tag:blogger.com,1999:blog-83366437195371444952024-03-03T20:13:42.655-08:00Off and On: The Alaska Parkinson's RagPeter Dunlap-Shohlhttp://www.blogger.com/profile/06286710554254177150noreply@blogger.comBlogger545125tag:blogger.com,1999:blog-8336643719537144495.post-14265819483614786582024-03-03T20:06:00.000-08:002024-03-03T20:13:41.889-08:00Matter of Mind, My Parkinson's, PBS Looks at PD and PD-SHere is a <a href=https://www.pbs.org/video/trailer-matter-of-mind-my-parkinsons-exdtwh/?fbclid=IwAR2JMfvUWPbyGn1m_VY4QvTHf6gLXio2J6TvPChEfN-gShbkw2KVAZgZCjw">short trailer</a> 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 #DBSSurgeryPeter Dunlap-Shohlhttp://www.blogger.com/profile/06286710554254177150noreply@blogger.com0tag:blogger.com,1999:blog-8336643719537144495.post-28214935723833470862024-01-11T19:11:00.000-08:002024-01-11T19:11:33.707-08:00PDS on PBS: Matters of Mind, My Parkinson'sOn 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 <a href="https://www.facebook.com/matterofminddoc">here</a> Peter Dunlap-Shohlhttp://www.blogger.com/profile/06286710554254177150noreply@blogger.com0tag:blogger.com,1999:blog-8336643719537144495.post-12289172496032288952023-06-12T20:06:00.001-07:002023-06-12T20:06:58.102-07:00Pete’s Parkinson’s Portraits, MJ Fox<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxYim_ySWcbEcq5AXNI_AksSHV0xR_KXNS0o3NU0kTxVvJeihDaiI3M3K2KmkyYcfZlz5hejm6nlVBi3inmSkf5YRaulTUTetc7o760zCiBUbpH68ZkuvBB_F1FEmWqgxmDMyJZBPoSMl9xTQRG1KKsZZROlNK0mVGXp6gnNV7UuhISD48-jRy7ewL0g/s2048/F6BD73B3-745C-4BA8-BD32-C3E221FF7C9C.jpeg" style="display: block; padding: 1em 0; text-align: center; "><img alt="" border="0" width="600" data-original-height="2048" data-original-width="2048" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxYim_ySWcbEcq5AXNI_AksSHV0xR_KXNS0o3NU0kTxVvJeihDaiI3M3K2KmkyYcfZlz5hejm6nlVBi3inmSkf5YRaulTUTetc7o760zCiBUbpH68ZkuvBB_F1FEmWqgxmDMyJZBPoSMl9xTQRG1KKsZZROlNK0mVGXp6gnNV7UuhISD48-jRy7ewL0g/s600/F6BD73B3-745C-4BA8-BD32-C3E221FF7C9C.jpeg"/></a></div><p> </p>Peter Dunlap-Shohlhttp://www.blogger.com/profile/06286710554254177150noreply@blogger.com0tag:blogger.com,1999:blog-8336643719537144495.post-78623442166435526522022-06-19T18:16:00.003-07:002022-06-19T18:16:56.341-07:00Pete’s Parkinson’s Portraits: Ozzy Osborne<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHuqqB7j5kABnulLLB6pXiUq5Foy0Y0WLKl7znkLASQ2GBdlrfENBNPorAm61F0mBsXh8UZqpA6Bp9FNYBdid74AiqYFe5pselVSiH7W_38MTB6zJZafr5qpRdlljX5s-Iu_muGJO6HG8A3NDAUQPxe8MZT8m3gdeHnJpHxgJw_1EqNCtYvSFI7PvNjA/s2732/66B9086C-1687-493B-AC47-D4B6870152AB.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2732" data-original-width="2048" height="747" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHuqqB7j5kABnulLLB6pXiUq5Foy0Y0WLKl7znkLASQ2GBdlrfENBNPorAm61F0mBsXh8UZqpA6Bp9FNYBdid74AiqYFe5pselVSiH7W_38MTB6zJZafr5qpRdlljX5s-Iu_muGJO6HG8A3NDAUQPxe8MZT8m3gdeHnJpHxgJw_1EqNCtYvSFI7PvNjA/w560-h747/66B9086C-1687-493B-AC47-D4B6870152AB.jpeg" width="560" /></a></div><br /> <p></p>Peter Dunlap-Shohlhttp://www.blogger.com/profile/06286710554254177150noreply@blogger.com0tag:blogger.com,1999:blog-8336643719537144495.post-47075056223568727552022-03-30T22:31:00.001-07:002022-03-31T19:45:53.612-07:00Pete’s Parkinson’s portraits: Joan Didion Dec. 2021<br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVMnYbfUHHCzdE0Lgmwczus39MWlXdpkh4rsVN1MvtnkqB960BwGGiJv_hxeYqvx8n101_BiGg7dX4LbY4WigYPBLEtDXEVv9qpAa-JLLoKJjpWv93Uvl46taKd1po-hB9u2sJW6zfB9DUjKpb8Fn5yp8c7BBSBNLJ-j-XCHg8LICwBn-XX9EWethZDg/s2732/7C38C747-C51F-4091-AD0E-6C84C34AAF4B.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2732" data-original-width="2048" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVMnYbfUHHCzdE0Lgmwczus39MWlXdpkh4rsVN1MvtnkqB960BwGGiJv_hxeYqvx8n101_BiGg7dX4LbY4WigYPBLEtDXEVv9qpAa-JLLoKJjpWv93Uvl46taKd1po-hB9u2sJW6zfB9DUjKpb8Fn5yp8c7BBSBNLJ-j-XCHg8LICwBn-XX9EWethZDg/w480-h640/7C38C747-C51F-4091-AD0E-6C84C34AAF4B.jpeg" width="480" /></a></div><br />Peter Dunlap-Shohlhttp://www.blogger.com/profile/06286710554254177150noreply@blogger.com0tag:blogger.com,1999:blog-8336643719537144495.post-5243731713413949132022-01-08T17:40:00.002-08:002022-01-08T17:52:27.476-08:00Caregiving, Caregetting: New Post on the Northwest Parkinson's Disease Foudation Community Blog <p>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<a href="https://nwpf.org/stay-informed/blog/caregiving-caregetting/" target="_blank"> here</a>. <br /></p>Peter Dunlap-Shohlhttp://www.blogger.com/profile/06286710554254177150noreply@blogger.com0tag:blogger.com,1999:blog-8336643719537144495.post-33591619952768688142021-10-02T15:29:00.007-07:002021-11-17T16:51:13.585-08:00New Post on the NWPF Site "What I Like About Parkinson's Disease" <div data-contents="true"><div data-block="true" data-editor="dud57" data-offset-key="e0qa5-0-0"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="e0qa5-0-0"><span data-offset-key="e0qa5-0-0"><span