Before I was diagnosed, I was quite healthy. I worked out 5-6 days per week, didn't smoke, drink much, or eat meat ( I did eat seafood, so I wasn't a vegetarian). I did have a periodic , long-term struggle with depression, but I was kind of used to coping with it.
Since my diagnosis, about 4 years ago, my days are divided between "Mr. Hyde'" periods, mostly in the morning, in which I can only shuffle around like an unhealthy 90 year old man, until the wretched feelings begin to break, sometime between Noon and 4 pm, and I begin a "Dr. Jekyll" period during which I'm basically normal, and can work out as I used to do. Also, I have periods of heightened anxiety - possibly panic attacks - during which I feel out of breath, and they it kind of make me think that I'm dying, and that if I exert myself too much, I'll have a heart attack or stroke.
I take Gabapentin, which helps a little, and occasionally Valium, but I still feel like my health , self-confidence, and inner strength have been significantly degraded. It sometimes makes me feel a bit suicidal, because if I'm going to die soon, I'd rather it be well-planned and painless, rather than having a heart attack or stroke, which might kill me or leave me in a vegetative state. It's all kind of hellish, and what makes it even more so is the fact that I still have to work, run errands, etc. even if I'm feeling like any normally easy, simple effort is painful.
I'm betting that others in this group have had similar experiences. Any ideas on how to improve my situation?
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Alock2020
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Strange, you make no mention of any Parkinsons medication and yet you speak of wanting to end it painlessly and it sounds like you take the medications that you decide on and when you decide. It does not matter much what you did pre DX ,it matters what you do now and in the future. Have you been given a prescription of pD meds by your Neuroligist that you are not taking.
You wrote, " I worked out 5-6 days per week, didn't smoke, drink much, or eat meat ( I did eat seafood,..." So why would you die soon? It's been said you don't die OF PD, you die with it. I'm 66 and still deal with the idea of having PD. Plenty of days I wonder if it's worthwhile to continue existing. But there's gotta be a cure right ahead, just out of sight. I'm banking on Red Light and stem cells.
Hope you find a solution. Sounds like you are really struggling. I get really frustrated and depressed at times. I guess part of that could be Parkinson's. Hope they find a cure soon. I'll keep you in my prayers.
it is possible you might get some help from a functional neurologist - my husband has had some help from one and also I think the red light therapy is somewhat helpful along with exercise every day - my husband is a vegetarian and has been for over 50 years
I’ve stumbled through similar thoughts and feelings here. This is indeed a “hellish” situation many of us struggle with. You’re not alone. The folks in this forum have been a comfort for me; and above all else they understand. There are many other forums where PWP extend their support to others reaching out. One of the most helpful across multiple layers of my own Parkinson’s experience is: “Davis Phinney Foundation”
Davis Phinney Foundation for Parkinson's@davisphinneyfdn
Please explore Parkinson’s with other PWP; we help each other like nobody else can.
There are going to be times in the future when you feel good & happy. I have some degree of success in dismissing unwanted thoughts by asking myself “I wonder what my next thought will be”? This highlights the transitory nature of thoughts & enables me to some degree to dismiss them.
I believe you should contact a health care professional promptly to discuss this and your meds. I think it’s very likely that they’ll be able to get you to a better place if you engage positively with them & give them time.
I would recommend discussing anxiety with your medical care professional! Mine gave me a prescription, for anti-anxiety pills, that I only take, when absolutely needed. It helps!
the supplement called Lions mane,which is derived from a species of mushroom,has no side effects and has very positive results in helping with your list of symptoms.
Valium sounds a bit heavy I had the same problem with fading in between doses the neurons increased my sinemet which cured it but I started with dyskinesia better than losing a chunk of the day keep fighting don't let this shiity condition rule your lifeAll the best
I’m not any kind of medical professional but what has been helpful for me in my worst times in to focus on the present moment, remember all that I’m grateful for, remind myself that I won’t always feel this terrible, accomplish some small task, congratulate myself for doing it, get outside, and if nothing else works just sit quietly and witness myself as an observer of that pwp with compassion for her struggle. Could your current medication be causing more problems than solutions? Can you connect with a psychiatrist? All the best to you. PD sucks!
All of what you have written feels so familiar. I have found a balance with my new reality but even my balance goes off sometimes. I worked hard finding the best medications for me which took several years. I bought the exercise hype and I mostly take long walks. Golf has been immensely beneficial. I feel best when I golf. I never cart; I walk. The distraction of the game and the physicality are the key to the benefits. One thing that maybe very different from your circumstance is that I was able to retire. I put all my efforts in every day into feeling okay. Not normal but just okay. I hope you find a decent balance for you!
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