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dealing with PD and should you share the diagnosis


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#1 netgypsy

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Posted 13 May 2011 - 08:10 AM

I'm starting with a recent quote from Michael J Fox as he approaches his 50th birthday

RE: The last time we met, you said that when people hug Tracy and say, "You're so strong," or they give you the sad face, you roll your eyes, understandably. So what do you think are the right things to say to someone going through a difficult time?

MJF: The cue should be taken from what the person is radiating. So for example, I had this conversation with somebody who said to me that her husband had Parkinson's and was in denial. And I said, "What do you mean he's in denial?" And she said, "He still insists on golfing and hiking and swimming." And I said, "That's not denial — that's life. That's just great. It's not about what you think it should be. It's about what he is experiencing." So if you go up to someone and say, "How are you? Are you OK?" I mean, that tells me I'm supposed to not be OK. Just ask me if I'm OK, I'll tell you I'm OK...and take my word for it. Or I'll tell you I'm not OK...and then be prepared to reap what you've sown by asking me the question. So what I say about Tracy is this: Tracy's big challenge is not having a Parkinson's patient for a husband. It's having me for a husband. I happen to be a Parkinson's patient. That's what I say to people: Whatever the situation, just take it for what it is. You don't have to make it worse or better than it is. It just is what it is. Always deal with the honesty, the truth of what something is, and then you've got all kinds of choices.

I'm not fearful of my condition or my future — but if someone is looking in my eyes for fear, then they see their own fear reflected back at them. They're saying, "I'm OK, but you're kind of damaged in some way."

RE: But some would say you're not OK. How would you reply?

MJF: It's like, I'm all right. Don't worry about me.

Read more: Michael J Fox Interview - Michael J Fox on Family and Tracy Pollan - Good Housekeeping

Should you share the Diagnosis of Parkinson's?

You know your family and friends. Some don't care what your spouse,SO, parent, friend has wrong with them, they just treat them as they always would - like a person. Others will start to cry, tell you how sorry they are and treat the person with PD like they're dying. Well we're all dying. LIFE is PROGRESSIVE so of course Parkinson's is progressive. So be careful who you tell if you want them to continue to be a part of your life.

What you as caregiver can do is make sure your loved one gets full benefit of the available meds, best movement disorder specialists and so on and can continue to live as they choose to live, not buy a "hoverround" and park in front of the TV and "eat worms" all day. If this is done your person with Parksinson's will appear normal most of the time. Yes we have med crashes and they are not pretty but they are TEMPORARY.

ENCOURAGE EXERCISE. DON'T insist on a cane. If they have balance problems get them to balance therapy and get the meds adjusted. Be sure to have them tested for osteoporosis and go on meds if needed. This is another problem many many PWP have that is totally treatable but can be deadly.

With today's doctors your loved one can be doing just as he is doing in ten and even 20 years - playing golf and tennis and taking walks and enjoying life.

You deal with each problem that arises as it arises. You DON'T LOOK FOR PROBLEMS that might NEVER HAPPEN.

For example everyone associates PD (Parkinson't disease) with tremor. Well many of us have almost no tremor at all and never will. They worry about dimentia. Oh yes this can happen and there are many things that can be done to deal with it. Your goal is to help them get the best out of life, realize that there are so many things so much worse than PD and DO NOT think they are in denial when they continue to do the things they love to do. This is not denial, this is the life most people with PD can continue to do if they maximize their health, exercise and stay on top of the non PD problems people with PD generally have.

Health problems people with Parkinson's are likely to have that are treatable.

