Due to my off times I was taking Carbidopa levodopa and stelevo 150 every 2 hours. For some reason I get squinting in my face when the medication wears off which is kind of painful can I don't know if that happens 2 anyone else. Well I've been taking the medication for to every 2 hours 4 months now and had a lot of swelling in my left leg. I weaned off of the Carbidopa levodopa and just take this to the150 stelevo now swelling is completely gone away but now I have such low blood pressure i… read more
I have a new fantastic neurologist, up to the latest treatments, started with Ropinirole, made me terrible sick, I'm on a strict schedule of Carbidopa/Levadopa 2-pills every 4-hrs around the clock if needed, and a higher dose times release C/L at bedtime to help with sleep. It appears to help a lot on the off time, I have to watch the meals not to intervene with my doses, and a low protein diet. I still don't get much sleep sometimes, but the off period is better, you can't have everything perfect, we just have to do our part in activities, and positive outlook, I know it's tough to get up and do something, but once your doing something it gets better everytime. I just started going to the local gym here, doing circuit training, that focuses on all the major muscle groups, and get on the bicycle, and just move the best you can, my trainers mother had Parkinson's, so she knows how to work with us. I have always been active until this turn around in my life about 5-yrs ago. It started a knee replacement that I almost died from with Pulmonary Embolism, then the diagnose of PD. Before all this took place I was master bricklayer/stonemason, state C-29 licensed. And I was a project manager/construction estimator at the last few years of my career, and I was a Home Inspector for Real Estate sales transactions. I was very busy in the building/Real Estate industry. Then a 180 degree turn just like that, it was tough to go through all the recovery from the surgery, and PD diagnose. But with a lot of help with my loving family, and close friends made the transition easier, I was depressed just briefly, I never have been depressed before, I am a very positive person, and always go buy a common saying, " When your delt lemons, make lemonade" and you have to do it no matter what, I used to say I can't do this no more, or this no more, and one day I made a list of things I can't do, and things I can do, and you wouldn't believe how big the can do list was, that was it I can do a lot of things, so I told myself stop dwelling on the can't do, and focus on the can do. I thank my wonderful wife and daughter, and I am blessed with two wonderful grandsons, 11-yrs, and 7-yrs old, they hangout with me a couple of days a week, while everyone else works, it's great to teach them some craftsmanship. Its therapy for me, we ride bikes, and build them also, they like my garage with all my tools, and stuff, they are very inquisitive, and not afraid of challenges, we live out in the country, the best place to raise kids, they have a lot of fun, and plenty of room to run. Well I have a follow up in a week at my Neurologist, last time.e she brought up DBS, but I think I'm getting along ok, with the CL, even though I have some Dyskinesia. Well keep up the fight everyone, just pace yourself, there is a lot we can do to make coping with this easier, I know for some it is hard, and I do keep praying for strength for all.
"DOING NOTHING IS NOT AN OPTION"
Very good, serious point SarahM. Appreciate that important detail, this type of Disease progresses differently in all of us, so what meds work for one, doesn't mean it will work for all. But what we can do is any positive physical motivation, it is in my power to regulate progression as best as I can, we all have likes, hobbies, try to use it as treatment. This type of advice is a win-win. It dosen't matter how slow we can do these likes, or the progress we achieve, we are ahead just for trying, and committing....so there is a lot we can do without a prescription. My first time at the "TOUR DE FOX" PARKINSON'S BENIFIT RIDE In Santa Rosa California, it was AMAZING to see, and meet people from around the nation, and many in a more difficult condition as myself, and out ther doing it at their level, I was so inspired, and impressed. Everyone have a good positive day.
"DOING NOTHING IS NOT AN OPTION"
I enjoyed reading your post. I also have to remind myself often to what I can do. And that helps me get through my off days. If I didn’t do that it would be easy to feel depressed. Reading a post like yours, also helps me realize that I am not the only person that has to struggle to be positive, and not to give up.
Reading these comments gives me hope that there IS a light at the end of the tunnel and if we share what "works" and "doesn't work" with each other we can help one another make the best of our journeys forward. All we can ask for is the energy and positive attitude to carry this cross and know that we're not alone even though there are some days I wonder!?!?!
DBS surgery check it out