So, it turns out that my limp and head shaking are caused by off period dyskinesias.
In short, in the time between when one dose of my carbidopa -levodopa is wearing off and when the next one kicks in, my head shakes (as if I was saying no) and my foot turns in causing me to limp.
After speaking with my doctor, I decided to try Gocovri, a treatment for off-periods.
It is a time release version of amantadine. I took a half-dose for about a week and then a full dose for 5 days. Unfortunately, before the drug started to take affect, a side effect did. I had such severe dry eye that my eyes watered to the point that I could barely see. One day, while driving to work, my eyes were watering so badly, that I had to turn around and come home!
Oh well, one miracle drug down the tubes! Please do not let my experience keep you from trying it, just know the risks.
Inbrija
Now I am trying Inbrija. Essentially, it is just Levodopa in an inhaler. It is also for off periods. I tried it the other day and my limp went away! There is one very minor problem and that is, you must get used to inhaling a dry powder. After 2 or 3 tries, I got the hang of it. I will know more about how well it works for me when the "shelter in place" period is over and I am out and about more often, but I am hopeful!
Coronavirus & Parkinson's
People ask me; how does the Coronavirus affect people with Parkinson's disease? The answer is complicated. Since only 4% of people with Parkinson's disease are under 50, just like other people in this age range (60 and over), they will be more vulnerable. It appears as though the Coronavirus is more dangerous when you have a comorbidity, so people with PD should be more cautious.
Here are some suggestions for helping people with PD:
- Have your medication delivered and if absolutely necessary, have someone else pick it up for you.
- Avoid beef and dairy just prior to and immediately after your medication. (I would avoid it entirely, but that is a story for another time.) Meat and dairy appear to make PD medication less effective.
- Take your medications at the prescribed times!
- Get the medication list and schedule for a loved one with PD. I cannot stress enough how important this is.
- Offer to get things at the store for a neighbor, family member or friend with PD. UNLESS, you are also over 60 and then, get whoever is doing your shopping to pick stuff up for them. Do NOT be a hero!
- Unfortunately, children can be asymptomatic carriers, so this is not a good time for visits from your nieces, nephews and grandchildren.
- If someone you know has PD, set them up with a Zoom account (or something similar) so they can stay in touch with family and fiends.
- Call to say hello at their medication times so that you can remind them. If 4 people call daily, you will have this covered! Try this, "I am sorry to call at this time. Is this when you normally take your medication?"
Worst Case Scenario!
If you, a friend or family member gets the Coronavirus, you must talk to the doctors and nurses to ensure that you/they are given their medications at the prescribed times. Even in the best conditions, hospitals often ignore prescribed medication times. Hospitals are normally chaotic, I cannot imagine what our healthcare professionals are going through now!
Here are some additional tips:
- Send thank you notes with cookies or a pizza (several times) along with a note that reads: "Thanks for taking care of my Dad, (insert name). As you may know, he has Parkinson's Disease. His symptoms are... He must take the following medications at these times...
- Get one of these now! Seriously, right now!
- Get help and support for yourself!
Caring for Caregivers
While doing some research recently, I found several studies which indicated that depression and anxiety are often worse for the caregiver than the patient. This is especially true if the patient has untreatable symptoms. Many of us, myself included, have had the experience of seeing a loved one suffer. Now imagine, if you can, seeing that everyday and knowing it will only get worse. The effects are devastating.
Here are some tips:
- Ask, "What can I do to help?" This implies, "I am going to help you, I just need to know how." Do not ask, "Can I help?" This implies, ""Please, please, say no!" Thanks to Kate Lynch for this tip.
- Send food. If you know what they like, order, then call 2 hours in advance and say, "I have arranged for dinner to be sent at this time..." This is better than, "Can I send you dinner?"
- Ask, "I was wondering how you were doing? I have heard it is often worse for the caregiver than the patient..." Let them know that you are aware of their suffering and that they do not need to be brave for you.
- Pick up the phone.
- Take them out to dinner (with drinks).
- Pay for a massage.
Until next time...
