I'm dealing with having Parkinson's Disease as well as Chronic Kidney Disease. I have insomnia and other problems that make it difficult at times to cope. I use my computer a lot to access free interesting articles and to look up things I find interesting. I hope everyone is having a pleasant day.
How do others deal with multiple health pro... - Kidney Disease
I have multiple health issues as well. Mine, however, are all connected in one way or another.
I have T2D (about 20 years), high blood pressure and AMD. Those conditions led to a diagnosis of CKD a little over two and a half years ago. My T2D is under control without meds, my HBP is under control with meds, and my AMD is stable as long as my diabetes and blood pressure are stable. The CKD is there hovering overall and while I continue to follow the guidelines of my care team, including my renal dietitian.
I also use the internet but never for diagnostic purposes.
At this point in my life, I've learned to not worry about what I can't control.
Try not to get too depressed with the up and down fluctuations in your GFR. Mine was 32 at diagnosis and its highest was 65 since then, but more importantly, I've averaged 51.
I don't know where you are with Parkinson's, but, have you spoken to your doctors about the paths available to you?
Multiple health issues, in many cases, can be dealt with but it isn't an easy road.
How do you spend your spare time? What type of support system do you have?
You've come to a good community to share and get ideas and support.
I have a son and a daughter who are both very helpful. I try not to bother them needlessly. My daughter takes me to her house on Saturday evenings for dinner and a movie at her home. My son comes to visit on Sunday afternoons and we chat and then play Scrabble. On a positive note, my kidney function has stayed at the same level for a while now. I have quit taking some of the Parkinson's medicines because of side effects and now only take the medicine that helps with movement problems. I take a blood pressure medicine and a blood thinner. I have come to the conclusion that some of the medicines I used to take were detrimental to my kidney function. Thanks for your previous comments. No need to reply to these rambling thoughts I just posted.
Don't you wish that life was simple? I sure do.
How does anyone cope? We all do the best that we can, eat healthy, keep doctors appointments and work with our medical teams and count the blessings that we do have; finding good in each day, things that we can do and enjoy loved ones who help make it a full life.
My husband's PhD studies and dissertation were on Parkinson's Disease so I have some what an idea as to what you and your family must be going through. At the end of his research studies he worked in a clinical situation under his mentor professor with patients who had Deep Brain Stimulation Surgery. They did a study on speech and swallowing with Parkinson's Patients which is still in progress even after his graduation and that of several other students. Due to his strong background and experience as an educator, he assisted in a group which worked on singing and voice tone. It wasn't a support group but the folks who participated were amazing, supportive to both each other and loved working with him. Part of his responsibility was to call each participant at the end of the week and see how they were doing and what kind of week that they had. He loved it and they were delighted to hear from him. Identity was publicly confidential.
Levels of progression were diverse but everyone looked forward to their
" class". Spouses and caregivers were also welcome at the group. They had parties, music etc. and were social as well.
This was free through the university and free speech therapy was included.
Many participants came via neurologists and others my husband connected with by attending support groups.
Just a thought to give you an extra to attend; speak to your neurologist and research colleges in your area who offer degrees in Neuroscience, CLLC and speech therapy; see what is out there.
My husband still raves about the friendship he saw and people that he met and are thrilled when we run into them even now after his PhD is finished. ( lol - he is not 22, he is an adult)
Your children sound wonderful and blessings to you. No one is a bother when love is concerned.
As far as the medications, work with your doctors to find the right mix and how they interact with your other medications. Drugs.com can help, but speak to your doctor's.
I am sure that you know about the Michael J. Fox fund and research. They also offer a vast amount of information. Reach out to them.
Know that our thoughts and prayers are with you. Each day is another day of living and loving.
Please let us know how you are doing.
We stand strong behind you.
