Early Parkinson’s - what’s it like?

[Anonymous]

My dad's gait was off, he was doing the classic shuffling. His orthopedic surgeon was the one who recommended seeing a neurologist when he noted it during a follow up appt.

I'm glad he's going for further testing. As for ways to handle things ...support groups were key for my mom (he was diagnosed when I was 18). Therapy if you can manage it, there are online options too. People often think the stages of grief are just about death. They aren't. You're going to be angry at him sometimes even though the rational side of you knows it isn't his fault. You're going to be angry at friends who don't have these issues. Building yourself a support network is so so important and with people who can share in your experience is even more critical. My mom is still very close to the women in her support group, even though my dad passed 3 years ago.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I have young onset Parkinson's - first diagnosed in late 40s about 2 years ago.

There are no medications that slow the progression, but they can manage the symptoms considerably. Additionally, it's now believed that large amounts of exercise can slow the progression substantially.

Additionally, my understanding (and experience) is that the first years after diagnosis are generally much better than the years that preceded diagnosis, in terms of quality of life. So there are some positives ahead.

If things are are pointing towards Parkinson's, make sure that one of the evaluating neurologists is a movement disorder specialist - they specialize in Parkinson's and similar.

PP - thanks for sharing your story. I'd like to hear more (I'm not OP but very interested). Have you considered a fecal transplant? Has anyone suggested it to you? They're mentioned in the Netflix doc Hack Your Health: The Secrets of Your Gut. Seems like a low risk treatment that could help.

https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/fecal-transplant

A fecal transplant will not treat a neurologic disorder. Parkinson's disease is caused by the death of dopamine producing cells in the brain, not a C. Diff infection.

[Anonymous]

Daily exercise is essential, OP. What does your father do physically?

[Anonymous]

Anonymous wrote:
Daily exercise is essential, OP. What does your father do physically?

Please re-read. This is OP's young husband. The benefits of exercise are discussed in the thread.

[Anonymous]

If Parkinson's, please take a look at:

Rock Steady Boxing
https://www.rocksteadyboxing.org/rsb-explained

Parkinson's support groups (as mentioned before)

[Anonymous]

I’m very sorry to hear that your young husband is dealing with this. Please hear me out:

At any point recently has he been prescribed steroids? I’m asking because my mom was hospitalized for several months for pneumonia and respiratory infections that required her to take steroids.

Steroids triggered severe psychosis in my mom- a percentage of the population cannot metabolize the cortisol correctly- and within days of her first dose she became agitated, lost her temper frequently, gradually lost her ability to speak, was unable to remember her birthday, the correct year, didn’t even remember that I was married and had a daughter. She was unstable and could not walk, and at the worst of it she could only grunt to communicate!

I watched my previously sharp mother decline into an almost Alzheimer level of dementia in days.

I begged her doctor at Shady Grove to review her medication list for any medication that is a anticholinergenic- that caused confusion.

She was on three steroids - an inhaler, a nasal spray, and an intravenous steroid. The doctor was willing to give it a shot because it was such a sudden change in her mental status. Once the steroids were removed, she returned back to herself within two weeks. I have placed them on a list of medication she can no longer take.

Steroids are in many different forms of medicine. Nasal spray, creams, and ingested medications. I was very surprised by how prevalent they are.

Please review ALL MEDICATIONS that your husband is taking. Please read the fine print on them to determine what pathway they act on in the brain. Read up all the side effects. If anything shows “confusion” or “dizziness” that’s a good reason to keep digging.

I hope it’s something easy to solve like this and hopefully you will get an answer soon.
Good luck and God Bless.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I have young onset Parkinson's - first diagnosed in late 40s about 2 years ago.

There are no medications that slow the progression, but they can manage the symptoms considerably. Additionally, it's now believed that large amounts of exercise can slow the progression substantially.

Additionally, my understanding (and experience) is that the first years after diagnosis are generally much better than the years that preceded diagnosis, in terms of quality of life. So there are some positives ahead.

