New Post on the NWPF Site "What I Like About Parkinson's Disease"

Staying positive can be tough with Parkinson's Disease (See what I mean? that in itself is a negative statement.) No problem. I posted   a list of the things here I like about PD on the Northwest Parkinson's Disease Foundation Community blog. you are welcome to crib from it, if you are feeling negative. 

Reason #2 I like Parkinson's:
"Causes spontaneous combustion in most patients” is not a commonly cited problem. Way to go, Parkinson’s.

 

Parkinson's Is Not Witchcraft, Q & A With Uganda's Hannington Kabugo

  

                 Harrington Kabugo with Miriam "A patient who was treated like my mom she was 

              in her bedroom for 10 years not getting out I went and got her and brought her in my house"

 Hannington Kabugo, 36 became a Parkinson's advocate after his mother died with Parkinson's disease over a decade ago. A resident of Uganda, where he lives outside of the capital of Kampala he made it his mission to take on Parkinson's Disease after seeing how his mother was stigmatized when she developed PD. "Apart from PD advocacy that I do with a lot of passion and love in memory of my mom who suffered because she had Parkinson's, I am a food scientist and work as a health inspector in the capital city authority of Uganda as a food and beverage supervisor." As the lone PD advocate in a country with an estimated population of over 45 million, Hannington js  pioneering the struggle against PD in the developing World. This interview was conducted via the Messenger app, It has been lightly edited for clarity.

Q: How long have you been a Parkinson's advocate?

A: Since 2013 those are 8 years now.

Q: Are there reliable numbers documenting how many people with Parkinson's there are in Uganda? What is your best estimate of the size of the PD population there?

A: There no reliable numbers on the number of Parkinson's patients apparently because I am the only Parkinson's advocate so because I am just an individual it's really hard for me to get all the numbers because it needs funds I don't have. However through the organization I founded Parkinson's si buko Uganda   (Parkinson's Is Not Witchcraft Uganda)I have managed to locate 120 patients and these are the ones in our care and training. However we could have thousands because those numbers only come from two districts only out of the 135 districts that make up Uganda.

Q:  How is PD treated medically in Uganda? Are medications available, Carbidopa/levodopa?  Neurologists to provide expert care?

 

A: Because of ignorance about the disease and people thinking they are cursed or bewitched a lot of people will shy away with the disease becoming a serious problem to them. Medication is available but affordability is very very low we have only 6 neurologist and only one is a bit available in government hospitals. We have only one neurologist in Uganda to help our PD patients that's a very serious problem.

Q: What is the greatest area of challenge/need facing your organization?

 

A: The greatest area of need is medication, exercise kits and literature for our training sessions of patients medical workers and caregivers. One challenge is ignorance of the disease. My mom was called a witch and people thought she was cursed so it's the challenge we are dealing with to let people know that PD is a science, not witchcraft or a curse and that's where our main emphasis is to dispel that myth. We also have a problem of literature to help us teach the medical team at health centers and patients plus their caregivers another big challenge is medication is scarce because funds. Uganda being a third world country there is a lot of poverty so affordability of medication.

Q: So in addition to the common misconceptions about Parkinson's Disease, PD is seen by many in Uganda as punishment of the patient for practicing witchcraft. How do you deal with this perception?

A: I deal with this perception of PD in Uganda through training to let people know PD isn't witchcraft or a curse.

Q:  Is it only Parkinson's that is seen as punishment for witchcraft, or are other diseases also perceived that way?

A: No it's not only PD.  Diseases like epilepsy and HIV are seen that way too, among other diseases, so sensitization is very important.

Q: Are there other African countries where people regard Parkinson's as punishment?

A: Yes they are many other African countries with the same ideology about Parkinson's and it's the reason we founded Parkinson's Africa  together with Omotola Thomas, a lady with whom I work. She's an African Nigerian who stays in U.K.

Q: How can the world-wide Parkinson's community, world-wide, help?

A: Worldwide Parkinson's community can help with literature exercise lessons and medication for the many patients we have and even more we can get. We need to have lessons with the international doctors and neurologist on how best we can diagnose PD patients.

 

You can see an interview with Hannington Kabugo by Parkinson's Avengers describing what his family went through in Uganda when his mother developed Parkison's Disease here

 

 

The Parkinson's Games, Billed as the Parkinson's Olympics, Scheduled for the Netherlands 2022

In a development that came as a complete surprise to me, I got an email from a promoter of something called the Parkinson's Games, taking place in the Netherlands next year. It bills itself as the Olympics of Parkinson's Disease. That's the 50 yard festination  and the dyskinetic Decathalon? No, it will be made up  of events like Badminton, ping-pong, basketball (3x3), boxing, curling, darts, duathlon, golf, bocce, spinning, squash, tennis, football (soccer) and swimming, according to its Web Site. The event is set for August, 2022.

While the organizers seem to have plenty of ambition, they are a bit short on actual competitors. The promoter asked me if I could think of just one person who would consider taking part. They are definitely scouring the planet for participants, as shown by the fact that they went to the length of contacting me. 

