I think that it's possible that the anxiety disorder that was generated or increased by PD has degraded my relationship with my sister and brother-in-law, as well as making other relationships problematic.
I've had problems with depression since my teens, and have also tended to be more anxious about solving problems than most, but I don't think that I really had an anxiety disorder until after I was diagnosed. My parents are both deceased, so my main source of support has been my sister and brother-in-law. I think I've put a lot of stress on both of them.
For instance, I don't know what the proper etiquette is when considering suicide: is it more polite to let people know and repeatedly whine about it, or is it better to just make preparations and carry it out on a whim, and not "cry wolf" a lot?
Something else that I've learned about is what Parkinsonians refer to as "foggy-headedness" or "downtime", euphemisms for experiencing hours of feeling 30 years older, weak, in a kind of pain that's indescribable (so others who haven't experienced dismiss it), and unable to do much beyond shuffle around my apartment. I no longer phone my sister when I feel this way, because it happens pretty much every day.
Then there is the social anxiety, which has cost me at least one friendship. It also makes me feel that I shouldn't pursue any new ones. I wouldn't find myself attractive if I were someone else, so what's the point?
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Alock2020
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We need to know a little more about you to give you any advice or suggestions.
How long have you had PD?
Are you on meds?. If yes, what ones and what are your dosages?
Are you taking anything for anxiety?
Sounds like to me you haven’t totally accepted your diagnosis. You should go out and find some things to do, you’ll feel much better. I put together a binder full of information for reference and use it for myself and family and friends. Your sister and brother-in-law more than likely don’t know much about PD. It would be helpful to get some information from your neurologist and have them read it. I went to mine last week and they had 1 or 2 pages on all kinds of PD issues. Many people don’t know how many symptoms there are. A lot think it’s just tremors and slow movements.
Life is not over after a diagnosis of Parkinson’s. Before you do anything you need to do what I call the Triple A’s. Acceptance, Attitude and Action. You need to accept the diagnosis, change your attitude to more of a positive nature and take action-get yourself in a Parkinson’s exercise class. I go to Rock steady boxing. You will meet the nicest people,make friends and get a great workout with stretch’s, weights, aerobics, etc. I’ve been a member for 17 years, diagnosed 20 & I am 66 yrs old. One other thing…all those friends you’ll make, they have PD also so they will know how you feel.
1) I was diagnosed f/pd in 2018, but probably had it since 5-10 years before the diagnosis.
2) Carb./Lev. 25-100 5x/day, 50/200 once/day, Amantidine, Nuriance, a bunch of supplements too long to list incl. B1 Protocol/ Coronet Infra-red Helmet
3) For anxiety: Gabapentin 900mg-1,200 mg/day; Valium 1.25 - 2 mg/day, Chamomile Tea- very strong concentration
Sounds like you have everything in order, except for the positive attitude and the exercising. Attitude is the tough one, but you can do it. Especially if you get out and socialize. If you try Rock Steady, I’m sure you’ll find quite a few friends. I sometimes want to be alone but if I get myself up and go, l end up having a great time. Everyone ends up laughing and smiling. It makes you feel better in more ways than one. 🥊
You should join the Zoom calls MBAnderson is so nice to host. That will give you two hours a week of conversation with people that understand what you are going through. You will be welcomed.
Stick with friends and family if possible, and take the time to educate them about your experience. While many might struggle to understand, most will make an effort to adapt. If they can’t, perhaps it’s time to let them go. Social anxiety is indeed a part of the personal development experience, not necessarily a disorder. Be patient with yourself, a sentiment echoed by many. Embracing acceptance is pivotal; every day is a step towards not just survival but thriving. When anxiety strikes, I remind myself, ‘Give me a break, will ya,’ acknowledging my ongoing journey and efforts.
Hi! I'm sorry to hear you are rather negative about PD. Life is what YOU MAKE IT! If you give in to its health probelms then you are losing an opportunity to turn your life araound and go in a different direction.
