Parkinson's: What tips do you have for caregivers?

I am fortunate in so many, many ways. We moved to Germany wgen we retired
in 2010. Our son married a German girl and they live here with their 3
kids they had 2 kids ( 2 and 4) and we wanted then to know us more than 2
weeks twice a year so we moved here, and 2 years later they had a 3rd.
When the oldest started school, they moved to a different neighborhood, and
we followed brcause we were picking them up from school and day care every
day. I just picked a dr that was closest to us ( 2 blocks from our
flat)and both drs. In the practice are fabulous. When I was bedridden for
over a year, they made home visits. As I continued to get worse they
followed standard protocol, testing me for things that make you tired. They
found some mild cases of everything that old folks have, and treated me
for them ,but I kept getting worse, but still the only
symptom I had was the fatigue. I was done with the whole thing and ready
to 'exit stage left' when they persuaded me to try one more time. I almost
declined, but I figured I had nothing to lose. About a year later, I saw an
article about this third hospital that had finally diagnosed me. US News
and World Report does a survey of hospitals throughout the world. This 3rd
hospital ranked 7th in the world, and the neurology dept ranked 4th -- the
report said they were equivalent to the Mayo Clinic. 😉 AND, as hard as
this is to believe, THE FOOD WAS GOOD! I don't mean 'good' as in it didn't
make me gag, but 'good' as in " if this were a restaurant, I would bring
friends here for dinner"

When I was discharged,, my Hausarzt (Primary Care dr) referred ne to a
friend who was a neurologist. Not only is she splendid and everything any
one could possibly want in my situation, but she was also on the medical
board that was ecaluating a new treatment for advanced stage pd. Instead of
pills , the Ldopa is delivered subcutaneously via a pump. This is bettef
than the pills because:(1.) Any med taken orally has to pay a price to
the digestive system and you have to take a higher dose so you don't get
as much bang for the buck as you do if it goes in via the circulatory
system, which is how L-dopa is normally distributed throughout your body.
And (2) the pump keeps the level of l-dopa constant, whereas with the pills
the level of l- dopa goes up and down: you take a pill, it has to wend its
way throughout the digestive system, and so delivers l-dopa in a cyclical
way , gradually going up, peaking, and gradually going down. For me, I
wouldn't feel any b
etter until about an hour after taking a pill. Then it would peak,, and
start being less effective and then drop me off into OFF-land, , where I
was in absolute agony but couldn't take my next pill for at least an hour,
or sometimes two.

The other thing that happens is that as the disease progresses, l'dopa
becones less and less effective AND you must take increasingly more and
more. Thus means that the probability of side effects increases, and
eventually you reach a point where you have to weigh which is worse -
living with PD WITHOUT l- dopa or taking l- dopa and living with the side
effects of such high doses of l- dopa.

By getting more bang for the buck offered by pump delivery, the liwer doses
of l-dopa required for the pump means that the decision point is pushed
further out into the future, and if there is any mercy within the Universe,
a patient's comorbidities will snatch him away before he has to choose.

And it turns out that the pump was approved about a month after my
diagnosis and l ended up being the 2nd person in the EU to get the pump (
due, I'm sure, in no small part, to the fact that my neurologist was in the
board.). So, I got not onky one of the first pumos, but also a neurologist
who knows the pump far better than most. My biggest problem with the pump
is periodically I do someyhing stupid like forget to turn my pump back on
after I change the battery, and almost llike clockwork,2 hours later I am
shiverying and miserable.

Another reason I am lucky is that my health insurance in Germany pays 100%
of all my meds( and I still take l-dopa pills because I am Advanced stage
PD and the physical limitations of the pump can't accomodate the volume of
pump meds i need). And the pump meds alone cost €6, 000 a month.

The FDA pump approved the pu.p sydtem/med for use in thr US in October
2024. The onky case I am aware of ( through the Mayo PD Support group) was
a woman who said she has asked her doctor and he told her that ot woild
cost $10,000. I don't know
If that meant the pump itself or just the med.
I'm not sure how the pricing and insurance payments would cover 100% on the
US. ... I don't know whether the VA
would be a source where you might see if your husband could be treated with
the pump. It's still in the early stages here and the doctors and paturnts
are all learning together hiw to make optimal use of it. The compny that
makes it is Abbvie but if you contact them directly , they will tell you
to go through your doctor. If you go to their website there is a place
that explains how ABBvie may be able to help a bit with expenses. I Also
have had an excellent experience with their customer support. I mainly have
had some general questions that they have answered and one time my pump was
making unusual sounds so they delivered a replacement the next day . I
have participated in a meeting where ABBvie reps, and programmers and
support personnel met with the doctors in the hospital where I got my pump,
and other patients to get info on their experiences and suggestions. It
seems to be a well- run company.

I don't kniw if this is something you might want to explore fore your
husband ir not but i'll be happy to answer any questions you have.
Stay sane and have a lively day!

@vette98 This is what the Mayo Clinic says about Parkinson’s Disease: https://www.mayoclinic.org/diseases-conditions/parkinsons-disease/symptoms-causes/syc-20376055 The Mayo Clinic doesn’t specify stages in Parkinson’s disease mainly because so many patients are so very different. Especially when you compare young-adult onset with those who demonstrate symptoms late in life.
I would suggest that you look up The Parkinson’s Foundation (organization, association.) to get more information.
The stages of Parkinson's disease progress differently for each person. Additionally, patients may have good days and bad days with symptoms resembling different stages. It often takes 10 or 15 years for a patient to progress to stage four, however many do not progress beyond stage three.
I hope this will help.

In CT, there is a program to help people with home health aids based on income. Even if a person is not at lowest income, they can get help at a reduced rate. What I hear from you is that you need another person to help with your husband. If he needs help with bathing, dressing etc, he should qualify for medicare provided assistance. If you do not live in USA, things would be different. I suggest you let his docs know how difficult the situation is for you, but bottom line is get someone in to help relieve you.