Finding Joy in the Midst of PD

[Josephsimon]

My dear new friends,

I've been on this site for such a short time and you all have taught me so very much and I am so grateful to you and to God! When you see this topic, Finding Joy in the Midst of PD, please know that I might use the words God, my Creator, the afterlife, Heaven etc. Please know that these words are not meant to "raise the hairs" on anyone's arms! What my objective here is to share my experiences, whether they be physical, mental, emotional or spiritual. This might sound crazy but I love all of you already. If you were nearby, I would gladly welcome you into our humble home located about 10 miles north of Baton Rouge, Louisiana! I would make the biggest cup of dark Community coffee and would serve you a piece of King Cake, because since January 6, we have entered Mardi Gras season!

Louis and I belong to one of the PD groups in BR. They persons we encounter are all very nice but I have not bonded with them like I've bonded with you. We meet once a month, sit around a big table (about 30 couples) and hear different topics like the PD boxing classes in BR, the annual PD conference at our big annual Pennington Research Center in BR, etc. after we leave, we mostly don't hear from each other until the leader e-mails us about the next meeting. There is no back and forth banter like on this site!

Louis has taken part in the BIG therapy in BR. Big Movement and BIG voice! Four weeks, four days a week, two hours a day - very intense! It works but many times, he is too fatigued to do it with me! I need to work harder at picking the right time!

Louis slept really, really well last night and that means that I slept well. But getting him down was a whole different story. At about 7 pm, Louis starts to "wilt." I don't want us to go to "bed" bed yet or give his meds quite yet so I tried to make him as comfortable as could be. Sitting in his recliner, propped back, he kept saying how cold he was so I started piling blankets on him. "There's air coming in," he'd keep saying. "Where is the air blowing from?" Finally, I took out the brand new heated mattress cover and I laid it over him and his pile of blankets, turned it on and he relaxed and said that it felt good! YES!!! Two seconds later, however, he raised his head and said, "I've got to poop!" That's when I need my most patience - 7 pm on! I'm tired and his meds are wearing off! And that's why I seek Joy in the midst of PD.

Remember - I don't want to hurt anyone's feelings! I don't seek any followers! And i am speaking for no one else but me! I don't pretend to know all about PD. In fact, compared to some of you, I know that I know very little! When I try to say something funny, I am NOT poking fun at anyone! I don't know about you, but there is very little to laugh at around me right now!

Thank you for listening! Louis has never been one to chatter so you are a captive audience! "Laissez les bobs temps rouler!"

[Josephsimon]

"Laissez les bons temps rouler!" "Let the good times roll!"

"Joie de vivre!" "Joy of living!"

"Lache pas la patate!" "Don't drop the (hot) potato!" Means "Don't give up!"

[Beckey]

Yes, let the good times roll! I have to confess I roared with laughter at your description of life after 7 p.m. Only in this group can I laugh about life with PD. We understand each other!

[Beckey in reply to Beckey]

Don't drop the hot potato -- I love that!

[DEAT]

Thank you for sharing this email. I understand how you have connected with the people on this site.

I feel as you do that they are my friends. I value the support we have from pwp here.

My spirits have been lifted many times by reading the posts.

Joy to all.

[llwwd]

If I haven't told you "welcome" yet then WELCOME. I like to hear from upbeat, happy people. Thanks for your note. I agree with you about this site. So many smart, nice and caring people It's so nice to be able to have a place you can go to where you can complain about your symptoms without wearing out the people who are around us all the time. I have learned so much on this Site too and I am grateful to all of you.

So hears to finding a cure in 2017!

Hugs, Sherry

[hermie]

Well i find joy in all i do. In last three days apart from getting a Labrador as a pet who has made my walking faster coupled to group dancing which i do, i did cycling this morning and do exercises in evening and water my garden by lifting cans which takes 30 minutes a day and two hours a day of lecturing makes me believe if i take my medications timely i realize that PD is not degenerative but can be controlled with positive attitude even after six and half years into this.My take We are winners for life - Enjoy and participate in every activity based on you own off state and be a happy person

[Josephsimon in reply to hermie]

I am so very happy that you have found happiness. Louis is 78 (TODAY) and he has slipped away from some of his beloved activities like gardening and hunting and reading. Part of that is frontotemperol dementia which may or may not be related to PD; I don't know. I do know that he has 5 children and 10 grandchildren who love him very much. They give him lots and lots of LOVE and attention. I guess I am looking for Joy for both of us. I try not to leave his side, but the children insist that I go out once in a while. I am a retired teacher and I find joy in helping our oldest, 20, with his college Calculus. It's a challenge because I have not studied Calc for 50 years. I am 69. I honestly don't think Louis could find Joy on his own. So I continue to try. We saw La La Land and he enjoyed the music and the bright colors as I did.

Keep sharing your life with us. We MUST support each other. We MUST continue to educate about Parkinson's! Around here, more and more people seem to be diagnosed. Many don't want others to know because they are embarrassed. That's too bad, because there are such good meds and therapies out there. One friend of ours was diagnosed, saw our young neurologist, said his meds did not work, and quit going. So sad!

