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By LOHENGR1N On 2014.01.27 00:13
To start this I'm stealing the phrase used in "the neurowriters guide to the peripatetic pursuit of parkinson disease" ...."If you're as strong as those living with PD, read on."

I didn't know where to put this so I started it's own tread. I've always said to those early in our disease to do all you can, even if you're having a bad day as in 5, 10 or 20 years these bad days will be looked back upon as good days and you'll wish you could have them again. I've always cautioned caregivers to not jump in and take over too much too soon. And I've become cynical with much of the medical field over the years. If you go to OT, PT Chiropractor or Doctor and hear your problems is this side of your body has muscles that are stronger than the other side so we have to strengthen the weak side or your stooping because your back muscles are weaker than your abdominal muscles. You've gotten into the habit of slouching so you have to learn good posture. Things like that then run for the hills! Because regardless of what they say they don't know squat about P.D. To some I've been viewed as a wet blanket for stressing when considering medical procedures make sure that P.D. is taken into account because We are not the "normal" patients.

I've really agonized about posting this as it will upset some here probably. I say his because when I pointed it out to my eldest daughter She reacted with what's that got to do with anything!?! Well really a lot. It relates to a perspective from a long time PWP, life, death and even a peek at the medical field. Let me tell you about a friend and fellow warrior in this battle we face every day.
In the back of the book "the neurowriters guide to the peripatatic pursuit of parkinson disease" among the postscripts is "My way out" Paula Wittekind sent this piece to friends and family and posted it for online friends on the NeuroTalk forum May, 2012. (I have paraphrased it.)
In it She relates how after 25 years with P.D. we expect to slowly lose function in all ways, speech slurs, muscles freeze, swallowing problems and danger of falling. Insides become sluggish and back up. Internal tremors not always seen show up on machines, how possibilities are endless on how life will end with P.D. Paula's was revealed to her with a dx of esophageal cancer. She tells how upon waking up from the endoscopy the doctor told her you have a tumor
Paula; "is it cancer?"
Doc; "I think it is you will need chemo and radiation"
Paula; "I finally got a way out."
Relating after a seeming lifetime of bloating, food backup and heartburn She didn't care if it was the P.D. that caused it, She used to smoke and drink but suspected the sludge and juices in the digestive system the wore out her esophagus. It goes on lymph nodes, sprinkles scattered on the PET SCAN and a spot on Her lung (not identified at the writing) but "likely to contribute to a way out like it or not." She relates that brings the reason for writing this "I am not afraid. Wether you realize it or not, Parkinson's prepares you for death, especially as years go by and you suffer losses all along the way that you can't get back" "I am not depressed, I'm relieved. I basically haven't felt well since I was 35."
She relates " I have become pretty cynical about the medical community and seem to see more waste, competition, repetition and dishonesty than success and compassion." She read an article Doctors Die Differently, that Doctors don't take as much treatment as they prescribe. She pressed her oncologist on this and he said he'd decline treatment if he had P.D it would make P.D, present in all it's worse ways. He may have a little radiation to shrink the tumor for easier swallowing. That's what She opted for. She felt all she had gained throughout the years from exercise would be ravaged by treatment. She would cash in Her life insurance and travel as long as she could prove she had 1 year to live the doctor gave her 2 to 6 months on the form. She then realized how bad it was but "Again no butterflies, no fear, just acceptance"

Paula used her insurance not to travel (the radiation weakened her) she rented a condo looking down on a bay with dolphins frolicking and great sunrises, friends and family visited and stayed in her final months in hospice care, She died surrounded by love November 8, 2012.

My friends live to the best of your ability, try to not dwell on the small stuff. Enjoy each other in the good and bad. Do as much as you can when you can and be easy on yourself when you falter. This was just a brief peek into a life filled with determination, drive, and overflowing love for her fellow sufferers and their loved ones, and people struggling. A life that still through her works and words reaches out and touches others. Paula you are yet a comfort in this hostile world.

In the words of Bob Dawson "We all live long enough; it is really the quality of life that matters, to not stop marveling at the beauty of the universe, and the general craziness of everything.
And everything is funny, some of the time. It's a disease that teachers a lot. Not what We would have chosen; but it changes the world you live in and you see great and horrible things, the best and the worst. It's a strange adventure"

By Mary556 On 2014.01.27 08:33
thank you, Lohengr1n. thank you, Paula.
there is wisdom and comfort in these words. quality of life is what matters.
I want to read the book soon. God bless all of our PwPs.