Vitamin and mineral deficiencies and constipation. This go together because if your food is not adequately tumbled int he intestines you won't absorb the nutrients you need. What do you do? First you eat a high fibre diet, refried beans, psyllium (Konsyl brand or equivalent is the best I've found), take something to keep your intestines working properly like milk of magnesia tablets which my GI specialist recommended, get regular testing for B12, folic acid, calcium, vitamin D and other things also.

clots - people with Parkinson's must stay active because clots are common in sedentary so make sure your person with PD exercises regularly and keep s moving. If they can't, the meds probably aren't right because sinemet alwsys helps a person who really has Parkinson's. The dopamine agonists do NOT always help although they do help some but be very careful with them. They have serious side effects, both mental and physical. (I fainted 20 or 30 times a day and slept about 20 hours a day on requip and mirapex is in the same category)

Blood pressure fluctuations - Parkinson's medications affect blood pressure and so does Parkinson's so check it standing, sitting and lying down, before you eat and after you eat and at night. There are short acting blood pressure reducers and all they need to do to get their blood pressure to rise is drink a glass of water and wait about 5 minutes or so. So keep plenty of water around no matter what the activity.

Do NOT assume they will become an invalid. Many people with PD do not. In addition to Michael J Fox, read about Janet Reno, another famous person with PD. She's doing really well also.

Depression and anxiety. Dopamine agonists like requip and mirapex can cause anxiety and when coming off them, cause horrendous anxiety so just be aware. Dopamine alleviates anxiety in some people with Parkinson's so be sure it is at the correct levels before you add other anti anxiety drugs.
Exercise also reduces anxiety - another reason to KEEP MOVING.

It's been said that we will all get Parkinson's if we live long enough. Your goal is to make sure the meds, nutrition, exercise, keep the annoying symptoms gone as long as possible.

DO NOT DELAY GOING ON SINEMET. This is dopamine replacement for a person who need dopamine. Dopamine is a natural chemical the body should produce and people with Parkinson's do not produce enough of it so like a diabetic who needs insulin, it has to be supplemented. People with Parkinson's live a lot longer and better if they begin taking the NECESSARY dosage as soon as symptoms become annoying or impact their lifestyle. Dopamine does NOT cause Parkinson's to accelerate. My levels have not gone up in four years and in fact have gone down as I maximized my health. Overdose is bad but underdose can actually kill you if your swallowing is so bad you inhale fluids as you sleep.

Eat well and maintain an optimum weight. Good nutrition is critical and timing eating so it doesn't interfere with meds is also critical.

Check out deep brain stimulation. If sinemet really helps your loved one then so will deep brain stimulation if they are a good candidate. Yes it can be done if your PWP has some dimentia but only certain really skilled teams will do it like University of Florida at Gainesville and Dr. Okun is part of that team on the Ask The Doctor on here.

So cheer up and LIVE your life and let them live theirs. Believe it or not the caregiver, if of the same gemera; age, usually dies before the person you are caring for so TAKE CARE OF YOURSELF and do the things you love to do also. Parkinson's is VERY annoying but being hit by a truck is a lot worse. :mrgreen:

Edited by netgypsy, 13 May 2011 - 08:16 AM.


#2 Jenette

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Posted 11 June 2011 - 10:14 PM

What a great post, thanks! Lots of good info

#3 shakti

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Posted 14 June 2011 - 01:58 PM

I'm starting with a recent quote from Michael J Fox as he approaches his 50th birthday

RE: The last time we met, you said that when people hug Tracy and say, "You're so strong," or they give you the sad face, you roll your eyes, understandably. So what do you think are the right things to say to someone going through a difficult time?

MJF: The cue should be taken from what the person is radiating. So for example, I had this conversation with somebody who said to me that her husband had Parkinson's and was in denial. And I said, "What do you mean he's in denial?" And she said, "He still insists on golfing and hiking and swimming." And I said, "That's not denial — that's life. That's just great. It's not about what you think it should be. It's about what he is experiencing." So if you go up to someone and say, "How are you? Are you OK?" I mean, that tells me I'm supposed to not be OK. Just ask me if I'm OK, I'll tell you I'm OK...and take my word for it. Or I'll tell you I'm not OK...and then be prepared to reap what you've sown by asking me the question. So what I say about Tracy is this: Tracy's big challenge is not having a Parkinson's patient for a husband. It's having me for a husband. I happen to be a Parkinson's patient. That's what I say to people: Whatever the situation, just take it for what it is. You don't have to make it worse or better than it is. It just is what it is. Always deal with the honesty, the truth of what something is, and then you've got all kinds of choices.