data-text="true"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8WDE2-6Ds3FSp85Gww7l50pDrrbWPEZNtlJLwakW8xAzQySWACkPVPE6bcTWLp2pPmdJ9CdS1UqaTCu8-kXWNwJWdTnCGzR2pyNU-bnuSycIq6YU4VZjSyQY0AhMaTC-z0_oAcjI8pkpD/s2042/IMG_1744.JPG" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="2042" data-original-width="1488" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8WDE2-6Ds3FSp85Gww7l50pDrrbWPEZNtlJLwakW8xAzQySWACkPVPE6bcTWLp2pPmdJ9CdS1UqaTCu8-kXWNwJWdTnCGzR2pyNU-bnuSycIq6YU4VZjSyQY0AhMaTC-z0_oAcjI8pkpD/s320/IMG_1744.JPG" width="233" /></a></div><br />Staying positive can be tough with Parkinson's Disease </span></span><span data-offset-key="e0qa5-2-0"><span data-text="true">(See what I mean? that in itself is a negative statement.) No problem. I posted <a href="https://nwpf.org/stay-informed/blog/what-i-like-about-parkinsons/">a list</a> of the things <a href="https://nwpf.org/stay-informed/blog/what-i-like-about-parkinsons/">here</a> I like about PD </span></span><span data-offset-key="e0qa5-4-0"><span data-text="true">on the Northwest Parkinson's Disease Foundation Community blog. you are welcome to crib from it, if you are feeling negative. </span></span></div><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="e0qa5-0-0"><span data-offset-key="e0qa5-4-0"><span data-text="true"><br /></span></span></div><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="e0qa5-0-0"><span data-offset-key="e0qa5-4-0"><span data-text="true"><br /></span></span></div><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="e0qa5-0-0"><span data-offset-key="e0qa5-4-0"><span data-text="true"><br /></span></span></div><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="e0qa5-0-0"><span data-offset-key="e0qa5-4-0"><span data-text="true"><br /></span></span></div><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="e0qa5-0-0"><span data-offset-key="e0qa5-4-0"><span data-text="true"><br /></span></span></div><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="e0qa5-0-0"><span data-offset-key="e0qa5-4-0"><span data-text="true">Reason #2 I like Parkinson's: </span></span><br /><span data-offset-key="e0qa5-4-0"><span data-text="true">"Causes spontaneous combustion in most patients” is not a commonly cited problem. Way to go, Parkinson’s.</span></span></div></div></div><p> </p>Peter Dunlap-Shohlhttp://www.blogger.com/profile/06286710554254177150noreply@blogger.com0tag:blogger.com,1999:blog-8336643719537144495.post-11338653367565666992021-09-21T22:17:00.002-07:002021-09-21T22:36:02.131-07:00Parkinson's Is Not Witchcraft, Q & A With Uganda's Hannington Kabugo<div class="separator" style="clear: both; text-align: center;"> <div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeAY-pxxsei5YSz2GKiiEgUYZXT7JyInT4WPCqFvDN-rMDKAgu0V77rZfa3_5MtlSlPGQgJuFEQg5KeEP2Z2QbLVIVR7ZtKKsJRcg0kCtqEot2Bu2kUEyH8y8fBVOJyl4GKqakzUMwbFBj/s403/242127211_603094977365906_2520656849484126296_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="403" data-original-width="272" height="644" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeAY-pxxsei5YSz2GKiiEgUYZXT7JyInT4WPCqFvDN-rMDKAgu0V77rZfa3_5MtlSlPGQgJuFEQg5KeEP2Z2QbLVIVR7ZtKKsJRcg0kCtqEot2Bu2kUEyH8y8fBVOJyl4GKqakzUMwbFBj/w436-h644/242127211_603094977365906_2520656849484126296_n.jpg" width="436" /></a></div><br /> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMHHqcsvL-HOUK8OMRiJMoQfDZIbrf4pqsRNP1l7BnuIJS61IUUuhT82_cF7V3h7zQK9t2xSFvmpZiNwN5MsqwRL5vLmEvBL0IjUZQICiOwQ4rNeNFCkvGv6-W5NuejPwafzc5X_uVVbiy/s403/242127211_603094977365906_2520656849484126296_n.jpg" style="margin-left: 1em; margin-right: 1em;"><br /></a></div><div class="gmail_default" style="font-family: garamond, serif; font-size: large;"><div class="separator" style="clear: both; text-align: center;"><div style="text-align: justify;"><i> Harrington Kabugo with Miriam "A patient who was treated like my mom she was </i></div><div style="text-align: justify;"><i> in her bedroom for
10 years not getting out I went and got her and brought her in my house"</i> </div><div class="ns4p8fja j83agx80 cbu4d94t a6sixzi8 bkfpd7mw d2edcug0 kb5gq1qc nred35xi pcp91wgn dflh9lhu" role="none"><div class="oo9gr5id ii04i59q" dir="auto" role="none"><br /></div></div><span aria-describedby="jsc_c_gs" class="tojvnm2t a6sixzi8 abs2jz4q a8s20v7p t1p8iaqh k5wvi7nf q3lfd5jv pk4s997a bipmatt0 cebpdrjk qowsmv63 owwhemhu dp1hu0rb dhp61c6y iyyx5f41"></span> </div><br /> 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. "<span class="tojvnm2t a6sixzi8 abs2jz4q a8s20v7p t1p8iaqh k5wvi7nf q3lfd5jv pk4s997a bipmatt0 cebpdrjk qowsmv63 owwhemhu dp1hu0rb dhp61c6y iyyx5f41">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." </span>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.</div><div class="gmail_default" style="font-family: garamond, serif; font-size: large;"></div><div class="gmail_default" style="font-family: garamond, serif; font-size: large;"></div><div class="gmail_default" style="font-family: garamond, serif; font-size: large;"></div><div class="gmail_default" style="font-family: garamond, serif; font-size: large;"></div><div class="gmail_default" style="font-family: garamond, serif; font-size: large;"><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhA3G3y_CyhyphenhyphenBviDuIuGdnsr8_Y-QWvFPZQJLshPP0XUiHtU5dVicKMFjAa0izf_5R3eEMmaC7kZKmS3Lob1bCxs6wv6zL2TWlosht8OuecWytIVnLID0ZzIGGeQuTOjQqYB4qNjSSkw30_/s2048/uganda+locator.