Pasticho

Pastitcho and more pastitcho. It must be Thanksgiving… and boy, do I have alot to be thankful for, not the least of which are my family, friends and even some strangers who have done everything to keep me from sinking into desperation over this turn in my life. For all of you, I give thanks. There are times I feel I should be more freaked out than I am, but I’m not. Go figure…

I currently have my niece, Mary, here. She’s in from her studies in Ecuador. She and my friend, Shelley, made the pasticho this year. They did beautifully, as you can see. With Bev not up to her usual energy, the Callens house was the site for our Thanksgiving dinner this year. A tent in the yard and more food than the 3rd Marine Brigade can eat, it was, as always, a culinary delight. It was the 29th Turkey Day for me, Bev, CK and Shelley. Oh……….. and I won the first quarter football pool. Who could ask for anything more?

On the medical side, things are moving along. I continue to lose strength in my legs and hands. I can still transfer from place to place but with a bit more difficulty. I went to the Cedar-Sinai ALS clinic. They’re a little warmer/fuzzier than UCLA but just as vague. At this point it seems to be about management of the disease more than anything. I read everything I can so when I get there, there’s not a whole lot they tell me that I don’t already know about. But, they check vitals and run reflex and strength tests while the various techs come through and give their input (speech therapist, pulmonary, physical and occupational therapist, etc.). In the end, I’m exhausted and still wonder what else to do. There is still nothing medical that really seems to help. From stem cells to Lithium to bone marrow, they all have questionable outcomes. For now, I let it run its course.

The holidays approach. My brother, Christ, is coming from Christmas Eve to New Years Eve. A number of other outtatowners will be here visiting family and friends around then so, I will get to see most of them. Before you know it, it’ll be another new year. I WILL be done with this one. As will Bev. She is holding up well. Her cancer markers are going down and she remains strong. Thank you for the prayers and good vibes sent both our ways. They do mean a lot.

Well, that’s it for now. I will really try to be more diligent and timely with updates. Until then, I thank you for your love and support……… h

THE WALK

The Laker Girls


Another month has flown by. Considering I’m neither working nor socializing as much as I used to, I still don’t have enough time in the day. But, on to the latest update…


The ALS Walk was a big success. There were about a thousand walkers and $250,000 raised. I am proud to say, “Harry’s Heartbeats” numbered about 50 and raised $24,000. I was and am truly moved by the response. There are some pictures in the gallery. Please have a look. These are the people who have been helping me around here. The majority have been my friends from the time I moved from Chicago. Even a bunch of the kids showed up. My friends, Queenie and Pete Dimas were here from Chicago. There are a lot of others from near and far who were there in spirit and I thank you all. I was asked to say a few words at the start and then we did about a mile walk through old town Pasadena. Upon returning to the park we had a little picnic and hang. Although by the end of it I was fairly exhausted, I was more uplifted by the support of the day than tired. I do want to put out an extra special thanks to my fairy god-sister, Ricki Stein, for all her efforts in organizing “Harry’s Heartbeats.” She is the reason that things went the way they did. Her help with the Walk and in my daily life is beyond the beyond and I cannot possibly thank her enough.

My general health remains good. I continue to lose strength in my legs and the hands are becoming more useless. I still have my gross control (grabbing, leaning, pressing buttons) but the fine stuff is going bit by bit. Now that I have my Disability Benefits and Medicare, I am going to Cedar-Sinai Hospital in a few weeks to see what they have to say, if anything. I will be ordering an electric wheelchair on that visit and should have more info as to where I go from here.

There is something I will ask of all. My best friend/sister Bev has been diagnosed with pancreatic cancer. I ask for all your prayers, chants, hymns or whatever connection to a higher power you might have to help her through. She is in the middle of chemo and she seems to be responding well. She made the walk with us and is a true inspiration. She and her family have made me a part of their family for the last 28 years and I can’t ask enough to send them goodness through all this.

I thank all of you for the care and love you continue to send my way. Until later...

Help, help and more help

Boy, time flies when you’re havin’ fun. Had my friend, Bruce Dallas here. I did some music recording for Bruce on various projects starting in 1981, including one with my brother, Christ, playing bass and Pat Mastelotto (King Crimson, Mister Mister) playing drums. But that’s a whole other story. Anyway, Bruce and I became friends. He and his wife, Dina, now live in Nashville on a beautiful farm that I’ve spent some time at. Bruce took a break from fixing the place up to sell. He replaced my toilet with a taller one and installed my ‘Toto”. That’s a bidet toilet seat… “Look ma, no hands”. Miscellaneous other things too but, really, that was the major thing.

He left and was followed by Nancy, my girlfriend when I left Chicago. She was kind enough to come out and help with lots of stuff, including ‘chick organizing stuff’. Amazing how that stuff seems to come more naturally to some than when I try. Anyway, as with my brothers and niece, it’s good to have the help as my hands are becoming more useless weekly.

I have officially been approved for Social Security Disability and Medicare. That makes it easy to start getting in-home care and equipment as it becomes necessary. I’m being fitted for a foot orthotic to keep my left foot from dropping and tripping me up when I try to shuffle on my feet. And, I need to join the Prescription Plan….. all that and more.

I will try to post again in a more timely fashion.

