Emotions

[Doris Little]

Hello, I have spoken on this forum before. I was dnx with MND in August and confirmed in December. My husband and I are very busy people and thankfully have lots of great friends. To keep our minds of things we socialise all the time. Since being definately dnx I have had two devasting days where if I could of if I knew how to successfuly commit suicide. I am going to the doctors tomorrow to get anti depressents as I am scared that if I have one of these emotional melt downs again I will succeed in killing myself. Like us all I fear the future and will miss all the things I love to do in life - Sailing and Skiing. I was a fit and active 56 year old. I cannot imagine my life without at least sailing in it. The MND is in my legs and the walking is getting harder. I guess when writing on this forum I should try to be positive, but I am finding it so hard to do so. It is the unknown that is so hard! :-(

 

[Al]

Hi Doris. I've been dealing with this for five years and can relate to how you feel. It's not easy but you can still do a lot of the things you used to do but with some modifications. When you have a few more posts you'll be able to view profiles. Click on my name and have a look at the pics of me sailing this past summer. I wasn't able to help out but sure enjoyed the ride. Try to focus on the things you can do, not the things you can't do. Don't worry about not being cheery, no one judges here and a lot have walked in your shoes. Take care.

AL.

 

[olly]

hi doris

many people feel this way when they first get a diagnosed,its natural human emotion.
i used to be on anti depressants as i was so depressed like you not being the active person i used to be.
you are going through the grieving process of loosing the person you were,for most of us this settles down in time and we learn to cope with things one day at a time(you are still entitled to bad days)
my hopes for you are a slow progression and the meds work so you can continue enjoying each day

 

[John1]

Hi Doris,

I empathize with your despair over losing sailing and skiing. I loved both of those. I think you can say goodbye to skiing but not so sailing. I was diagnosed in 2000 and sailed until 2007 thanks to my son making a perch for me on our boat so I could take it out alone (with my trusty dog). A few days ago my seatmate on a plane coming from Denver to Montreal happened to be an occupational therapist who specializes in ALS. She is one of those overchievers who has ideas and acts on them. For example she is preparing to establish and run a home for PALS when she retires in a few years. But to the point, she has established a sailing centre for the disabled in Montreal where even quadraplegics can sail using sip and puff technology. She says these sailing centres are becoming popular worldwide - note the sailing activities at the recent paralympics in Beijing. Australia produces some of the world's greatest sailors so I would expect you have one already; if not, perhaps some prodding and assistance from you would get one going.

John

 

[vmd]

I am including sections from a study that I found at Science Daily because it has some bearing on PALS here. The findings may contradict some biases regarding how we view those that are suffering from severe illnesses:

Science News
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Many ALS Patients Have High Quality Of Life, Studies Find
ScienceDaily June 24, 2008

Patients with amyotrophic lateral sclerosis (ALS) experience an astonishingly high quality of life. This disease leads to progressive muscular weakness and the clinical course is always fatal. In spite of the continuously increasing loss of control, studies performed by Birbaumer et al. (Tübingen) and Ludolph et al. (Ulm) and reported in the current edition of Deutsches Ärzteblatt International have shown that many ALS patients are satisfied with their lives.

The authors showed that the quality of life of ALS patients does not depend on the severity of their physical restrictions. In contrast, it was found that patients who have to be given artificial respiration are more satisfied than patients for whom this is not necessary. Although an outside observer would have expected ALS patients to be depressed, as the disease is so serious, this was only the case for 10% of patients. This means that the proportion of depressive disorders is only slightly greater than in the overall population… The present studies show that the quality of life of patients with a fatal degenerative disease does not necessarily have to differ from that of healthy subjects.
In an accompanying editorial, Professor Hans Förstl points out the significance of these studies . Förstl commented that the suffering is seen by the observer and not felt by the patient.

Journal reference:
1. Dorothée Lulé, Sonja Häcker, Albert Ludolph, Niels Birbaumer, Andrea Kübler. Depression and Quality of Life in Patients With Amyotrophic Lateral Sclerosis. Deutsches Ärzteblatt, 2008; 105(23): 397-403

 

[Jennifer51]

Hi \doris, I agree with Olly, I think we have all been there...I thought suicide but have been too afraid to go through with it...but I still think it sometimes. I was told by those who thought they knew better that I should take anti depressants, not once but twice...and both times against my better judgement I took them...for less than a week each time...my family agreed with me that they made me much worse...So hang on to the hope that you will get over the worst of the depression in time...and you are in good company.

 

[tmasters]

Hi Doris,

Google "Nick Scandone". He won a gold medal at the 2008 Paralympics in Beijing in sailing and he had ALS. He just passed away, but he was sailing up to the end!

-Tom

 

[Doris Little]

Thank you

Thank you for all your support with my emotional problem. Just to fill you all in on the worst year of my husband and I's life, 2008. It started with my broken ribs, followed by sinking a brand new 43'Beneteau yacht in far north Qld and having to be rescued. We had planned a two year journey. Then Tim had tumours removed from his bladder for the fourth time. This was followed by chemo. During this time I was dnx with Mnd. To finish the year - New Years Eve I was pickpocketed on a tram by a International ring of Bulgarian gypies and lost my purse with $500.00 in it, not to mention having to cancel all the c/cards and worry about identity fraud. Thank god the gypsies have been caught. I am not sure how far my drivers and boat licences have gone. I would like to think 2009 will be better for us. I have still been sailing and can still steer a yacht. My husband and I probably will purchase a smaller boat for us to sail around Port Phillip Bay Melbourne in. Many of my friends still take me on races and cruises so whilst I can do it I will. The balance of course is a problem. I also have a friend who is a disabled sailing coach, so you never know I may head up that path.
Three of my friends are off to Japan followed by America skiing and my son is skiing in France as we speak. I would do anything to be there with them all.

 

[Doris Little]

Al

Hi Al, I would like to get into your site but it tells me that I do not have permission. I cannot get into anyone elses site either. Can you help me please

 

[Al]

You should be able to now Doris. Let me know by private message if you can't.

AL.