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Posts (7)

Feb 18, 2017 · Living with Parkinson's Disease - Meet others & come say hi in Parkinson's Disease

Hello to Everyone! I’ve been away awhile trying to sort through physical and mental difficulties and make life decisions. I have recently gone on disability indefinitely. I began this PD journey 1 year ago. After coming to grips with my diagnosis which took a couple of months, I began a proactive approach and mindset to exercise, diet and general lifestyle choices. I began to slump and fall of in my quest in September, 2016 when my father suddenly died of a massive heart attack. I wasn’t necessarily that close with my father, but he was my father nevertheless, and my last living parent. It did have an impact that I didn’t anticipate. I am an only child and his passing began a series of flashbacks and memories of all those that have left my life. Depression started setting in an I became more sedentary and isolated. The holidays were a struggle and working became more and more of challenge. So, I decided to go on disability to try to get back on track. It is very scary–I’m only 60 years old and not really ready for retirement mentally nor financially. But, I felt myself slipping away to the point that I wouldn’t be good for anything or anybody very soon. Feeling better physically because I have gone back to PT and now have OT and will begin ST therapy again real soon. Looking for a physical support group and group exercise, something I couldn’t take advantage of while working. If anybody has insight and experience with filing for SSI and the process, please share.

Dec 7, 2016 · I have PD (Parkinson Disease) in Parkinson's Disease

Something that’s recently come to my attention again is that PD could be linked to environmental toxins. I was exposed to mold in the work place about the time I started having symptoms. Coincidence, maybe! I have the report from the re mediators and showed it to my primary. She wasn’t alarmed by the report nor thought the levels were high enough for me to be concerned. One of my co-workers still works in the area where the mold was found. It has since been remediated (hum!), she has serious lung issues still. Others work in the area, but don’t have issues at least not the appearance. I work in the same building a few doors down. But, I frequent the affected area and had my first symptoms in the building. I am sharing this because I was wondering if anyone thinks they may have been exposed to an environmental toxin that may have caused the onset of PD. I know that they are doing research in this area, but I have not seen anything conclusive. And, if I wanted to pursue I don’t even know how I would get started.

Dec 7, 2016 · I have PD (Parkinson Disease) in Parkinson's Disease

Hello everyone! Happy to see all stories and comments. I have not been on the site in awhile. Managing my symptoms pretty well considering. I have a bit of anxiety and my confidence is suffering. I find myself telling people that I have PD because when I speak I have a bit of a slur. My PT-Speech tells me she doesn’t detect it–not that obvious. But, I feel so slow and not quick to react in conversation and to movement in general. Kind of confused and in a fog. I fight to stay motivated and excited. Its the holidays and I’m kind of wishing they would hurry up and go away. I can’t do what I used to be able to do for myself or my family and it is frustrating. I haven’t really adjusted to that. All I can do is get back and forth to work, come home and go to bed. By the weekend I’m so exhausted. I have a grandchild and another on the way and have no energy for her.

Aug 11, 2016 · I have PD (Parkinson Disease) in Parkinson's Disease

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.

Jun 3, 2016 · I have PD (Parkinson Disease) in Parkinson's Disease

Hi Colleen! Sorry it took me so long to respond to your message. As you can guess, the first couple of months after a diagnosis such as PD has been a whirlwind, full of ups and downs, confusion, research and trying to settle into acceptance. Thank you for your encouragement and comments. I am managing pretty well and organizing my busy schedule. Meds are helping for the most part; keeping a positive attitude and excepting some of my limitations at the same time focusing on not laying down, if that makes any sense. I joined the Y 5 minutes from workplace a couple of weeks ago. I work for a school district and they offered employees a membership for $50 a year. Normally $300.00! They have all kinds of unlimited classes for every fitness level, including Yoga and water aerobics. Work is o.k., its keeping the bills paid, and I am not looking to far into the future. Its a day-to-day mindset. Again, thanks for you concern and thoughts. I’ll try to keep up with the communication. 🙂

Feb 22, 2016 · I have PD (Parkinson Disease) in Parkinson's Disease

Thanks for your reply. 🙂 I’m looking forward to sharing my story. This has been long 2 year struggle to get to a diagnosis. I live in Los Angeles, Ca. It started in 2014 with a horrible bout of vertigo which left me disabled for 6 weeks. I lost my balance and hearing in right ear. During that year, I was going back and forth to my primary with concerns about stiffness, pain in joints, loss of motivation, depression and fatigue. Saw ENT also for hearing loss which took about a year to return to about 80-90%. But, I never really regained my balance. Took Yoga classes and went to PT for balance exercises. Other symptoms started to appear in 2015. Slight left hand tremor in certain positions, hoarseness that my primary kept attributing to post-nasal drip, dragging of left side when walking, constipation, persistent fatigue, slurring of speech and loss of the ability to multitask which I was always good at. After seeing a lot of specialists and testing, I finally saw the neurologist who diagnosed me in Jan., 2016. I am still working but have a commute that will probably force me to retire. I have told my employer and some co-workers. I am on FMLA to hopefully protect my job until I am forced to exit. It seems as though they would rather that I just resign. I am beginning to get passed over for assignments. 🙁 I am fine for now, but unsure of the rate that my symptoms with progress. Trying to work another year or so. I have a wonderful partner for whom I have been with for 15 years and live with. He also has some health issues but we have managed to maintain loving relationship and help each other with life’s challenges. He has been very supportive! Our future is uncertain as to whether one or other of us will need constant care. We are taking it a day at a time. My children are 25-34 years of age and live close by and are thriving in careers. My partner has 2 daughters who are 27 and 33, not so close. I have one grandchild age 2. I am currently researching fitness classes that will work with my hectic schedule and support groups for newly diagnosed PD patients who are not necessarily in the latter stages of the disease. I also will be starting Speech Therapy in a few days. Thank you for listening and caring.

Feb 12, 2016 · I have PD (Parkinson Disease) in Parkinson's Disease

Hello! My first time on the site. I was recently diagnosed with Parkinson’s disease. I am 58 years old! Raised 4 children as a single parent and was looking forward to my golden years (travel, hobbies, networking, social etc,) Devastating blow that makes me hopeful that something good will come from this and then in the same hour feeling hopeless and vulnerable. Trying to figure this whole thing out.