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1980" height="431" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhA3G3y_CyhyphenhyphenBviDuIuGdnsr8_Y-QWvFPZQJLshPP0XUiHtU5dVicKMFjAa0izf_5R3eEMmaC7kZKmS3Lob1bCxs6wv6zL2TWlosht8OuecWytIVnLID0ZzIGGeQuTOjQqYB4qNjSSkw30_/w415-h431/uganda+locator.png" width="415" /></a></div></div><div class="gmail_default" style="font-family: garamond, serif; font-size: large;"><br /></div><div class="gmail_default" style="font-family: garamond, serif; font-size: large;"><b>Q:</b> How long have you been a Parkinson's advocate?</div><div class="gmail_default" style="font-family: garamond, serif; font-size: large;"><br /></div><div class="gmail_default" style="font-family: garamond, serif; font-size: large;"><b>A:</b> Since 2013 those are 8 years now.</div><div class="gmail_default" style="font-family: garamond, serif; font-size: large;"><br /></div><div class="gmail_default" style="font-family: garamond, serif; font-size: large;"><b>Q:</b> 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?</div><div class="gmail_default" style="font-family: garamond, serif; font-size: large;"><br /></div><div class="gmail_default" style="font-family: garamond, serif; font-size: large;"><b>A:</b> 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 <a href=" www.parkinsonsisnotwitchcraft.com">Parkinson's si buko Uganda </a>(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.</div><div class="gmail_default" style="font-family: garamond, serif; font-size: large;"><br /></div><div class="gmail_default" style="font-family: garamond, serif; font-size: large;"><b>Q:</b> How is PD treated medically in Uganda? Are medications available, Carbidopa/levodopa? Neurologists to provide expert care?</div><div class="gmail_default" style="font-family: garamond, serif; font-size: large;"> </div><div class="gmail_default" style="font-family: garamond, serif; font-size: large;"><b>A:</b> 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.</div><div class="gmail_default" style="font-family: garamond, serif; font-size: large;"><br /></div><div class="gmail_default" style="font-family: garamond, serif; font-size: large;"><div class="gmail_default" style="font-family: garamond, serif; font-size: large;"><b>Q:</b> What is the greatest area of challenge/need facing your organization?</div><div class="gmail_default" style="font-family: garamond, serif; font-size: large;"> </div><b>A:</b> 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.</div><div class="gmail_default" style="font-family: garamond, serif; font-size: large;"><br /></div><div class="gmail_default" style="font-family: garamond, serif; font-size: large;"><b>Q:</b> 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?</div><div class="gmail_default" style="font-family: garamond, serif; font-size: large;"><br /></div><div class="gmail_default" style="font-family: garamond, serif; font-size: large;"><span><b>A: </b>I deal with this perception of PD in Uganda through training to let people know PD isn't witchcraft or a curse.</span></div><div class="gmail_default" style="font-family: garamond, serif; font-size: large;"><br /></div><div class="gmail_default" style="font-family: garamond, serif; font-size: large;"><b>Q:</b> Is it only Parkinson's that is seen as punishment for witchcraft, or are other diseases also perceived that way?</div><div class="gmail_default" style="font-family: garamond, serif; font-size: large;"><br /></div><div class="gmail_default" style="font-family: garamond, serif; font-size: large;"><span><b>A:</b> N<span>o it's not only PD<span><span><span><span>. </span></span></span></span> Diseases
like epilepsy and HIV are seen that way too, among other diseases, so sensitization is very important.
</span></span></div><div class="gmail_default" style="font-family: garamond, serif; font-size: large;"><br /></div><div class="gmail_default" style="font-family: garamond, serif; font-size: large;"><b>Q:</b> Are there other African countries where people regard Parkinson's as punishment?</div><div class="gmail_default" style="font-family: garamond, serif; font-size: large;"><br /></div><div class="gmail_default" style="font-family: garamond, serif; font-size: large;"><b>A: </b>Yes they are many other African countries with the same ideology about Parkinson's and it's the reason we founded <a href="http://www.parkinsonsafrica.com">Parkinson's Africa</a> together with Omotola Thomas,<span class="tojvnm2t a6sixzi8 abs2jz4q a8s20v7p t1p8iaqh k5wvi7nf q3lfd5jv pk4s997a bipmatt0 cebpdrjk qowsmv63 owwhemhu dp1hu0rb dhp61c6y iyyx5f41"> a lady with whom I work. She's an African Nigerian who stays in U.K.
