I have PD (Parkinson Disease)

Posted by Chris J @chrisj2491, Feb 13, 2015

I would like to introduce myself. My name is Chris and I just joined the group.
I have PD (Parkinson Disease) which of course is a neurological disorder.
If there’s one thing I’ve learned. ….it’s that everyone is “different.” It’s always good to listen and learn about others’ experiences.

@aperob

Does anyone have Parkinson’s? Was just diagnosed 🙁

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@aperob Yes, I have a DX of PD as well. I started off with gait and balance problems. As I never had tremors I found it hard to believe that my problem was PD, but the meds for PD really worked to allow me to feel more stable, so I’m grateful for the help. If you feel comfortable sharing your story, please let us know something about your symptoms and the treatment that your doctor is suggesting. I highly suggest physical therapy and exercise for strengthening, this will help you in so many ways. We look forward to getting to know you! Keep your questions and comments coming and best wishes.

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The rabbit hole gets us all at times. I was 69 when diagnosed so it wasn’t quite the shock it must have been for you. I already had been through other Agent Orange problems so I had dealt with morality issues. The difference was I clearly beat the first one. And I still feel too young. But in my local support group there are more folks diagnosed at your age than mine. My guess is that more symptoms are now being associated with it so the age average is creeping down. In my case, I lost my sense of smell 15 years ago which was apparently an early sign but PD wasn’t even considered then.
The good news is that meds started early deal with the symptoms (I’ve started driving again) and you may see a stem cell or other cure in your lifetime. If you prefer sports, the first strike isn’t the end of the inning, much less the game.

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I have balance issues is how this all started, no tremors. I had my diagnosis and PT all in the same day July 26 this year. I am doing exercises and stretching per PT. I go back August 18 to see how I’m doing. Dr. does not want to put me on meds as yet, still beginning stages I guess. I’m scared I won’t deny it. So much to do yet in life, but am feeling will not be able to do.

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@aperob

I have balance issues is how this all started, no tremors. I had my diagnosis and PT all in the same day July 26 this year. I am doing exercises and stretching per PT. I go back August 18 to see how I’m doing. Dr. does not want to put me on meds as yet, still beginning stages I guess. I’m scared I won’t deny it. So much to do yet in life, but am feeling will not be able to do.

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If that is it so far, you’ll be able to do most everything for some time. You might have to give up juggling and hang-gliding. Scared is normal early-on. The more you learn the better.

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@aperob

I have balance issues is how this all started, no tremors. I had my diagnosis and PT all in the same day July 26 this year. I am doing exercises and stretching per PT. I go back August 18 to see how I’m doing. Dr. does not want to put me on meds as yet, still beginning stages I guess. I’m scared I won’t deny it. So much to do yet in life, but am feeling will not be able to do.

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@aperob Yes, scared is the initial reaction to a PD diagnosis, but once you begin to feel more stable you will become more comfortable and know that life does go on, just a little slower than what you anticipated. I’m glad that you have had PT and are practicing the exercises, once you begin meds you will begin to notice a big difference. Keep us posted on how you are doing. Is there a PD support group in your vicinity? Support groups are a great source of inspiration and education. The more educated you become the less fearful you will be. Best wishes

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@ggopher

The rabbit hole gets us all at times. I was 69 when diagnosed so it wasn’t quite the shock it must have been for you. I already had been through other Agent Orange problems so I had dealt with morality issues. The difference was I clearly beat the first one. And I still feel too young. But in my local support group there are more folks diagnosed at your age than mine. My guess is that more symptoms are now being associated with it so the age average is creeping down. In my case, I lost my sense of smell 15 years ago which was apparently an early sign but PD wasn’t even considered then.
The good news is that meds started early deal with the symptoms (I’ve started driving again) and you may see a stem cell or other cure in your lifetime. If you prefer sports, the first strike isn’t the end of the inning, much less the game.

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I’m not sure when I was diagnosed – once in 1956 – right after I retired – and then again a couple of years ago (2015). It’s for sure this time! I’m 73, so I quit hang-gliding a couple of years ago! (:>) My biggest problem is tremors – essential tremors – for which PD meds do nothing, And neither do the last 4 other meds I’ve tried. My Doc isn’t ready to try timolol yet. I agree about support groups – they are important – we have one going where I live (a nursing home (:

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@ggopher

The rabbit hole gets us all at times. I was 69 when diagnosed so it wasn’t quite the shock it must have been for you. I already had been through other Agent Orange problems so I had dealt with morality issues. The difference was I clearly beat the first one. And I still feel too young. But in my local support group there are more folks diagnosed at your age than mine. My guess is that more symptoms are now being associated with it so the age average is creeping down. In my case, I lost my sense of smell 15 years ago which was apparently an early sign but PD wasn’t even considered then.
The good news is that meds started early deal with the symptoms (I’ve started driving again) and you may see a stem cell or other cure in your lifetime. If you prefer sports, the first strike isn’t the end of the inning, much less the game.

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Thanks, will try to find a local support group.

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@aperob

I have balance issues is how this all started, no tremors. I had my diagnosis and PT all in the same day July 26 this year. I am doing exercises and stretching per PT. I go back August 18 to see how I’m doing. Dr. does not want to put me on meds as yet, still beginning stages I guess. I’m scared I won’t deny it. So much to do yet in life, but am feeling will not be able to do.

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Thanks, looking for a support group. So far it is this group.