I asked about the qualifications an athlete would be required to have and was told that a note from a "physio/ neuro/ nurse stating they can partake" is all that is required to qualify. 

It occurred to me this might be a scam, but the Web Site and other documentation seem real enough. I did a little digging and am satisfied this is a bona fide, grass roots Parkinson's production So I bring it to your attention, as a possible opportunity to participate in an awareness-raising activity regarding PD and exercise, and your best opportunity to medal in an international athletic competition. You can learn more and register for the event at the Web site. The games are afoot!  

 

Coping with PD, a Primer

This post began as an e-mail to a friend with a beloved relative who has Parkinson’s. It is by no means exhaustive, but I’ll bet if you follow these precepts, you will have a gentler descent into disability than if you ignore them. We are the first generation of PD patients who have most of these strategies available to lessen the force of the blows that PD directs at us, it would be a shame to ignore these tools, they are the advances in treatment all of us with Parkinson’s Disease wish for. 

This is a general guide to coping with PD, based on my 20 years of experience since diagnosis. While a diagnosis of Parkinson's Disease can seem like world-shattering bad news, it is actually a moment of empowerment for the person with PD. The problem is now out in the light of day where you can plainly see it and begin to cope. Here are some things to be aware of.

First: intervening earlier rather than later is a key to a slower decline., Studies have shown that the sooner you are on medication, the sooner you do voice therapy, the sooner you institute a regular exercise plan, the less drastic your descent toward disability will be. The lesson here is don't wallow in denial, the sooner you act, the better your long-term outcome.

Second: deal with depression. Talk it over with your neurologist if you are depressed.  (And why wouldn't you be? Your dopamine levels are unnaturally low. At any given time half the population with PD is depressed.) The doctor can prescribe many different medications that are safe and effective. I have taken Lexapro (escitalopram) for almost 20 years now with no detectable side effects. If you don't  deal with depression, your ability to do anything else will be compromised and much more difficult.

Third: Exercise, exercise, exercise. What kind of exercise? The usual advice here is "Anything that you will keep up." That's great, as far as it goes, but the most compelling work done on PD and exercise is by Dr. Jay Alberts, of the Cleveland clinic. His research was done on bicycles and PD. What Dr. Alberts discovered was riding a bike with a pedal cadence between 80-90 strokes per minute for 30 minutes a session three or four times a week reduced Motor symptoms of Parkinson's Disease by a third, and the benefits lasted for a month after the patient was no longer engaging in the exercise. That is a huge dividend, especially when you spread the results across several years! An indoor, stationary bike will work well for this, although I also ride outdoors.

The other form of exercise that is getting much notice is boxing. Boxing requires speed and balance, which are obvious targets for skill-sharpening in PD. I have done the Rock Steady Boxing With Parkinson’s classes and they were helpful on two levels, the exercise itself was beneficial, and second the group was a great source of fellowship and support. I no longer live near a Rock Steady program, but if I did, I would definitely participate. Other types of exercise that have been found to be beneficial for Parkinson's include Yoga and Tai Chi.

Fourth: Learn as much as you can about the disease. You will have better care if you are not on auto-pilot, doing whatever your doctor tells you. The more you understand about the disease, the better partner you can be to your care team. And besides, the brain is fascinating territory we are just now starting to penetrate. For example, it was only recently that the glial (white) brain cells, formerly thought of as mere packing materials for the gray cells, were found to play a much larger role in many previously unknown aspects of the brain's function, or in PD’’s case, brain dysfunction. That is half the brain that was written off by researchers, essentially terra incognita now waiting to be explored.

There are lots of good Web sites devoted to Parkinson's disease, all the large PD foundations have them. One that I especially like is The Davis Phinney Foundation, founded by Olympic cyclist Davis Phinney  They emphasize the enhancement of the average person with Parkinson's quality of life right now, which is a practical and necessary approach, given that the cure is still years if not decades away. Other organizations with good PD info include The American Parkinson’s Disease Association, The Parkinson's Foundation, and The Michael J. Fox Foundation for Parkinson’s Research.    


Fifth: Don't wait to join a support group. There is nothing that can take the place of the  accumulated wisdom of a group. The members will likely have encountered the same rough spots and challenges you will, and can be a rich source of information and solace. Online groups are fine, but they don't have the same gravitas as a live, in-person group.

I only check online groups occasionally, but they can be helpful resources, with the caveat that any Joe Blow can post some cockamamie notion to the group.

Sixth: Don’t prematurely give up the things you love to do because of Parkinson’s Disease. G.K. Chesterton, the British writer once pointed out “Anything worth doing is worth doing badly.” This would make a fitting  mantra for people with PD. I love music, especially the guitar. PD cruelly targeted my guitar playing, sabotaging my ability to play clean and on beat. It occurred to me that I could adapt my playing and simplify my challenges by moving over to playing the mandolin, which has easier stretches and fewer different pitches to tussle with. It did mean I had to learn a new tuning, but it’s good for your brain to practice novel skills. The result was to add years to my playing in a gigging bar band, and making a unique contribution to our overall sound.  Lately I have been exploring the electric guitar, which is in some ways easier to play than the acoustic.