I was diagnosed in 1992 and now, 31 years later, at the age of 89, nobody would ever knoiw that I still have PD. Why?
It is because I have been doing FAST WALKING, ever since diagnosos. I do it every second day, for a maximmum of one hour. What do I mean by FAST WALKING? I mean walking as FAST AS YOU POSSIBLY CAN! If you can only do that for a few seconds or a few minutes then keep doing that, every second day and slowly build it up to one hour.
I am still enjoying my life to the full, here in my Retirement Village, with lots of other OLD CROCKS!
We are having a BALL. We have lots of entertainment and things to do. I am never still.
I am writing my life story, not that anybody is going to raead it but, I am getting a lot of pleasure writing it. What are you doing?
Good luck!
John & Jeannette, (Whose late husband also had PD for over 20 years, but died of old age!).
Thanks for this news. Tell Daphne that Jeannette and I are doing very well and enjoying life together. I hope she is aso doing well, which I feel sure she is.
I know nothing about you, what medications you are on , when were you diagnosed , what are your symptoms . But, I will comment based only on what you said in your post.
Depression is probably the worst symptom of PD, but unlike clinical depression generally caused by chemical imbalance PD treatment can reduce it , and you can get it under control.
Yes you are correct, PD has a big negative effect on your social life and caregivers can burn out and we tend to believe that we are unfairly given this disease . Why Me ? Plus you probably do not think that anyone including your doctors believe you. You are correct on all counts.
What do you contribute to any relationship ? Do you make their lives any easier and happier or take any work load from them or are you getting a free ride.
Suicide, well if you cant think of a better way, but please stop whining.
You will find on this forum, people who will understand exactly what you are experiencing but do not expect much sympathy because they may be suffering more than you. Instead of creating Pity Parties read what has been written in the past here many times repeating.
It is time for you to take control of your own life, and make it better, exercise is key, medications and vitamins and then attitude . There are methods to help handle pain.
Many on this forum are happy yet they have terrible disease , HOW
Happyness is a frame of mind , and you can be happy if you have a mind to.
Its all up to you , and I challenge you , to get your act together, no one else can do it for you
Your post struck a chord with me. Are you able to access some counselling? This would give you an outlet for some of these thoughts without feeling like you are putting pressure on family.
My experience with trick cyclists and talk therapists has been that most of them are crazy. My latest one was the least insane, but unfortunately she went out of network, so now I have to figure out whether to give her $200 /month out-of-pocket of try to find another relatively sane therapist. And I can't help feeling that none of the specialists, including her, have helped me enough. I sent them all letters permitting them to cross-communicate, and theoretically, they're supposed to collaborate on my treatment via my PCP. In practice, I wonder whether they have time to do so, as each of them probably has hundreds of patients, and probably don't give a rat's ass if any of them suffer horribly or drop dead.
I'm frustrated by the fact that I do exercise more than most, have been on the B-1 Protocol for 3 years but still haven't found the optimal dosage, and have been using some of the many supplements recommended, but nothing seems to significantly slow or stop the degeneration. Yesterday I had my first gym panic attack, and had to leave a bit early. I've just started using the Coronet Helmet, so will have to wait and see whether that's a scam.
Fair enough. I'm sorry that hasn't worked out for you.
For me, one of the worst symptoms of PD was the devastating mood. While waiting to see a neuro, I found the HDT (vitamin B1) therapy and in a short time that darkness was gone, thank God! I still feel people don't want to be around me sometimes ,( they may think it's contagious or that I would expect help from them, which I would not) but with that symptom gone I can fight this battle.
I understand what you are saying. I have had similar issues with anxiety, off time grogginess and “pain”, etc. Don’t give up. Do you have a church that you attend? Perhaps if you could find a bible study or a community group there you can widen your social circle to better meet your needs. I think you are smart not to seek out people when you are in the middle of off time. I like to take my meds and just lay down while I wait for them to kick in. God bless you. I pray you will find peace.
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