By makrivah On 2014.01.27 10:56
Al, once again you provide perspective. You are amazing. I am three quarters through that book. Fascinating (and quite a beautiful publication, high quality paper, fantastic images and graphics and fonts). I learn a lot. I'm brought to tears at I was in your post.

Wednesday my PWP and I fly to Orlando. We meet up with my daughter, son in law, two grandsons (6 and 9), and my son in laws parents (we are good friends too). This trip has been planned for a long time, we finally got our collective act together. The boys are the perfect age for Disney. My PWP can manage. It is a memory for all of us. I pray the boys will only see that Pops was with them watching their joy and sharing the fun. Time should fade the not so fun stuff. With five adults who understand the limitations of PD, my PWP should manage. And my daughter is an RN.

The stress of airports, new surroundings, etc. should be interesting for his stamina and cognitive dysfunction. I must keep in mind that our goal is EXACTLY what Al has stressed. Live life to the fullest. Make happy memories today. You'll need them tomorrow.

God bless all of you.

By JulieB On 2014.01.27 11:11
I found what you shared encouraging and affirming to what my husband and I have already talked about a few times. I have told my grown children that if I'm ever in a terminal state (thinking mostly of cancer), that I know already I will most likely not take any treatment, and that quality of life means more to me than length of life. I would rather have three decent months with family and friends and beauty around me, and peace about dying, than 3 horrible years fighting through various debilitating medical protocols, just to hang on to a little more time. When you're not afraid to die, it makes a difference in the way you live. I also know this is easy for me to say right now since I haven't been diagnosed with a terminal disease. Thank you again for sharing this... xo

By jcoff012 On 2014.01.27 16:52
From another perspective...I was told I had uterine cancer and a year later our son was told he had testicular cancer and a footabll size tumor in his abdomen, so..."get your affairs in order before this surgery"...both made us stop and think about life and death. While I firmly agree that everyone has and should have the right to choose how to live and how to die, I know that I am going to fight for my life as long as I can...and so will Carl.

Unfortunately, we have had to face a time thirty years ago when we took our 15 year old off life support. Then, my diagnosis and several surgeries, and, a year after my dx we had to face the probable death of our son...and had to watch him make all of the same life and death decisions for himself and his then five year old daughter...Then, Carl's dx...


As individuals, we made our own independent decisions and we made our wishes known to the others. We all have DNRs and medical health care papers. All of our physicians and Carl's new neuro have copies and know our decisions...

Now, lest I am giving anyone the wrong message...None of us want to be put on life support, mainly to spare the need for someone to decide when and if to remove it...However, we all have said we are going to fight, not give up hope, research, and dig in when times get rough. We firmly respect anyone else who chooses differently.

I should also share the last four years, my almost 95 year old Mother has had three heart attacks, has diabetes, COPD, a stroke, and was two weeks ago in the hospital and was put on oxygen for congestive heart failure...Up until her 90th birthday, she was adamant that she did NOT want to be put on machines, given oxygen, etc...BUT, when in the ambulance and told she had the choice now, at her age, of the oxygen or the inevitable, she chose the oxygen! I asked her this weekend, "Why, Mom? Are you afraid tp die?" "Nope. I knew it wasn't my time. I wasn't ready." That was it...

So, maybe we can all take that to heart, too...Rest your fears for now. Be prepared. Make your decision. But, things may change...either way...Carl says for now, he will fight...but, we still talk about 'later'...who knows?

Thank you for posting, Al...Oddly, I have been thinking about all of this, too. No one has the answer, but we all need to think about it. Love, Jane

By jcoff012 On 2014.01.27 17:01
As I always do, I just reread your initial post, Al..."Whether you realize it or not, Parkinson's prepares you for death, especially as years go by and you suffer losses all along the way that you can't get back."

This says it all. Acceptance.

Again, Al, thank you for this...we will fight, but reading this makes me, as the caregiver, understand Carl's recent, "It is was it is." statement that got me thinking, too...Hugs, JC

By parkinit On 2014.01.27 22:31
Al, well put, and from what I can tell, no one is mad at you yet!

I believe at this point, if my husband had an out like Paula's, he would take it, too.

