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Topic I got a lecture today..... Go to previous topic Go to next topic Go to higher level

By karolinakitty On 2009.11.06 17:57
My man gave me a lecture today..perhaps you could call it a spanking of sorts.

He reads the board from time to time, and asked me to be more careful of not giving people hope.

He firmly has the outlook of "He's not dead yet". He intends to live another 20 years despite the PD. He said without hope, he could easily lay in bed, freeze up and slowly wear away....He is on a chat line with other PD patients, most of whom are very depressed about what goes on in their lives, many of whose symptoms are very mild. He has given them hope with his dry humor, quick wit(well, quick for him)and upbeat attitude.As a matter of fact the other night he was chatting and telling a joke. During the middle of the joke, he froze up...couldn't type, couldn't think, just sat there. The folks were all like..Are you there? are you ok? ... a little embarassing at first but then of course he made a response and everyone laughed.

Like Al and Bob, he agrees to the tough love when his time comes. He is very encouraging to me and the others he meets. The saddest thing for him is the fact that some folks avoid him as if he its contagious. This makes me sad too, but then again he says we need to hope... hope that those who don't know can learn and know the truth from those of us dealing with this disease on a daily basis.

He asks me not to volunteer that he has PD but offer answers if they ask questions. To be careful of HIS feelings and maybe causing him to lose the Hope he so clings too.

In closing, maybe we(and i mean me) need to give the facts but also give the Hope that so many desire. While we know the end to the story, some really need to know that there is life during PD and it doesn't stop because of a diagnosis. That all that Al and Bob have done here and what my man has started with his group, that PDrs can LIVE life and have vacations and fun and do things they love. It may take them longer (we need more patience) but they can do it. They may not respond JUST when we want, but they are there. They have odd habits and complusive behaviors (i'm sure none of us do) but are still the person in the heart that they always have been. I was reminded of that many times during my lecture. They may not "look" the same, but their heart is still with us, the mind wants to, and the body will follow (sooner or later).

Hope is my mans request and hope i shall give, both to him and to all those here.

By mylove On 2009.11.06 21:29
Karolinakitty -

I don't know where to start. Thank you for posting this. Thank you, on the behalf of my husband, and the others who are trying to maintain. It doesn't matter where you are at, life still goes on, and the best we can do is to make the best life we can with what we have.

Information is invaluable, but so is hope. I do believe, and will continue to maintain, that they can and do coexist.

Hope is not denial. Hope is just that: HOPE.

By Pick On 2009.11.09 18:54
Is it hope we/they need or is it sometimes compassion? My dad tells me that every day he's dieing a little bit and I won't dare argue with that. But just because there's no "hope" doesn't mean there's no room for compassion, dignity and meaning.

By Pearly4 On 2009.11.09 19:20
Well put Pick. I've been trying to sort out my own feelings on the whole subject since we keep drifting back to it.

Truth is necessary, I think, at least for the Caregiver's sake.

Compassion is absolutely necessary. Allowing dignity, respect, and meaning go along with it.

Hope is never-ending for some, but compassion should be never-ending from all of us.

By mylove On 2009.11.09 20:53
"Meaning" is a really good word for it. I guess I would say that no matter what our own personal challenges are, what I feel like he's trying to remind us is that there is still the hope for a meaningful life, even when things are bad. That's what we all hope for, for our loved ones and ourselves.

I read this somewhere, and found it very wise: G_d never gives darkness without light. It's in holding onto what we can find of that light that gives the strength to get through the darkness. Our compassion, and the dignity and respect we give, come in making sure nothing extinguishes that light before its time is at an end.

That's the hardest balance of all for those of us on the outside: dealing with the day-to-day challenges and trying to shield that candle from the wind. Bless all of you who do that so well. :)

By LOHENGR1N On 2009.11.10 00:39
karolinakitty, You man is wise. Facts, We all know the facts. Is it wrong to stick to the facts? In each case facts must be weighed against the effects they will or could have. Compassion, yes it's a must as is dignity, respect and meaning. But hope. Hope is essential, what a longer darker road this would be without hope! Thinking at times I'm guilty of seemingly cutting hope short. If I have I didn't mean to, I've at times cautioned about new or other treatments. I've seen many new and other treatments come and go over these years and might have come across as poo-pooing them. All I meant was to view them with skepticism and not bet the ranch on them.

Hope, Hope is the gas that runs our machines, it gets Us through the day. People come here with hope, hope for some answers. Hope for anyone else who is going through battles like their own, hope for comradeship. Hope changes over time, from hopes of cures, well that never goes but it does give way to other hopes. Hopes that the next dosage of med's will work. Hopes that our communication doesn't break down. Hopes that sometime during the day we can share a smile or laugh again. Hopes We patients aren't a burden. Hopes of caregivers for just a few moments more of patience. Hopes for a full nights sleep. Hopes for someone to step up and help. And in the end hopes that We're strong enough to face it, that it comes peaceful and that We've done right throughout the struggle. Hopes that what we type won't be misunderstood or cause hurt. Hopes that the frustration of yesterday can be let go of and start anew today. As most of us know from the lessons Parkinson's teaches (or life itself for that matter). It is not the headline grabbing, grandiose miracles that seem to count most but the small everyday miracles hoped for that even if for only a moment lighten our loads. Hope is what everyone of us needs, without hope humankind would just roll into the fetal position and wait to die. Wherever, whatever path We walk, please, walk it with hope! Our hopes may be different but still We have to hope. As do all. Take care, best of luck and hang in there.

