Suzanne Lang
Forum Replies Created
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Neither my husband, who has Parkinson’s, nor I (his caregiver), like the term “Parkie.” To me, especially, it feels demeaning and immediately puts people into a perceived classification. Since no two people experience Parkinson’s disease in the same way, one term does not and should not fit all. We try our very best to keep things as normal as possible and not fall into a particular category. Having said this, if you are comfortable using the term, I think that is fine…once again, it’s all about individualism!
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Regarding the discussion on Mannitol. Can someone tell me what specific Parkinson’s symptoms that it targets/improves? I am an RN, retired professionally but “working” full time as my husband’s caregiver – he has Parkinson’s. The only thing I know about Mannitol is when I worked in the ICU (many years ago!) and it was an IV drug to reduce swelling in a patient’s brain.
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My husband swears by Kiziks and has several pairs. The slip-on convenience is a lifesaver and they look very good. However, they do not give him enough support when doing his daily walk so he turns to his trusty New Balance sneakers which he leaves laced up and is able to slip into, albeit not as easy as the Kiziks.
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My husband who has Parkinson’s and I (his caregiver) still wear our masks in certain indoor settings such as the market and the casino. I am very comfortable wearing a mask and my husband has come to understand its value.
We are both fully vaccinated and boosted and good about wearing masks. In February we attended a Valentine’s dinner. There were a lot of people, no masks including the servers. Ten days later we both tested positive for COVID19. We were both sick as dogs. Paxlovid helped. The thought of going through that again is powerful enough to put in the mask!
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Hi Diana,
I would be interested in being part of a PD caregivers group. I hope I am not too,late in responding. I am just figuring out how to negotiate the Parkinson’s New forums.
My husband was diagnosed in 2019; but like many others’ experiences, we know he has had it for a longer time. He lost his sense of smell about 20 years earlier and nobody ever picked up on that…of course it would not have changed anything and maybe we were better off not knowing.
We are trying our best to keep a little ahead of the Parkinson’s but each day it gets a little harder to do. I am an RN and am his sole caregiver.
I would love to be part of an online support group as it is a lonely road. Our social life is primarily made up of going from one doctor appointment to another along with PT. On the rare occasion that we have some place to go, Mr, Parkinson steps in and he is not able to go.
I will try to message my email info to you and look forward to hearing from you and participating in this much needed group.
Suzanne
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Despite two vaccine doses followed by 3 boosters, my husband (who has Parkinson’s) and I (his caregiver) recently had Covid. It was a very rough case for both of us. Indeed the worst flu ailment I have ever experienced. His PO2 dropped to 90 and I was afraid he might have to go to the hospital. The doctor ordered Paxlovid and 3 days later he was on the road to recovery. Throughout the entire ordeal, his Parkinson’s did not change or worsen. In fact, we saw his neurologist yesterday (3 weeks post Covid) and he scored higher on his neuro exam than he did three months ago.