Huntington Disease Lighthouse Families

For HD families ... by HD families
 

2015 Update From Will

Posted by Will 
2015 Update From Will
January 03, 2016 05:04PM
I had my annual ENROLL visit in September and am still symptom free at age 69 with my lucky CAG of 40. I ran my 40th Marine Corps Marathon on October 25th and finished with the other "Groundpounder", Al Richmond. We're the only people to have finished all the races starting in 1976.

My time was the slowest ever, and I barely made a cutoff time at the 20 mile mark. I assumed old age was creeping up on me. Usually I start to walk 3 or 4 days after the race. This time I didn't feel up to it. After about 6 days I began to walk and noticed my right calf was bothering me after only 50 feet or so. It felt like a calf strain and I tried to treat it as one. When my self treatment wasn't working I spent about a month chasing a fix with an orthopedic doc. I was worried that I would never run again and recalled Scott M's situation when he couldn't exercise.

I'll spare you the whole story, but it wasn't a strain. I had Peripheral Artery Disease (PAD) in my upper leg. The femoral artery had a major blockage. That sounds terrible, but it's actually quite fixable. I had surgery last Wednesday that inserted a catheter with a balloon to open the artery and then leave stents to keep it open. It was done under local anesthesia with some happy juice, so I got to watch. That was way cool.

I'm walking pain free and taking little running steps. It will take a while to get back in shape, but the OF isn't done yet. I'll be on Plavix, a blood thinner, for a while, and Lipitor permanently. Lipitor is usually for cholesterol problems, but is also prescribed to help with blood flow. That's also good news. It's a statin, which may be good for HD.

It truly was a Happy New Year. Maybe my race times will start going the other way!!

Will
Re: 2015 Update From Will
January 04, 2016 05:41AM
Will, good to hear from you! I have lots to say lol, but just can't form my thoughts tonight lol, so will check-in and post some more tomorrow, but for now, glad you're on the mend! smiling smiley smiling smiley smiling smiley
Re: 2015 Update From Will
January 05, 2016 11:52AM
You go Will!!!
Re: 2015 Update From Will
January 05, 2016 12:45PM
Great to hear, Will! Here's to a great 2016 for you! spinning smiley sticking its tongue out
Re: 2015 Update From Will
June 12, 2016 03:11AM
I think of you often Will. I just logged back in after a long time away. I never posted too much but took in everything you all had to share. I am most grateful for that. I thought of you often and your super healthy lifestyle. I"m glad your'e still in the fight and doing OK (other than this unwelcome surprise) . smiling smiley
Re: 2015 Update From Will
June 12, 2016 04:10PM
carell,

Good to hear from you. I belong to the HD Facebook group, but seldom read or post there. I've always preferred this message board format. I do check in here daily even when folks seem to be posting elsewhere. I'll turn 70 in August and start to collect my full USA Social Security pension to add to two others.

Debbie and I have never had a taste for Ferraris and have lived frugally. With no heirs, our SS pensions are additional play money. I started with a once and a lifetime trip to Iwo Jima this year - see my blog post about it. This year I plan to finish climbing Mt Mitchell in North Carolina (the highest peak east of the Mississippi). I made it about 1/2 mile from the summit and had to turn back. That was before my PAD, and I made a bunch of mistakes. My new legs and my new trekking poles will get me to the top.

My 2017 adventure will be a guided climb of Mt Fuji (Fujisan) in Japan. I had a chance to do it many years ago when I had a free weekend with the Marines near Tokyo. I'm embarrassed to say I spent the weekend at an Officer's Club pool chasing women.

Will
Re: 2015 Update From Will
June 14, 2016 11:26AM
Hi Will,
I am rather new here but have enjoyed reading your blog and posts. I pray that I follow in your healthy footsteps. I am 60 with a CAG of 39. Mostly asymptomatic, I believe. I recently read your vitamin/supplement, post and copied it. Thanks for that. One supplement I started taking about a month ago is Hemp oil. (Amazon) My chiropractor recommended it for me. I take that instead of fish oil as it is loaded with Omega 3,6 & 9. It seems to help with stiff joints. Supposedly good for cholesterol too. Fortunately that is not an issue for me. My back bothers me too much to run so I have become an avid bicyclist. You might want to give it a go once your long distance running comes to an end. I ride about 150 miles/week and am still working full time.
Just wanted to say hello and congrats on your latest completion of the MCM and your trip to IWO.
Re: 2015 Update From Will
June 23, 2016 10:24AM
Nice Will!!
Re: 2015 Update From Will
July 11, 2016 02:47PM
What great news! I needed to hear somethin positive today...race on Will!
Re: 2015 Update From Will
July 19, 2016 12:39AM
Hey Will, haven't been here in a while but happy to hear you have mended.

What is it about statins that may be good for hd?

Thanks and happy birthday next month.

Pete
Re: 2015 Update From Will
July 19, 2016 04:23PM
Pete and Laura,

I was thinking about SSRI's, not statins. My bad. [hddrugworks.org]
Good to hear from you.

Will
Re: 2015 Update From Will
July 22, 2016 09:15AM
Oddly enough, my wife takes sertraline (Zoloft) along with other meds in her cocktail mix. In the recent months, she has become more and more agitated. She had been taking Xenazine (for chorea), sertraline, risperidone, amantadine daily.

I felt that the Xenazine (or generic tetrabenazine) was obviously muting her chorea as she could sit still at a good length of time, but her movements would appear to kick in when she would get agitated and bounce around. Being active and knocking cushions off a couch, and jumping up and down from the kitchen table... that to me can have a different symptom than consistent chorea.

Anyway, her most recent visit to the neurologist addressed this. She has ramped up her risperidone through the day and the setraline (SSRI of choice) has remained unchanged. We also have added Lorazepam (generic for Ativan) for the anxiety and it appears to be less addictive than Xanax.

I'm happy to say that my wife, in the recent three weeks now, is doing better. Far less movements and I really am not seeing any of the feared dystonia or parkinsonian effect which I assume would suggest rigidity and the like.

Hope this helps. Will, keep on running... Rich, keep on riding!
Sorry, only registered users may post in this forum.

Click here to login