Praying for you tonight. Oh, What kind of veggies do you have in your garden? Louis used to plant tomatoes, cucumbers, corn and bell peppers. We showed the children how to dig potatoes and peanuts! Louis has an orchard that he can't manage anymore. Domestic grapes called muscadines and blue berries and satsumas. Now we open our back pasture to many, many people to enjoy the harvest. That has given us much joy. Many persons return with canned jelly that they made with our fruit.

Kathleen

[hermie in reply to Josephsimon]

Well today was my quarterly visit to my PD physician. He was smiling and told me that the person he is seeing is fitter with a better smile and reduced effect of PD. He associates it with the wrist which is the farthest part of the body which gets impacted first....My gait body posture and shuffling have undergone significant improvement. I need an elliptical cycle which is currently out of my budget.

In garden i grow tomato, lentil, wheat and beet root. It is satisfying as well as mediation for me......

[Annie11]

I love you already..something in your tone this morning just gave me such a warm feeling..I've been to New Orleans once for a nursing conference. I fell in love with the city and its people..I live in Alberta CanadA

I was diagnosed 5 yrs ago had to quit my passion o oncology and palliative care.. I've not done as much as I could have in excercise etc. but after a recent admission to hospital because doctors are not talking to one another. I was on amount of Sinemet which was dangerously high. Long story . It's now been 4 weeks and I've taken more iniatives to excercise daily and eat better.

Again it was really nice and soothing for me to read your blog this am...hope you post again soon.

[Josephsimon in reply to Annie11]

My dear Annie11,

Louis and I have traveled to Canada four times, not Alberta but the Eastern Provinces of Nova Scotia, New Brunswick and Prince Edward Island. WE LOVE CANADA. Louis and I have both traced our ancestry to the Acadians in Acadie who were deported beginning in 1755. I know you know Longfellow's Evangeline. That's our story!

I'm glad that my words helped you. I LOVE words, to talk them, write them, think them and read them. I have not "pushed" husband, Louis, to exercise as much as I should, I guess. Sometimes, he just doesn't feel like it.

I'm curious about what a "dangerously high" dose of Sinemet is. During the last few days, I've noticed a change in Louis. He gets freezing cold and then very hot. It's weird. I know that he was on Stalevo many months ago because of his akathesia. Then he had a HORRIBLE hallucination/delusion and when I brought him to see the neuro on duty, he pulled the Stalevo out completely and put him on Nuplazid. Anyway, no more hallucinations but not much sleep either so his neuro put him on one Stalevo with one Stalevo and a Remeron.

I hope the change in Louis is going to taper on so he can enjoy more of life. Today, when we were getting ready for church, he told me that he felt like he was going to fall. So I grabbed his Drive and used it for church and for his birthday meal after.

So what did you do in Oncology and Palliative Care? I hate that you had to quit. That means you were not near retirement age. We have a daughter who is an Internist, a daughter who is an RN and works with the St. Jude Affiliate in BR. She is well versed in Palliative Care because everyday, she works with dying children. Our son is an RN also, but has stopped his practice to start a restaurant business. Our fourth child is a Speech Pathologist and #5, the Caboose, is a registered Dietician in San Fran.

The children are very, very supportive with their dad. Do you know if Parkinsons is hereditary? Louis's sister has Picks and she has been in a vegetative state in a Nursing Home for 2 years. We have told our children NO to that. Don't put us on a feeding tube. Louis and I did our DNA and I need to go back and check but I believe I read that they are doing some studies with Jews and Parkinsons. Louis has Jewish blood.

I know that the above words are not soothing. As I mentioned, Louis's 78th BD is today and it was one of his "not so good days." That was too bad because he was really down as he ate and as we celebrated his and four other January BDs. He was just not himself.

I wish I could give you more soothing words tonight, but I know that you understand that it is not always Joyful! But I'm not going to quit looking! I do thank God everyday for both of us for what we are going through. I know that doesn't seem fair, because he is the one who is suffering. But I do it anyway and of course, I ask God to bless and keep him. I am supposed to turn 70 in March! I have decided to roll my 69 for another year and enter my 70th in the company of my two friends who just turned 69! HA

Take care, sweet Annie. Again, I love Canada! Our hosts even cooked some moose meat and it was so good! Do you eat moose??? It's a nice cross between deer and beef, in my opinion.

Kathleen

[Annie11 in reply to Josephsimon]

Hi Kathleen

So glad you only have kind words for our country as I do feel it's the best country..our people are strong, kind and generous sometimes to a fault..you would love the western provinces as well.

My dangerously high doses of Sinemet were around 2400 and according to my neurologist I should have been on half of that.

I was also given prescription for Ativan for anxiety and told to use liberally..at the same time I with doctors approval and instructions were weaning off Effexor. A perfect storm..I missed most of November and December, . Admitted Jan 2 to hospital with a cardiac event and overdose on Ativan and Sinemet...I was pretty sick...not sure where or who is made accountable. I do know the physicians were not talking to one another in my case...a huge lesson learned. Wow your kids are all caregivers just like their mom...I had to quit 5 years ago she diagnosed. I was working with the gyne/ ovarian group as nurse manager at the time.

A short note today as I'm up and out to the doctors this am.

Deb Annie