By olpilot On 2014.01.27 23:25
I just recieved my copy of the book today, for the first time I thought about the passage you wrote Al, about that part of this. Jane I understand, as much as I can anyway, the overcoming cancer and being a surviver, but with this there are no survivors. We have no opponent that we will overcome. We have no disease to win over. I may develop cancer and beat it, but I will never beat this.
I think I understand the phrase "This is my way out". All of the exercise programs, therapy, drugs will never change the outcome. Her solis came just from knowing that there is an end to the never-ending deterioration that Parkinson's brings, and knowing that the end will not be out of contact with loved ones, in diapers changed by some u.knowing, uncaring person.
Sorry to be such a downer here, but as I thumb through this and go through a change of medication at the same time, removing Requip and going to sinemet, I got very emotional tonight.I still have very high hopes for tbe future, I'm certainly not giving up on life, but there was a bit of a reality bite tonight.

By LOHENGR1N On 2014.01.28 00:30
Steve, I hear you my friend. I know what you mean and how you're feeling. (well not the withdrawing and changing med's but you know what I mean). We don't give up on life, we keep fighting on, Paula didn't give up on life either She just saw light at the end of the tunnel so to speak. With P.D. for over 25 years She knew that the cure for cancer if any would be devastating to her physically and take everything she had leaving nothing to battle P.D. with. And if no cure treatment would create a hellish existence which by even the most optimistic would be hard pressed to call life. At times like that We know and our loved ones have to know it is okay to let go. We put everything We have into this battle, grudgingly giving ground bit by bit. When We think We have nothing left We dig a little deeper and somehow find just a bit more to fight with. Paula's choice was Hers and Hers alone to make and having made it, She, even then, faced it with undiluted courage just as She battled P.D. as you said P.D. is a no win disease even without adding something like cancer to it. It can't be beaten. None the less We fight it because it is the right thing to do (That reminds Me of a saying my Mother used to tell us as Children struggling with a problem, "When God created man He gave Him a backbone not a wish bone you can do it" Many's the time I grumbled and gritted my teeth at that remark but it has served Me well all these years...Thanks Ma!) But I digress, I posted it because sometimes it is the right thing for Us to do in situations like Paula's all battles must end and She ended up being able to choose Her way out, To Me that was a victory. Some reading this might in puzzlement be thinking what? To Me in My view after all Parkinson's Disease had taken away from Her throughout Her battle in the end SHE still got the upper hand and the ability to choose not P.D. it didn't beat Her into submission or to depressed drastic actions it truly became Her way out.

Steve we all have emotional patches (spells) we go through from time to time it's okay and understandable. You're not a downer, reality sucks! And you can feel free to write it down when you need I do and I find it helps to get it out, write it down and then move on. Take care My friend and hang in there

Doc Holliday: What did you ever want?
Wyatt Earp: Just to live a normal life.
Doc Holliday: There's no normal life, Wyatt, it's just life. Get on with it.

By jcoff012 On 2014.01.28 09:40
Steve, your statements were beautifully conveyed...please do not ever think you are a downer...PD is the downer, not the PWP...And, you are 1000 percent correct...Perhaps it was cavalier of me to imply that one disease was more deserving of concern than another...You are right...with the cancer there is hope...I can attest to that *been eight years in a few days*.

You, Al, and Carl...and all of the PWP on this board and in this life are the true heroes here. I have said many times that *I* could not face this head on. The fact that there are men such as yourselves who are willing to share your feelings, give advice to those in need, to visit this board and offer your own experiences means the world to me...and many others.

I, like many here, wish above all, that we could take this away from you for even one day. To give you back all you have lost would be a gift that would make the futility of this disease seem bearable for everyone. If it helps to come on here when you are down, please do...we will listen...If we can help you in anyway, please tell us...There is no judgement of you here, only compassion and love...and for those of you who are able to help others along the way, we are proud you are here...You mean the world to us all.

Hugs and love and thank you both for beautifully crafted postings...always...your messages are heard by all of us. Jane

By LOHENGR1N On 2014.08.15 00:50
I bumped this up because in a way it relates to the Robin Williams post.

By mylove On 2014.08.15 12:05
Thanks, Al. *hug*

By Marilyn-NJ On 2014.08.15 12:30
I read more than I post as I find the postings could be my words. I come here for intelligence, knowledge, support and solace. I am never disappointed. I thank you!

By dans316 On 2014.08.15 15:24
June just passed the 5 year mark of her mastectomy. Her Oncologist suggested she shouldn't get a yearly mammogram anymore. His comment asking what would we do if it was positive was troubling. Maybe he was suggesting "a way out"???

