Recently diagnosed with PD

Recently diagnosed with PD

I'm glad that I came across this discussion/ forum for those who have PD.

I feel so upset with myself at times. It seems that there must have been something that I could have done to prevent PD from happening. I just turned 68 and I probably come across as whining. I don't mean it to be that way, but I guess there are times when I feel sorry for myself and my wonderful wife, who now has to do all of the driving, who has been so upbeat and supportive

There are so many things that I used to do, that now I can't. I used to play guitar and banjo, but my hands and fingers do not cooperate now.

I attend church and my faith truly helps by providing support to me.

This last Oct. 2016, even before diagnosis of PD, I fell in the front yard and as a result, I broke my neck.

I was taken to hospital where they performed surgery on my first two vertebrae. I'm thankful I'm alive and after five months, I'm nearly at an end of my PT.

But, even though I know that I'm not, I feel like I'm a burden to others.

Feel free to ignore this posting. I know there are lots of people far worse than me, but I'm curious to know anyone else has gone through these mood changes and changes in their self esteem.

Thank you for hearing me out.

39 Replies

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  • Hi jwolfman! Don't blame yourself about getting PD, if it was your fault someone would have come up with a cure by now. Meaning...no one knows what causes it so how can you blame yourself. I'm sure everyone on this site has gotten down and shed lots of tears & anger many times over. You just need to look in the mirror & say "I have PD, but PD doesn't have me!". A little self talk. I believe you need to first accept the disease & then take action. Read & research, read & research....try new things, but be safe about it, discuss things with your Neuro, preferably a Movement Disorder Specialist. Keep your faith, be thankful your wife is so kind, and when you're looking in that mirror tell yourself you were given this disease for a reason & you're going to figure out why & use it to help yourself & others. Keep fighting & don't give up!

  • Hi laglag,

    Thank you for such a quick response to my posting. I will print your comment so I can look back at it often.

    Your thoughts and words are encouraging.

    I think with the pain I'm having in my neck added to the PD, I just get down on myself.

  • I hope it really does help! I can't imagine the amount of pain you're going through. Hang in there & keep us informed on your progress.

  • I guess there's constant adjustments with or without PD. It's just that with PD they come faster.

    Are you getting good treatment?

    It made a huge difference for me.

  • Most people only know the movement symptoms of Parkinson's but more profound in many ways are the non motor symptoms. These can affect mood as well as many other invisible aspects of life.

    Your post sounds as though you are low in mood and this is very common in Parkinson's as the imbalance in the brain chemistry has a knock on effect through many other pathways, including those involved in mood.

    It might be helpful, because these symptoms are so invisible, to mention them to your Parkinson's medical team. Low mood is no more your fault than is the constipation or loss of sense of small that others feel as non Motor symptoms.

  • Hi again, Jwolfman, I think it's a natural process we go through with any major diagnosis. I had three different primary cancers at different times and every time wondered what I'd done to myself to cause them. I definitely felt a burden on my family and overcome with guilt for not being able to do what I felt I should. By the time I was diagnosed with Parkinson's I'd shifted the blame and just wondered 'why me?'. I've always eaten well, exercised, not smoked etc, but it does no good to dwell and can lead to depression (first hand experience of that too). Parkinson's is different to cancer because it's a chronic disease, so you have to learn to live with it. I was diagnosed 18 months ago and feel that I have only just come to terms with my situation. But I still feel selfish when my husband has to drive and useless when I can't cut up vegetables to prepare the evening meal. Frustration at not being able to do things or tasks taking so much longer still drives me nuts. I could go on, but in answer to your question, yes, mood changes and changes in self esteem are inevitable. And that's before considering the mental side effects of any medication and pain from your accident. Luckily you've found this site which is an excellent outlet for airing your thoughts with supportive like minded people and an invaluable source of advice. I have also found a great bunch of new friends in the local Parkinson's group. We seem to help ourselves with humour and I always come away from our gatherings feeling uplifted and positive. Keep smiling.

