Living with Parkinson's Disease - Meet others & come say hi

Welcome to the Parkinson’s Disease group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with Parkinson’s or caring for someone with Parkinson’s. Let’s learn from each other and share stories about living well with Parkinson’s, coping with the bumps and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by fellow member and volunteer patient Mentor, Teresa (@hopeful33250), when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself?

@hopeful33250

Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @macbeth. Well we finally have our own group! I’m excited to learn more about you and have some more topics for discussion. Let us know how you are doing and what has helped (or hindered) you in your daily life with Parkinson’s. As we know, all of us are stronger together!

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Hi Theresa

Been off the grid awhile. We decided it was time to start on our bucket list so we took a 16 day Panama Canal trip, 1 day travel and an overnight stay at each end. Also told the kids in person. They handled it pretty well, son stoic and daughter just a little weepy. I feel bad for them. Canal isn’t especially special – no drama which is the point of digging it -so that ships can routinely make the transit safely. Took 4 bus and walking tours in Costa Rica and Mexico, saw some whales. I was dead tired each day and napped a lot but I did better than I would have thought. Went with my best friend and his wife and she is a nurse so she kept me from overdoing. Last day my wife and I both got flu and sinus/upper respiratory infections so that made s tough 2 day trip home – and a BIG on-board medical bill. This time of year all the kids are in school so most of the passengers move a bit slower and understand when I was tired or the boat moved and I had to move slower or hang onto something. Only problem is that everyone in bikinis was my age – 70’s. Oh well didn’t have to suck in my food-bump.

Lessons
Panama Canal trip probably isn’t worth the cost – take a couple shorter trips
With proper planning, I can do more than I thought
If not now, when?

The Parkinson’s Foundation go-bag is like a small Dopp kit and has a silver medical alert PD bracelet, laminated wallet drug interactions fold-over card, other info and ads. If I don’t wear the bracelet I have it in my pocket to alert EMT’s and the card lives in my wallet and I keep backup pills in the kit in case of evacuation for fire or whatever. The card can also be downloaded from their website.

By the way, Walgreens has really small sealing envelopes by the pill bottles perfect for keeping the day’s pills or backup pills dry in your pocket in the rain or if you get splashed by a whale.

Walk 2 miles on the treadmill 3 times a week and spend 30 minutes or so on weight machines.
Go to monthly PD group meetings at my neurologist’s hospital.
The Sinemet with caffeinated soda seems to work well when I have changes in my schedule and need to compress the pill/protein time. Or I get busy and forget.
Doctor limited me to one drink a day, no red wine and I skipped most of those. Bummer.

The Azilect doesn’t seem to have any food interactions with my normal diet as had concerned me.

Steve

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Colleen, I wanted to ask or pick your brain, I have been increasingly becoming more and more depressed, how do you handle the daily depression- you I was trainined in that whole area of Psychology for 5 years. PTSD- I know caused depression-which I have for over 7 years now- maybe the Parkinson’s depression really puts me in a very deep fox hole. Sometimes I have to climb up to touch the bottom. The Doctor found that my bones have been affected all through my back- they don’t know why, except they are very bridal – they know agent orange cause cancer of the bone and they did a number of blood tests looking for bones cancer- Thank God they haven’t found any yet, I do know that Agent orange will( in time) become cancer.-some where in your body- the way it works and it’s MO. Thanks for listening and for any advice- I very much appreciate. JJAMES

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@hopeful33250

Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @macbeth. Well we finally have our own group! I’m excited to learn more about you and have some more topics for discussion. Let us know how you are doing and what has helped (or hindered) you in your daily life with Parkinson’s. As we know, all of us are stronger together!

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@ggopher Hi Steve, it is good to hear from you. Thanks for the travel update, sounds like a lovely trip – I’m sorry to hear of the upper respiratory problem, though. I’m glad that you are making some progress on your bucket list.

Wow, I’m very impressed with your walking/exercise routine, that is great. Exercise helps with balance, range of motion and also helps stave off depression and anxiety. I’m also glad to hear that the Azliect is working well for you without any undue complications. From what you have written it sounds as if you take it in addition to the Sinemet? Glad to know that you are still meeting with a support group. That really makes a difference, doesn’t it? It helps keep us connected with the struggles and victories of others.

