Anonymous
05/28/2024 15:43
Subject: Early Parkinson’s - what’s it like?
head tremors?
Anonymous
05/28/2024 15:43
Subject: Early Parkinson’s - what’s it like?
Anonymous wrote:It could be something other than Parkinson's, OP. The anger issues and cognitive decline aren't all that frequent for early P.
+1
There are a lot of conditions other than Parkinson's with these symptoms, so it's important to see all the specialists and run all the tests to diagnose or rule out conditions before you start treatment.
Anonymous
05/28/2024 15:26
Subject: Early Parkinson’s - what’s it like?
It could be something other than Parkinson's, OP. The anger issues and cognitive decline aren't all that frequent for early P.
Anonymous
05/28/2024 15:19
Subject: Early Parkinson’s - what’s it like?
My dad was diagnosed with Parkinson's at 80, although he had exhibited symptoms for several years prior. He gets very lightheaded on stairs. Passing out. Several TIAs without brain injury. He has hand tremors, leaning forward when walking (he uses a cane).
Get DH to occupational therapy.Meds to mask symptoms.
Get DH to occupational therapy.Meds to mask symptoms.
Anonymous
05/17/2024 13:27
Subject: Early Parkinson’s - what’s it like?
Op, I'm sorry, this sounds like such a difficult situation. I'm going to try to help best I can.
My family's situation is different because my father was not diagnosed until he was 62 and of course us kids were adults. He lived until passing away at age 80 recently, so he lived a long time with it. There are different expressions of Parkinson's symptoms, for example my dad had very little tremors or shaking. I think pretty much the whole time he had it he was on carbodopa- levodopa. I think now there's a pump that can be used? He was not a candidate for this at the end though.
One thing I would suggest to consider, that if he is ultimately diagnosed with Parkinson's and can start cleaning disability, perhaps you all can move back to where your family is? If you could perhaps get a one story house there and do some minor conversions like grab bars in the bathrooms and ramp outside. I think it's time goes on it would be really helpful for you especially to have that family support. I live a mile from my parents and I gave a lot of support, they moved down south with me and bought a one-story house and that made all the difference for them.
Best wishes, I'd be happy to answer any more questions or at least try to based on my experience.
My family's situation is different because my father was not diagnosed until he was 62 and of course us kids were adults. He lived until passing away at age 80 recently, so he lived a long time with it. There are different expressions of Parkinson's symptoms, for example my dad had very little tremors or shaking. I think pretty much the whole time he had it he was on carbodopa- levodopa. I think now there's a pump that can be used? He was not a candidate for this at the end though.
One thing I would suggest to consider, that if he is ultimately diagnosed with Parkinson's and can start cleaning disability, perhaps you all can move back to where your family is? If you could perhaps get a one story house there and do some minor conversions like grab bars in the bathrooms and ramp outside. I think it's time goes on it would be really helpful for you especially to have that family support. I live a mile from my parents and I gave a lot of support, they moved down south with me and bought a one-story house and that made all the difference for them.
Best wishes, I'd be happy to answer any more questions or at least try to based on my experience.
Anonymous
05/16/2024 06:09
Subject: Early Parkinson’s - what’s it like?
My husband's uncle has parkinsons and now all the men eat a ton of peppers. https://www.mountsinai.org/about/newsroom/2013/healthday-eating-peppers-tied-to-lower-parkinsons-risk-study-finds
Anonymous
05/16/2024 06:00
Subject: Early Parkinson’s - what’s it like?
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
I have not considered that yet and my doctor has not brought it up.
There are many treatments and therapies that MAY be helpful - something new is announced nearly every day. But much less are shown to work.
WRT to a fecal transplant, I'll wait until my doctor suggests it and/or there's more evidence that it could work for my specific condition. Especially since I'm sure getting one is expensive and not covered by insurance unless you have C.Diff.
Anonymous
05/15/2024 22:31
Subject: Early Parkinson’s - what’s it like?
Dysautonomia is pretty common. Constipation can be a big issue. Many times eye doctors notice patients aren't blinking as would be expected which can point to PD. Tremors, having trouble finding words, balance issues, stiffness, a hunched back... All can be related to Parkinson's.
As others noted, the medications can often be very helpful in the earlier stages of the disease. However, they can have some difficult side-effects for some people.
As others noted, the medications can often be very helpful in the earlier stages of the disease. However, they can have some difficult side-effects for some people.
Anonymous
05/15/2024 21:58
Subject: Early Parkinson’s - what’s it like?
My family members had bizarre episodes where they would pass out starting about a decade before being diagnosed with Parkinson's. In one my grandmother broke her hip. In another my mother crashed the riding lawn mower. The doctors later linked those episodes to early Parkinson's.
Anonymous
05/15/2024 21:17
Subject: Early Parkinson’s - what’s it like?
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
Anonymous
05/15/2024 14:57
Subject: Early Parkinson’s - what’s it like?
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.
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.
Anonymous
05/15/2024 14:44
Subject: Early Parkinson’s - what’s it like?
My father also has Parkinson's. He was initially diagnosed around 60 and is now in his mid-70s and still doing relatively well. Early symptoms were stiffness in his movements, less pronounced facial expressions, balance problems, and just an inability to get his body to do certain things. Loss of smell is a common symptom, as are "restless legs" and sleep issues.
PP is correct that meds don't treat, but just mask symptoms. OP, if he isn't already doing so, encourage your DH to exercise daily. It really helps mitigate the symptoms and has made a profound difference for my dad.
PP is correct that meds don't treat, but just mask symptoms. OP, if he isn't already doing so, encourage your DH to exercise daily. It really helps mitigate the symptoms and has made a profound difference for my dad.
Anonymous
05/15/2024 12:14
Subject: Early Parkinson’s - what’s it like?
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.
oh sorry I just saw you've already had doctors appointments about this
how old is he?
my dad wasn't angry at all in the early stages. he had a slight hand tremor, which is what we noticed first. And slight face masking. also I think his driving ability was affected.
make an appointment with a good trusts and estates attorney if you don't already have one. You need HIPPA release, HCPOA, financial power of attorney at a minimum. Also a good idea to get a will in place if you haven't already.
Anonymous
05/15/2024 12:12
Subject: Early Parkinson’s - what’s it like?
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.
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.
Anonymous
05/15/2024 11:59
Subject: Early Parkinson’s - what’s it like?
Looking for advice. I suspect DH has early Parkinson’s. I’m pushing the medical appointments. Not sure if it’s denial, but he’s not aware/admitting that anything is wrong. I’m noticing falls (a loss of balance), stuttering and difficulty finding words, quick to anger, walking with a limp, cognitive decline. It’s already impacting his work and home life. Initial neurology assessments indicate there are concerns. We are now referred to additional specialists and testing, but appointments are several weeks out.
What can I expect as we explore and reach diagnosis (and hopefully medication)? Some days are better than others. How did you keep it together? I find some days I have more patience and understanding, other days Im utterly overwhelmed. We also have young children, 3 under 8yo. Most or all domestic responsibilities are on me. Our family is aware, but not local. What was your experience? Help!
What can I expect as we explore and reach diagnosis (and hopefully medication)? Some days are better than others. How did you keep it together? I find some days I have more patience and understanding, other days Im utterly overwhelmed. We also have young children, 3 under 8yo. Most or all domestic responsibilities are on me. Our family is aware, but not local. What was your experience? Help!