Whew! That’s a pile of stuff to absorb. There are worse things out there than Parkinson’s Disease. As Bill Bell, co-founder of the Northwest Parkinson’s Disease Foundation says “It’s a good time to have PD.”

The Beatings Will Continue Until Morale Improves, Lurching to Safety With Parkinson's-Related Falls

 

I always knew this day would come. What I didn't know was how I was going to cope with it. "It" being the loss of balance and resulting falls that accompany this dispiriting symptom of PD. I experienced freezing episodes since the early days of my diagnosis, where my feet seemed to stick to the floor, resulting in a mincing, hurried stride that often precedes a fall. The falls are no laughing matter, they seem to happen without warning, and can result in injuries from minor scrapes and bruises to broken bones.

I got a respite from falling when I had Deep Brain Stimulation. The operation added years to my essentially trouble-free ability to walk, run, and do a Buck and Wing. But over the last year or so, I found myself lurching around the house and falling with increasing frequency and severity. What to do?  

 I tried some of the earlier tricks I had found to keep myself moving. These included walking backwards, walking with your feet on two different levels using a curb to provide the difference in foot elevation, and walking pigeon-toed. These efforts, which all worked fine in my esrlier stages of PD met with limited success at best. However, there is one method that frees me up dramatically. That was the Kick and Step (See diagram above to learn how to do it.) 

 The Kick and Step feels like magic. And it acts like magic, too. Suddenly you are moving smoothly across the room, your stride almost completely normal. Since I have been using this anti-freezing method of locomotion, I haven't experienced one disastrous fall. Prior to this, I was falling two or three times a day. This has been a significant morale boost. The beatings have stopped. For now, anyway.

Looking for Long-term PD Care in Anchorage Area

 

Hello friends, I got a query on the Alaska Parkinson's Facebook page from a woman who wanted to know of any quality long-term housing/care facilities in Anchorage that handle advanced PD patients. I don't remember the names of any such places, but I know there are some. Anybody got the name of such a place? Any help with this question would be appreciated.

Best,

Peter

Roll Call, A Parkinson's Poem

April was Parkinson’s Awareness month. It was also Poetry Month. Put them together, and you’ve got Parkinson’s Awareness Poetry Month. That calls for a PD poem. A poem that is full of false rhymes and staggering meter, the better to give it that old Parkinson’s feeling. Fortunately, I happen to have such a poem right here. (Note: I assume all of you out there suffering from this disease are sufficiently aware of it, so this poem is written to those who are still seemingly healthy.)

Post riginally written for The Northwest Parkinson's Foundation Community Blog.

Parkinson’s Roll Call

Hitler, Franco, Mao Tse Dung
all had, in common, Parkinson’s
Alan Alda, Muhammad Ali,
even George H. W. Bush had it (vascularly)
Ozzie Osbourne, of Black Sabbath,
and… Billy Graham? Go do THAT math!
Jesse Jackson, just so you knew,
and don’t forget Pope John Paul 2.
Vincent Price, most melancholy,
Surrealist artist, Salvador Dali,
Casey Kassem. Pierre Trudeau,
Charlie Rose, Janet Reno,
George Wallace and George Roy Hill
all had to swallow that bitter pill.
Johnny Cash and Robin Williams
both suffered forms of Parkinsonism
James Doohan, Star Trek’s engineer
And Nathan Heard, or so we hear.
Linda Ronstadt was not spared,
nor was the actor Deborah Kerr.
Nor Richard Thompson, of cartooning fame,
Nor German actor Ferdy Mayne
Nor Conductor of opera James Levine,
Nor Eugene McCarthy, that’s right,“Clean Gene”
Nor Walter Sisulu, freedom fighter-
Nor Jack Anderson, muckraking writer
Nor Author and artist Mervyn Peake,
Nor Glenn Tipton, of rock band Judas Priest
Nor Davis Phinney cyclist of renown,
Nor Billy Connolly, a Scottish clown,
Nor Maurice White, of Earth,Wind and Fire
Nor Roger Bannister, sub four-minute miler,
Neil Diamond’s got it, so they say,
Spiders & Snakes singer Lizzie Grey,
Martha Johnson, who sang with the Muffins,
actor Bob Hoskins, a lovable ruffian
Margaret Bourke-White, photographer sublime,
Actor and model Valerie Perrine,
Steve Ludzik of the NHL,
Brent Peterson, a hockey star as well,
Boxing hero Freddie Roach,
Billy Kennedy Texas A&M basketball coach.
Massa Salto pro wrestler from Japan,
Paul Sinha, British comedian
And who can forget Fox, Michael J?
The list goes on, but that's enough for today.

The rich and the poor, the steadfast and the flighty,
Priests and beasts, the weak and the mighty,
Losers and winners, it’s brutal but true
If they all can get Parkinson’s, Parkinson’s can get you

 

~Peter Dunlap-Shohl.