Did the Weighted Blanket Work for Me???

On February 19, 2019February 19, 2019 By skrischerIn Living Well, Parkinsons DiseaseLeave a comment

Last month, I wrote about weighted blankets for improving sleep. After using a weighted blanket for more than a month, I think it is actually helping me sleep. I am falling asleep faster, getting up fewer times at night, and usually going right back to sleep. I am even sleeping later in the morning, which is terrific. I think the daytime fatigue has even improved.

If you want to try a weighted blanket, I would suggest that you check out the reviews,

and get the best blanket that you can afford. I bought two different blankets and there is a very big difference between the two. The better blanket is on my bed. I keep the other in my family room to cuddle up in while reading or watching tv, and to use on those few nights (which are increasingly fewer) when I cannot get back to sleep in the middle of the night.

Don’t want to lay out the money? Pile a bunch of blankets on your bed to get some extra weight and see if it helps. Now, while it is still winter and cooler at night. When it is hot at night during the summer, this could be a problem for you. IF the extra weight helps, then consider getting a weighted blanket for summer, which may not be as hot for you. I don’t know about the rest of you, but I cannot sleep with just a sheet during the summer, no matter how warm it is. I still need the extra weight of a blanket or comforter. Cocooning really works, which is the theory behind the weighted blankets.

So how do you choose? Look at the ratings and comments on the blankets on Amazon or other websites. Here are a few of the higher rated blankets: Quility Premium Adult Weighted Blanket & Removable Cover (this is the one I like), YnM Weighted Blanket, ZonLi Weighted Blanket.

For information on how to buy a weighted blanket, go to my post from January 22, Weighing in on Weighted Blankets. Let me know if a weighted blanket works for you.

An interesting new tech device for Gait Freezing

I just saw this on another site:

Researchers in Scotland have developed a novel wearable electronic device worn around the waist, called ‘cueStim’, designed to prevent or relieve freezing of gait, commonly described by peoplewith Parkinson’s, as a feeling as if their feet are stuck or glued to the floor preventing them from moving forward. For more information click here.

Is There a Coming Pandemic of Parkinson’s?

On February 7, 2019 By skrischerIn Education & Advocacy, Parkinsons Disease, Research & Clinical StudiesLeave a comment

pan·dem·ic\/panˈdemik/ adjective: occurring over a wide geographic area and affecting an exceptionally high proportion of the population “The 1918 flu was pandemic and claimed millions of lives.” noun: an outbreak of a disease that occurs over a wide geographic area and affects an exceptionally high proportion of the population: “a pandemic outbreak of a disease”

The alarm that there could be a “pandemic” of PD was sounded last week in a report in the Journal of Parkinson’s Disease, “The Emerging Evidence of the Parkinson Pandemic” by E. Ray Dorsey, Todd Sherer, Michael S. Okun and Bastiaan R. Bloem. (Mr. Twitchy, always on the lookout for Parkinson’s news, ran across the study today and sent me several articles today based on this report.)

The authors* are all highly respected researchers in the Parkinson’s world. They have been following the growth of Parkinson’s Disease since 1990. From 1990 – 2014, the number of people with Parkinson’s Disease worldwide doubled to over 6 million. The authors predict that those numbers will double again to 12 million by 2040, They say that “The Parkinson pandemic is fueled by aging populations, increasing longevity, declining smoking rates, and the by-products of industrialization.”

Yes, the population is aging. Life expectancy has increased by 6 years in the last 2 decades and will most likely continue to increase, putting more people at risk for PD after age 65. The impact on our health system and support systems will be enormous as the number of people with advanced PD increases.

Declining smoking rates??? Many studies over the years have shown that smoking decreases the risk of PD by about 40%. As smoking rates decline, there could be an increase in PD. However, if you are not a smoker, please don’t consider starting just to reduce your PD risk.

The “by-products of industrialization” include pesticides, solvents and heavy metals. However, they emphasize that exposure to these agents is preventable in the workplace. The big question is, how many employers will take the necessary steps to protect their workers from being exposed. This is definitely a cause of PD that can be reduced.

