Anyone with any helpful information? I could sure use a boost.

I don’t have good information for you, but I appreciate your asking the question.

I’m looking forward to the answers you get, and offering prayers for you and your family.

Does Michael J Fox have an extensive set of resources? He has been fighting the disease for some time.

I don’t know how to give support other than educating yourself as much as possible to understand what your family member will experience. Other than mobility, it also affects swallowing, and also causes hallucinations, among other symptoms. Prayers sent.

Many local hospitals have support groups for family members. Any neurologist should know what is available. Psychiatric symptoms are present as well and need to be treated. The course of the disease is variable. Michael J.Fox was diagnosed a long tiem ago.

Been through this twice with two brother-in-laws….horrible disease and the symptoms vary widely from person to person. Educate yourself as much as possible and understand it may progress over 10 years or more as one on my BIL or may progress rapidly as was the case for my other BIL. You can support them by listening, they likely will be scared of how it will affect their life and how quickly or slowly….give them the opportunity to express their concerns and you’ll have to accept the reality that there is nothing you can do to change it. It’s very frustrating. Also know that the meds used to treat their symptoms react differently in each individual. Med adjustments take weeks to figure out if they’re working as desired and become a constant source of frustration. I wish you luck, it’s going to be a difficult road

grandmother passed from it, but I don't recall much about it,

mother currently has it, as does her brother,

my uncle has it worse,, or so says my mother,

parkinsons affects people differently,

mom for example, has trouble accepting what people, as in us and doctors, say about the desease,

common sympton is hot and cold flashes, but instead of coping, she has to change the thermostat up or down,
many times a day

she is also struggling with some cognitive issues, she was an Admin/secretary for some higher ups in a few military installations, so she is used to order and was computer savvy, but not so much now,
she still has a file for everything, and some are a bit more than ever needed, but she struggles with a computer,
granted at 82. you may think that is normal, but she was a pro at it a few years ago


one thing too, she is one that expect a Doc to say you have this, here is a pill, take it and you will be fine,

however most if not all of her Doc's have said for a 82 yr old woman, with parkinson's, and
Arthritis, you are in very good shape,

she refuses to believe any of them

To start try. https://www.parkinson.org
We have a church that holds weekly or monthly meetings. See if one available near you.
My friend she has Parkinson's.

Thanks guys. I certainly intend to check all the resources.
We’ve been waiting for this since May - took us that long to get in to see the neurologist and officially have it diagnosed.
I’m just trying to learn more about personal experiences, because it seems to be fairly slow moving (knock on wood) in our case and yes, I’m just wondering what others have experienced as time passes.
Thank you again.

I lived this for 20 years with my dad. One thing to note is that Parkinsons is kind of a big umbrella descriptor. You have everything like the Michael J Fox early onset to late onset. Some have mild symptoms for many years while others have symptoms ramp up quickly.
My dad's was fairly slowly progressing. Controlled with carba dopa leba dopa (sp) for many years.
One thing my dad did find helpful for several years was the Rock Steady Boxing program. Really good guy in Raleigh that helped him for years. God bless you Remy.
Get and work with a good neurologist and stay ahead of the curve with meds.

Yes! This was the drug he was prescribed with. I am moving them south in the next few days for winter, and I will try to find someone who can work with him on exercise.

This is a horrible disease. My Step Sisters Husband has this and one aspect is it really effects the frontal lobes so impulse control slowly erodes. As a result an investment fund that was once in the millions is now gone because he could not say no to any schemer who managed to find him. It also results in a horrible anger fits. She is at the point where she had to separate from the father of her children both financially and physically because she didn't feel safe.

Well, that’s certainly not what I wanted to hear, but definitely something I needed to know.
My heart goes out to your sister and her family.

quote:

Originally posted by irreverent:
Yes! This was the drug he was prescribed with. I am moving them south in the next few days for winter, and I will try to find someone who can work with him on exercise.

