As I write this, October 2017, I have had Parkinson’s approximately 14 years. I plan to incorporate some earlier writing into this blog, but at this point this will serve as a quick catch up.
This picture was taken on August 9. That was one of my best days in recent times. The picture was taken by my college apartment-mate, Debbi Berke, while we were in Denmark on a Baltic Cruise. The reason I feel I look good in this photo is that I had had two acupuncture treatments, that morning and the day before and I felt more “upright” and alert as well as less pain.
My journy with Parkinson’s started the year Jonathan graduated high school, 2004. And therefore, it’s been Ron’s and my journey since the kids were largely out of the house and have not seen the daily battles with this disease. It’s relatively easy to only go out in public when you are “good” but I think both Debbi and I learned a lot about “sharing” the daily living issues of this disease when she visited for a week in June and then the two weeks on the cruise.
Very briefly, In 2004 I started with knee pain, Ron also notice my right arm not swinging. By the end of the summer the pain stopped but my walking became more and more difficult. In August 2005 I was told Parkinson’s or MS but then a MRI showed spinal stenosis and I had a laminectomy C4-C7 (no fusion). Recovered partially, diagnosed Parkinson’s January 2007.
The key to living with Parkinson’s is education and understanding your body but I will cover that more later. I participate in several support groups. (By the way – I’m still trying to reach my goal of 60 donations for my upcoming 60th birthday via the Boca Raton Moving Day event. Moving Day Boca 2017)
My movement disorder specialist keeps telling me that “I look great” and take relatively low amounts of medication but without that medication I don’t walk or move AND I don’t think well because Parkinson’s is a slowing of the whole body. Very briefly the three main medicines are Sinemet which is artificial dopamine, Requip which helps the body make more of its own dopamine and Azilect which helps the body use what dopamine that is there more efficiently. Recently I’ve had to stop the Azilect because it seems to over react with one of my pain medications and I can tell that the sinemet doesn’t last as long without the Azilect.
Thanks to a recommendation by my friends Kathy and Kevin Murphy, I’ve been using hiking sticks for I don’t remember how long as a walking aid when I get tired. This works better than a cane because it reminds me to stand straighter (and my physical therapist agrees with this). Two years ago however we took a trip to Europe and walked way more than we probably should have 3-7 miles a day over a 12 day trip. After this I started with severe back pain. I had a discectomy L2-3 July 2016 but problems at L3-4 and possibly sciatic region were not addressed and the pain persists.
While for many years I lived by a aggressive exercise routine, I have had to reduce it significantly. I generally wake up with no pain , but the minute I put my feet on the ground it starts, If I have to stand for any given amount of time the pain is horrible and I can barely walk a quarter mile. I am working hard with physical therapy to reverse this but it’s getting discouraging. I’m also trying acupuncture with a local MD. I don’t want to look at surgery but any suggestions are appreciated. Pain injections (Steroid) have not helped but 10mg a day of prednisone does seem to help.
I’m glad to get this much done, I’ve been wanting to do this for a while, I hope to add more later.
Gloria, so sorry. My wife Gail also has a lot of pain. POTS which means she can not stand for long periods without getting dizzy and having a huge drop in B/P. She has low spinal fluid and gets constant headaches when upright . We will go to John Hopkins for testing but a blood patch did not work. She has a pick line for fluids every day. It got infected and she spent 2 weeks in the hospital and 2 in a rehab after C-Diff from all the anti biotic. Now the blood and lung infection has left inflammation and nodules in the lung. Allergic to the steroids they would give she takes pain meds and some Ibuprofen . The pain is so intense she can not work and spends only short periods out of bed. She has Plueritis, so it is like sand paper rubbing together when she breathes. No one can help. They all say time. She is up to 3 Norcoe tabs 3 times a day which is way too much. She is depressed and I spend every moment not at work getting her appointments . She can’t cook take walks and can only be downstairs a bit at a time. Lucky like you she is smart and does some consulting on tube feedings and such out of bed on the computer. Very hard. Thank G-d the kids are away but they call all the time. Our dog helps her a lot. So we know what it is to be in constant pain. Month after month bad days and worse days.