I appreciate your letting us all know about the sealing envelopes for the pill bottles, sounds like a good thing to have (especially when traveling).

Thanks again for checking in with us. When I don’t hear from our members, I get concerned. Best wishes to you and your wife, Teresa

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Hello to Everyone! I’ve been away awhile trying to sort through physical and mental difficulties and make life decisions. I have recently gone on disability indefinitely. I began this PD journey 1 year ago. After coming to grips with my diagnosis which took a couple of months, I began a proactive approach and mindset to exercise, diet and general lifestyle choices. I began to slump and fall of in my quest in September, 2016 when my father suddenly died of a massive heart attack. I wasn’t necessarily that close with my father, but he was my father nevertheless, and my last living parent. It did have an impact that I didn’t anticipate. I am an only child and his passing began a series of flashbacks and memories of all those that have left my life. Depression started setting in an I became more sedentary and isolated. The holidays were a struggle and working became more and more of challenge. So, I decided to go on disability to try to get back on track. It is very scary–I’m only 60 years old and not really ready for retirement mentally nor financially. But, I felt myself slipping away to the point that I wouldn’t be good for anything or anybody very soon. Feeling better physically because I have gone back to PT and now have OT and will begin ST therapy again real soon. Looking for a physical support group and group exercise, something I couldn’t take advantage of while working. If anybody has insight and experience with filing for SSI and the process, please share.

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@denie57

Hello to Everyone! I’ve been away awhile trying to sort through physical and mental difficulties and make life decisions. I have recently gone on disability indefinitely. I began this PD journey 1 year ago. After coming to grips with my diagnosis which took a couple of months, I began a proactive approach and mindset to exercise, diet and general lifestyle choices. I began to slump and fall of in my quest in September, 2016 when my father suddenly died of a massive heart attack. I wasn’t necessarily that close with my father, but he was my father nevertheless, and my last living parent. It did have an impact that I didn’t anticipate. I am an only child and his passing began a series of flashbacks and memories of all those that have left my life. Depression started setting in an I became more sedentary and isolated. The holidays were a struggle and working became more and more of challenge. So, I decided to go on disability to try to get back on track. It is very scary–I’m only 60 years old and not really ready for retirement mentally nor financially. But, I felt myself slipping away to the point that I wouldn’t be good for anything or anybody very soon. Feeling better physically because I have gone back to PT and now have OT and will begin ST therapy again real soon. Looking for a physical support group and group exercise, something I couldn’t take advantage of while working. If anybody has insight and experience with filing for SSI and the process, please share.

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@denie57 I am so sorry to hear of the loss of your dad. Whether or not it was a close relationship, losing your last parent is a tough experience for everyone. It is so good to hear from you!! When we don’t hear from our members, I get concerned. It sounds as if you have been making some major changes and I’m glad that you are feeling better as a result. Regarding applying for SSI perhaps some of our members, @chrisj2491 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle @macbeth @knightkris, have information about that. You can certainly go to a Social Security Admin office in your area and talk to them. I understand that there are advocates that assist people get SSI, so you might see if you can research that online and find a SSI Advocate in your area and check out their cost and their success rate. It is sometimes good to have an advocate to help you plead your case. In the meantime, enjoy the slower pace of your life. I retired a few years before I wanted to but I’ve really enjoyed the time to devote to exercise classes and getting the extra rest that I need. Teresa

Liked by denie57

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@hopeful33250

Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @macbeth. Well we finally have our own group! I’m excited to learn more about you and have some more topics for discussion. Let us know how you are doing and what has helped (or hindered) you in your daily life with Parkinson’s. As we know, all of us are stronger together!

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Yes, the Azilect is an addition. There is some thought it may slow the progression. Worth a try.