I'm not fearful of my condition or my future — but if someone is looking in my eyes for fear, then they see their own fear reflected back at them. They're saying, "I'm OK, but you're kind of damaged in some way."

RE: But some would say you're not OK. How would you reply?

MJF: It's like, I'm all right. Don't worry about me.

Read more: Michael J Fox Interview - Michael J Fox on Family and Tracy Pollan - Good Housekeeping

Should you share the Diagnosis of Parkinson's?

You know your family and friends. Some don't care what your spouse,SO, parent, friend has wrong with them, they just treat them as they always would - like a person. Others will start to cry, tell you how sorry they are and treat the person with PD like they're dying. Well we're all dying. LIFE is PROGRESSIVE so of course Parkinson's is progressive. So be careful who you tell if you want them to continue to be a part of your life.

What you as caregiver can do is make sure your loved one gets full benefit of the available meds, best movement disorder specialists and so on and can continue to live as they choose to live, not buy a "hoverround" and park in front of the TV and "eat worms" all day. If this is done your person with Parksinson's will appear normal most of the time. Yes we have med crashes and they are not pretty but they are TEMPORARY.

ENCOURAGE EXERCISE. DON'T insist on a cane. If they have balance problems get them to balance therapy and get the meds adjusted. Be sure to have them tested for osteoporosis and go on meds if needed. This is another problem many many PWP have that is totally treatable but can be deadly.

With today's doctors your loved one can be doing just as he is doing in ten and even 20 years - playing golf and tennis and taking walks and enjoying life.

You deal with each problem that arises as it arises. You DON'T LOOK FOR PROBLEMS that might NEVER HAPPEN.

For example everyone associates PD (Parkinson't disease) with tremor. Well many of us have almost no tremor at all and never will. They worry about dimentia. Oh yes this can happen and there are many things that can be done to deal with it. Your goal is to help them get the best out of life, realize that there are so many things so much worse than PD and DO NOT think they are in denial when they continue to do the things they love to do. This is not denial, this is the life most people with PD can continue to do if they maximize their health, exercise and stay on top of the non PD problems people with PD generally have.

Health problems people with Parkinson's are likely to have that are treatable.

Vitamin and mineral deficiencies and constipation. This go together because if your food is not adequately tumbled int he intestines you won't absorb the nutrients you need. What do you do? First you eat a high fibre diet, refried beans, psyllium (Konsyl brand or equivalent is the best I've found), take something to keep your intestines working properly like milk of magnesia tablets which my GI specialist recommended, get regular testing for B12, folic acid, calcium, vitamin D and other things also.

clots - people with Parkinson's must stay active because clots are common in sedentary so make sure your person with PD exercises regularly and keep s moving. If they can't, the meds probably aren't right because sinemet alwsys helps a person who really has Parkinson's. The dopamine agonists do NOT always help although they do help some but be very careful with them. They have serious side effects, both mental and physical. (I fainted 20 or 30 times a day and slept about 20 hours a day on requip and mirapex is in the same category)

Blood pressure fluctuations - Parkinson's medications affect blood pressure and so does Parkinson's so check it standing, sitting and lying down, before you eat and after you eat and at night. There are short acting blood pressure reducers and all they need to do to get their blood pressure to rise is drink a glass of water and wait about 5 minutes or so. So keep plenty of water around no matter what the activity.

Do NOT assume they will become an invalid. Many people with PD do not. In addition to Michael J Fox, read about Janet Reno, another famous person with PD. She's doing really well also.

Depression and anxiety. Dopamine agonists like requip and mirapex can cause anxiety and when coming off them, cause horrendous anxiety so just be aware. Dopamine alleviates anxiety in some people with Parkinson's so be sure it is at the correct levels before you add other anti anxiety drugs.
Exercise also reduces anxiety - another reason to KEEP MOVING.

It's been said that we will all get Parkinson's if we live long enough. Your goal is to make sure the meds, nutrition, exercise, keep the annoying symptoms gone as long as possible.

