Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The KDA web site is a source of real information and even stories of other guys with the same problem. All of a sudden I was not alone, and also the information about the research going on gave me hope."

Archives - 2015 and Older Transcripts

Topic:  Open Forum

Guest:  None

Host:  Mike Goynes

Gary_KC
Hi Stewart. No body is here yet.
MikeG
Kennedy's Disease Chat
MikeG
and I thought I'd be late... :)
Stewart
Hi, Good morning Happy New Year, yes a bit slow today
MikeG
how are you Gary?
MikeG
yse, Happy New Year!!!
MikeG
may it be a good one for everyone.
Gary_KC
MikeG and Stewart, Happy New Year, too.
MikeG
we were supposed to meet Mike White and his family (from Australia) today at Busch Gardens but his daughter is sick and had to postpone the trip to Tampa.
MikeG
the sun is out today but tomorrow is a 50% chance of rain... not a good day for the park O the beach.
Gary_KC
I know that lots of people got cold during holiday season.
MikeG
we have 65 degrees here right now.
Stewart
I remember Mike, He's from Adelaide Right
MikeG
yep - the flu is going around - BIG time!
MikeG
Perth
Gary_KC
we have 34 degrees with cloudy.
Stewart
Oops
MikeG
he was at San Diego in 2010
Stewart
It's cold here 39 Deg
MikeG
we bid on the trip to Melborne (and won it) then Mike said come see us and we'll give you the same deal for the same donation to the KDA - so we did it!  spent 10 days over ther.
MikeG
my fingers stop working at 50 - I don't think I'd be able to take cold weather again...
Stewart
Very nice I've never been to Australia
Gary_KC
I keep my room temparature about 73 degrees, otherwise, my fingers and foot feel cold.
MikeG
I lived in Columbus, OH off and on for about 10 years - glad I'm not up there now.  I have a buddy in Cincinnati who said they have 3 feet of snow so far.
MikeG
It's a great country and the people are fantastic!
Stewart
I think Florida is the plsce to be.
MikeG
very expensive to live there though...
MikeG
a hamberger cost us $25 there at a park.
Gary_KC
Are you kinding? I can not believe it.
MikeG
Yep - Tampa is perfect for me.  Just the right climate and, since 2005... no hurricanes.
MikeG
yes, I don't know what the wages over there are but the exchange rate hit us hard to boot!
Gary_KC
Yes, Austraia dollar is stronger.
Stewart
My son is 14 and I have yet to take him to New Zealand to see where is father grewup. I have frends visiting right now.
MikeG
we're glad we visited but I'm going to be staying in the good'old US of A from now on.  Traveling is getting harder and harder for me.
Gary_KC
I travelled to Japan with my friend in October. Without his lots of help, I coud not have the travel.
Stewart
I just had a checkup my vitamin D levels were extremely low and cholesterol very high. Any idea’s what meds can help my cholesterol; I have an appointment with a cardiologist in a couple of weeks
MikeG
whatever you do - don't go to China with a powerchair!  I don't know if you heard about our adventures - it was elaborated on by my wife, Paula, in the spring KDA newsletter... but they confiscated the batter in my scooter because it was VERY DANGEROUS!  It turned the scooter into a PUSH CART - which is waht they were calling it in China.
MikeG
I get a lot of sunshine - being in Florida... and take a statin (Simvastatin) - even though it causes muscle weakness it keeps mu cholestrol in check.
MikeG
I was raised on vitamin D milk and whole milk when I was very young.  So my D levels are still ok, even though I switched to Almond milk sveral years ago.
Stewart
He wanted to keep me away from statins
MikeG
yep - most neurologists will recommend that
Stewart
My Dr told me to take 2000 units of Vitamin D for two weeks then he's going to retest
MikeG
cut down on meats and invrease leafy vegtables...
MikeG
sounds like a plan
MikeG
I'm scheduled for a CBC Monday.  It's been a year so I'm hoping everything is still looking ok...
Stewart
I think I eat pretty healthy, I’ll try harder. High cholesterol seems to run in my family
MikeG
I don't know what happened to Lou... she was scheduled to be on today.
MikeG
me 2 - I eat every vegitable there is!
MikeG
rutabagas are my downfall and they're in season right now - I hope I don't get another Kidney Stone from eating them... :)
Gary_KC
My doctor always tell me to reduce red meet for colestrol.
MikeG
Hi David, how much snow do you have up there now?
david
Hi Gents sorry I am late to the chat
Stewart
There’s a farmer’s market held every Saturday up the roads that were I’m going after this………
david
snow fall totals about 6 inches just after Christmas and it is still on the ground today, its been quite cold but actually normal for here