I hope you are able to find some relief. Joel
Wow. My thoughts are with you. Ron has done all the cooking for the past two years or so and a friend of his cleans.
Funny thing a while back when I felt pretty good and did stufff in the kitchen he felt “threatened “
Acupuncture seems to increase my mental cognition and I’m using that time for some more difficult stuff like repair sewing and filing and making my granddaughter a Chanukah present (actually two)(a doll blanket and a picture book about apples growing and Ron making applesauce)
My kids hardly realize what’s going on. We babysat last weekend so they could camp.
Gloria, so sorry. My wife Gail also has a lot of pain. POTS which means she can not stand for long periods without getting dizzy and having a huge drop in B/P. She has low spinal fluid and gets constant headaches when upright . We will go to John Hopkins for testing but a blood patch did not work. She has a pick line for fluids every day. It got infected and she spent 2 weeks in the hospital and 2 in a rehab after C-Diff from all the anti biotic. Now the blood and lung infection has left inflammation and nodules in the lung. Allergic to the steroids they would give she takes pain meds and some Ibuprofen . The pain is so intense she can not work and spends only short periods out of bed. She has Plueritis, so it is like sand paper rubbing together when she breathes. No one can help. They all say time. She is up to 3 Norcoe tabs 3 times a day which is way too much. She is depressed and I spend every moment not at work getting her appointments . She can’t cook take walks and can only be downstairs a bit at a time. Lucky like you she is smart and does some consulting on tube feedings and such out of bed on the computer. Very hard. Thank G-d the kids are away but they call all the time. Our dog helps her a lot. So we know what it is to be in constant pain. Month after month bad days and worse days.
I hope you are able to find some relief. Joel
Wow. My thoughts are with you. Ron has done all the cooking for the past two years or so and a friend of his cleans.
Funny thing a while back when I felt pretty good and did stufff in the kitchen he felt “threatened “
Acupuncture seems to increase my mental cognition and I’m using that time for some more difficult stuff like repair sewing and filing and making my granddaughter a Chanukah present (actually two)(a doll blanket and a picture book about apples growing and Ron making applesauce)
My kids hardly realize what’s going on. We babysat last weekend so they could camp.
Gloria, so sorry. My wife Gail also has a lot of pain. POTS which means she can not stand for long periods without getting dizzy and having a huge drop in B/P. She has low spinal fluid and gets constant headaches when upright . We will go to John Hopkins for testing but a blood patch did not work. She has a pick line for fluids every day. It got infected and she spent 2 weeks in the hospital and 2 in a rehab after C-Diff from all the anti biotic. Now the blood and lung infection has left inflammation and nodules in the lung. Allergic to the steroids they would give she takes pain meds and some Ibuprofen . The pain is so intense she can not work and spends only short periods out of bed. She has Plueritis, so it is like sand paper rubbing together when she breathes. No one can help. They all say time. She is up to 3 Norcoe tabs 3 times a day which is way too much. She is depressed and I spend every moment not at work getting her appointments . She can’t cook take walks and can only be downstairs a bit at a time. Lucky like you she is smart and does some consulting on tube feedings and such out of bed on the computer. Very hard. Thank G-d the kids are away but they call all the time. Our dog helps her a lot. So we know what it is to be in constant pain. Month after month bad days and worse days.
I hope you are able to find some relief. Joel
Wow. My thoughts are with you. Ron has done all the cooking for the past two years or so and a friend of his cleans.
Funny thing a while back when I felt pretty good and did stufff in the kitchen he felt “threatened “
Acupuncture seems to increase my mental cognition and I’m using that time for some more difficult stuff like repair sewing and filing and making my granddaughter a Chanukah present (actually two)(a doll blanket and a picture book about apples growing and Ron making applesauce)
My kids hardly realize what’s going on. We babysat last weekend so they could camp.