But the news is by no means all doom and gloom. Quite to the contrary. According to two articles, one from Science Alert and another from Eureka Alert, researchers are getting closer to finding what actually causes Parkinson’s, and many new treatments for PD are being approved every year. We may not have a cure for a while, but we are getting closer to slowing down the progression of PD to make our lives much better.

Against that background, the Dr. Dorsey proposed that the Parkinson’s community form a “PACT” to Prevent, Advocate for, Care, and Treat the disease through understanding the root causes (environmental, genetic, and biological), expanding new care models that seek to bring expert care to all, and developing new highly effective therapies. They point out that, the most effective therapy we have today (levodopa) is now fifty years old. It is time for something new. Now.

Pandemics in the past, such as — polio, breast cancer and HIV are a fewe recent examples — have been reduced successfully and substantially because of activism coming from the community. We can both prevent potential the PD pandemic and help those who already have it by supporting research, participating in clinical trials for new treatments, and raising awareness about Parkinson’s. The key, the authors say, is that we all work together to accomplish this goal.

*E. Ray Dorsey, Department of Neurology and Center for Health+Technology, University of Rochester Medical Center, Rochester, NY, USA. Todd Sherer, Michael J. Fox Foundation for Parkinson’s Research, New York, NY, USA. Michael S. Okun, Fixel Center for Neurological Diseases, Program for Movement Disorders and Neurorestoration, Department of Neurology, University of Florida, Gainesville, FL, USA. Bastiaan R. Bloem, Radboud University Medical Center, Donders Institute for Brain, Cognition and Behavior, Department of Neurology, Nijmegen, The Netherlands.

The Flu

On January 27, 2019January 27, 2019 By skrischerIn Living Well, Parkinsons Disease, World Parkinson Congress 2019Leave a comment

I wasn’t supposed to get the flu. I got my flu shot in September and it has always worked for me in the past. I don’t know what happened. We went to Chicago last weekend for a wedding. It was cold. It was windy. It was snowing. I could not warm up all weekend. We came home Monday night to much warmer Los Angeles and two days later it hit me!

I woke up with a cough on Wednesday and thought it was just a cold. By Wednesday evening I could not move. Chills, fever, headache, all the usual symptoms. I think the last time I had the flu was 25 years ago. I got it first and because the incubation period can be as short as two days, the rest of my family and a houseguest fell like dominos within a week. One right after the other. There was no test for the flu and no Tamiflu to ease the symptoms. This time I went to the doctor and was tested for the flu. The next morning I got an email stating that my results were positive for Influenza A. I called my doctor, got Tamiflu, as did my husband as a preventative. No more domino effects. This was so easy. I think that it has definitely shortened the duration and lessened the severity of the flu for me. I might even get out of the house tomorrow after only 4 days.

So the big question is how this will play out with Parkinson’s. The good news is that the cough hasn’t been too bad, so I have not had to worry about decongestants that interfere with my PD meds. But I miss my exercise routine and I think it will be a while before my energy levels return to normal. At least I got out to walk the dog this morning. In the warm SoCal sunshine. Yay!

On a separate note: My abstract for the Poster Display at the World Parkinson’s Congress has been accepted. The topic is Living Well With Parkinson’s Disease. My abstract is titled “What are the most important factors for living well with Parkinson’s Disease? An informal survey from a women’s Parkinson’s FaceBook group”. More info to follow once I figure out what I am actually putting on the poster. #wpc2019 @WorldPDCongress

Weighing in on Weighted Blankets

On January 22, 2019 By skrischerIn Living Well, Parkinsons Disease2 Comments

Several months ago, my daughter suggested that I try a weighted blanket to help me sleep. At the time, I had never heard of weighted blankets. Today, they seem to be everywhere, claiming to cure all that ails us.

Weighted blankets were originally used as a calming mechanism for children with autism, ADHD and other sensory disorders. Anyone who has a newborn has seen the calming effect of a swaddle when putting the baby to sleep. “ThunderShirts” for pets (weighted vests) help keep them from going bonkers during thunderstorms and fireworks. We like to be cuddled, so what could be better for sleep than the cuddling effects of a weighted blanket. Even on the hottest nights, many of us still need the weight of a blanket on top to help us sleep.