</span>
</div><div class="gmail_default" style="font-family: garamond, serif; font-size: large;"><b><br /></b></div><div class="gmail_default" style="font-family: garamond, serif; font-size: large;"><b>Q:</b> How can the world-wide Parkinson's community, world-wide, help?</div><div class="gmail_default" style="font-family: garamond, serif; font-size: large;"><br /></div><div class="gmail_default" style="font-family: garamond, serif; font-size: large;"><b>A:</b> 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.</div><div class="gmail_default" style="font-family: garamond, serif; font-size: large;"> </div><div class="gmail_default" style="font-family: garamond, serif; font-size: large;"><br /></div><div class="gmail_default" style="font-family: garamond, serif; font-size: large;">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 <a href="https://www.youtube.com/watch?v=RvmaSp6UsX8 ">here</a></div><div class="gmail_default" style="font-family: garamond, serif; font-size: large;"> </div><div class="gmail_default" style="font-family: garamond, serif; font-size: large;"> <br /></div>Peter Dunlap-Shohlhttp://www.blogger.com/profile/06286710554254177150noreply@blogger.com0tag:blogger.com,1999:blog-8336643719537144495.post-11590734651221622132021-09-08T18:43:00.000-07:002021-09-08T18:43:08.730-07:00The Parkinson's Games, Billed as the Parkinson's Olympics, Scheduled for the Netherlands 2022<p>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,<span style="vertical-align: inherit;"><span class="" style="vertical-align: inherit;"> basketball (3x3), boxing, curling, darts, duathlon,
golf, bocce, spinning, squash, tennis, football (soccer) and
swimming, according to its </span></span><a href="https://www.theparkinsongames.nl/" target="_blank">Web Site</a>. The event is set for August, 2022.<br /></p><p>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. <br /></p><p>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. </p><p>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 <a href="https://www.theparkinsongames.nl/" target="_blank">Web site</a>. The games are afoot! <br /></p><p> </p><div id="m_-1722207116862590951yiv4922953717yMail_cursorElementTracker_1630619275620"><div id="m_-1722207116862590951yiv4922953717yMail_cursorElementTracker_1630619313561">
<a data-saferedirecturl="https://www.google.com/url?q=http://Www.theparkinsongames.nl&source=gmail&ust=1631135799710000&usg=AFQjCNG5foRfP2nJ0owb_UGPW8PQGrF6tQ" href="http://Www.theparkinsongames.nl" rel="noreferrer noopener" style="color: black; text-decoration: none;" target="_blank">
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<td width="400"><br /></td></tr></tbody></table></a></div></div>Peter Dunlap-Shohlhttp://www.blogger.com/profile/06286710554254177150noreply@blogger.com0tag:blogger.com,1999:blog-8336643719537144495.post-4067688302624588402021-09-06T17:47:00.002-07:002022-01-08T17:49:42.768-08:00Coping with PD, a Primer <p>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. </p><p>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.</p><p><b>First:</b> 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. <br /><br /><b>Second:</b> 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.<br /><br /><b>Third: </b>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. <br /><br />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.<br /><br /><b>Fourth: </b>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.<br /><br />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 <a href="https://davisphinneyfoundation.org/" target="_blank">The Davis Phinney Foundation</a>, 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 <a href="https://www.apdaparkinson.org/" target="_blank">The American Parkinson’s Disease Association</a>, <a href="https://www.parkinson.org/?utm_source=google&utm_medium=cpc&utm_campaign=Google_AlwaysOn_Brand&utm_term=the%20parkinson%27s%20foundation&gclid=Cj0KCQjw-NaJBhDsARIsAAja6dOm6nM7nMiJUcjUFdhLr6lIk9eYJjKj1biEEVDbAXPcTYuz0zpdoEoaArAlEALw_wcB" target="_blank">The Parkinson's Foundation,</a> and <a href="https://www.michaeljfox.org/?smcid=ap-a1b1R000009ZTSo&smcid=ap-a1b1R0000086fJv" target="_blank">The Michael J. Fox Foundation for Parkinson’s Research. <br /></a><br /><br /><b>Fifth:</b> 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. <br /><br />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.<br /><br />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. <br /><br />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.” <br /></p>Peter Dunlap-Shohlhttp://www.blogger.com/profile/06286710554254177150noreply@blogger.com0tag:blogger.com,1999:blog-8336643719537144495.post-42472827896037089062021-08-01T13:26:00.001-07:002021-08-01T13:30:36.069-07:00The Beatings Will Continue Until Morale Improves, Lurching to Safety With Parkinson's-Related Falls<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdo1gHij_7za3gZZXhPwm5nCYepoZ-SLOE5goIifOACV9AiANFBrWhwRJ6cz078-cEMccMsRXwXNFzaSdzgLBRcnG7fuTfJPbVevbmV6NBr38liZjVItg7d8xj16upLOSBQchj4Lzo7XB9/s2048/kick+and+steo.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1535" data-original-width="2048" height="524" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdo1gHij_7za3gZZXhPwm5nCYepoZ-SLOE5goIifOACV9AiANFBrWhwRJ6cz078-cEMccMsRXwXNFzaSdzgLBRcnG7fuTfJPbVevbmV6NBr38liZjVItg7d8xj16upLOSBQchj4Lzo7XB9/w700-h524/kick+and+steo.jpg" width="700" /></a></div><br /> <p></p><p>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.</p><p>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? <br /></p><p> 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.) </p><p> 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. </p>Peter Dunlap-Shohlhttp://www.blogger.com/profile/06286710554254177150noreply@blogger.com0tag:blogger.com,1999:blog-8336643719537144495.post-50274406656237530512021-07-13T14:23:00.002-07:002021-07-13T14:24:45.983-07:00Looking for Long-term PD Care in Anchorage Area<p> </p><div class="gmail_default" style="font-family: garamond,serif; font-size: large;">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.</div><div class="gmail_default" style="font-family: garamond,serif; font-size: large;">Best,</div><div class="gmail_default" style="font-family: garamond,serif; font-size: large;"><br /></div><div class="gmail_default" style="font-family: garamond,serif; font-size: large;">Peter<br /></div><div class="gmail_default" style="font-family: garamond,serif; font-size: large;"><br clear="all" /><br /></div>Peter Dunlap-Shohlhttp://www.blogger.com/profile/06286710554254177150noreply@blogger.com0tag:blogger.com,1999:blog-8336643719537144495.post-35853905496765003022021-05-18T12:08:00.000-07:002021-05-18T12:08:05.825-07:00Roll Call, A Parkinson's Poem<p>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.)</p><p></p><p>Post riginally written for The Northwest Parkinson's Foundation<a href="https://nwpf.org/stay-informed/blog/?p=2"> Community Blog.</a><br /><br /><br />
