Giving thanks

[KateO]

A tradition around our Thanksgiving table is for everyone to say what they are thankful for. This year when it came to my turn I simply said, "I am so thankful to be here today with all of you". And, I was.

The gift of ALS to me is it really does make me appreciate the joy of living every single day.

[vmd]

Kate,

Yes, very well put.

[John V]

I live in Melbourne, Australia, and was given a confirmed diagnosis of ALS (called MND or Motor Neurone Disease in Australia) on Nov 3, 2007. Three days later I headed off with three friends on a flight to Santiago, Chile, from where we took a 14 day cruise south through the Chilean Fiords and glaciers - absolutely stunning.

Whilst walking is difficult my hands are still working well. I am a professional pianist and want to give a concert for friends while I am still able. My neurologists suggest I should do this within the next two months as there are all ready signs of problems with my hands, mainly the left one. I already have trouble operating the piano pedals.

So, along with good friends, I will find a suitable venue and in January we will have a grand concert. Various musical friends will contribute on their own instruments and I will do some two piano items with another good pianist friend. It will not be a morbid occasion in any way and we hope we can repeat it in the future. But as everyone on this forum will have heard, if you want to do something, do it now and don't put it off.

I will post future reports of the concert for all to follow. Hopefully we will make a recording which could be made available to anyone interested.

[Al]

Thanks for the generous offer John and welcome to the forums.
AL.

[swmn]

JohnV I am so proud of you for cherishing your talents and getting this done - my friend who has ALs was an INCREDIBLE singer; he began to lose his voice and it is so sad that once it was less than his best - he quit singing all together - this was so sad in my view. Please continue to hold onto every note you can play - even if it less than your best - It is your gift and spirit -accept the gift and use it even if it is different than your original greatness as a pianist - playing piano with your hands and filling in the missing pieces with your voice / mind will give you strength. BRavo JohnV!! Bravo

[Thumbs Up]

Hi swmn, Thanks for the email that was very nice of you. It sure gave me a warm feeling. And I say Bravo to you. You are doing wonderful things for people. Give yourself a big hug, Norma

[mamaoftwo]

Kate, did you ever read that this was also a tradition in Christopher Reeves family. Apparently, he celebrated Thanksgiving with his family just after his release from hospital. He said that as he sat there paralyzed, his first thought was that it would have been better if he had died in the accident and then later than day, when they did the 'round the table' thing, his then 3yr old son said "I am thankful for daddy". That gave him his reason to go on.

[patricia1]

Mamaofftwo I havent been on the forum Have you been dx yet. I remember you were being tested how are you doing. Pat1

[hboyajian]

John, DO make a recording. Your family and friends will treasure it for the rest of their lives. It will mean a huge amount to them to be able to listen to you play when you cannot do it anymore in person. Someone can take this on and make sure it happens if it is too much for you to coordinate yourself. Holly

[patricia1]

Hi everyone Yesterday i went to see my grandson in a school winter show.He was the MC there and at 10 years old a future star.
As I watch the show with my husband daughter husband and granddaughter I realized what life is about and how lucky I was to be alive.
Als has given me the gift of enjoying life to the fulless. I take nothing for granted. And I no longer sweat the small stuff. Pat1

[Al]

Well said Pat. Good advice for us all.
AL.

[John V]

I am aware I have not posted again since December 2007. The concert did go ahead on 19th January with a lot of help from my friends. There were about 600 friends and family present on the evening and it was a great success. It took an enormous amount of work in preparation and rehearsal but was well worth it. The concert was recorded on CD and DVD, although I haven't been able to bring myself to look at it personally.

The succeeding months have rapidly taken their toll on my health. There can be no future concerts, as I had hoped. I am now unable to play piano. I can no longer walk or stand and use an electric wheelchair or mobility scooter. However my days are kept busy with one thing or another and I go out as much as possible to theatre or sporting events. I have a wheelchair-accessible vehicle which makes life easier.

Friends have been wonderful and I find myself catching up with old friends whom I haven't seen for well over 30 years. This very week one such friend will arrive in Australia from France, where he now lives, just to spend a couple of weeks with me after 36 years. That's true friendship!

Losing my independence has been the most difficult thing. It is not easy having to ask for help when you can no longer do simple things yourself. But people are very generous with their time and efforts.

As my lung function is rapidly diminishing, I don't imagine I have too many more months left, but I will go enjoying life as much as possible in the meantime.

[CindyM]

Hi John- thanks for sharing. This disease is one of adjustments, and sometimes those adjustments come too much, too fast! :cry: I am glad you have the support of friends, though. I used to think without health, everything was lost, but now I see without friends and family, life is greatly diminished.

[spoiledali]

hi,

Thanks for the email that was very nice of you. It sure gave me a warm feeling. And I say Bravo to you. You are doing wonderful things for people. Give yourself a big hug,

very well put.

A tradition around our Thanksgiving table is for everyone to say what they are thankful for. This year when it came to my turn I simply said, "I am so thankful to be here today with all of you". And, I was.

The gift of ALS to me is it really does make me appreciate the joy of living every single day.




tnkx once again

[bossman]

Im reading this but have t be truthful about things.Me Im not thankful at all about haveing this im mad about things.

[Al]

We've all been through that stage. You're not alone.

AL.

[CindyM]

Agreed. Everyone can relate. Myself, I love being in a snit, especially if given perfectly good cause to be so. But those who learn to put it aside and look at things in a different light are ahead of the game, IMO.

[bossman]

get by this humm dont know if I can get by it.Everytime I try to stand,get out of bed,shower and so on this reminds me of all this.I hurt 24/7 another thing so how do you get bu this???

[rose]

Im reading this but have t be truthful about things.Me Im not thankful at all about haveing this im mad about things.

Bossman, I think its completely normal to be angry, and what's more, its OK to feel like that. You'll find your way. You could read all of the uplifting, encouraging, "fight the monster" words that have ever been written, but until you work through what you feel now, these words wouldn't mean much to you.

You may not be "OK", but, eventually you'll come to terms. Really.

[hopingforthebest]

John, hope you have a wonderful visit with your good friend! Loved reading your post.

Bossman, you are going through a very tough time. The beginning, I think, was a difficult thing to accept, to understand and is down right scary at times. My husband, unlike me, had and has NO DESIRE, to read about HIS disease, discuss the disease with other ALS patients or go to group meetings. His attitude is, IT IS WHAT IT IS.
Everyone goes through this process differently. As the nurse from Hospice tells us, no two ALS patients are the same. They are all different. Your biking was your life! In my husbands case, playing his Base was his favorite thing to do. He was never much of a tv person but he watches tv too much now, I think. But.........I hear him laugh at the shows he is watching and now, he likes cooking shows! Go figure!

I hope, Bossman, in time you will find something that you can do that will make you happy too! I will pray for you tonight, I promise.

Patty :-D