Last year, the concept took off, with kickstarter campaigns and word of mouth on social media. These blankets are everywhere. So when at Bed Bath and Beyond last month, I saw a display of weighted blankets, I decided it was time to check them out. Armed with my 20% off coupon, I bought a Nap blanket made by Brookstone. I was not familiar with the other two blankets they had on display, so checked out reviews on my phone before deciding which one to buy.

One caveat, if you have not been lifting weights, ask someone to help you. These blankets are heavy, as advertised, ranging from 10lbs to 25 lbs. Most are filled with glass beads or pellets to make them heavier. It is recommended that you get a blanket no more than 10% of your bodyweight, so I bought a blanket based on weight, not size. Since we have a king sized bed, this blanket was not quite wide enought for both of us to use at the same time. It became clear that we needed a second blanket. One question I have is: do we want a blanket that is larger and 10% of our combined weight to share? I could not find the answer to that question. For more information on buying weighted blankets, check out this article from the Washington Post.

After a couple of nights with our new blanket, I noticed that I was definitely sleeping better, although not necessarily longer. I was falling asleep almost immediately and was not waking up as often during the night. I also seemed to be dreaming more, meaning that I was getting more good REM sleep.

Since we seemed to be fighting for the too small blanket, it was time to get a second one. So after much more research on the internet, I settled on a slightly larger, heavier BABO Weighted Blanket. I liked this one immediately.

The glass beads inside were small and distributed evenly, so it did not have the lumpy feeling of the Brookstone blanket. One side of the duvet cover is warmer for winter, the other side is made from bamboo, so it is supposed to be cooler for summer. This blanket is more expensive, but definitely seems worth it so far.

Remember how cozy it was as a kid to be covered by a pile of blankets? Think of the weighted blanket as the new version of this, with some added weight. Sounds good to me!

One is the Loneliest Number

On January 9, 2019January 9, 2019 By skrischerIn Living Well, Parkinsons DiseaseLeave a comment

One is the loneliest number
One is the loneliest number
One is the loneliest number that you’ll ever do

Three Dog Night

I read an article in The Week magazine yesterday titled An Epidemic of Loneliness. According to the authors, social science researchers define loneliness as “the emotional state created when people have fewer social contacts and meaningful relationships than they would like – relationships that make them feel known and understood.” They go on to say that up to 50% of Americans feel lonely. Isolation is on the rise for various reasons, and as you probably know, it can be very high among People with Parkinson’s (PwP’s). The feeling of isolation can be devastating in many ways.

Many PwP’s withdraw from social activities at some time. Often they withdraw when first diagnosed, because they do not want anyone to know that they have PD or they are afraid people will notice their symptoms. Later they withdraw because of mobility issues and worsening symptoms. The loneliness they experience may cause other problems. According to the authors of the article, loneliness triggers the release of stress hormones, particularly cortisol. Normally cortisol helps make people more alert. These same hormones can damage health over long periods of time, causing high blood pressure, a weakened immune system, depression and more. For a PwP, isolation can cause a downward spiral of poor health and worsened symptoms, making it increasingly difficult to get out and do anything.

A reader in Adelaide, Australia writes ” At the moment most of my continuing and nurturing social connections are not exclusively with PWP people. I suspect that might change over time as things change.” For now, he is incredibly involved, both with PwP’s and with the community at large. He sees those connections as essential for him to keep on going. “Membership of these groups provide a series of lifelines and vehicles for connection and care. I’ve started to see membership of those groups and the thought and action they sometimes require as contributing to an ‘ecology of hope in illness.’ “

I agree with him 100%. Being a part of a group is one of the best things you can do to reduce loneliness. Even if you cannot physically attend, with today’s technology, you can video chat with a group and still feel that you are a part of something. Maybe you chat on-line, or participate in a Facebook group where you have interaction with others. Any contact that you can make with others who understand how you are feeling can give you a much needed dopamine boost.

Recently I wrote about the “non-support group” that I started. The underlying factor that has made it successful is that the women who participate have found those necessary connections with others that give them hope. Sometimes just knowing that there is someone you can call, or email, when you are feeling lonely and isolated, is enough to give you hope. And that goes for any chronic illness.