</p><div>Parkinson’s Roll Call</div>
<div><br />Hitler, Franco, Mao Tse Dung<br />all had, in common, Parkinson’s<br />Alan Alda, Muhammad Ali,<br />even George H. W. Bush had it (vascularly)<br />Ozzie Osbourne, of Black Sabbath,<br />and… Billy Graham? Go do THAT math!<br />Jesse Jackson, just so you knew,<br />and don’t forget Pope John Paul 2.<br />Vincent Price, most melancholy,<br />Surrealist artist, Salvador Dali,<br />Casey Kassem. Pierre Trudeau,<br />Charlie Rose, Janet Reno,<br />George Wallace and George Roy Hill<br />all had to swallow that bitter pill.<br />Johnny Cash and Robin Williams<br />both suffered forms of Parkinsonism<br />James Doohan, Star Trek’s engineer<br />And Nathan Heard, or so we hear.<br />Linda Ronstadt was not spared,<br />nor was the actor Deborah Kerr.<br />Nor Richard Thompson, of cartooning fame,<br />Nor German actor Ferdy Mayne<br />Nor Conductor of opera James Levine,<br />Nor Eugene McCarthy, that’s right,“Clean Gene”<br />Nor Walter Sisulu, freedom fighter-<br />Nor Jack Anderson, muckraking writer<br />Nor Author and artist Mervyn Peake,<br />Nor Glenn Tipton, of rock band Judas Priest<br />Nor Davis Phinney cyclist of renown,<br />Nor Billy Connolly, a Scottish clown,<br />Nor Maurice White, of Earth,Wind and Fire<br />Nor Roger Bannister, sub four-minute miler,<br />Neil Diamond’s got it, so they say,<br />Spiders & Snakes singer Lizzie Grey,<br />Martha Johnson, who sang with the Muffins,<br />actor Bob Hoskins, a lovable ruffian<br />Margaret Bourke-White, photographer sublime,<br />Actor and model Valerie Perrine,<br />Steve Ludzik of the NHL,<br />Brent Peterson, a hockey star as well,<br />Boxing hero Freddie Roach,<br />Billy Kennedy Texas A&M basketball coach.<br />Massa Salto pro wrestler from Japan,<br />Paul Sinha, British comedian<br />And who can forget Fox, Michael J?<br />The list goes on, but that's enough for today.<br /><br />The rich and the poor, the steadfast and the flighty,<br />Priests and beasts, the weak and the mighty,<br />Losers and winners, it’s brutal but true<br />If they all can get Parkinson’s, Parkinson’s can get you</div><div> </div><div>~Peter Dunlap-Shohl.</div>
Peter Dunlap-Shohlhttp://www.blogger.com/profile/06286710554254177150noreply@blogger.com0tag:blogger.com,1999:blog-8336643719537144495.post-69043774642422038312020-07-21T13:49:00.001-07:002020-07-21T13:49:54.665-07:00Let There be Light, of the Proper IntensityHello friends, we interrupt our normal harrangues about exercise as a way of coping with some significant PD symptoms to bring you some exciting news! There is an intervention for Parkinson's Disease under investigation which involves <i>sitting down quietly</i> for an hour. It is a form of<a href="https://parkinsonsnewstoday.com/2020/07/17/phase-3-trial-tests-photopharmics-at-home-light-therapy-to-ease-parkinsons-symptoms/"> light therapy for Parkinson's Disease,</a> now moving to stage three trials. This represents a totally new avenue to approach PD, one that doesn't just give us yet another version of an existing treatment. <br />
<br />
The idea is to use exposure to light to better regulate our circadean rhythmns. What are circadian rhythms? According to the National institutes of health, <br />
<div style="text-align: justify;">
<br /></div>
<blockquote class="tr_bq">
<div style="text-align: left;">
"Circadian rhythms are physical, mental, and behavioral changes that
follow a daily cycle. They respond primarily to light and darkness in an
organism's environment. Sleeping at night and being awake during the
day is an example of a light-related circadian rhythm. Circadian rhythms
are found in most living things, including animals, plants, and many
tiny microbes. The study of circadian rhythms is called chronobiology."</div>
</blockquote>
<br />
In a completely unsurprising development, these cycles are messed up by Parkinson's Disease. The hope is that by using light to regulate the cyles to achieve a more normal flow, symptoms will be alleviated safely. There is evidence that this is what happened in a phase two trial of the light device.<br />
<br />
One exciting development here is the device appeared to reduce non-motor symptoms. According to an article in Parkinson's News Today, "Patients given light therapy <a href="https://parkinsonsnewstoday.com/2018/10/12/spectramax-light-therapy-shows-promise-in-easing-parkinsons-non-motor-symptoms/">showed</a>
a significant reduction in non-motor symptoms (measured through Part 1
of the MDS-UPDRS), as well as a significant improvement in their quality
of life and a tendency to reduce daytime sleepiness."<br />
<br />
It makes sense to me that this would be a productive area for research. I noticed several years ago that the long hours of daylight of the Alaska Summer appeared to make me more sensitive to the levels of levedopa I was ingesting, As the summer went by, I was experiencing signifcant increase in dyskinesia, and discovered that I could reduce my Sinemet dosage by roughly half, in fact I <b>had</b> to reduce it to get any drawing done.<br />
<br />
One last thing, this is research that we can all volunteer to participate in, It will be conducted through telemedicine, which means you can participate from anywhere, even remote Alaska. You can find more info <a href="https://clinicaltrials.gov/ct2/show/NCT04453033#contactlocation">here.</a><br />
<br />
Peter Dunlap-Shohlhttp://www.blogger.com/profile/06286710554254177150noreply@blogger.com0tag:blogger.com,1999:blog-8336643719537144495.post-23209173745649218162020-07-07T12:52:00.000-07:002020-07-07T12:52:04.813-07:00Yet Another NEW POST Over at the Northwest Parkinson's FoundationNew Post: "Congratulations, survivor" can be read h<a href="https://nwpf.org/stay-informed/blog/congratulations-survivor/">ere</a>. You may avoid reading it by not clicking on the link, it's entirely up to you!Peter Dunlap-Shohlhttp://www.blogger.com/profile/06286710554254177150noreply@blogger.com0tag:blogger.com,1999:blog-8336643719537144495.post-30318438643603637902020-06-03T19:53:00.000-07:002020-06-03T19:53:29.288-07:00Expendable, a New Post on the Northwest Parkinson's Foundation Community BlogHello Friends. I have a new post up at the NWPF site. It's entitled "Expendable". It's about sacrificing those of us in the vulnerable category to the Corona virus to open up the economy. See the deal I'm willing to make as a human sacrifice <a href="https://nwpf.org/stay-informed/blog/expendable/?fbclid=IwAR0HspJdfdeq6izyc-3GFMuX4I8A0i6xkUF5ZgcBvGJw1KzXzhPNkCl6drw">here</a> . Peter Dunlap-Shohlhttp://www.blogger.com/profile/06286710554254177150noreply@blogger.com0tag:blogger.com,1999:blog-8336643719537144495.post-71936119379459441352020-05-05T14:44:00.001-07:002020-05-05T14:44:25.430-07:00In Praise of Fear, New Post at The Northweat Parkinson's Disease Foundation<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg30CuinwghxlRSZAxcy3bQPh-fKQiQh-cKOUk6inpaFudm8r4oL1R_4ZNLYpuJpP7K5DEdafz0s1vhxtJyCzzV8jortqG8kaHGAOCLqJyq5k-i1jfkUA-ku6wQOtlHg3S-iN7fbkV6ziod/s1600/in-the-name-of-fear-iron-chicken.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="302" data-original-width="226" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg30CuinwghxlRSZAxcy3bQPh-fKQiQh-cKOUk6inpaFudm8r4oL1R_4ZNLYpuJpP7K5DEdafz0s1vhxtJyCzzV8jortqG8kaHGAOCLqJyq5k-i1jfkUA-ku6wQOtlHg3S-iN7fbkV6ziod/s1600/in-the-name-of-fear-iron-chicken.png" /></a></div>