Almost Through It

Lots of good news, to start. First, I THINK my Social Security and Medicare have been approved. I will celebrate when I get the card.

I went to the MDA/ALS clinic yesterday. I’ve lost another 8 pounds. I am eating like a pig. The doc figures it’s muscle loss. I will try to eat more, in the meantime. The good diet is getting further away as I can’t get enough calories if I’m too strict with it. Also, some new drug trials are starting soon. May or may not get involved. I need to read more about side effects etc. before I decide to take some of this stuff.

Then, the response to the ALS Walk is amazing. So far we're the top team fundraisers. This is a great organization who's sole purpose is advocating for and helping those of us with this disease. I urge everyone to take a minute, go to the ALSA website and click on 'ADVOCACY'. There you'll find ways to contact local politicians on issues regarding ALS. There are letters already addressed and waiting for your voice to be carried to your legislators. There are so many issues that hinder research and basic help that, with your input, can be moved toward resolution with these letters. Those of you in Europe check your local “Motor Neuron Disease Associations”. Advocacy isn’t as big an issue overseas because most countries look after their sick and dying with a little more compassion than here. But, that’s a whole other story.

My friend, Bruce is in town from Nashville for a few days and has been a big help. After him comes Nancy from Chi. I’m starting to need more help so it’s good to have people coming through town right now. I’m going to nap now. More later

Not Done Yet

You may be thinking, "long time no post". Well.... my brothers, Paul and Christ, and niece, Mary were here most of July and early August. It was great having them here. I am needing the help. I know I didn't make it easy for them but they came through like champs, in spite of me. I never realized what a control freak I was until I had to have other people do things for me. I know you're laughing but thanks, you guys. Then my friend Dale and his son, Brett and daughter, Caitlin were in town for a few days and looked after me well... even shipped in "Al's Italian Beef". That was a food cheat day!

And so, my disability appeal went swimmingly. The judge saw fit to reverse the State Disability decision and backdate my start to November. Thank you, your honor. I still await word from Social Security and Medicare. I have qualified for MediCal... so I guess that's something.

Then, if that's not enough, there's "the treatment". I did a treatment a few weeks ago. It was five days of IV drip, about four hours per day. It was a combo of the drugs DMSO and EDTA. They are normally used for metal detoxification. Some doctors seem to think the combo may have benefits to conditions similar to ALS. I await a result. Since normal medicine is quite lost as to a working drug it leaves the field wide open to alternatives. This seems to be one that, at the least, won't make my eyes bleed or grow another toe out of my forehead.

And then there was Smoother's Surprise 60th Birthday Bash. Two years in the making, we had a hundred people in a restaurant and dozens more on video, celebrating 60 years of Smoother. We actually got him. He thought he was there for The Major's birthday dinner. For those of you who don't know, Smoother is an early friend, frequent employer and husband of Bev. They are a part of the West Coast Gang. We have been friends for almost thirty years. And in that time I never thought we could fluster him... but we did. Well, actually, his two sisters, brother-in-law and nieces, over from England, did that. It was a grand time. Can you say "YouTube"?

At this point I wait for the bureaucracy and prepare for the "Walk to Defeat ALS" on October 26th, here in Pasadena. If we have your e-mail, you will get tagged for it. If you're in town come join us for a 1-2 mile walk through Old Town Pasadena. If elsewhere, you can join us virtually. Be well.

State Stuff

Still haven't heard from the appeal hearing but, went to Medicaid office yesterday. For those of you uninitiated to bureaucracy here's a quick primer. After filling out 20 pages of stuff and supplying them statements on everything in my life back in January for my surgery, I was denied and the case closed. Now, they can't use that info again, you must start over. But they also needed my Social Security card, which I haven't seen since I was 15. They won't accept anything else, like tax returns or passports or driver's license but, they will accept......... a receipt that says you applied for a new card. The Social Security office will give you a new card if you show them.................. a passport and driver's license.
You go back with your 20 pages of stuff and documentation to Medicaid office and they want to see.............. your passport and driver's license as well as everything else. Then, just when you think you've complied they hand you another 8 forms that you need to fill out while you're in a wheelchair sitting at a bank teller-style window. I had my niece and brother with me so that made it somewhat more tolerable. Once we have filled out those forms, they want to see new documentation to answer questions for info gathered from.......... the unusable original application. It was at this point that I asked, " If we couldn't use the previous application, how do you get this information"? I was stared at.
In the end , we got through it. Now, it was on to fingerprints. I had to go to the bathroom first so
in I go and............... EARTHQUAKE. It was a minor one, as these things go but, strong enough to empty the building and we waited on the sidewalk. 30 minutes later we were back inside, I was printed and now await acceptance or denial. And that's how that stuff goes.
In the meantime, I go to a clinic tomorrow to try the 'treatment' and see what happens. tune in tomorrow.......

Hearing

So, I had my state disability hearing yesterday. The judge seemed sympathetic to the cause as well as his assistant. Should have a ruling soon. The amount of payments may not change but should get 5 months retroactive payments. A small victory but a win nonetheless.
Getting ready to go to an alternative clinic to see about getting my DMSO/EDTA treatment administered. Otherwise, still have my brother and niece here for another week or so. It has been great as I'm needing more help to prepare meals and keep the house in order. My scooter is certainly a big help getting me around the house with less effort. More in a bit, after doctor.