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Parkinon's Flare
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lovedogs1955 posted:
I haven't posted in a while but wanted to do it now. I am recovering from a hospital stay caused by viral meningitis and severe sepsis. I'll just say I felt SUPER awful and I hope that I never have such a horrible headache ever again. I am home now and was told by the MD that I have about a 2-3 week period that I will be having symptoms, including headaches, that will gradually diminish.

I am so tired and doing the least amount ot activity wears me out. I am noticing some increase in my Parkinson's complaints, mostly the chest pain and shortness of breath. I assume this can be called a "flare" or is there another name for it?

I also wanted to ask the other ladies on this site something that I have noticed the past few months and keep forgetting to ask. I rarely feel the "need" to urninate unless my bladder is really full. Even then, I am finding that I need to "push" to initiate the stream and keep it going. Anyone else experience this?
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worn1 responded:
lovedogs1955
I wondered why you had not posted.
I am so glad you are recovering. I know your recovery has been hell but hang in there.
As far as the problem with urinating I have not experienced that problem yet. Parkinson's attacks everything so I would not be surprised it is the culprit.
I think this is a Dr Stacy question.

w
There are none so blind as those that will not see
 
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worn1 responded:
bumping you to the top
There are none so blind as those that will not see
 
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lovedogs1955 replied to worn1's response:
Thanks, worn1. I wanted to add to my first posting in this discussion. I saw my Neuro last week to follow up with him regarding the meningitis. He noticed a definite decrease in strength and said that he believes my recuperation from the meningitis is going to be more like 6-8 weeks. My PD is really angry and often I feel like every cell in my body is jumping around. I am having sort of good days and some days that I just feel lousy.
 
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worn1 replied to lovedogs1955's response:
Dr Stacy please respond.
Wish I could help. Sounds like it is time for your 4 legged therapy crew. If your still in the hosp some will allow pets in.
w
There are none so blind as those that will not see
 
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lovedogs1955 replied to lovedogs1955's response:
It seems that the meningitis has decided to tell me who the boss is right now. Started with headache 2 days ago and low grade temp of 99. ( my normal is 97 or so) Spoke with my Primary Care doc yesterday afternoon, and she basically told me to cut back on my already limited activity and rest. Monitor the temp and headache.

So, it's day 3 of this setback. I slept in til almost 9 am. Felt "off kilter" when I first got up, but that has cleared some. I have been using my cane all of the time ever since I came home from hospital a few weeks ago because of the vertigo. This morning, there is a tightness in my head, and I feel like a truck ran over my upper back.

So, it looks like I have another day of rest ahead of me. I wonder how long this flare up of the meningitis will last. I swear there seems to be an internal battle between the PD and the meningitis.

thanks for letting me vent again. My dogs are being super nurses! My husband is great, but doesn't know quite how to help me.
 
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worn1 replied to lovedogs1955's response:
lovedogs1955 they are having a batte over who your brain belongs to. Unfortunately you are the battlle ground It would be nice if the meningitis kicked PD in the arse.

Wouldn't that be something if meningitis cured PD.
By the way vent all you want and if your husband wants to join that would be fine also. We all need some where to let it out and this is the ideal place to do it. Those who are new to PD have an idea of what is to come and sometimes you get advice that you did not ask for. Then there is Dr Stacy who is a big help.

lovedogs1955 I know you are feeling like someone has kicked you all over but there is a post on this page from a woman whose son I think is terminally ill but has not told heer everything. I am not the most tactful person and my response may have been a little on the cold side. Could you take a look and respond.
There are none so blind as those that will not see
 
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lovedogs1955 replied to worn1's response:
Hi worn1.....I love your analogy of my brain being fought over by the meningitis and Parkinson's. It's exactly how I feel. I am feeling better, but still not great. I get SO tired just by doing simple things....talking is still one of the main things that wears me out. (and oh, I love to talk and laugh!) I did ask my husband to get my wheelchair out of mothballs and put it in the car. I used it last weekend to attend an outdoor affair that required a fair amount of walking and at least by me getting pushed around it let me conserve enough energy to chat. Plus, it felt good to get out and see people I haven't seen in a while.

Okay, so back to your request. I am just wondering which posting you are asking my opinion on. I'll look around and see if i can find it.

Thanks so much for your ears, especially worn1! Sometimes I feel like what I am feeling is just a bad dream or being "made up" but I know it's not.
 
