I have noticed that fellow PWPs sometimes ask questions about some issue they are dealing with or share information to help others. Just last week, I participated in this type of conversation with my local PD support group and I think it was helpful for all of us. Speaking for myself, there are a few things that I have discovered that I have found to be very helpful. I am sure the same is true of fellow PWPs. It occurred to me that I need to share these things with the idea that they might be helpful to others as well as me. I would encourage my PD "brothers and sisters" to do the same. We are all in this together!
Before I start, I will mention the obvious caveat which is that I am not a doctor, nor are most of my PD comrades, so appropriate caution should be taken in putting these ideas into practice. That said, there is a great deal of "trial and error" in PD treatment so it makes sense to try different ideas to improve our quality of life.
Pain
I am just beginning my sixth year since my PD diagnosis. I have read that pain is common symptom that crops up over time, especially in the feet and legs. I have mild peripheral neuropathy in those areas as well as a Morton's neuroma (not to be confused with the pot pie) in one of my toes. I have also experienced pain in my left knee that was compounded during our recent trip to China.
I was at a park in Shanghai in a "bumper car" with my six year old grandson. I was riding shotgun since he (obviously) wanted to drive. However, his short legs could not reach the accelerator so I stretched my left leg over to do that. This arrangement worked well enough for a time as we bumped our competitors. But then Bryson spotted a target further away and headed straight for them. Since I had my foot on the accelerator, I could have slowed down to lessen the impact, but I lacked the presence of mind to do that. As a result, we were at full ramming speed when we struck our unsuspecting target broadside. Bryson screamed with delight while I winced in pain as my left knee hit metal. Needless to say, I used the accelerator much more judiciously for the remainder of our ride. Since then I have awoken periodically during the night to significant pain in my left knee.
A year earlier, Linda and I were at a street market in Palm Desert, CA (we get around) where she spotted sample packets for a product named "Topricin" foot therapy cream, a topical cream for pain relief. She grabbed a few which was very fortunate as I began to wake up to intense episodes of pain in my "pot pie toe". For those of you who have experienced gout, this was in the same ballpark. Anyway, she was able to locate these samples and I gave it a try. I am happy to say that my pain subsided within moments after application. I have been using it for the toe pain, which pays me a visit multiple times each week, ever since.
Returning to our China visit, after the bumper car incident I began waking up to pain in my left knee that was much like the previously mentioned toe pain. In desperation, I applied some of the "toe cream" to my knee and the pain subsided! Since then, my "toe cream" supply was running low. I knew I needed to get a new supply before it ran out or I would be "up a creek without a paddle". I googled "Topricin" and found an assortment of the product on Amazon. I ended up purchasing two 8 oz. bottles of a generic (not foot-specific) pain relief and healing cream for "relief of joint, nerve, muscle and back pain". Once I received this new product, I found that it contains ingredients that relieve "pain in the lower back, hip, and spine, pain of impact and falling injuries & contusions to muscles and joints, muscle spasms & night leg cramps, relief of burning pain in hands and feet, relief of sciatic pain and nerve injury pain, and relief of pain from injuries to the knee, shin, and elbow. It further states that it is patented for neuropathy. I paid about $40 for two 8 oz. bottles. It has worked for me.
Sleep problems
Getting a good night's sleep is problematic for most PWPs for one reason or another. A sleep study is something to consider for anyone who has chronic daytime sleepiness (ask your doctor). I have sleep apnea and have used a CPAP for over ten years. The sleep issues associated with PD are a different "kettle of fish". Sleep plays a major role in our quality of life.
I have used foam ear plugs nightly for years to block out much (not all) of the extraneous noise that might wake me up. These are cheap and can be purchased at WalMart or most drug stores.
Our younger son (the science teacher we visited in China) recommended something he uses. It is not addictive, like some sleep aids, and is relatively inexpensive. The product is NutraSpray Melatonin and comes in a 2 fl. oz. spray bottle (1-3 sprays are recommended). It doesn't "knock me out", but I fall asleep naturally and generally sleep without waking up for longer periods of time, sometimes the whole night. It is over the counter and is probably available in drug stores. Check out the contraindications (not be used in conjunction with some other meds) with your pharmacist or doctor. I bought mine online on Amazon for under $10.
Constipation
This is another common problem for most PWPs that can be serious if not dealt with effectively. Based on my research, the most important thing to do lessen the risk of constipation is to be sure to drink enough water! This is huge for so many things that affect how we feel! Make it a priority!
Now that I've gotten that off my chest (by the way, I am not good about it either-I have met the enemy and it is me, as Pogo would say). Eat plenty of fiber and blah, blah, blah-you've heard it all.
I take a stool softener called Prunelax (2 tabs nightly). I also eat 3-5 prunes every morning. As a result, I am a "regular guy". The best price I have found is on drugstore.com ($8.99/bottle). Each bottle contains 60 tabs (a one month supply for me). You will read that this product is not intended for chronic constipation (which is what PWPs have) unless instructed by a doctor. My doctor is a aware that I use it. Check with yours to see if this makes sense for you.
Cognition/Memory
I mention in my book, Window of Opportunity: Living with the reality of Parkinson's and the threat of dementia, that I am finding the combination of the 9.5 mg Exelon patch and Namenda (5 mg) to be very helpful in terms of improving clarity and ability to function. This is something you will need to research thoroughly and discuss with your doctor if you are experiencing significant problems.
I am adding two more (4/30/14):
Balance
This is a HUGE problem for many PWPs that carries significant risk due to risk of falls and the complications they can create. I do not have significant balance problem. I have had two balance-related falls in the last three years, both due to running while playing football and soccer with grandchilren. In those situations I recognize that when I start to lose my balance it is much harder to recover. Fortunately, I was on grass (not the kind you smoke, even though we are in Colorado) which cushioned the falls.
I use the poles as a "safety net" when walking longer distances and also to help me propel myself at a faster rate when walking for exercise. I inherited a very nice set of Alpine "anti-shock" collapsing poles from a dear friend and fellow PWP who is no longer with us. I used them on our recent trip to see the Master's golf tournament. When I went through security, they asked me what they were as they had never seen them before. I was also a curiosity in China (for more reason than one) walking around with these poles. I used them last October at the World PD Congress in Montreal. They are a three piece design that collapse to a length of about 15 inches, so they are easy to travel with.
I have seen videos of how these poles can assist people with more serious balance issues with standing up from a chair, safely negotiating a ramp, going up and down hills, getting out of a car, and much more. It is much safer than using a cane and more effective. It is an alternative that I highly recommend for consideration. They are available at Walmart and Target for $30. Many others are available online.
Taking pills on a schedule
I use a small pill timer from Walgreens to remind me to take my Sinemet every four hours. If I happen to leave it at home, I am likely to forget and don't realize until I start to feel symptoms (headache, dizziness, stiffness, slowness, etc.). I have learned that, if I get off schedule it takes quite a while to get back on so I end up feeling lousy for the rest of the day.
The timer I get is designed to stick on the top of a pill container, is white, and can be adjusted in hourly increments. The old model (Dose-Alert Pill Reminder) worked just fine, but they replaced it with a more expensive model with voice prompts in addition to beeping. It is still well worth it (under $20 and lasts for months). I know there other strategies for this same purpose, like watches with timers. or timers on iphones, etc. I am not very techy plus anything complicated throws me for a loop. This is a system I have gotten used to that I can manage.
I hope this information is helpful!
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