  • You are not alone. Any person with a chronic disease can identify with your feelings. But remember your mood influeces your body chemistry (including neurotransmitters) So find reasons to laugh and to feel greatful. Throw guilt to the garbage where it belongs. Oh, and don't just wait and see what happens. Help yourself: do daily exercise (dancing is great, or shadow boxing, or even a static bike); and also give your body total quietude (meditation helps). I've had PD for over 4 years now and I've found a lot of helpful information in this forum. I know you will, too. So, best of luck and enjoy life!

  • Hello Jwolfman614

    If i read right you are under 1 year with Parkinson's. Why have you given up driving anf playing music. I am 11 years with Parkinson's and still do most any thing i want. Have you started any meds or any thing to help you do better,

  • I still have my banjo and guitar that I used to love playing, but my PD tremors are so bad that I can't get my fingers to cooperate when trying to make chords or strum.

    I'm not able to drive because I make sudden jerking motions with my PD tremors and I fell and broke my neck about 5 months ago and cannot turn my head as I would need to. I no longer have to wear my neck brace and I'm doing PT therapy to strengthen my neck, but can't turn it sufficiently to drive - even with mirrors.

  • I'm glad you found this forum too. I read it every day and have learned a lot. It is much harder for you as a new Person With Parkinson's (PWP) because you've had a broken neck. I'm glad you're almost finished with PT for that. I have been diax for 2 years but still drive and am doing well. I think everyone who has PD should be very proactive. Learn as much as you can about it. Do as much as you can for yourself. Be in charge of your PD yourself. The most important thing is to exercise, exercise, exercise (once you are healed). There are other things you can do too.

  • hopedope,

    Firstly, I don't know where you get your user name, but "hope" is the only part of it that correctly fits. By no means are you a "dope!"

    Your comments are very welcome and helpful. I read this forum every day too and I do my PT four days a week now and do the exercises (homework) I'm given.

    Those have helped my balance and the strength in my body, but my neck is another story. I do the exercises for my neck each day. They give me a little more movement, but I'm still not at the point I need to be.

    BUT, I've not given my keys to my wife yet. I'm still hoping that that may eventually change.

    Perhaps the Delay the Disease program may help

    Thanks.

    John

  • Medications:

    I take Volproic acid for migraines

    But for PD I take Carbidopa/Levodopa 25-100 CR tabs (increased to 6 tabs daily) by my Neuro

    I still have my tremors and jerking tremors. We had hoped those would go away. Do they ever?

  • Hi. I got the dope part of my user name from the dopamine part of PD :-). I hope I don't lose it too fast. I think exercise helps PWPs keep it.

  • Ok. Thanks for the "really obvious" explanation, hopedope.

    That's what we all need more of, Dopamine

    I feel really dumb asking this, but here goes anyway: What do the initials PWP and PWPD mean?

    I'll never know if I don't ask.

    John

  • I just saw your reply when I sat down to email another PWP who I met at our Y's Pedal for Parkinsons cycling class. I seldom go to the class anymore because riding my bike at home has become much more convenient and I can easily do an hour while I watch TV news. To answer your question PWPs are People With Parkinsons or People with Parkinson Disease.

  • Nothing much to add to the previous excellent replies except ditto to the exercise advice. Exercise is your new job. Finding a support group for you and your care partner could help. Volunteer for research trials. You play the cards you are dealt and, with the help of your medical team, you be the best darn you that you can be!

  • Thank you for the supportive words, Barbhorn.

  • You deserve to be heard as does everyone. It's not whining it's sharing your thoughts and feelings. Being diagnosed with a long term condition is a shock to anyone but in a way Parkinson's is tough because it's complex and difficult to understand and every hour every day can be so different. You have friends on here who do understand.

  • I'm sure that I speak for everyone here in saying thank you to everyone here who has been so helpful and supportive.

    John

  • Being told that you have a Chronic decease is a bit like being told you have a life ending decease . I believe the person goes through the same, 5 stages of grief:

    Denial

    Anger

    Bargaining

    Depression

    Acceptance

    Until you finally reach acceptance ( and some never do ) you are wasting precious time that you could be using to make changes that will allow you to better enjoy your life.

    Retiring early

    Doing the things in your modified bucket list

    Living in a safe comfortable environment

    All the time spent in Denial (there are many forms of it) and the other first 4 stages accomplishes very little, a waste.

    Get up and start moving and plan and do and enjoy yourself, it is not too late but it is later than you think.

