Parkinson’s

I have a sibling with Parkinson’s who I will most likely be the caregiver as her disease progresses. She is divorced and has no children and lives in my city. She has a lot of other chronic diseases and is overall in poor health. She has terrible earring habits including drinking 5-7 regular cokes a day. She eats very little food as she says she is not hungry. I think some of her issues could be lessened if she ate better and got more nutrients.
If anyone is familiar with Parkinson’s I’d love some places to research diet as it relates to having a better quality of living. Also what support can I give her.

Our local Michael J Fox association is pretty good. They use to run swim and exercise classes at the Y. People could extend the exercise program to a support group, lunch. There is another national organization, but I have less familiarity with them.

Our local hospital also had a Parkinson’s caregivers group. There could be 25 people there. They would discuss MDs, meds, diets, and how to care for oneself. The group had well-educated people who were super with newcomers.

My best

No advice but just wanted to say my heart goes out to you. My dad’s friend just passed from Parkinson and she said the Michael J. Fox foundation had good resources.

Agree to the Michael J. Fox Foundation. My dad had Parkinson’s and we both actually participated in a research project of the foundation to see about Parkinson’s and heredity. While dad died last year, I still receive their emails.

My father in law was diagnosed with Parkinson’s many years ago, and he managed it well with (lots of) medication for years. Until recent years, he exercised religiously - his neurologist recommended specific exercises. He didn’t follow any particular diet, but he has always been in decent shape. Now at 92, his legs no longer cooperate, no matter how much he tries to will them to. Speech is difficult, and swallowing if getting harder & harder.

It’s a very individual disease. We have known others with Parkinson’s who have had very different journeys. My dad’s friend had Parkinson’s with dementia. Another man we know was very active, but his Parkinson’s progressed extremely quickly and he passed away from complications much sooner than anyone expected he would. My FIL went to Parkinson’s support groups, where patients and their families learned ways to manage their disease and traded tips about living with it (and living with those with it). Even the very small rural community where my in laws spent their summers had a support group. You may find it helpful, with our without your sister.

My uncle has Parkinson’s. I can’t remember what it is exactly called but he had the surgery to implant a deep brain stimulator. He had significant benefit from that.

He had a hospitalization this spring for some unrelated infection. The hospital and rehab facility did a poor job of managing his medications which prolonged his stays. My aunt was distraught because of coronavirus she couldn’t be there with him and advocating for him from the bedside.

edited to fix a typo

My dad passed from Parkinson’s. About a year before his passing, a family member had been told that pot had helped their family members Parkinson’s symptoms. My brother, in CA where it was legal, bought pot brownies and took them to a neighboring state to my parents. My mom then would crumble a very small amount on to dad’s ice cream for dessert at dinner. Mom or dad had never done any drugs in their lives, but this helped calm him in the evening…he had dementia as well. Dad never knew that he was having pot brownies, but would often ask mom can she put the brownie sprinkles on his ice cream please?

After dad passed, mom still had some brownies in her freezer. She gifted them to a friend in their senior community whose spouse could use them.

@mom60, I was never a pot smoker but of course always heard that it made people hungry so could help with her appetite. Maybe ask her Dr if that is an option.

My bff’s husband was diagnosed about a year ago so I’m following this with interest. He’s exercising and eating pretty well so can’t speak to diet. Sadly, this sped up their time to downsize and move across the state.

@mom60, I hope you get some helpful ideas here.

Here’s a resource on diet
https://www.parkinson.org/Living-with-Parkinsons/Managing-Parkinsons/Diet-and-Nutrition

There are clinical trials around the country. Depending on the specifics, can help with getting overall assessment or finding support groups.

https://clinicaltrials.gov/ct2/results?recrs=ab&cond=Parkinson&term=&cntry=US&state=&city=&dist=

Some of the academic research centers may have some diet and lifestlye, exercise Groups for Parkinson’s.

https://www.hopkinsmedicine.org/health/conditions-and-diseases/parkinsons-disease/what-to-look-for-in-a-parkinsons-care-team

@mom60 You mentioned she had other health issues; might any of those cause a lack of appetite, or does she just prefer junk? If she is agreeable, maybe a nutritionist could help her with a plan. You mentioned she is on her own; maybe she doesn’t want to cook for one. If you took a meal to her, would she eat it?

A small percentage of Parkinson’s patients develop Lewy Body Dementia; other people develop LBD and then get Parkinsonian symptoms. My mother did it that way. In hindsight, she had symptoms for several years before it went truly over the top and was undeniable, but even then, it was erratic and difficult to figure out. Had a fellow CCer who is a psychologist not put it together, i am not sure how long it would have taken us to figure it out as many of the symptoms were not things I would have mentioned to the doctors…

LBD is characterized by hallucinations, including auditory, as well as erratic symptomes-fine one day, crazy behavior the next. Crazy may not be PC, but crazy is how life felt. Literally, one meal she could feed herself, the next she could not put a spoon in her mouth, and then would be fine the next time. It was bizarre.

She heard music when none was playing, always the same songs, and this was way before she had any signs of dementia behavior. Had we figured that out sooner, we might have made the journey easier.