She has an appointment with the surgeon who did the mastectomy in September, and who orders the mammogram, so we will wait for his advice. June has not shown any signs of depression as yet and in spite of her weight loss which for now seems to be stable, she is in fairly good health other than the Parkinsons.


By jcoff012 On 2014.08.15 21:06
Dan, the five year mark in women's cancer is the benchmark...chances of recurrence go WAY down after that...

I am in year eight...As of two years ago, I was told by the doctor I so dearly love, that I should only have mammograms every two years, if that...I had one this year, two years later and it was fine...

What I was told was the AMA says that women are subjected to way too much radiation, and if something was to recur, it is usually before the five year mark...

Tell June congratulations! Don't read too much into the doctor's comments because that is what they told my Mom and she is 95 soon!

Hugs and aloha!

By moonswife On 2014.08.15 21:39
Boy, Robin Williams is on all of our minds. I am amazed at how similar many of the posters lives have followed the same path. I just saw my oncologist monday and he said, after 10 years of good mammograms, do not come see me any more, unless your primary care Dr does not like a mammo. When Kaiser came and filmed the commercial of Mike and I because I said I HAD to survive cancer to take care of him, they were so intrigued they spent hours here. They filmed so much footage and were delighted that the his a "Superstar" because of his attitude.

By ResistanceFutil On 2014.08.16 10:20
Thanks for bumping this post up - I either hadn't read it or am reading it with new eyes

By dans316 On 2014.08.17 15:17
Thanks for the reassurances and hugs. As I said she is to see her surgeon and have a mammogram done, so hopefully this will be the last one. What confused me and still does, when my mother was 92, her PCP said she should have a mammogram so I wondered why it would be worse for June if her test turned out positive, than it would have for my mother at age 92??

Also wanted to mention that my mother went into a nursing home at age 94 and while there fractured her hip. For whatever reason, she stopped eating. I would feed her and she would eat maybe one spoon of mashed potatoes and then refuse any more. I also had two aunts who did the same thing and I always wondered if that was their way of suicide. One of the aunts, my mom's sister, had fallen and fractured her neck, the other was my dad's sister and shortly after her 100th birthday she also started to refuse food. That is what disturbed me with June and her not eating, but she assures me she doesn't want to die yet. I'm having more success with small snacks, yogurt, cheese, fruit, soups, ice cream and milk shakes. She still isn't gaining, but at least doesn't appear to be losing anymore.

Planning another Luau for the end of September for June's birthday.

Me Ke Aloha,

By jcoff012 On 2014.08.17 19:50
Dan, I waited to respond til I spoke with Carls sister...I think I told you once that Carl's Mom had ZERO body fat...she weighed less than 90 pounds...she, too, ate very little...But, she was always a tiny woman...probably the only time she had any weight was when she was pregnant.

You say June is eating some, so I don't think she is trying to stop eating...I think she is just a small woman who is alive, not expending the calories she takes in because of inactivity, but is nourished. That comes from speaking with Carl's sister and her talks with the doctor. He told her that Mom was receiving nourishment, so not to worry. *She was very little, even after her fall and her placement in the nursing home...where she ate well until the final three days of her life.

Hang in there. As for the mammograms, I still say not to worry...Just my opinion...we women are tough! Jane

By olpilot On 2014.08.26 03:01
A while back I posted we were going on an adventure, we were going to be camp hosts in upper Michigan. Thats were I heard on a very rare contact with the outside world about Robin Williams. The loss of someone who has been such a great break from reality is so tragic it is hard to put into words. He has allowed us to go to places most minds don't go. We all know how hard it is to be told you have pd but after having spent almost 5 weeks doing this simple thing a nd working the day to day problems I still felt useful. Depression is an early sign, we need to let people know that it isn't a caracter flaw it is a disease like any other and to get help for it. We have all had it at some point. I know I'm not perfect, I am human at times I need help Parkinson's sucks but there is still a great big beautiful world out there. A real irony ia a movie he did several years ago called "What Dreams May Come". I think of it often.

By carman96 On 2014.08.15 21:01
Wow, all very touching posts. I think it does pertain to the other post about Robin Williams.
I think it comes down to quality vs. Quantity of life.
This is a great reminder to live each day to the fullest.
Dan, glad thet June is stable for now.
Sometimes being a Caregiver is like waiting for the next crisis for our loved ones.
Hugs to everyone. We all need hugs once in awhile, right?

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