I’ve been officially diagnosed since 2015, tremors on left side two years prior. I have counted myself as fortunate. Independent, driving at 74, gym rat, very gradual progression if at all. MDS has kept me at c/l 25-100 three times daily plus rasagiline. Yes, I have had off periods where my energy and mood decreased, but easily remedied by the next dose.
Unfortunately the last six months have been challenging to put it mildly. Unexplained chills and fever off an on turned out to be a serious bacterial infection caused by a breast implant, plus a recurrence of breast cancer in the skin of my mastectomy side, four broken ribs due to being ill, a six hour plane ride and probably hypoxia due to wearing too good a mask, UTI, and three hospitalizations to treat the infection in my blood, and finally surgery to remove the tumor and implant. While in the hospital my PD medications were given at times very different from my usual schedule. The fevers made me weaker and weaker and in the hospital I was confined to my room because of COVID, becoming more deconditioned.
Now I’m three weeks post surgery, doing better overall but still tired, napping every afternoon. My coordination is off. It’s harder to open jars and bottles or manage tricky zippers. Short walks or local trips to the store or the doctor leave me exhausted. My regular appointment with my MDS had to be canceled since I was hospitalized and not rescheduled until early November. My dominant right arm is showing signs of tremor during off periods. I am taking an extra half c/l with prior permission from my doctor. I want to get back to where I was, but now I’m considered to be immunocompromised so even with a COVID booster vaccine I’m not willing to go back to the gym or attend indoor social events. But so very grateful that the cause of my illnesses is gone, albeit having some radiation in a few weeks to decrease the chance of cancer returning.
Sorry for the long post. Has anyone else dealt with other serious illnesses and had PD get worse? Can I expect to regain my energy and coordination as I recover and get back to exercise?
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Lionore
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No one here need ever apologize for a long post. The more complete and detailed the better. What I find frustrating are short posts asking for help that leave out all kinds of pertinent information.
I believe recovery is possible. Hopefully those with experience with similar situations will chime in.
My regular appointment with my MDS had to be canceled since I was hospitalized and not rescheduled until early November.
Don't forget that doctors often have cancellations. You may be able to be seen sooner, if that is something of interest to you and you're willing to ask.
Even without PD you would be weak and lacking energy given what you have been through. My mother who is 85 with PD was recently hospitalized twice with serious UTIs (almost septic), she had to be intubated and we thought she might not survive. But she did and she is doing much better than we expected. It may take some time but you can bounce back.
Over the past three years I have had a five and a half hour heart operation, two prostate operations, the last of which revealed cancer, which has spread all over the place; a colonoscopy which found nothing to cause my constipation.
Yes! I have been in and out of hospital many times and each time my symptoms start returning and I have to wait until I can start walking again before they start getting better again. But I have never got back to walking for one full hour, three times a week at around seven monutes a kilometre. That is now down to ten minutes a kilometre and have only namaged to walk for a maximumlf forty minutes a time.
Hopefully , I will get backm up to one hour each walk and maybe all the health issues will hold off for a while.
But life is wonderful. We still enjoy each other's company, even though we are often in lockdown. Classical music and good documentaries are a boojn every evening. I still spend eight to ten hoirs a day on my laptop, and am very HAPPY!
You've been on a rough road for months and your surgery was so recent. I agree with others who suggest your recovery IS possible AND you need more time to get to your expected level of energy.
Also, fatigue is a known side effect of radiation so you'll want to take that into account after you start treatment.
Here's an anecdote that I hope encourages you: My mother (not a PWP) had six weeks of daily (5x/week) radiation after a breast lumpectomy in early 2016.
She was 85 years old at the time and yes, the treatment sapped her energy for several weeks. She was discouraged because she couldn't "do anything."
But her energy slowly returned over time after treatment stopped, and I saw her activity and personality "back to normal" some time after that.
PS: She turned 91 in June, still lives in her home (with my sister), takes daily naps, and paces herself to do household chores and yard work because she likes being busy and productive!
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