Hey friends, here is my <a href="https://nwpf.org/stay-informed/blog/in-praise-of-fear/?fbclid=IwAR0sKiWib6uIP1hM7yA7pHFYaube_8GTb7XLSzNWuv-xtd6rgKbC_wxCZLI">latest post</a> for the NWPF. In Praise of Fear. Fear is not something to be ashamed of if you have PD, it is a rational response. Of course if uncontrolled, fear can be disastrous, but so can an excess of bravery. The trick is to deal with it in a way that helps you with your effort to cope with Parkinson's. Peter Dunlap-Shohlhttp://www.blogger.com/profile/06286710554254177150noreply@blogger.com0tag:blogger.com,1999:blog-8336643719537144495.post-77135260777585496322020-03-10T21:55:00.001-07:002020-03-10T21:55:14.745-07:0018 Years of Parkinson's Disease, Looking BackHey friends, ol' Parkie Pete the PD Pundit has just had a comic posted over at Health Union. It's my reflection on 18 years of Parkinson's Disease, and how much the PD landscape has changed. You can find it <a href="https://parkinsonsdisease.net/living/pd-pundit-reflection/?via=homepage-hero&fbclid=IwAR30r8WMBYmXhN0lbBb3Ym1HAmXPvZAXWlgXPYGuPuVmMcKSgSvVwUOKdMQ#comments_anchor">here</a>. You may need to scroll up when you land on the page, but it's there. Festinate Forward! PeterPeter Dunlap-Shohlhttp://www.blogger.com/profile/06286710554254177150noreply@blogger.com0tag:blogger.com,1999:blog-8336643719537144495.post-54850871221513548022019-12-12T12:20:00.000-08:002020-06-03T19:55:24.234-07:00Things to Avoid Saying to a Person With Parkinson's Disease<img alt="" data-udi="umb://media/acea4ff895ab40a0954bf8b63fb990af" src="https://nwpf.org/media/2217/pds-what-not-to-stay.jpg?width=296&height=248" style="display: block; height: 248px; margin-left: auto; margin-right: auto; width: 296px;" />
<br />
<div>
<br /></div>
(Written originally for <a href="https://nwpf.org/">The Northwest Parkinson's Foundation.</a>)<br />
<br />
What can I say? It’s a free country. You can declare, utter, intone or even verbalize whatever you like (almost). But if you want to spare your friend/acquaintance/loved one who has Parkinson's some silent tooth-gnashing, here are a few things to avoid saying to them.<br />
<br />
1.) “Boo!” Those of us with Parkinson's are more
easily startled than those of you without it. This is probably has to
do with the autonomic nervous system, its connection to the pre-frontal
fizgig and the hemispheric laterality of the whoopsy response in our
lizard brain. Whatever. I just know that I am more susceptible to being
startled than I was before Parkinson’s set in. So, as charming as the
novelty of seeing a Parkinsperson jump may be, try not to startle them
deliberately. They are anxious enough as it is.<br />
<br />
2.) "Parkinsperson" I
thought this word up myself to avoid the constant repetition of the
phrase “People with Parkinson’s” or the use of the dreaded term “Parkie”
when writing about Parkinson's. But “Parkinsperson” identifies the
individual as primarily defined by their disease. Parkies hate that, and
who can blame them? Furthermore, it’s just a plain ugly word. What was I thinking? My apologies.<br />
<br />
3) “Parkie” Some love this word, some hate it. Those who hate it really loathe it. Rather than risk more tooth-gnashing, surely you
can think up something better. (Note: “Parkie” is also an Alaska term
used by indigenous people to refer to their Winter coats. There is
nothing potentially or actually offensive about the use of the word in
this context. Isn’t language fun?)<br />
<br />
3.) "Hurry up!” It’s
hard not to say this, I know. But slowness of movement is one of the
cardinal symptoms of Parkinson’s. It more than goes with the territory,
it IS the territory. The person you are urging to make haste is probably
already hurrying, at least, for them. When I hurry is when I am most
vulnerable to falls. So weigh your immediate desire to get going against
the time a trip to the emergency room will cost you, not to mention the cost in actual money. If you find this annoying, try silently gnashing your teeth.<br />
<br />
4.) “You’re
looking good” I understand this is meant as a compliment, however,
there is an unspoken thought that goes with it. That thought: you have a
dread disease and should look like absolute crap. Well, give it time,
and someday we’ll all look that way, In the meanwhile, consider a simple
“How nice to see you.”<br />
<br />
5.) “If anyone can beat this disease, you can.” again, I understand this is meant well. But
what are you asking of the person who is sick here? For thousands of
years, millions of people have had Parkinson’s, and as far as I know, not one
has “beaten” it yet. So you are asking the impossible of someone who is
already struggling. Furthermore you are burdening them with the
obligation not to let you down. Instead you are putting them on notice
that they are somehow special and therefore duty-bound to rise like a
phoenix from the ashes. Even further, what does it mean to “beat”
Parkinson's? To be symptom-free forever? To live as long as you can as
well as you can? To be made whole in flesh and spirit? How do we keep
score? And who is the score keeper?<br />
<div>
To sum up, let’s construct a sentence using all our unfortunate
words and phrases in one grandly offensive tongue stumble, as an
example of what to avoid when chatting with a person who has this
disease. (Caution, to those of you who have Parkinson's, the following
may be triggering.) Here goes…</div>
<div>
<br /></div>
<div>
“Boo!... Hey, you’re looking good! But you better hurry up, Parkie! If any parkinsperson can beat this disease, you can, so get going!”</div>
<br />
