I hear you. I too am non-tremor dominant (another name I've heard is akinetic rigid.) One of my best friends was diagnosed with classsic PD nine years ago. I was diagnosed in 2008 but because I didn't exhibit a tremor, I had progressed to limping before it took 8 months for a diagnosis. I was 52. The neurologist that I'd had PD for four or five years, so she and I developed it simultaneously.
what are the odds! I've known her for over 25 years; she introduced me to my husband; our last jobs were in the same building on campus--I was the library director and she directed the learning center for the same mid-sized state university. We carpooled to work.
Now I told you about her because now I am worse than she is and need a caregiver when my husband goes to work. Last winter I was really down, I was having a behavior disorder from my meds and I was in the highest percentile for rate of decline. (hey I was always an overacheiver.<grin>) I thought I was dying.
What changed? / they changed my meds, no more agonists for me. they upped the antidepressant. and I am engaged in a book called "Just One Thing" by Rick Hanson. it's got 52 chapters that suggest a simple practice each week (52=a year) that give you something nice to focus on instead of our disease. Our minds will change anyway as we age and mature, I mean I'm not the person I was at 25 nor would I want to be. [I was stupid!]
"These practices are grounded in brain science, positive psychology, and contemplative training.They’re simple and easy to do – and they produce powerful results. For example, one practice asks you to take a few minutes each day to notice little things you appreciate or feel grateful for ... . This may not sound like much, but research has shown that this practice will lift your mood, protect you against stress, and even strengthen your immune system. ... Each bite-size chapter introduces a new practice, explains why it’s important, and shows you how to do it."
so sorry you are having a rough time. PD stinks. PD meds stink. But you didn't chose it. We may chose the path we take in life, but we don't always get to chose what we encounter along the way. Sometimes our only choice is how we handle ourselves.
Sending you Strength to fight on, Courage to face the unknown, and Grace to accept what comes your way without letting it change you.
Whenever I get a new symptom I go into a slump, too.
I couldn't go to lunch with my daughter and grandchildren because my balance was so terrible. I can't get up from the floor if I fall and don't want to put her in a predicament.
I am the same as you chris - i.e i have no tremor and have gone downhill very fast - dx in 2010- i am now unable to walk and need my husnand to help me constantly - with toilet ing and washing and dressing too - i am completly helpless in fact - i hate it so much and long for the times when i was a partner to my husband and could help hiim in the garden and could cook a meal for him - now i feel so useless and a huge burden too -
First of all watch the source when you search the internet. Stick with reliable sites like those from known hospitals and your government's Health Department. I've read some pretty fr fetched info from some sites and when I try to collaborate it elsewhere it is nonsense. We are all looking for the silver bullet and I pray that they find it soon enough to benefit us all.
I am constantly watching my husband and noting changes. Seems like my list gets longer every time we go to the MDS. We have a wonderful specialist. I had a question last week and he called back personally!
I too have no tremor and have been progressing slowly The one thing that bumps up the progression is an injury (2 torn meniscus, torn something in hip, hernia, ovarectomy, torn rotator cuff, hernia ) ESPECIALLY if had to take general anesthesia. The key seems to be exercise, exercise, exercise and having fun.
I have Parkinsons complete with a tremor. I know this is said to be the less invasive, but will have to wait and see. Try and step back from your symptoms, easy to say, I know. The more you worry, the worse you will feel. None of us know what the future will bring. But we all know we can't change things only make the best of a rotten deal. I am a great believer in exercise. Just doing what you feel comfortable with. I always accepted the diagnosis, when I finally got it, and try to look forward to at least one thing in each day, however small that may be. I think everyone has to come to terms with Parkinsons and cope in their own way. Good luck.
Thanks. I am excercising with my husband every other day. Have a Gazelle
machine that I am going to use the other days. I am still active. Cook, go to work
for about 4 or 5 hours daily. More if the work were there. Church on Sunday.
Work around the house. I guess I make myself sick worrying over my body
and the effect on breathing etc. I cannot believe that in just 5 weeks after my
diag. I am now exp. physical problems other than just difficuly walking, which
was my only symptom. I keep thinking it has to be Sinement CR minicing PD symptoms. I have asked my doctor in several emails, to no avail. No response.
other than one time we lowered meds to 2x daily. I finally accepted having PD.
Then, when researching my "hiatal Hernie" feeling this weekend I ran across the concept that my type is more agressive. Just when I thought I could stave it off
for 15-20 years with meds etc. Knocked me down again. Time heals all so I will
get over my impending doom feeling but for now I still can't help being scared.
You are right. I have a loving husband, 3 dogs and 6 cats.
Hi Chris, You sound like you are living life, able to do all those things. You haave a loving husband, and animals. Don't look for trouble it will show up
, I spent the last 3 days in my room, crying because I couldn't get the shaking and sweating to stop and I take my Sinement 4 times a day 1 and 1/2 pills each time. I have had a LOT of trauma in my life, but this one is really getting me down. I have been staying in my house, don't want to be seen shaking and sweating. The sweating is horrible, it runs, yes runs off my neck. My doctor said it's because my muscles are working so much harder to do just ordinary things, like walk. I don't know if there is any truth to one is more aggressive that aanother, there is so much they don't know, they don't know what causes it, every one is very different I have come to reaalize. I have had a melt down this week, and I believe that's okay, too.
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Yesterday's post by Jim C. reminds me my 6 mos report re FUS PTT from side 2 is due. (Not as exciting as yesterday's, tho.)
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