** Here is a blog post I wrote for “PD Wise” which is a great resource for Parkinson’s disease and stories of people fighting the condition. -Enjoy!
My life before I had Parkinson’s? Sometimes it is hard to think about that time because when you have a neurological condition, you learn to adapt, to accept and move forward knowing that you will never be the same person again. Not worse, or better, just different. Many people know of Parkinson’s disease as a movement disorder, but there is a whole bag full of symptoms that you can experience. So I thought I would make a list of the things that I didn’t even notice before I had Parkinson’s.
I could rise with the sun and not feel like I just woke from a coma.
I used to be able to get up in the morning and the moment I opened my peepers, I was smiling. I could never sleep past 8 am, even if I had been up late the night before. But then I was diagnosed with Parkinson’s and then even opening up my eyes in the morning became a challenge. Now, I hide in my apartment until my medication has kicked in. Almost like those ocean creatures that have never been discovered before. You know the ones that live miles under the water and never come to the surface to be seen by human eyes… that’s me with no Sinemet… {Click here to continue reading}
THANK YOU for this blog! My son was diagnoised 4 years ago. I did not know for a while. Now It often breaks my heart and I fight tears in his presence. I am going to obtain your book in an effort to understand myself and help him and his family more. This is devastating for him (an his family). He is VERY active in his community, coaching, job, 5 children who are all teens or better now. His children are supportive and once drove more than an hour because he forgot to take his meds with him. I live 1.5 hours away but reading here learned I still need to mange time to offer my time to him and his. So thankful this is becoming a disease we talk about -being myself one who battles major depression.
Charlotte, Communicating with loved ones about Parkinson’s disease, is a huge step that not everyone can take. But it makes the diagnosis a little easier to swallow if you have a good support system already in place. Sounds like your son has already started working on strengthening his wolfpack. Thank you for sharing!
Hi Perky,
I was the same as you, but with two boys. Aged 2&4. I used to bounce out of bed and walk. 6 k every. Morning before the sun was up…..then. It started to get harder to get motivated, headaches etc, you know how it goes…… steady decline and I was. 36. Couldn’t work out why I was changed……PD. Diagnosis….. ok. Moved on. Wouldn’t have DbS until my boys were 16&18.. in. 2011. Worried if it didn’t work out……
I’m almost 60 now , just started mood stabilisers. They have had a good effect, baby doses. Felt like I gotten weak, wrong but. Best thing next to DBS….just got to keep going. No other option 😁😁😁
Beth, thank you for sharing your story… you’ve been challenged but keep on moving forward. Keep it up!
I came across your blog doing research on duopa. My wife was diagnosed with PD about 10 years ago. Initial diagnosis was an Atypical PD named CBGD which has a life span of 5 to 8 years. God had other plans though and she miraculously started responding to dopamine. She had the DBS surgery in 2014 but they were not able to place the leads correctly on her left brain. It was not an issue since most of her symptoms were on her left side. However, then the right side became worse so in April of 2018 she had the DBS re-done. This was a mistake. Before the surgery she could drive, talk and walk fairly well.. Now she is suffering from severe weakness, falling almost daily, can barely talk and cannot drive. Our last visit to the Neurologist we were introduced to the duopa pump possibility. Does anyone have any experience with this helping in the weakness area? I’ve read some of the blogs where patients went into the hospital in wheelchairs and walked out after the pump was installed so I tend to think it might be beneficial. I enjoy your blog Perky!
Roy, I am so sorry to hear about your wife. Sounds like you guys are in a challenging place. I am not sure about helping weakness, although it sounds promising that she responds well to dopamine. Thank you for sharing your story.
Thanks for the always-humorous-but factual account. I am especially intrigued by what we do with mood changes. I assume that you mean an anti-depressant as a “mood stablizer.” On another note, I have decided to try to enjoy my symptoms instead of fighting them. Or at least treating them neutrally.
On another note: PD has given me a new vocabulary. I looked up the word festination after I tried to jump out of bed in order to say good morning to my partner before she left for work. I festinated all the way down the stairs. Now I must try to enjoy festination. Or go with it instead of fighting it. Does that make sense? Thanks again.
Garrett,
Festination works for me! Thank you for sharing!