By netgypsy On 2009.11.10 09:30
Each day we all die a bit. Life is a cycle - birth, life, death. PD is very very annoying, frustrating, one problem after another but I see far too many people with it or with a spouse with it looking for a pity party. And a spouse who looks at the person with PD as though they are doomed is NOT helpful.

Get to a major movement disorder center. Know the problems the drugs cause and how to deal with them. Know that sinemet is the ONLY drug that helps a LOT. And I mean back to normal Don't fear the side effects, deal with them. And GET OVER IT - you or the person you are caring for could get hit by a truck and die tomorrow.

Every time I get frustrated I just say to myself Micheal J. Fox is golfing and playing tennis after 17 years with PD. My spouse is going to do this also.

Look into provigil for sleepiness by the way. We've had great success with it. We recently had to cut sinemet down to 1/3 the dosage because it was causing manic attacks (think 8 year old with ADHD on speed and drunk) and we had to deal with peripheral neuropathy so severe there was no feeling in the hands and feet. A B12 deficiency and it has reversed. WOW what a relief. Now we're just having to deal with the protein crashes to get the 20 pounds back on that was lost due to increased activity and lost appetite.

There are solutions. You just have to find them and keep from losing it when your frustration level gets too high. I finally went to 1/4 of a valium tablet a day which amazingly enough does help with my frustration levels but my spouse is now independently mobile, doing tasks around the house, riding his horse and has at least 10 good hours a day ten years after diagnosis. And we both expect him to continue to improve!

There are a LOT worse things to have than PD.

By annwood On 2009.11.10 12:12
I don't believe anyone here is looking for a "pity party". At this point in time you are fortunate to be able to control most of the symptoms but do not fool yourself. There will come a day when you wil not be able to control them. This is a nasty, nasty disease and while it is true that we begin dying as soon as we are born there are some deaths better than others. Many of us have or have had to deal with the truly ugly aspects of this disease. Your loved one is no longer able to eat, breathe, use the toilet and may be living in a frightening world of hallucinations and fear. Some will become so confused and incapacitated that you no longer can leave them for a second. The caregiver no longer has a life of their own and a 1/4 tablet of Valium just won't take care of it.

I realize that hope is wonderful and that many do not want to face the eventual outcome of this disease - I have been there. It was never going to happen to us. We could handle anything. When people talk of the PD problems it makes us angry because we don't want to think about that. Is it hope or is it denial?

One of the valuable lessons I learned in being a caregiver is not to judge other people's pain. I believe that it is crucial that caregivers have something like this forum to ventilate and to know that they are not alone in this.

I sincerely hope that your husband continues to do well and that you do not have to endure what so many of us have.

By Emma On 2009.11.10 15:05
Amen and thank you annwood.

By WitsEnd On 2009.11.10 16:21
God is the only one who has any control over any thing. To think otherwise is just an illusion. Mere mortals, i.e., PWP's and caregivers can't take the credit or the blame for this horrible disease--they can only do the best they can with what is handed them. The only thing anyone can do for PD is try and control the symptoms and stave the disease off as long as possible. There is no cure. That doesn't mean there won't be one some day.

In the meantime we use drugs, doctors, attitude, money, laughter, tender loving care, tough love or whatever we have available to us to do the best we can with what we have. Some patients do better than others--but just like some people can get stung by a bee and have little to no reaction--others can die from an allergic reaction. No two people are the same although the patterns are there.

Anyone who has seen Michael J. Fox and thinks he is what Parkinson's looks like hasn't seen their father laying on a stretcher moaning, unable to talk, fearful of a ceiling light with his hands over his face trying to protect himself from some unseen threat. They didn't see him down to skin and bones and unable or unwilling to eat. No one should have to go through that--but some do--and when the disease progresses nobody can stop it unless there is a miracle. You can pray for a miracle--but you can't make one yourself.

Don't borrow trouble from tomorrow or grieve for yesterday. Take each day as it comes. That's all anybody can do.

And when it gets too much...a half a tranquilizer or a whole tranquilizer once in awhile doesn't hurt either.

Annwood....I also agree about learning not to judge. When you are the one responsible you learn a lot about yourself in the process.

By annwood On 2009.11.10 17:05
I totally agree with you. At the risk of sounding like a religious fanatic I will tell you that without faith in God I could not have made it through my husband's illness. God and I often argued. Why is this happening, what have we ever done to deserve this, how can you be so cruel, etc???. As many of you know my husband died of PD 2 yrs ago and I have had that time to reflect. What has God done for me?

I am a much better person. I am less judgemental and it takes an awful lot to upset me. My adult children laugh at how much I have changed. I used to be that Irish Washwoman who yelled about everything but not anymore. Let and let live is now my motto. On the night my husband died God gave me twin grandsons - the circle of life. My husband's partner told me that it took two to replace my husband. Perhaps but they are the joy of my life and a constant reminder of my husband.