If that sounds awkward to you, think how it sounds to a person with Parkinson’s.Peter Dunlap-Shohlhttp://www.blogger.com/profile/06286710554254177150noreply@blogger.com0tag:blogger.com,1999:blog-8336643719537144495.post-78593119956056682372019-08-15T12:45:00.002-07:002019-08-29T17:59:21.642-07:00August Parkinson's Reminders for the Anchorage Area <div class="gmail_default" style="font-family: garamond, serif;">
<span style="font-size: medium;">With
the regularity of the Moon circling the earth, the Sun rising and
setting, the very stars in their steady courses, the third Saturday of
the month is rolling our way. And that means it's time for our hardy
band of northern Parkinspeople to meet! I will be handing off the
talking stick to Jane Mara who has agreed to facilitate the meeting. So
show up for something new this weekend at 3:30 on the fifth-floor Tundra
Lounge of the Anchorage Pioneer home. </span></div>
<div class="gmail_default" style="font-family: garamond, serif;">
<span style="font-size: medium;"><br /></span></div>
<div class="gmail_default" style="font-family: garamond, serif;">
<span style="font-size: medium;">And another thing , we will also have a </span><span style="font-size: medium;"><b>deluxe</b></span><span style="font-size: medium;"><b> bonus</b>
August meeting with very special guest Jennifer Riedel, Associate
Director for advancement at the MJ Fox Foundation for Parkinson's
Research, Wednesday, August 21, 6:00 pm at the Pioneer home, up in the
Tundra Lounge. Jennifer will be sharing the latest research updates from
the Fox foundation and this promises to be a real barn-burner of a
meeting. Don't miss it! </span></div>
<div class="gmail_default" style="font-family: garamond, serif;">
<span style="font-size: medium;"><br /></span></div>
<div class="gmail_default" style="font-family: garamond, serif;">
<span style="font-size: medium;">Furthermore... The September meeting will not take place in its usual form, Instead it will be pre-empted <span style="font-size: medium;">and augmented </span>by
the Parkinson's Live Well, Alaska program, a full day of presentations
from local, regional and national PD savants, experts and wisepeople. </span><span style="font-size: medium;">It
will EDUCATE, INSPIRE and EMPOWER you in your daily coping with PD. It
all happens Saturday, September 14, 10:30 am to 3:30 pm at the Anchorage Senior Center, 1300 East
19th Ave in Anchorage Pre-registration required. You may pre-register <a href="http://apdaparkinson.org/Northwest">here</a> Or give them a phone call (206)
695-2905. I will have brochures for the event at our upcoming meeting. </span></div>
<div class="gmail_default" style="font-family: garamond, serif;">
<span style="font-size: medium;"><br /></span></div>
<div class="gmail_default" style="font-family: garamond, serif;">
<span style="font-size: medium;">Festinate Forward,</span></div>
<div class="gmail_default" style="font-family: garamond, serif;">
<span style="font-size: medium;"><br /></span></div>
<span style="font-size: medium;">Peter</span>Peter Dunlap-Shohlhttp://www.blogger.com/profile/06286710554254177150noreply@blogger.com0tag:blogger.com,1999:blog-8336643719537144495.post-80630368647848194632019-07-31T14:15:00.000-07:002019-08-29T17:59:44.966-07:00Bonus Meeting of the Anchorage PD Support Group! Update from the MJ Fox Foundation<div class="MsoNormal" style="text-align: justify;">
<span class="m_-512107291794504432yiv2688915717">The
Anchorage Parkinson’s Disease Support Group invites our members and
care-partners, visitors and new friends who find themselves navigating
Parkinson’s disease to join us on Wednesday
August 21 from 6:00PM – 8:00PM for a special presentation. The
presentation will be held in the Tundra Lounge (5<sup>th</sup> Floor) at the Anchorage Pioneer Homes located at 923 W 11<sup>th</sup> Ave Anchorage, AK 99501).
</span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span class="m_-512107291794504432yiv4578771927">Associate
Director, Jennifer Riedel, of The Michael J. Fox Foundation for
Parkinson’s Research (MJFF) will present on the following topics:</span></div>
<ul style="margin-top: 0in;" type="disc">
<li class="MsoNormal" style="text-align: justify;"><span class="m_-512107291794504432yiv4578771927">an overview of MJFF’s mission;</span></li>
<li class="MsoNormal" style="text-align: justify;"><span class="m_-512107291794504432yiv4578771927">an update on promising Parkinson's disease research including disease modifying and symptomatic treatments</span></li>
<li class="MsoNormal" style="text-align: justify;"><span class="m_-512107291794504432yiv4578771927">the latest legislation that impacts the lives of people with Parkinson‘s;</span></li>
<li class="MsoNormal" style="text-align: justify;"><span class="m_-512107291794504432yiv4578771927">and information on how to get involved with clinical research through Fox Trial Finder and Fox Insight.</span></li>
</ul>
<div class="MsoNormal" style="margin-left: .5in; text-align: justify;">
<br /></div>
<span class="m_-512107291794504432yiv2688915717">The
Michael J. Fox Foundation for Parkinson’s Research is dedicated to
finding a cure for Parkinson's disease through an aggressively funded
research agenda and to ensuring the development
of improved therapies for those living with Parkinson's today. Since
inception in 2000, 88 cents of every dollar spent by MJFF has gone
straight to grants and initiatives to speed a cure for Parkinson's. To
date, the Foundation has funded more than $900 million
in research to bring an end to Parkinson's disease. For more
information, visit <a data-saferedirecturl="https://www.google.com/url?q=http://www.michaeljfox.org&source=gmail&ust=1564691594480000&usg=AFQjCNHf2gjFwHGM6210YJrSeLNsPtffUg" href="http://www.michaeljfox.org/" target="_blank">www.michaeljfox.org</a>.</span>Peter Dunlap-Shohlhttp://www.blogger.com/profile/06286710554254177150noreply@blogger.com0tag:blogger.com,1999:blog-8336643719537144495.post-5937986191258416232019-07-28T14:04:00.002-07:002019-07-28T14:04:42.915-07:00Wile E. Coyote, Spinoza, PD and Me. New Post over at the NWPF Community Blog<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwXTa9zyhZ9XAxDu8rVF-WT9TM79Mu14aio3x0CO42T2GdhyTsPYBZTwGBsortT9OmUqeoE-4w9N3yPMSRkFYJe8FcalWokTl_PeWpYfAD-d0hOCtPMR-Pcer9DtyQvYdzkMoibIJww6Ke/s1600/bike+pd+illo.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="297" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwXTa9zyhZ9XAxDu8rVF-WT9TM79Mu14aio3x0CO42T2GdhyTsPYBZTwGBsortT9OmUqeoE-4w9N3yPMSRkFYJe8FcalWokTl_PeWpYfAD-d0hOCtPMR-Pcer9DtyQvYdzkMoibIJww6Ke/s400/bike+pd+illo.jpg" width="400" /></a></div>
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<span>"The moment I realized there was going to be trouble, there was no
time left to avoid it. I was rolling along at a respectable rate on a