MikeG
a friend in Cincinnati said they had 3 feet so far and that was before the new year!
MikeG
he's an avid biker and is very disappointed he can't ride...
david
I see that vitamin D has been discussed, I started on 200o units a 4+months ago and was increased to 4000 units
MikeG
wow!
Gary_KC
We had about one inch snow new year eve in Kansas City.
MikeG
any side effects to that?
Gary_KC
What is the purpose of taking Vitamin D? Osteoprosis?
david
Your Cincinnati friend is pulling your leg some areas may have gotten up to a foot or more during that two day period, I have 3-foot piles where the snow plow pushed all the snow on our long driveway maybe that's what he mesasured
MikeG
he's like that - an old Air Force buddy that I knew during the Vietnam War... :)
MikeG
likes to exaggerate.
Stewart
My Vitamin D level is 20 it’s supposed to be 30-100
david
My vitamin D levels tested very low and did not improve enough so increased supplement, my endocrinologist and PCP were both concerned in particular going into winter when we do not get as much sunshine
MikeG
I just checked mine - 33
MikeG
still on the low end...
david
Part of the concern for vitamin D is bone health but it also impacts overall health as I understand it.
MikeG
that may be a question that we put in the next KDA survey: What is your vitamin D level?
Gary_KC
My Vitamin D level is 42.
david
My last test was 27 with the 2000 unit supplement and will have another blood test next week in prep for a visit to my PCP
MikeG
do you feel tired much of the time, David?
Stewart
Apparently a lot of people have low vitamin D levels but for those of us with Kennedy’s it’s a real problem.
david
I also noticed a comment on statins and I too had trouble tolerating them  I am now on Welchol it works in the digestive track and has no impact on muscles and lowers my cholorestrol enough
MikeG
that's some good news.
MikeG
I'm taking 20mg/day of Simvastatin...
david
I am tired only at times and over the last year I would have to say that my stamina has improved. I notice more problems in cold weather and will report on whether this winter seems better with the Vit D
MikeG
I think that's about as low as you can get it - it's a very small pill...
Stewart
I know I feel tired most of the time. I sleep 9 plus hours a night
Stewart
I'll mention Welchol to my Doctor thanks
MikeG
that's good - I have to take Xanax and Melatonin to help me sleep and then I can only sleep for about 6 hours...
david
Sleep is a problem for me, a good night is 6 hours.  At times, last night being an example I cannot get comfortable in bed I have been having some moderate leg pain
MikeG
I can't shut my brain off when I get up to go to the bathroom at night.
Stewart
The only thing that interrupt my sleep is I still itch
MikeG
that's where the Melatonin comes in - 10mg helps me.
david
I was taking 20mg of Trazadone and it helped but I did not like the lost of stability if I needed to get up at night (often the case) recently stop because I have been having moving around in the bed to the point Margy wakes up but I do not.  Will also be discussing that problem with my PCP
david
I stopped taking the Trazadone and movement episode have greatly decreased but then again I am getting less sleep in total and probably a lot less deep sleep
MikeG
any side effects when you stopped taking Trazadone?
MikeG
Paula and I were taking Cymbalta but, fourtunately, we stopped after we read about all the bad issues people were reporting about taking it.
david
no negative impacts other than less sleep which is expected since that is why I was taking it, I have been off it for almost a month now had been taking it for almost 2 years
MikeG
that's good!
MikeG
we take a very small dose of Xanax now - along with Melatonin and it helps us sleep pretty well.
MikeG
sometimes we don't even take the Xanax... and the Melatonin still works well without it.
david
I will ask about Xanax well I need to move on now other tasks today but the short time on for me today was very helpful
MikeG
I've got to run as well.  It was great chatting with you all!
david
Until next time gents, stay vertical
Stewart
Well have a great week, it was very interesting this morning thank you, I really enjoyed it, I’ll have my shower and off the farmers’ market. Mike if you are talking to Mike White and he is passing thru LA on his way home give him my number if he has time I’d be interested to know how he’s doing.
MikeG
take care!
MikeG
will do
Stewart
thanks take care
Gary_KC
Thanks lots for lots of information about Vitamin D today. Take care.