PDS on PBS II Cross post from "Frozen Grin"

  Here is a link to a story about my struggle to draw with Parkinson's Disease. the story is from "The Daily Cartoonist" a Web journal concerning the world of professional cartooning. It was occasioned by the release of the documentary "Matters of Mind, My Parkinson's" which follows three families and their efforts to cope with PD. The show is part of the PBS Independent Lens series, and will be broadcast nation-wide this coming Monday, April 8th. You can find  the broadcast time in your area by checking the listing in your local PBS station's Web site. You should also be able to stream the film at your leisure following the broadcast through the PBS app which you can download here.

Matter of Mind, My Parkinson's, PBS Looks at PD and PD-S

Here is a short trailer for the PBS documentary "Matter of Mind, My Parkinson's. It follows the attempts of three people and their families to cope with the progressive, disabling and incurable neurological condition. The film won the Audience Choice Award for documentaries at the recent San Francisco Film Festival, possibly due to a scenery-chewing performance by yours truly in the role of "Guy From Up In Alaska Somewhere Who Has Parkinson's." Or possibly because it is a well-made true tale of hope sort of triumphing over long odds. You can decide for yourself on April 8th, when it will be broadcast nation-wide on the PBS Independent Lens series. #ParkinsonsDisease #Documentary #StructureFilms. #hope #DBSSurgery

PDS on PBS: Matters of Mind, My Parkinson's

On April 8th PBS will broadcast a documentary focusing on three people with Parkinson's Disease, a boxing instructor, an optician and a cartoonist who lives far, far away. The filmmakers animated a couple of my illustrations done for "My Degeneration" and spent many hours with Pam and me. The movie is about resilience and hope in the face of a progressiuve, incurable and disabling disease. You can find the facebook page for the film here

Pete’s Parkinson’s Portraits, MJ Fox

 

Pete’s Parkinson’s Portraits: Ozzy Osborne

 

Pete’s Parkinson’s portraits: Joan Didion Dec. 2021

Caregiving, Caregetting: New Post on the Northwest Parkinson's Disease Foudation Community Blog

Caregiving is well-trodden terrain in Parkinson's circles, but what of the reciprocal practice of caregetting? It is a critical skill that doesn't get the same attention. Read some caregetting tips here.

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!