Barbara Ford
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The diagnosis was made in 2013, but Looking back, the noticeable symptoms began maybe as early as 2005.
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<p style=”text-align: left;”>To everyone on this thread: thank you for sharing the challenges you face. The first 7 years since being diagnosed, my symptoms were, for the most part, noticeable only to me. When the tremor in my right foot became a bit pronounced, Sinemet worked magic. For the past year, my symptoms have been gaining me and now I have, at most, a few hours of “normal “ activity before the extreme fatigue, pain and the slight tremor in my right foot is now a jackhammer involving my whole leg. Trying new medications (Nourianz & Rytary) have had no effect. I am fortunate to live in an area with outstanding medical services, but so far, I continue to deteriorate at a rapid pace. Perhaps the next step will be DBS. Any feedback, anyone?</p>
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Dreams have always been part of my REM sleep. PD diagnosis and treatment began in 2013 and in 2016, the nightmares began. Usually they occur 2 or 3 in a week’s time, then weeks of peaceful sleep. Recently, there have been fewer nightmares and more dreams that are busy and intense. These are often acted out, much talking out loud – mostly gibberish, but occasionally clear speech, and actual laughter. This is new.
Barbara -
For years before I was diagnosed with PD, I would have strong full body jerks when falling asleep. I thought it was just my body relaxing after a stressful day, and was “natural “. The jerks still occur, no more and no less than before my diagnosis.
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The dreams I have range from fussing at someone to being attacked by someone who comes out of nowhere. Sometimes I move around but I have never struck my husband or jumped or fell out of bed. I always shout or scream and my husband wakes me up and we go back to sleep.
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Beth, I can relate to your issue of not being able to eat like I should. My sense of taste and smell are working, and even if it is a food I like, a few bites and I just can’t eat any more. Unfortunately, this does not extend to sweets!
I do have digestive issues. Everything appears normal to the doctors, but my lower intestine hurts, I feel extremely sick and my body aches. Sudden and extreme diarrhea will hit, and even if I am at home, often I cannot make it to the toilet. If I am not at home, sometimes I can find, and/or get to a toilet in time, but not always. Once the attack has passed, I feel fine.
does anyone else have this symptom?
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In the 8 years of treatment for Parkinson’s, I have learned that the list of “typical “ symptoms, such as stiffness, tremor, tiny handwriting, etc. are far from being all the symptoms one might experience. The difficulty is trying to figure out what is and what is not related to Parkinson’s. Add aging (I am 74) to the mix, and the mystery expands. My doctors claim I am healthy, so do I blame unusual acute pain or digestive issues on Parkinson’s? Does this mean these issues can’t be fixed outside of possible treatment of the symptoms, which typically does not do much to help? If anyone has an answer to this quandary, please tell me!
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In past years, the garden club I belong to, filled my winter gardening void. We would meet monthly and it was an opportunity for socializing, learning and sharing. As Vice President, I had an opportunity to be imaginative and creative. This was fun and fulfilling for me.
Then the pandemic came. No more socializing. No more sharing. No more reason to be creative. The meetings continue via Zoom, but there is no way to present a speaker gift, have fun with door prizes or pass along plants.
It seems like this has left a void in my life that has filled with anxiety. -
My anxiety has definitely increased over the past Covid year. An exercise routine has never been part of my life, but that doesn’t mean I get no exercise. Gardening has been my activity. There is a lot of walking, lifting, digging and carrying. This past Covid summer allowed me to include plenty of social interaction. Offer free plants and people will come! With social distancing and the fresh air outside, my garden gave me the stimulus I need as well as activity.
I realized how much the garden activity plays a role in PD. The weather changed and I could no longer spend many hours working in my beds. There no longer were people stopping by to visit. This has been my worst year ever for anxiety. My symptoms are worse and I am taking more C/L . I feel ill and weak and am apathetic. Will I feel better in the spring when I can work in my garden? More importantly, will I be able to work in my garden?
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Ally,
To follow up on my post last month about feelings of depression and not having my garden work to distract me, I continue to slide down the slippery slope.
I am apathetic about doing much of anything positive. Fatigue and IBS are a crushing weight. Stress is a major factor in the out of control IBS, yet most days, I cannot identify any specific stress factors in my life.
Around the first of March, I may be able to spend time in my garden again. Maybe that will re-energize me. Maybe the pink spray paint for the old, faded metal flamingos I bought for $1 at a garage sale will perk me up. Perhaps I will find a bargain plant that is just what I need for that certain pot. It sounds good, but right now, I can’t imagine where the energy will come from to do it and I feel overwhelmed just thinking about it.
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Throughout most of the year, I find peace and calm while working in my Texas Native front garden, and my shaded pocket gardens in the back yard. Even with Covid spreading fear through the summer of 2020, there was no lack of visitors to my gardens. Being out of doors and observing social distancing, did not pose a risk, according to my physician.
Then the cold days and nights of fall and winter arrived and it was no longer possible to enjoy my time outside. Depression and loneliness has set it. Physically, I have become weaker, constantly tired, and withdrawn from close friends. Will I perk back up in the warm days of spring? I hope so, but I know that I have lost a year of holding my own against the deteriorating effects of PD, and of age, and I cannot get that back.
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The longer I have Parkinson’s, the more pain I have. My neurologist sent me to a pain doctor and she has done some nerve blocking injections in my leg when the pain gets to a level that the opiates don’t help.
As bad as the leg pain is, (it is a sharp pain down the side if my left calf), the cramping, feels like flesh is twisting, unbearably intense pain in my feet is the worst pain I experience. The flesh is not actually moving, and these episodes are only at night.
The cramping pain comes in short bursts and the episodes are not more than maybe 10 minutes. Then the neuropathy sets in and the burning from that is quite intense. I take a light dose of Gabapentin, but most nights the pain in my feet keeps me from sleeping.
Recently, I was given some lidocaine patches to try and these have been helpful. The patch dulls the pain enough that I can fall asleep, or until the opiate goes into affect.