Steve  

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@johnjames

Colleen, I wanted to ask or pick your brain, I have been increasingly becoming more and more depressed, how do you handle the daily depression- you I was trainined in that whole area of Psychology for 5 years. PTSD- I know caused depression-which I have for over 7 years now- maybe the Parkinson’s depression really puts me in a very deep fox hole. Sometimes I have to climb up to touch the bottom. The Doctor found that my bones have been affected all through my back- they don’t know why, except they are very bridal – they know agent orange cause cancer of the bone and they did a number of blood tests looking for bones cancer- Thank God they haven’t found any yet, I do know that Agent orange will( in time) become cancer.-some where in your body- the way it works and it’s MO. Thanks for listening and for any advice- I very much appreciate. JJAMES

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@johnjames, first and foremost, I want you to know that we are here and we will always listen. While you are trained in psychology, there are times that we all need the help of a professional. JJames, do you have a therapist?

You are carrying a big load. I hope sharing your burden can help lighten the load. I know you’ve connected with @trouble4343 in the past and talked about dealing with PD/mental health combination. Dorothy, I was wondering if you had some thoughts to share with JJames?

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@denie57

Hello to Everyone! I’ve been away awhile trying to sort through physical and mental difficulties and make life decisions. I have recently gone on disability indefinitely. I began this PD journey 1 year ago. After coming to grips with my diagnosis which took a couple of months, I began a proactive approach and mindset to exercise, diet and general lifestyle choices. I began to slump and fall of in my quest in September, 2016 when my father suddenly died of a massive heart attack. I wasn’t necessarily that close with my father, but he was my father nevertheless, and my last living parent. It did have an impact that I didn’t anticipate. I am an only child and his passing began a series of flashbacks and memories of all those that have left my life. Depression started setting in an I became more sedentary and isolated. The holidays were a struggle and working became more and more of challenge. So, I decided to go on disability to try to get back on track. It is very scary–I’m only 60 years old and not really ready for retirement mentally nor financially. But, I felt myself slipping away to the point that I wouldn’t be good for anything or anybody very soon. Feeling better physically because I have gone back to PT and now have OT and will begin ST therapy again real soon. Looking for a physical support group and group exercise, something I couldn’t take advantage of while working. If anybody has insight and experience with filing for SSI and the process, please share.

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Regarding SSI go to Social Security office and the workers will tell you if you qualify for SSI on the spot. At least
they do in my town, I had to sign a paper that said I did not want it. It is not much. I don’t want a lot of government
control, but if you need it every little bit helps.

Liked by denie57

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@johnjames

Colleen, I wanted to ask or pick your brain, I have been increasingly becoming more and more depressed, how do you handle the daily depression- you I was trainined in that whole area of Psychology for 5 years. PTSD- I know caused depression-which I have for over 7 years now- maybe the Parkinson’s depression really puts me in a very deep fox hole. Sometimes I have to climb up to touch the bottom. The Doctor found that my bones have been affected all through my back- they don’t know why, except they are very bridal – they know agent orange cause cancer of the bone and they did a number of blood tests looking for bones cancer- Thank God they haven’t found any yet, I do know that Agent orange will( in time) become cancer.-some where in your body- the way it works and it’s MO. Thanks for listening and for any advice- I very much appreciate. JJAMES

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Thank you for your feed back- it is most appreciated- I see a therapist once in a while, not very often- I have a dear wife who has medicals issues as well- all physical and I really can’t to do the best I can for all involved. God keeps me going and He understands deep depression- something that’s a burden for sure- but it is what is. Thanks Much. JJAMES

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@johnjames

Colleen, I wanted to ask or pick your brain, I have been increasingly becoming more and more depressed, how do you handle the daily depression- you I was trainined in that whole area of Psychology for 5 years. PTSD- I know caused depression-which I have for over 7 years now- maybe the Parkinson’s depression really puts me in a very deep fox hole. Sometimes I have to climb up to touch the bottom. The Doctor found that my bones have been affected all through my back- they don’t know why, except they are very bridal – they know agent orange cause cancer of the bone and they did a number of blood tests looking for bones cancer- Thank God they haven’t found any yet, I do know that Agent orange will( in time) become cancer.-some where in your body- the way it works and it’s MO. Thanks for listening and for any advice- I very much appreciate. JJAMES

