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Posts (1137)

3 hours ago · Mild Cognitive Impairment (Mild Neurocognitive Disorder) in Brain & Nervous System

Greetings…welcome to our first reunion, Sarah, @emyliander, and Ellen @helenfrances. It certainly does seem like it has been a long time since we had an update and a timely conversation? Sara, @emyliander, how is your new home? Are you all moved in? I have to ask…..do you have a garden for your flowers? And I hope your daughter is tucked away at her special school or is COVID19 still mandating that she remain with you.

And how about you Ellen, @helenfrances? You, in June, were waiting to complete a withdrawal from Clonazepam and continuing to do research and some shared decision making about your road ahead with your neurologist.

I think in June, we were all talking about how cognitive impairment at the mild stage was affecting our lives. Do our life partners and families recognize our somewhat staggering memories? I think you were looking at a shared support group or class with your husband Sarah. And I was asking you to get a medicine review to make sure those stomach issues were being taken care of.

I will share with you a couple of medical hurdles that I find challenging right now. I found a tiny crunchy nodule on my sternum which ended up being squamous cell carcinoma and was promptly surgically removed. Now I wait like so many others who receive a cancer diagnosis of any kind.

You're not going to believe this one…..I sure didn't until I had spent several days in what I call an itch bomb. It is called neuropathic itch and does its annoying work inside your body. No matter how hard you try you can't scatch it because you can't reach it. So now I am being a guinea pig for different medications to see which might work best without side effects. At the end of two weeks, I make a switch and we see what happens with a new trial.

So…fill me in and fill me up with news and highlights. It seems like things are pretty quiet with the travel restrictions. I must admit I am hungry for a play at the Gutherie. Dinner at Sea Change…..actually sitting in a restaurant might also be nice. Shoot, I would even go to our adopted granddaughter's softball games if I could remember the day. And that is where I will end for tonight. I am noticing greater difficulty with recent memory especially when I am talking and lose my thought. I see people either trying to help me by feeding me the words or looking away as if they haven't noticed.

How are your memories holding up………do you have any tricks or hacks to share? As Ellen says…write any time. And I say…..do it now or you just might forget. My very best to you both……..I would love to hear from you.

May you have peace and ease.

1 day ago · Bisphosphonates or Not? Both No Win in Bones, Joints & Muscles

@sunnyflower, My goodness, what a wealth of information you now have on this topic of bones. As you read through these posts there are a couple of things that might help you to put the responses in some kind of order. Probably most important to me now is how long I would have to wait before I can say no to the next dosage of the medication. I am one of those that cannot handle bisphosphonates. I opted for the monthly dosage and regretted it when I had some pretty bad side effects that hung around for a month. That also meant I would not risk medications with long half-lives.

That restriction limited my choices to either Tymlos or Forteo. Next month I will have completed 18 months of Tymlos without any side effects. Essentially, Tymlos and Forteo build bone and the bisphosphonates prevent bone from being lost. The new Evenity may be able to do both. The next thing that might be helpful would do is take a look at the options given your age, activity level, medical issues, and medication profile. This is where your endocrinologist's information and experience will be very helpful

Sharing your decision-making process with loved ones and others can also be very helpful and supportive. As your own advocate, you will make an informed decision.

May you have peace and ease.

Mon, Aug 31 11:29pm · Member Neuropathy Journey Stories: What's Yours? in Neuropathy

Good evening @kyc117, thank you for posting about your medical conditions and upcoming tests. I am glad that you already got the punch biopsy. That can be a decisive indicator of if and how much your nerves have been disappearing or dying in every cell. Then you can trace their path. Stay with the folks here on Connect. There isn't much that these members haven't experienced. And better yet, they are willing to share and help others.

The major hurdle is that there is no cure for neuropathy and any of its types and causes. We must fight hard to accept the reality and support each other. We are not medically trained, just experienced and ready to help. Everyone is unique…..as you will find out. Good luck with your test…..if you feel comfortable, please share your results.

May you be safe, protected and free.

3 days ago · How about a laugh, (hopefully) in Just Want to Talk

@imallears, Lovely and compassionate observation.

3 days ago · 2 year anniversary of TKR in Joint Replacements

Good morning @ellerbracke, Happy Birthday to your "new" knee that pretty much does what you need it to do with a few memory issues. I remember the day I got up and walked into the bathroom to get a shower. It was the first day that I had no reminders and felt like it was my own knee. Halleluiah!

Like you, my other knee would have to have a much louder voice. I have a torn meniscus that has never bothered me until……….. I turned it the wrong way in yoga class. My MFR therapist worked on it and even came to my house on Sunday for treatment. She saved the day and everything is back in order. I have just learned to be more gentle at 78. As long as I can get outside and walk a couple of miles every other day…I am fine.

Let me know if you come across some other protective options. And I will keep a lookout also.

May you have happiness and the causes of happiness.

6 days ago · Myofascial Release Therapy (MFR) for treating compression and pain in Neuropathy

@lioness and everyone interested in this discussion: The other issue is simply this……MFR…Myofascial Release Therapy. The word massage is not used. And I am happy to report that in 3 years I have not had a massage on Thursdays, I have had a medical treatment.
If enough of us use this more targeted and authenticated terminology…..just might help.

Anyone else wants to weigh in on this subject? I realize I kind of jumped in the middle of the discussion. It just happens to be one that I know something about. And that can be rare in this group.

May you be content and at ease.

6 days ago · Myofascial Release Therapy (MFR) for treating compression and pain in Neuropathy

@jennniferhunter, Well now….that is a great idea. Enroll as a couple and learn at-home MFR techniques. Thanks, Jennifer.
And for all of you who run into insurance issues………I was told that insurance companies will honor Occupational Therapist treatment. It seems like sometimes it is more about the PT/OT differences and not the MFR. May be worth exploring.
Creative minds take on challenges so easily.

May you be free of suffering and the causes of suffering.

Fri, Sep 11 5:28pm · Shoulder pain 5 years after replacement in Joint Replacements

Welcome, welcome to Connect. You may already know that Connect is quite a large online community of patients, former patients, caregivers, and providers. With more than 60 groups and lots of discussions, I am sure we can find some folks to share their stories and patient journeys. It just so happens that your first post landed in the middle of some rather outdated posts. So….I am going to ask @johnbishop to move your post to a more current discussion of shoulder issues.

Once that has been done, I will be back and we can sit down for a chat and find out what is going on with your shoulder. Either fortunately or unfortunately, I have had four shoulder surgeries including a reverse total replacement. I am thrilled at the result even though the outcome did not completely fix my shoulder like it was when I was playing softball and could throw from catcher to second base. Oh….those were the days. I will see you again soon.
May you be free of suffering and the causes of suffering.