favorite part of a mid-town bike path, a bridge over a bright stream
flowing through a lush greenbelt. The sun was out and the beta
endorphins were flowing.<br /><br />As I cruised across the bridge, my mind wandered. So did my bike." (Read the rest of this grisly tale <a href="https://nwpf.org/stay-informed/blog/wile-e-coyote-spinoza-pd-and-me/">here</a>)</span>Peter Dunlap-Shohlhttp://www.blogger.com/profile/06286710554254177150noreply@blogger.com0tag:blogger.com,1999:blog-8336643719537144495.post-71810748039544314952019-07-02T12:12:00.003-07:002019-07-02T12:12:58.891-07:00Dog Person, A New Post on the Northwest Parkinson's Foundation Community Blog <div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhblIQj_nXGspmSQND62NCPsAdaSVsumJvpQo7wJTL4-7uvLH59NCdptbeKSN7DrQblG-rGSYeC3-F3G51Axuy64o092EK8MTaNQ-r3vXCprW5jHvSubpIs8P7iQ37Qrn56eIOf7yCwszYe/s1600/coral.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="480" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhblIQj_nXGspmSQND62NCPsAdaSVsumJvpQo7wJTL4-7uvLH59NCdptbeKSN7DrQblG-rGSYeC3-F3G51Axuy64o092EK8MTaNQ-r3vXCprW5jHvSubpIs8P7iQ37Qrn56eIOf7yCwszYe/s640/coral.jpg" width="480" /></a></div>
What can I learn from a tiny rat-like dog? Plenty. Find out for yourself <a href="https://nwpf.org/stay-informed/blog/dog-person/">here .</a>Peter Dunlap-Shohlhttp://www.blogger.com/profile/06286710554254177150noreply@blogger.com0tag:blogger.com,1999:blog-8336643719537144495.post-49742269406840796102019-06-30T15:55:00.000-07:002019-06-30T16:05:19.232-07:00Coming Sept. 14, Parkiepalooza! (Better Known as Parkinson's Live Well, Alaska)September 14 will be a good day to have PD in Anchorage. Jennifer Gilleck of the Northwest Chapter of the American Parkinson's Disease Association has been planning an all day Parkinson's symposium, and the list of speakers and topics looks great. It's a mix of local and national experts talking about different aspects of PD. So far, the tentative schedule calls for talks on<br />
<br />
<b>• The importance of movement,</b> with Doctor Nate Coomer, physical therapist<br />
<b>• Treating non-motor symptoms,</b> with Dr,<span style="font-family: "georgia" , "times new roman" , serif;"><span style="color: black;"> Pravin Khemani, M</span><span style="color: black;">ovement Disorders Neurologist<br />
Swedish Medical Center Seattle, WA and Dr. Graham Glass & Genevieve Sykes Movement Disorders Neurologist Peak Neurology, Anchorage, AK</span></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"><span style="color: black;"><b>• Three short talks from people with PD</b> on the subject "My PD Journey" </span></span><br />
<b><span style="font-family: "georgia" , "times new roman" , serif;"><span style="color: black;">• Motor fluctuations in Parkinson's Disease </span></span></b><span style="font-family: "georgia" , "times new roman" , serif;"><span style="color: black;"><span style="color: black;">Dr. Pravin Khemani, M</span><span style="color: black;">ovement Disorders Neurologist Swedish Medical Center Seattle, WA</span></span></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"><span style="color: black;"><span style="color: black;"><b>• Surgical interventions in PD</b> </span></span></span><span style="font-family: "georgia" , "times new roman" , serif;"><span style="color: black;"><span style="color: black;"><span style="color: black;">with Dr. Ryder Gwinn, Neurosurgeon</span></span></span></span><span style="font-family: "georgia" , "times new roman" , serif;"><span style="color: black;"><span style="color: black;"><span style="color: black;"><span style="color: black; font-family: "calibri" , sans-serif;">
<span style="font-family: "georgia" , "times new roman" , serif;">Swedish Medical Center, Seattle, WA</span></span></span><span style="color: black; font-family: "calibri" , sans-serif;"><br /><span style="font-family: "georgia" , "times new roman" , serif;"><b>• </b>Breakout sessions<b> </b>on<b> </b>Dance, yoga, Rock Steady Boxing and more</span></span></span></span></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"><span style="color: black;"><span style="color: black;"><span style="color: black; font-family: "calibri" , sans-serif;"><span style="font-family: "georgia" , "times new roman" , serif;">•Final Session <b>"What's next, a research update"</b> followed by a Q&A with all the speakers.</span></span></span></span></span><br />
<br />
<span style="font-family: "georgia" , "times new roman" , serif;"><span style="color: black;"><span style="color: black;"><span style="color: black; font-family: "calibri" , sans-serif;"><span style="font-family: "georgia" , "times new roman" , serif;"> The event will be held at the Anchorage Senior Center,</span></span></span></span></span><span style="font-weight: normal;"><span style="font-family: "georgia" , "times new roman" , serif;"> </span>1300 East 19th</span><span style="font-weight: normal;"> Anchorage, <span>AK</span> <span>99501</span></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"><span style="color: black;"><span style="color: black;"><span style="color: black; font-family: "calibri" , sans-serif;"><span style="font-family: "georgia" , "times new roman" , serif;"> from 9:30 - 4:30. Cost is $30.00 per person, $20 per person if you sign up before the end of the day, August 15. You can register <a href="https://www.apdaparkinson.org/events/parkinsons-live-well-alaska/">here</a> If you have questions, or you can either<a href="mailto:apdanw@apdaparkinsons.org"> email</a> or call on the phone (206) 695- 2905 </span></span> </span></span></span>Peter Dunlap-Shohlhttp://www.blogger.com/profile/06286710554254177150noreply@blogger.com0tag:blogger.com,1999:blog-8336643719537144495.post-18612294025972642842019-06-18T18:56:00.002-07:002019-06-18T19:00:02.436-07:0017 Year Search for Credible Hope<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikEgF948XBI3FsHKOCkr4vRJzm90M8Ft5FFH7K-Qmk2DMOtQV6bPUCyXcdTC9LxU2G4KR_eUFxcbV2r1DGoOw8i90GSu3kMIpJc-OVl5FeAx2uirrE8BspncFY3uY0bxmoRO-ntElcOlrz/s1600/pdscredible-hope.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="383" data-original-width="287" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikEgF948XBI3FsHKOCkr4vRJzm90M8Ft5FFH7K-Qmk2DMOtQV6bPUCyXcdTC9LxU2G4KR_eUFxcbV2r1DGoOw8i90GSu3kMIpJc-OVl5FeAx2uirrE8BspncFY3uY0bxmoRO-ntElcOlrz/s400/pdscredible-hope.jpeg" width="298" /></a></div>
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My latest blog post for the Northwest Parkinson's Foundation is about credible hope. You can find it <a href="https://nwpf.org/stay-informed/blog/credible-hope/">here</a> or at least, I hope you can!Peter Dunlap-Shohlhttp://www.blogger.com/profile/06286710554254177150noreply@blogger.com0