    Be Happy

    Here is a link to the explanation in detail of the 5 stages

    healthcare-information-guid...

  • GymBag

    I have gone in and out of denial and accepting so many times, it is not even funny.

    Even today, as exhausted as I was from having a lot of fun lately, as I got out of my comfy chair, and started walking like I was a 'normal' person. I momentarily forgot I have PD. It did not take my body long to let me know; fortunately before I fell.

    That is a great idea to watch the news while you ride your stationary bike. I love to watch movies, and I could watch part of them while I bike.

    Blessings of hope, Eva

    ps-tomorrow is the first day of spring :)

  • Welcome Wolfman. You are not alone. Many kind and helpful PWPD frequent this site. I look forward to reading your posts. Keep up a good spirit. Good humor is the best of healers.

  • Thank you gymbag. I'll take a look at those grief stages. I've not looked at them for a long time; thinking they only apply to people who have lost someone in death.

    I can see they are more than that. Thanks

    John

  • Thank you for all the help given to me.

    After showing all of the postings I've received, she suggested printing all of the comments and taping them to the doors throughout the house and I have cleaned up the link regarding the stages of grief and put that on my bathroom mirror so I can see the reminders each day.

    Thank you.

    John

  • Oops! The "she" of course refers to my wife who read the postings and suggested printing them out. (Exactly the reason I try to write my comments in my notes before posting.)

    That way I don't come across like the blooming idiot I am. LOL

  • I guess I will have to post this reply as the "forum" keeps saying "the body text cannont be blank. My comment was that I also cut and paste ideas from the forum.

  • Blooming Idiot, Oh dear, that is the 6th stage nobody talks about. There are several of us here in that stage, mostly old men. It can be fun but one must be careful because we are not completely politically correct and we can unintentionally (usually) upset some people with our strange ideas.

    For example I think happyness is a state of mind, and you can be happy if you have a mind to.

    ca.video.search.yahoo.com/s...

  • Yeah, I guess that's true. The important part of your comment is: "If you have a MIND to."

    However, the older I get, the more I try look behind me to see if I've dropped any more body parts.

    But, with my broken neck, it's even difficult to do that - turn to look behind me. But, my loving wife keeps an eye out for dropped body parts. He! He!

    But, I'm learning by being here that your mindset is very important. I can either move toward my getting stronger and better and developing a more positive attitude about my life. Or I can dwell on the bad things that have happened to me and continue to stagnate; never moving forward.

    I already go back and forth from that fourth stage as it is.

    --John

  • Gymbag,

    What a kick after following the link you provided to us.

    And, I'm old enough to remember the people like Roger Miller and Chuck Berry playing guitar and singing for us.

    It brought back wonderful memories of "King of the Road" and of Chuck's "Ding-a-ling." I was surprised however, that I could remember the lyrics and melodies of those songs.

    It showed me that I still do have sizeable chunks of my memory left thank you.

    Although Chuck Berry died last Friday, and Roger Miller died in "92", because of people like you, we are provided with some of the legacy they left to us.

    John

  • A couple of things that have been suggested to me by some of my therapists, have indeed helped give me a little more control over my tremors.

    Besides micrographia (small, cramped, nearly indiscernible handwriting) was part of my early diagnosis of PD. But, I have discovered that a weighted pencil helps to provide some control for that. (My wife still signs my name better than I do.) LOL Maybe that will help someone with this problem.

    For some time now, I had written restaurant and business reviews for online usage now I'm getting back into that again and love it

    I use weighted silverware to help control tremors when eating. My wife made a special bag for me to carry my silverware. If we go out to eat, I always ask if it would be okay to use these utensils instead of the ones provided by the restaurant. That way I don't have to chase peas all over the restaurant floor). LOL

    No one has ever said that I couldn't use my own silverware. A few restaurants have even washed my silverware without my saying a word.

    And, if I have soup I love hot and sour soup), I use a straw to drink the broth and a heavy spoon to pick up what's left. [see my profile picture].

    Although it may look strange, I also stir and drink my coffee through a straw. Nothing strange about that though! I'll bet you use a straw to drink your soda.

  • Jwolfman614

    What is a weighted pencil?

    Thank you!

