that should be avoided.
Lorraine

By bandido1 On 2009.01.01 19:43
Jeannie: One more suggestion for your guy. Try a meditation CD that includes music and specific relaxation sessions. Whenever I get to a certain level of frustration, anger,depression etc. I have a 20 minute session dowloaded to this contraption; three or four clicks and I am on my way to relaxing my whole body.

Works for me and beats reading a book. Bob C

By happygranny On 2009.01.01 21:20
Thank you all for your thoughts and ideas of things for us to look at.

We did have a big improvement starting this afternoon when he upped his afternoon Leva/carb by 1/2 pill. Until now we have hesitated raising the dose because he seemed to have extreme agitation and hallucinations, however, as we were desparate, esp with the painful contractions, he took it and what a difference that little increase made! Phew...... You can feel the relief in the air in our home.

He is still hallucinating, (says the carpet is 6 inches thick) and doesn't feel 'himself' but he is calmer, no painful contractions and able to sit and watch a football game and know what is going on and not fall asleep.

Don't know what the rest of the evening will bring, or even tomorrow, but so far, so good.

Peaceful music in the back ground always works for me.

Thanks again,
Jeannie

By Mary On 2009.01.05 11:16
This isn't going to sound the way I mean it but it makes me feel better seeing that others are overwhelmed by caring for someone with Parkinson's Disease. I have only been caring for my father for six months now but last night I had a fit of crying due to feeling so overwhelmed. It is a combination of all I am responsible for though, not just Dad. I want to do this for Dad but it isn't easy. Caring for Dad isn't difficult but it is time consuming. I wish this forum was an in person support group. Wouldn't that be nice? I do attend a support group for people with Parkinson's Disease with Dad but could never be honest in that group situation with Dad sitting there. It would only hurt Dad and not help me.

By susger8 On 2009.01.05 16:08
That is so true, Mary! This is the only place I have found where people talk about the reality instead of sugar-coating the disease. I have learned so much here, and it really helps me to find out that the weird things that happen to my father happen to other people too.

By Noteasy2beehear On 2009.01.05 16:54
Mary, I agree that this too has been the only place where I truly feel comfortable sharing how overwhelming things can get. My friends have said, "What's wrong?" "How are you handling all this?" "You are so strong, I know you can do this"

I know that they are trying to be supportive but I could never tell them what is truly on my mind........I sometimes think that I am not even honest with myself......I am too afraid of what I truly feel at times. I ride a motorcycle and sometimes, I just wish that I could get on it and just ride away........never come back. It is just too much at times. And that attitude even scares myself........

I am glad that I have found this forum, I don't know where I would be today as well. It is great validation knowing that I am not CRAZY. LOL LOL

Noteasy2beehear

By happygranny On 2009.01.06 12:13
It is the absolute truth, that I don't know how I would have managed the last 2 weeks with out the board. No one else understands what this has been like.

Thank you all for being there.

Jeannie

By Mary On 2009.01.06 15:53
Thanks for your responses. It is the only thing that makes me feel better. When people praise me for what I am doing, I only feel guilty. My actions and words to my father are supportive but my thoughts are not always so. Riding off on a motorcycle sounds like a wonderful break, if only for a moment to just have quiet and the wind on my face. Thanks again for your honest responses. That is what I need. Wishing you all the very best! Mary


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