Posting to reinforce my recommendation for the Rock Steady Boxing as part of the exercise routine. Don't let the "boxing" name discourage participation. They just use a lot of the exercises that they use in boxing training. It's a lot of hand/eye coordination stuff. There are studies showing that it has a very positive impact with Parkinsons patients. It helped my dad a lot both physically and mentally.

My wife was diagnosed in April 2023, but had shown signs for at least two years prior.

After the initial fear, anger, and feeling lost, as there is not a whole lot of great information that a newly diagnosed individual can understand or have confidence in when reading.

We wanted to make a contribution and initially joined the MJ Fox PPMI study and became a study subject. That required us to drive about 5 hours to Atlanta, spend the night and was just too big a burden on both of us. We dropped out of that study but still participate with the online questionnaires that are emailed about once a month or so.

The best thing we did was get a Movement Specialist Neurologist on board. We had to wait 11 months for the initial appointment. However, the wait was worth it, even though we felt lost for those 11 months. The MJ Fox participation and videos are very good information, videos especially, as there are typically one or two participants that are PD patients, most long term.

We see this doc once a year, and her assistant once a year. This facility also promoted the Rock Steady Boxing, but there were no offers of this in our area.

My wife joined a Gentle Pilates class twice a week, which has helped her with the stiffness that is part of PD, by strengthening her core. We also walk at least a mile a day and she tacks on extra walks when weather permits.

Her current symptoms are slowed gait (but better since the Pilates class), a slight to obvious tremor in her right hand, but not constant. Some days the symptoms are more obvious than others. To this point she has elected to not take medication, believing that the longer we are able to wait, the more effective long term the medication will be. The more levodopa et al that you take results in larger doses being required as time passes in order to achieve the same results.

There are a lot of irons in the fire on new treatments and many studies trying to find an actual cure. We are doing our best to not let this define our lives, but certainly there are limitations we have that were not a consideration before. Mainly not doing anything stupid that could result in falling. Fall injuries are one of the top concerns with PD.

Are we fearful moving forward, of course we are, but not so much as when initially diagnosed. She is fully functional as before, still intent on taking care of both of us, and our home, same as needed prior to being diagnosed.

I don't know how nearby they are but contact them on a regular basis. If possible, visit them in person, take them out for a meal. You can help the spouse too. Do some house cleaning, take them to their Doctor appointments.

The human interaction is important, not just the medications.

^^^I’m actually with them almost daily in spring/summer/fall as I don’t live very far from them at all, but in the winter they head south where it’s warm and there’s less risk of falling- and then I cannot be as close. We talk daily if not twice a day, regardless.
Cameras are everywhere and we are looking into indoor cameras that show stick figures now so that they can still keep their privacy, but I don’t have to worry about somebody being down.
Thank you for the information about the rock steady boxing. I will definitely look into that and also the neurology specialist for movement. I really appreciate the insights, especially from those who are currently living with or have lived with this. We were relatively confident that was what it was, but until we had the diagnosis from the neurologist, there wasn’t really much we could do. I will let them know about the increasing dosage overtime to mitigate effects. I’m going to throw this out there though- Does anyone take lion’s mane just for luck, if nothing else? I read a lot about its neurological benefits, and I don’t know if it’s all hype or not.
I can’t tell you how much I appreciate your insights and support.

We have a local fitness center for 50+ folks. They offer these classes:

https://rocksteadyboxing.org/

It's pretty popular. Might be something to check out?

eta: Sorry. Just noticed I was redundant.

Another aspect of a Movement Specialist Neurologist is that with their specialization, they will likely be more aware of new medications or more likely, combinations of existing medications that may be more effective than what a standard Neurologist might.

At least that was our experience. Local Neurologist made the initial diagnosis, we asked for a reference to the specialist and she told us, "Well they are just going to tell you the same thing I did." Not true. Get a Movement specialist involved.