My husband was a teacher. He taught the medical students. For eight years classes of students watched him struggle with this disease. They saw his will to continue and his eventual loss of that battle. I think that it gave these medical students some compassion that will enable them to be better physicians. Many of them attended his funeral and expressed to me how much he had taught them about life. That is his legacy. I like to think that God selected my husband to do this.

We all struggle, we do our best we rationalize why things happen. There is a plan and it is not often apparent to us at the time.

By LOHENGR1N On 2009.11.11 00:47
netgypsy, welcome to the forum. You bring some interesting views in your posts. First let me say I'm glad your husband is doing as well as he is living with Parkinson's Disease. That's great! Your attitude of go get'em is to be commended also. You bring up Sinemet...." Know that sinemet is the ONLY drug that helps a LOT. And I mean back to normal Don't fear the side effects, deal with them. And GET OVER IT - you or the person you are caring for could get hit by a truck and die tomorrow." While Sinemet continues to be the medicine of choice treating Parkinson's it does have it's drawbacks which I sincerely hope any adverse effects or side effects are way down the road for your husband if he encounters any at all. Some people do experience problems. Did you know one of the ingredients of this medicine is ergot? Ergot is a fungi found upon Rye, the crystalline alkaloid lysergic acid is used. Among other uses of this alkaloid is in lysergic acid diethyiamide (LSD). Careful with the learn side effects, deal with them and get over it advise. What's easy for some is hard for others.

One of the strange quirks of this disease is Some of Us progress slowly, others quickly. Which has made me wonder how a claim of a medicine slowing the onset and progression can be made. It sounds like Your spouse has a slower progression rate than some . Again great, enjoy life and keep it as normal as you can. You are very fortunate to be in this position. Others are not, We have both here on the forum.

You bring up MJF, "Every time I get frustrated I just say to myself Micheal J. Fox is golfing and playing tennis after 17 years with PD. My spouse is going to do this also." This may be true with slow progression I sincerely hope it is true. However your saying it won't make it so no matter how sincere and strongly you believe this. This is up to your spouse and this disease, more so the disease. MJF is in a hard spot, he can only present how Parkinson's Disease affects Himself. He seems to be doing fairly well , upbeat and coping. This is one facet of Parkinson's Disease, sadly the public see's this and draws the conclusion that all Parkinson's Disease patients should be or are like Him. We don't see Mohammed Ali as often so the public can see another side of this.

Again welcome to the forum, I myself look forward to your postings and thoughts. All I will ask of You is to understand some here are experiencing facets of Parkinson's with their loved one's which hopefully you and your spouse never will. Take care, best of luck and hang in there.

By karolinakitty On 2009.11.11 08:40
netgypsy, welcome to the forum..glad you will be a part of things here.
If i may be so bold as to comment this way. I'm not aiming at you but i get very tired of people saying get more meds, go to a different doc, get a second opinion.etc etc etc

It's no ones fault here but it hurts me alot because we CAN'T.
We can't afford it. No health insurance, no way to afford it, my man was deemed unisurable years ago, i don't think most of us here could afford $1500 -$2500 a month for health care and now to add the PD it might be higher. That's a political things i won't get into.
Even those with insurance, from comments here, can't afford what they need.
Here in SC there is 1 movement disorder clinic in Charleston at MUSC, we do have an appointment there in January that his doctor referred us to in the beginning of August. There are only 2 other PD specialists in this state. One is 6 hours away and one is 4 hours away. Guess what? Can't afford to drive that far to a doc. Can't afford any more meds a month. I have a prescription discount card which takes off 20% but even with that i had to ask the pharmacist to just give me 2 weeks worth this time. Have i applied to all i can YES YES and YES... Even went to the united way...no good .. we own our home and have a fairly new van. SO..my options are limited and i am getting another part time job to help out. So that's even longer i'll be away and who knows what and where i'll find things when i come home. Cant get a second mortage when you don't have the paycheck to pay it back. We are definitely between a rock and a hard place. Now for those who say you have the internet, yes and i only pay $29.95 a month that 30 bucks isn't gonna get us a prescription or a docs visit. We currently pay $143/visit. Can we get lower? I asked....NOPE.... can i get free samples... ddon't get the requip4mg as free samples.... the internet we need for yet another part time business we have online and yes i have a tax ID for that....
So now that i have put it out there...done all that i can at this minute.....too young for council on aging...just not there yet at 51 and 53.....
I still will have hope and not let all this crap get me down.....
If anyone takes offense to this next comment...deal with it....
God, my trust in Him is the only thing that gets me through.....
All things are possible through Christ who strengthens me....
Our faith is the only way we live, we will get through...we will get what we need.. it may not be at this moment but we will get it.....
Hope is all we have and i won't lose it or miss one little thing to push forward or help us get what we need

By caregivermary On 2009.11.11 17:42
thank you karolinakitty for voicing your opinion. I've been thinking the same things. it's ok to offer suggestions as we normally do here but the recent comments bordered on attacking the caregivers who need our support, understanding, and good positive advice.


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