If things are are pointing towards Parkinson's, make sure that one of the evaluating neurologists is a movement disorder specialist - they specialize in Parkinson's and similar.

PP - thanks for sharing your story. I'd like to hear more (I'm not OP but very interested). Have you considered a fecal transplant? Has anyone suggested it to you? They're mentioned in the Netflix doc Hack Your Health: The Secrets of Your Gut. Seems like a low risk treatment that could help.

https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/fecal-transplant

A fecal transplant for Parkinson’s?!? wtf is this insane quackery? PP had c diff this would be an excellent suggestion. Otherwise hells no.

[Anonymous]

The boxing program is very good. I’d try to ensure some exercise and a healthy diet. Of course, follow up with the Doctors. It can vary but for my family member it has progressed slowly.

[Anonymous]

My mom was diagnosed at 70. She shuffles and her handwriting is poor. She is sometimes forgetful but I'm not sure that's related. It took a while to find the right balance of medication but once she did, her interactions with us have been pretty good. My dad reports that she's less "with it" in the evenings because she doesn't take meds then.

[Anonymous]

DBS if he qualifies

[Anonymous]

There’s some promising clinical trials and research about the positive benefits of using semaglutide for Parkinson’s. These GLP-1 agonists have shown to decrease inflammation while also having an effect in the brain, particularly with dopamine receptors.

https://pubmed.ncbi.nlm.nih.gov/30741689/

https://www.psychiatrist.com/news/brain-targeting-drug-similar-to-ozempic-shows-promise-in-parkinsons/

[Anonymous]

Anonymous wrote:There’s some promising clinical trials and research about the positive benefits of using semaglutide for Parkinson’s. These GLP-1 agonists have shown to decrease inflammation while also having an effect in the brain, particularly with dopamine receptors.

https://pubmed.ncbi.nlm.nih.gov/30741689/

https://www.psychiatrist.com/news/brain-targeting-drug-similar-to-ozempic-shows-promise-in-parkinsons/

PP with Parkinsons here. Thanks for the share (said seriously, not sarcastically).

One thing I do want to note is that there are a LOT of pharmaceuticals that show promise, and sound good through phase 2 of trials. It seems like there is a new one each week. But there is yet to be a drug that is shown via a phase 3 trial to modify the course of the disease. Everything that is out there simply manages symptoms.

So that's why someone with Parkinsons who has been around for a while may not get terribly excited about the news posted above. We wait until phase 3.

[Anonymous]

You need to go see a Neurology Doctor who is a movement disorder specialist to get diagnosed. This would get him the right treatment to help with symptoms. There are many things he could do to manage the disease, and he’s not alone. It’s more common than you think.
Try Rock Steady Boxing. Call Georgetown MedStar or INOV for an appointment.

[Anonymous]

Anonymous wrote:My dad has Parkinsons.

That could be Parkinsons, but could be something else.

Has he made or gone to the appointments yet?

Does he have enough life insurance? Disability insurance? Long term care?

If not, you might want to try to get those before having ANYTHING put in the medical records about these symptoms.

If it is Parkinsons, it is ok to delay diagnosis in the sense that it's not like there is a medicine he can take that will delay progression. Meds treat symptoms only.

X5000

If at all possible, please act now to get LTC insurance or some additional life insurance that covers expense of eventual long term care.
My dad was diagnosed at 59 and lived with Parkinson’s until age 76 (and it wasn’t even all that much of a noticeable thing to the “outside observer” until about age 74) But those last two years were essential for him to have some in-home care. He got long term care insurance at age 48 or 50, but once Parkinson’s is diagnosed it is almost impossible to get this.

So many advances are being made, but I encourage you to look at diet and do brain work therapies and speech therapy asap. Parkinson’s affects speech patterns and voice projection. The person often feels like they are shouting but you will only hear muffled rumblings so they have to train themselves to think about this differently in order to enunciate and be understood.
Also medical cannabis can seriously do wonders for calming tremor symptoms.

Prayers for you and your family OP. You can handle this and will come out stronger for it.