I enjoy listening to music and studied clossical piano with a private teacher. I also enjoy reading. Years ago, I was prone to reading mystery and sometimes I even read Stephen King. I had to quit reading Stephen King after finishing his book titled "Misery," as my nerves couldn't tolerate such gruesome topics - LOL. These days I prefer nonfiction on a diverse set of topics. I've been lucky to find interesting articles from magazines that are free online.
Thanks for your information about your husband's involvment with Parkinson's research. I'm familiar with the Michael J. Fox organization and other research groups.
Thanks again for taking the time to comment on this site.
Attitude is key. If the worry about the diseases get too much, they win. And I don't allow that. I have CKD and Psoriatic Arthritis (PsA) and Diabetes. The PsA caused both the CKD and diabetes. Wish I knew then what I know now. But I did not so.... onward. My way of coping is to be involved in education and support. I also volunteer a ton so I am busy.
I hope your day is always pleasant.
Hi there, Sleezy! This is true. Keeping busy is helpful. It can help deter you from focusing too much on health issues that can only be managed, not resolved completely. And a good way to accomplish that is to involve yourself in something constructive and positive like reading (it’s always educating; that’s a good thing.) But sometimes I find, even with all of that, I still have tendencies to feel down. I too, have a number of health issues that, unfortunately, sometimes require me to slightly neglect one, in favour of another for a time. It’s kind of like babysitting; sometimes one child requires a little more attention than the next. It’s a rotation. It’s part of the journey. I’m so thankful for this forum everyday since I found it. It has definitely improved my outlook, not to mention my knowledge about managing my CKD. All my best to everyone here. 😊👍
Hi again, Sleezy! I know exactly what you mean. I sometimes use both television, and my cell phone, to watch old episodes of my favourite sitcoms from the nineties, and the sixties, like Boy Meets World and The Patty Duke Show! Lol! I tend to enjoy shows from the nineties particularly, because that was the era of time when I still had both youth, and fairly good health on my side. Besides, getting to look at Will Friedle (yummy!), is always helpful! 😃Oh well. Sometimes escaping for awhile into an entertaining show is good for us, right? Amen! All the best to you! 😊👍
No, I don't have a dog now. However, I see my daughter's Yorkshire Terrier each Saturday and she loves to sit in my lap. I used to have a mixed breed dog that my son rescued from the street. I named him Henry and Henry was a very good pet. He was also a "foster mom" to a newborn kitten I raised on a bottle. Henry was a special dog and I have fond memories of him. He kept me company while I took care of my mother following her heart attack and colon cancer. Dogs are wonderful pets but I can't manage one these days because of having Parkinson's Disease.
God bless you.
Oh, I apologize. I'm still learning to navigate this site and didn't realize you had Parkinson's. God bless you! All our dogs have been rescues (or from our shelters) so God bless you again for the care you gave your pets! Your daughter's Yorkshire Terrier knows you are an animal lover and loves to sit on your lap. :o)
It’s so good to hear about all of this love for pets, and animals in general. From one pet owner / lover to all the others here, God bless you.
I sort of guessed from your name that you may be an animal lover as well! Lol! I think that you are an awesome person for rescuing animals that have been through distress. Kudos to you!
I don’t have a dog, but I do have a cat. I wouldn’t be able to care for a dog, much as I love them also, as I have mobility issues myself (advanced neuropathy, osteoarthritis, and chronic gout), and dogs require more care than cats do. But I have a very deep love and affection for my cat. He is always by my side, especially so when I’m feeling unwell. Almost as though he knows I need him to comfort me. And they do love unconditionally, don’t they? All they want really, is your love in return. And they’re loyal to you. All the traits we wish we could find in people, but sometimes don’t actually get! Lol! All the best to everyone here! 😊👍
I know! They are so adorable, right? Sometimes, when I get really down, the only thing that can lift my spirits, is watching one of those cute pet videos. I think it’s even been proven that watching animals can contribute in a positive way, to one’s well-being. I think that’s because they are so innocent and often times, fun-loving and exuberant. 🐱🐶💕💕