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@johnjames Please know that we care for you and your needs for support and encouragement, especially when you are feeling low. Our own physical illnesses (combined with those who we love) can be very disheartening. You have shared with others so beautifully and we value both your responses and your sharing of your needs as well. I know that I’m going to sound like the proverbial “broken record” here, but have you considered a personal support group and/or an exercise program. I believe that you live in the Phoenix area and Barrow Neurological Institute has many support groups, here is the link, https://www.barrowneuro.org/patients-families/. I recognize in the past that you have not shown an interest in personal one-on-one support groups, but as a favor to me would you at least look at the web site and see if there is a group nearby and just call and inquire about their meetings? Also, there is a great DVD exercise program for folks with PD that might interest you. If you would like more information I’ll send it to you by private email as I know that we are not suppose to advertise products. Thank you for reaching out to us with your need, JJames. We appreciate and value you! Teresa

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JJames, you are always such a strong person for everyone else and your messages always touch my heart. Please let someone help you now. I am very much like you in that I don’t share things with others and support groups have been something I have avoided. But perhaps this is the time that you need one. Please consider what Teresa said to you. You are in my thoughts and prayers.

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I have not yet come to terms with having PD. But I know I have it. The depression is difficult to deal with. I search out asaiatance.

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@tntredhead

JJames, you are always such a strong person for everyone else and your messages always touch my heart. Please let someone help you now. I am very much like you in that I don’t share things with others and support groups have been something I have avoided. But perhaps this is the time that you need one. Please consider what Teresa said to you. You are in my thoughts and prayers.

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Thank you sharing and caring-as I’m sure you know well how hard it can be, when time is filled with so many things that must be done-to stop and talk about ones self is humbling and just hard to do. But I have been praying for someone that I could relate to-involving living with the memories of 2 wars and the amount of death- which at times seems everywhere -from the job to just helping others who need a Minister to perform a funeral to walking with someone who’s loved one is on life support. Thank you again and for your geniue caring. JJAMES

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knightkris: If you don’t mind me saying- it is hard- very hard and don’t feel bad about that or beat yourself up for your feelings. it took me almost 2 years before most of everything sunk in to my little brain. I didn’t want to believe, I didn’t want to believe it is caused from Agent orange-a gift from the Viet Nam war. or all the side affects- but with the help of good doctors to talk too and friends and my spouse- it is better now, but the depression is not really that much better- that’s what keeps me down most of the time. Yes, depression is part of Parkinson- But don’t let it direct your path in life, find some trusted friends and do things thats fun and talk it out- dumb it out- which has to be with someone that really cares. In My Prayers my friend-always jjames

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@johnjames

Colleen, I wanted to ask or pick your brain, I have been increasingly becoming more and more depressed, how do you handle the daily depression- you I was trainined in that whole area of Psychology for 5 years. PTSD- I know caused depression-which I have for over 7 years now- maybe the Parkinson’s depression really puts me in a very deep fox hole. Sometimes I have to climb up to touch the bottom. The Doctor found that my bones have been affected all through my back- they don’t know why, except they are very bridal – they know agent orange cause cancer of the bone and they did a number of blood tests looking for bones cancer- Thank God they haven’t found any yet, I do know that Agent orange will( in time) become cancer.-some where in your body- the way it works and it’s MO. Thanks for listening and for any advice- I very much appreciate. JJAMES

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Thank you Teresa- Yes, I would like the information of the DVD, THANKS……I say this with no regrets, my spouse has allot of memories issues and she needs me to drive more than not, She is a wonderful person about not complaining until just in the last couple months– which the Doctors told me that it is normal. She tried her best to be helpful for me and she does allot of good things-others could not. But it still very hard, she doesn’t know the depression is so sever and constant- The medication helps very little and I see my Doctor and I tell him of the situation- but some things we just can;t do or fix. This group helps more than anyone could imagine. Barrow’s is great- but they don’t take my insurance or my the times I need to meet-which I understand, I’m still looking for a group I could sit with and listen. But again this group is awesome and Colleen does a great job. I Thanks God I found you all. Thank you, your very kind and caring jjames

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