    Peace, Eva G :)

  • Eva,

    A weighted pencil is as it implies, a weight slid on an ordinary, standard #2 pencil. The weight is held in place by small rubber rings at both ends of the weight.

    I found this on the Internet at a very popular online store we all know. They come three to a package.

    When attached around a pencil, they provide a little more control over my tremors when writing. They don't really do much for my micrographia, but they help to provide some control over my hand tremors and scraggly writing the same way my weighted silverware does when I am eating.

    They are inexpensive and helpful.

    Please let us know if you Have any more questions about the pencil weights or the weighted silverware.

    If you are using any of these tools, let us know if they have helped.

  • Jwolfman614 Thank you for your kind reply!

    Happy spring to you and your dear wife !

    Lovingly, Eva G 😊

  • Thanks Eva,

    Happy spring to everyone.

    Although we have not had very much snow at all this winter in Columbus. I'd like to have seen some. It has been very cold so that I nearly had to discard my shorts, that I wear all the time, for long pants. (True)

    I also wear a super hero tee shirt, a different one each day because when my wife's father was in hospice care four years ago and subsequently died, her brother, within four months of that, was transferred from hospital for his Leukemia to the same hospice facility and again you are there to support your loved one and each other.

    In the break room, I ran into a young boy (about 10 yrs. old) who was there because his grandfather was dying. He noticed that I was wearing a super hero tee and commented that he had a bunch of tee shirts like mine.

    I met with his parents and his family. His and our family really hit it off well. We all shared meals together and got to know each other more.

    The boy was commenting to his parents and to me about how many super hero shirts he had and I suggested to his parents and to him that perhaps we could both wear a different SH tee each day. We did and I think it helped him, his family and me and my family get through this time a little easier. After all, we were all there to support our loved one who was dying and now we could support others and encourage them too.

    My wife's brother died before his grandfather so we parted each other's company. But, before leaving, I told him and his family that I planned to continue wearing a different super hero shirt each day.

    I have continued to do that daily, so I now I have over forty different super hero shirts in my closet to wear and I'm 68 years old. But, age doesn't matter it helps me to stay young (in my heart and mind, now that I have PD.) And each day they help me to remember this 10 year old boy and his struggles. I tell this story to everyone who asks me why I'm wearing a super hero shirt, especially at my age I often get comments their son or someone much younger like super heroes too. But, this gives me a chance to tell them why I'm wearing one (Of course, that doesn't explain the shorts. Does it? LOL

    It's getting harder to find new and different tees, but whenever we travel, I'm always looking for new super hero tee shirts. My own family is gone now and sadly did not get to meet this brave young boy. But, I'm glad that I did.

    At Christmas time my wife and her family know that the only thing I really want is a new tee.

    I've even had people I didn't know, send SH tees to me after they'd heard this story from somewhere.

    But, my experience with that and now trying to come to grips with my newly diagnosed PD and recovering from my broken neck about five months ago, Halloween night, shows me a supportive, wonderful, encouraging community of people who I see here in this forum.

    Thanks again.

    (Sometimes, when I get to talking, I tend to natter on. So, feel free to tell me I need ((in the vernacular of my students) to just "chill" awhile.)) ; - )

    John

  • Jwolfman614

    Thank you for sharing that wonderful story. I feel inspired🦋🦋🦋

  • I think it is important to talk about pd. It does own us to an extent, but being proactive with some research and learning from others can be very powerful. My neuros said the number one med that is most effective is exercise..We do have more control over pd then we may think. I was diagnosed about 10 years ago with parkinsonism. I rarely tremor but have had problems standing, walking pain and fatigue. It is an annoying illness in so many ways and degrees, but there are new research and is important to try to stay positive. Michael Fox said: Don't play the result. When an actor does a movie even tho they know the result or end of story they strive to not play the result when they are not doing a scene at the beginning. Same way with pd. Enjoy the day you have not think about the result because we do not know what new meds or new understanding will be learned. Take care, another pd person who cares.

  • Opt8,

    That is great advice about not "playing the result."

    I've never heard things put like that but I can certainly see the application for my PD.

    Many thanks.

    John

  • Have you tried Mannitol?

  • Have you tried Mannitol? It appears to help me with my sleep and tremors (it also completely resolves constipation).

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