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worn1 replied to lovedogs1955's response:
lovedogs1955 you sound perky
They say laughter is the best medicine. I put it behind the 4 legged therapists. I always look for the positive and laugh as much as possible. I think it slows the enemy down. I have found anger brings out parkinsons. Let me give you a laugh. I ghave been trying to figure out how I can get back into running. The problem is I have no sense of balance. The other night I dreamed I was running in a marathon---I dream big---and when I looked down I was using a walker with wheels. Now wouldn't that be a sight to behold. I use to be a runner. When I was assigned to a post in Italy a group of us use to run with the locals. They would have 100 K runs periodically. I did try and the furthest I made it was 50K running from Fiencze to Firenze.
I also tried out for SETAF. Setaf held try outs and there were 2 of us who won and we were invited to Germany for the final tryouts. I had to decline do to lack of staff. If only..... Well back to reallity.
I wonder sometimes if i had contimued to run if I could have beaaten Parkinson. Exercise and diet seem to be the weapon to use.
I see a bright future for science. I had the pleasure of a Highschool student doing some computer work for me and she also did some work in Micorbiology. Plating cultures. She graduates this year and plans to become a biologist. She has it together and knows where she is going,brains and beauty. the total package.
Thanks lovedogs1955 for responding to the mother.
There are none so blind as those that will not see
 
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lovedogs1955 replied to worn1's response:
I have to share my vision that popped into my head when I read about your desire to run. I see a woman running with her walker, complete with tennis balls on the back legs of the walker and a bike horn attached!

I was never a runner---hated it as a matter of fact. But I danced as a young girl through high school and then changed it up to walking and going to the gym for weight training and cardio. Both of those necessary to keep working as a nurse! ha! My main source of exercise now is walking my dogs--I'm quite a sight with two dogs, my leg brace and my cane! But, because of the current health issues, I haven't been able to walk them (or me, for that matter) since before Easter. I'm gradually increasing my activity, which then means I have to give in afterwards and take a nap.

Anyone else had time to think about my bladder question yet?
 
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worn1 replied to lovedogs1955's response:
I like the idea of the horn on the walker
Have you thought about a tandem bike? Your husband could peddle the front while your feet are attatched to the back peddles and if your dogs do not try to pull they could run along side. We have people that ride bikes with there dogs running along side. Just think a family exercise
They do have dance class for parkinson's.
There are none so blind as those that will not see
 
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Anon_8349 replied to worn1's response:
I forgot to mention that I have horrible vertigo, that is even worse since this darn meningitis. So, even the thought of riding on the back of a tandem bike makes me dizzy!

My doctors and physical therapists have told me that I am still standing straight because I was so active prior to cancer. My muscles were strong and even though I have had extensive muscle wasting, I can still stand straight. I don't know how much longer that will be....I just take it one day at at time. I am anxious to being able to walk my dogs again!
 
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lovedogs1955 replied to Anon_8349's response:
that post above is from me, lovedogs....my fingers sort of hit both options for posting and I wound up showing up at anonymous! Oh well...
 
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worn1 replied to lovedogs1955's response:
My next suggestion for getting around was one of the battery operaterd chairs. I thinkit is called a round about. But with virtigo you would get pulled over byt the police for drunk driving I can just see it now police car with flashing lights pulling over a woman weaving down the side walk in her roundabout. All joking a side I hope you can start walking soon. Is there a medicaiton that you could take to help with the vertigo? How about any cures by old house wives tales.
still on the serious side. I have been doing a lot of thinking lately. I am still in my 50's. What would I have done differently if I knew I would have Parkinsons's. I never took the time to smell the flowers long the way of lifes path. I started working at the age of 12 and never took time to really enjoy life. I never went to the prom,attended graduation and i did not date until I was in my 20's. I always thought there would be plenty of time to enjoy life after I retired. I always wanted to study art. I use to be pretty good.
Looking back I can honestly say even though I did not smell the flowers or live a "normal" child hood I would not change a thing. It is not to late to smell the flowers and to study art.
Life is what you make it. I will retire in 3 years at that time we plan on moving to Arizona. until that happens I plan on taking up art and gardening also start looking at housing in AZ.
I wonder if this is what is called a mid life crisis.
Thanks for letting me bend your ear
w
There are none so blind as those that will not see
 
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lovedogs1955 replied to worn1's response:
I got a chuckle out of your description of the scooter getting pulled over for bad driving! As a matter of fact, there is a man that lives here in my community who received special allowances by the authorities to operate his scooter on the shoulder of the road! He has a bright flag thing flying off the back!

Unfortunately, I am not able to tolerate any of the PD medications, so we just treat the symptoms when they become too much for me to tolerate without meds. I did learn to stop and smell the roses in my mid-40's when I was diagnosed with cancer...and I believe that has helped me to cope with my current health situation. I am approaching 58 (next month) and am satisfied with the way my life has gone for the most part. I enjoyed life and tried to take advantage of everything offered to me.

worn1, I think your and I would definitely enjoy each other's company!


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