So, keep an eye out, if you become caregiver, for widely varied symtoms. If the person has some weird thing one day and not the next, it’s easy to just write it off as a one off, but it could be early LBD. Growing anxiety is also a symptom.

Hopefully this does not happen to your sister, but it’s just good to keep an eye out.

Thank you! I’m going to begin to do some research.
@snowball she had gastric bypass a number of years ago and that does have an effect on how much she can eat. In my opinion if your stomach is full of sugary soda it doesn’t help. She has had autoimmune disease diagnosis since her 30’s and is on immune suppression drugs. She also has had Melanoma. Lots of joint degeneration from psoriatic arthritis. She just had knee replacement a few weeks ago. She is 68 and got the Parkinson’s diagnosis about 3 years ago but in hindsight she has had symptoms for years. She has never been one to keep up on health trends or much of a believer in diet as having any part in how your body or mind feels.
She is having some problems with word recall and doing simple math since the surgery. She also expressed to my sibling that she feels less comfortable driving do to less spacial awareness. I don’t know if it’s the Parkinson’s or a side effect of all the medications and pain medicine she is on. My sister who is staying with her post surgery said sometimes she is almost normal conversation wise and other times she can’t process information.
I am more willing to bring up my observations and concerns whereas my sister who is staying with her is more cautious.
She is retired with a generous pension and has plenty of money plus long term care insurance. Her house is paid for and remodeled in a way that as she gets less mobile she can stay in her home.
@somemom she is very worried about losing her mental abilities.

Some pt for her joints and a plan for nutrition. I think brain and heart health go together.
There are programs i found on pbs that have stretching and strength activities for people with health issues and also websites or youtube channels- “ Sit and Be Fit”

“Aging Backwards” - essentrics by Miranda Esmond White

My dad was diagnosed with Parkinson’s about 10 years ago. He was managing pretty well with (ever increasing doses) of Sinemet and PT a couple times a week. The Parkinson’s diagnoses allowed for much more (no limit?) of PT on Medicare, as long as he kept getting referrals, which his PCP and Neurologist were happy to provide. It definitely helped. He also went to the Parkinson’s Fight Club group with Gary Ingram once a week. Great exercise class.
He was pushed down by an automatic gate and broke his hip March 2019. I was there when the cardiologist came in to clear him for surgery. She looked straight at me and said that anesthesia often causes Parkinson’s to progress quicker.
Hip healed completely, but he could not get back to where he was pre surgery. He agreed to a very nice assisted living facility “temporarily” until he could get rid of his walker. He ended up liking the facility, which was great because the Parkinson’s was definitely progressing and he needed help. Anyway, his heart gave out in the ambulance after a fall in the bathroom in May.

My hart goes out with you. Especially you will be the caregiver, it will be very hard on you when time goes by in the future. I am sure at one point of time you will need helps.
Everyone is different, but mom who passed away in '14 had Parkinson’s for over 10 years. At first, she was able to handle herself by living alone. With the first fall in a parking lot, she started losing grips of her life, first, difficult to handle day to day, next, her judgement on her personal financials. We had to hire some one as a caregiver and I took over her personal financials as her designated power of attorney. The process took time, but it is necessary.

In her last two years, two caregivers are necessary to provide 24 hour service and that was very expensive.

If you are in the bay area, try The Parkinson’s Institue in Menlo Park, they have the most comprehansive treatment.

@artloversplus we are probably 4 hours south of Menlo Park. She is looking for a new neurologist who specializes in Parkinson’s. The person she was seeing closed the practice and hasn’t resurfaced at another group. The new person she is seeing she doesn’t love. She was on the wait list for another practice an hour from here but they just told her that Dr is retiring. She would consider seeing someone in southern Ca.
I need to sit down and have a good talk with her and develop a plan that works for both of us. Up until now she has totally handled things on her own and I hope she can continue to do so once she recovers from her surgery. I think it is better to have a clear plan going forward before things get worse.
From what she has told me I think her long term care policy is a good one. She feels she will have enough money to have people care for her in her home.
Looks like the Parkinson institute is no longer seeing patients as of August 1.

We are about an hour from Menlo Park, given the traffic. The Parkinson’s Institue is a VERY busy clinic, some times we have to wait hours for the Doctor. It was a full day event to visit. Fortunatly, it is once a month event and we have planned for it.

In the future, you might need a wheelchair van for transport as mom lost her ability to move around (after serveral falls).

And be VERY careful of choosing the Neurologist. The first DR of mom, for whatever the reason, feel mom was depressed and gave her a “stimulant” to boost. She took that new perscription and soon found that her cognative capability was totally lost. We call the emergency line and one of the doctor in the clinic immediately had us stopping using that drug.

We have since changed to TPI and it was too late, anyway.

@mom60 I do not have advice about nutrition, but I am familiar with Dance for PD – https://danceforparkinsons.org/ – We have people in our community who teach classes (which are currently all online). The classes were taught in the arts center where I work when gatherings could happen, now they are online, but the community connection between participants is strong. Your sister may find a community, and your family community and resources through a group like this in your area.

My dad has a Parkinson’s diagnosis, though they are not 100% sure, and he has found much relief visiting a chiropractor.

My thoughts and heart are with you and your sister.