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Did your tremor come on slowly or did it manifest itself fairly quickly?
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Tina,
I second what Paul said. Thank you so much for sharing your experience. I recognize that it can be very difficult to describe PD to anyone who hasn’t experienced it. But I’m grateful when people try, because it helps me understand what my Dad is going through. Your wordsmith skills show! Maybe one day you should write an audio book.
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Mary Beth thank you. It’s funny to think about accomplishing something like that when I’m in the middle of moving. Maybe one day I won’t feel consumed like I do now, and I’ll take a shot at it. Never hurts to try to expand one’s life experiences and revisit that bucket list from time to time.
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My tremor was my first indications of Parkinson’s. It was 10 years ago that my pinkie started shaking. I was leading a trip for students to Ireland. Of course constipation preceded it for about 10 years earlier.Now 10 years later it is distinctive in my right leg and my right arm. At this moment I am dictating this message because my finger will not do the work! I find stress, stress, stress is the biggest factor as well as the medication of course. I take one and a half tabs over three hours of carbidopa levodopa
Somebody says that 50% of Parkinson’s is psychological and 50% medication related. I find that to be true. I’m trying to continue to be a college teacher 10 years later. in the middle of most classes I start shaking and I have to plow my way through the rest of the class. I’ll take a class break often and lay down in my office.
Now I am lying in bedAnd my leg is jumping like crazy. when I stop trying to dictate this it will be better if I lie down and rest.
I find mindfulness meditation to probably my best bet as well as of course medication. Social events make my stress higher and my symptoms worse! How to live stress-free? not possible.
But I want to emphasize here is that along with my Tremors there is a buzz of tension or anxiety that comes with being off. Does anyone does experience that physiological buzz or anxiety with the off period?Again I better stop or I’ll be exacerbating my tremors! -
Hi Tina,
If you have the urge to write but typing is problematic, perhaps you could use one of the dictation aids – Dragon for instance. Then you could get your thoughts down quickly. This might be very helpful.
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My husband first noticed a left-handed tremor about two years ago. He was not formally diagnosed until close to a year ago. His tremor has increased slightly but still very sporadic. He joined Rock Steady Boxing which has been a great help physically and emotionally. Still not on any medication but follows/up with the Neurologist every six months. She will have just returned from a major Parkinson’s Conference when he sees her in June and she is hopeful she will have some new, updated information. We hope that it is just a matter of time before a new treatment proves to either reverse or stop the progression of the disease. To live without hope is to give up and this is something we can’t do.
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Thanks Mary. I do use my ipad and phone to record thoughts as I have a hard time remembering ideas. It’s frustrating always having to correct the app’s typing but it’s still rewarding to feel I’m accomplishing something.
I think after I get settled in after my move I’ll get serious about it. I figure if I can just work on the table of contents first to outline the work, then I can focus on a chapter at a time and maybe I’ll actually get it done. We’ll see if I’m really going to be able to do this before more of me is “done” from PD. Chin up!
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Garrett-
I’m particular interested in what you said about 50% of Parkinsons being psychological. Do you mean that dealing with the symptoms and changes affects the mind? In what ways has it affected your mental health?
It sounds, to me, like you’re doing a great job of plowing through the changes.
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Mary,
It’s great that he doesn’t have to be on medication. I know that the timing of it can be very tricky. My Dad loves Rock Steady Boxing too. I think any organization that shares a common goal like RSB is pretty cool. Does he have favorite fitness regimens or exercises?
There always seems to be new information coming out! You’re exactly right about keeping hopes high.
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Tina-
Where are you moving? And were you able to find a living space that will help manage PD?
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Diagnosed at 33, now 39. Tremor in right leg and foot Dystonia toe curling were some of my first symptoms. Dystonia is totally annoying and gone to inversion walking on outside of my foot and totally unpredictable. Tried Botox several times without success.
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Mary Beth I moved in with my daughter who bought a house with a downstairs “apartment” for me. It’s beautiful and about the same space as my former apartment. There’s a large yard with lots of flowering trees and birds and it’s very peaceful
The only problem so far is that it’s on a little “hill” that I can’t descend or ascend so I really can’t go check the mail. The post office won’t bring packages up so I haven’t been able to get my belongings I had shipped. I’ll have to change my habit of ordering everything too. UPS and Fedex will deliver to my door so I’ll just have to make sure everything goes through them.
I have long list of things to do which is daunting and I have to “ask permission” first with anything regarding the house. So like any change in life there’s adjustments, positive and negative. I have to revisit my priorities constantly, and there’s both physical and mental activities so it’s a good balance each day.
So far it’s been costly which is causing anxiety, and I’ve had to buy and prepare food again this first week. I know I have to quickly get assistance in this area, along with change of insurance and medical care, address changes, furniture etc etc.
My daughter is so swamped at work and doesn’t own a vehicle by choice so it’s going to continue to be a challenge to adjust to a new environment apart from former friends and assistance. But I know it’ll all work out, I just have to do what I can, be patient and supportive of her situation too, and laugh often. Another adventure!
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Dear Tina,
Sounds like you raised a daughter with love, encouragement and support. And, now when you need help at an age, much younger than you ever imagined, she is there for you. You will get through these new problems and now you have to let her do for you, those things that you did for her, not so long ago… I had a wonderful Grandmother who used to say that “Kindness begets Kindness and Decency begets Decency”…. Now thank your lucky stars, that in having giving so much, you are about to receive so much….. A lot of us here, have been, or are going to be, in your shoes…
And I for one, have been amazed at what has happened since I gathered my children to explain why their Dad, at 74, who only last year could ski and mtn. bike with them anywhere, now suddenly can not…
And, how quickly they have stepped forward to try to help me adapt to this damned disease!….
Mike
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Tina and Michael, your posts brought tears to my eyes. You are so fortunate to have supportive family around you and reaching out to help you. I have a spectacular husband, but we have no children to help. I have a sister and two sweet nieces, but they live quite a distance away, and my mother is deep in dementia right now, which is heartbreaking. We really don’t have family or friends who understand or can assist. You both have much to be grateful for (and I’m a little bit green with envy).
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Jo S. I feel for you. When I started this “journey” I felt very much alone. I had to adjust and try to open up to others to get some emotional and practical help, despite my hesitation to do so.
I’ve always been perceived as extremely independent, one who helped others and refused help from others. But I quickly discovered this is a condition that makes the sufferer and caregivers dependent on others for support.
I started sharing my status with others, making my needs known and accepting whatever helped was offered. I found people are incredibly understanding and supportive of this condition.
I’m confident you will find this support as well. It just takes reflection and acceptance, and the rest will follow. It’s important to let others “spread the love” as it can quickly become overwhelming for them when they realize the needs are ongoing and progressive. The same goes with caregivers in the family and friends.
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Thank you, Tina. I appreciate your thoughtful words of encouragement.
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Tina, my heart cracked a little upon reading your post. It’s really scary to be vulnerable and tell your loved ones that you have needs too. What if I cause problems by speaking up? But it’s also so vital to quality of life. I’m really glad that you’ve been able to open up to others about your journey. Did it take a long time to feel supported?
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My grandma have the same problems.
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I was diagnosed in 2014 but had symptoms for at least 15 years prior. I was told for a long time I had Sjogrens, an autoimmune disease, which included pain and extremely dry eyes/mouth. It wasn’t until a started a tremor in my left hand that Parkinson’s was thought of. It seems that all the symptoms I had been having also fall under the PD list.
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Karla,
Has your diagnosis since changed? And do they think all of the original symptoms are related to PD?
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