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@aperob

I have balance issues is how this all started, no tremors. I had my diagnosis and PT all in the same day July 26 this year. I am doing exercises and stretching per PT. I go back August 18 to see how I’m doing. Dr. does not want to put me on meds as yet, still beginning stages I guess. I’m scared I won’t deny it. So much to do yet in life, but am feeling will not be able to do.

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@aperob This is a good group! I wish you well.

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I am very sorry to hear this but you are absolutely correct. We all are very different and we all have different stories as well as diseases. My aunt suffered from Parkinsonism which was related to Lewybody Dementia but she also had Psoriasis, MS and Scleroderma. I just dont understand where all these diseases come from? Please know that my prayers are with you and that you are not alone.

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@sebley12 Kimberly: That was a great comment. Even though our diagnoses can be the same the presentations can be different. Your aunt certainly had a difficult medical history from a neurological stand point. Do you mind sharing how the diagnoses of PD and MS were found? I’d also be interested to know which diagnosis came first. Thanks in advance for sharing what you can.

Liked by Kimberly, denie57

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Hi everyone! Well wishes and hoping everyone is fighting the good fight. I haven’t been on the site in awhile. Managing work, family, home and the disease is a lot for me. I am having a lot of pain right now and feeling a bit unsteady. Kind of funny….just last week I was on vacation for a week and felt really good. I’m trying to hang in there and work as long as I can. Does anyone know anything about the drug Selegiline (ELDEPRYL)? It was prescribed for me about 3 months ago. I complained about the stiffness and pain I was experiencing. I wasn’t all in so I am not taking it. Side effects concerned me. I’m afraid of too much medication too soon. I am taking the standard medication Carb/Levo 25-100 and have been on for 6-7 months.

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@hopeful33250

@sebley12 Kimberly: That was a great comment. Even though our diagnoses can be the same the presentations can be different. Your aunt certainly had a difficult medical history from a neurological stand point. Do you mind sharing how the diagnoses of PD and MS were found? I’d also be interested to know which diagnosis came first. Thanks in advance for sharing what you can.

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My aunt suffered from Psoriasis first, then at an early age in her 30’s came the MS. As she got older she experience a limp which they thought was due to her MS but after having an MRI they found that she had what are called Tangles in the brain, and she also experienced Left sided tremors only which is called Parkinsonisim, another classic sign of Lewybody Dementia. You can also visit Lewybody.org I hope this helps. xoxo

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@denie57

Hi everyone! Well wishes and hoping everyone is fighting the good fight. I haven’t been on the site in awhile. Managing work, family, home and the disease is a lot for me. I am having a lot of pain right now and feeling a bit unsteady. Kind of funny….just last week I was on vacation for a week and felt really good. I’m trying to hang in there and work as long as I can. Does anyone know anything about the drug Selegiline (ELDEPRYL)? It was prescribed for me about 3 months ago. I complained about the stiffness and pain I was experiencing. I wasn’t all in so I am not taking it. Side effects concerned me. I’m afraid of too much medication too soon. I am taking the standard medication Carb/Levo 25-100 and have been on for 6-7 months.

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Good to hear from you Denie. I certainly understand how busy life can be managing work, family and home. Sorry to hear about the increase in pain after feeling good on vacation. I found this very short article that about stress and its impact on Parkinson’s symptoms http://www.apdaparkinson.org/living-with-yopd-managing-stress/ At the bottom, there is a link to a webinar called “Spotlight on Well Being – It’s a Family Affair”. I didn’t watch it, but it might be interesting for you.

@aperob @hopeful33250 @ggopher @trouble43443 do you have any thoughts for Denie about selegiline?

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@denie57

Hi everyone! Well wishes and hoping everyone is fighting the good fight. I haven’t been on the site in awhile. Managing work, family, home and the disease is a lot for me. I am having a lot of pain right now and feeling a bit unsteady. Kind of funny….just last week I was on vacation for a week and felt really good. I’m trying to hang in there and work as long as I can. Does anyone know anything about the drug Selegiline (ELDEPRYL)? It was prescribed for me about 3 months ago. I complained about the stiffness and pain I was experiencing. I wasn’t all in so I am not taking it. Side effects concerned me. I’m afraid of too much medication too soon. I am taking the standard medication Carb/Levo 25-100 and have been on for 6-7 months.

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@denie57 Hi Denie, your comment about having reduced symptoms while on vacation reminded me of a Parkinson’s video that I watched some time ago. In the video, Michael J. Fox was being interviewed. As you may know, he grew up playing ice hockey and they showed him out on the ice now that he has PD. Before getting on his skates and getting out on the ice he was showing all of his PD symptoms, but once he was skating with the hockey stick in his hand, he looked completely normal! In this video there was another elderly man who had extreme PD symptoms, but they showed him on his bicycle (he did not drive so he biked to his appointment) and when he was on his bike he was symptom-free, then when he was off of his bike his symptoms returned with a vengeance. It seems that when you do something you really enjoy or something that was a favorite activity before your PD diagnosis, you can have reduced symptoms or be symptom free. It is a real outstanding video that was presented at a PD support group. Do you enjoy swimming or being in the water? I find that when I’m in the water (I’m not a swimmer but I walk and march in the water) I feel like a different person.

With regard to the drug that you mentioned, I have had no experience with that. I take Stalevo (which is a long-lasting Sinemet-type drug) and I add some Sinemet to it. The Stalevo helps the Sinemet to stay in your brain longer than the Sinemet alone. I suppose that it is my “med-cocktail” of choice. I wish you well as you as you navigate through all the treatments and meds. Keep in touch with us as you are able, we care!

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