DO NOT DELAY GOING ON SINEMET. This is dopamine replacement for a person who need dopamine. Dopamine is a natural chemical the body should produce and people with Parkinson's do not produce enough of it so like a diabetic who needs insulin, it has to be supplemented. People with Parkinson's live a lot longer and better if they begin taking the NECESSARY dosage as soon as symptoms become annoying or impact their lifestyle. Dopamine does NOT cause Parkinson's to accelerate. My levels have not gone up in four years and in fact have gone down as I maximized my health. Overdose is bad but underdose can actually kill you if your swallowing is so bad you inhale fluids as you sleep.

Eat well and maintain an optimum weight. Good nutrition is critical and timing eating so it doesn't interfere with meds is also critical.

Check out deep brain stimulation. If sinemet really helps your loved one then so will deep brain stimulation if they are a good candidate. Yes it can be done if your PWP has some dimentia but only certain really skilled teams will do it like University of Florida at Gainesville and Dr. Okun is part of that team on the Ask The Doctor on here.

So cheer up and LIVE your life and let them live theirs. Believe it or not the caregiver, if of the same gemera; age, usually dies before the person you are caring for so TAKE CARE OF YOURSELF and do the things you love to do also. Parkinson's is VERY annoying but being hit by a truck is a lot worse. :mrgreen:

thank you for this great writing....clear and very real.

#4 Sam55

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Posted 02 January 2012 - 08:51 AM

Wow!
Love this- any Newbies like me need to read this!

#5 LoveMyHubby

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Posted 16 July 2013 - 06:14 PM

My FIL gave my hubby the MJF book at one time and I wish I could find it. The post above was great reading. I am curious about Sinemet though. After Googling it and seeing what it helps with it would definitely be useful for my hubby but he still works so that wouldn't be ideal.... There are so many areas in which I need to find help with I don't know where to start!
And he will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away. -Revelation 21:4

#6 carruthers209

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Posted 27 July 2013 - 09:06 PM

Lovey (sorry about the abbreviation but it's easier)-wow, you had to go way back to find this post. Netgypsy was such a wonderful resource for this website and Shakti was also an important poster but we haven't heard from either one of them in a long time. I think it's the toll of Parkinson's. Sorry about your husband's Parkinson's. Sinemet (carbidopa-levadopa) is a blessing to the Parkinson's community because it's really the only medication that alleviates the symptoms. The first several years with Parkinson's tends to be relatively problem free but it progressively gets worse and Sinemet is what will help keep the symptoms manageable. Your husband shouldn't hesitate to see his neurologist and ask for it if he needs it. There is old information out there that using Sinemet early on will create problems later. That isn't true. You might go to Ask the Doctor and pull up his advice on this since he directly addresses the long term efficacy and benefit of using Sinemet.

The very best resource out there-other than this website of course-is Dr. Okun's book Ask the Doctor about Parkinson's Disease. It's available from Amazon. I've ordered a lot of these books for our support group and every new person that comes to our meetings wants the information that is in this book. His advice is timely and in great depth. He has a new book out-Ten Tips to Living with Parkinson's but it's a different format-much easier to read but doesn't have the huge in-depth knowledge base contained in his Ask the Doctor book. You probably should order both if you want knowledgeable and timely resources.

Wish you all the best and use the resources on this website-Ask the Doctor, Ask the Surgeon, Ask the Nutritionist, Ask the Pharmacist, Ask the Speech Therapist and even a Spanish language doctor. There is nothing else like it anywhere on the web and it's very valuable to actually be able to ask questions from these high skilled professionals with their in-depth knowledge of Parkinson's in each category of expertise.

Try to join a local support group because they're a source of social community and help with the isolation that most Parkinson's families feel. We are told that our members look forward to our monthly meetings each and every month because they feel so affirmed and have a place to get their issues and needs addressed along with having speakers who lift everyone's knowledge base.

Christy

#7 johnnys

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Posted 12 October 2013 - 09:21 PM

Thanks for writing this.I have a good attitude about my PD.Just live one day at a time and hope for the best.Many I know weathered the disease very well over many years.






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