Sorry to hear things are moving so quick. We still haven't met. Please feel free to contact me anytime. I am still pretty mobile. So if you need anything. Please call my phone number is 705-734-0704.
thank you for that beautiful message, I hope PM becomes available for you soon as I found that a wonderful extra dimension to the open forum.
I don't know if a rapid progression is easier or harder, all I know is that we lose all control with this disease except the decision on how we will treat our PALS. The support here is so important and wonderful.
Thanx for your message.
Yes, sex is tough. At some point a caretaker may withdraw from intimacy. The Pals may need physical comfort more at just this point.
For men the instinctual need to reproduce as you know you are dying is especially hard
They are okay. Initially I was more impressed, as I was able to meet with a few of the doctors and specialists and they seemed to be doing a lot for me. In subsequent visits, even as my condition was worsening, they seemed to do less. On my last visit, only Dr. Zinman was there and I only saw him for about five minutes. Myrna is very helpful, as she has had to fill out a lot of forms for me. In the end, you have to look after yourself and make use of all the resources available. In addition to the ALS clinic, there are ALS support groups, online networks (such as ALS forums and PatientsLikeMe), health and service providers that you can get from the CCAC (a personal support worker, occupational therapist, physiotherapist), and support from your family physician.
Hi Amy, glad to meet you. Yes the American system is quite a bit different from ours, but I have had to learn about it as my husband is a Texan. We married July/11 in Texas and he was going to immigrate to BC, so we were going through the immigration process. We lived apart, as that was the quickest way for him to get his permanent residency, and he could not work in Canada. In Jan/12 he did his immigration physical and passed with flying colours, with the doctor saying he had never seen a 52 year old in better shape. Here we are 1 ½ years later and Tim is almost a full quadriplegic, but his speech has been spared. We have so much to be thankful for, as he is here with me in Canada, and has US veteran status which means they pay for all equipment that is needed, along with several other grants. I am on a leave of absence as and ER nurse, to care for Tim, and have our adventures. God has blessed us in spite of this horrible disease. Chat with you soon.
My name as you might have seen on my posts is Vince. I was very interested in your post as I live in the Cundles and St Vincent area. I'm still in the diagnosis process, possible ALS but already on riluzole. I get the latest results on April 7th. I would be very interested in meeting you. If you are open to this I will provide contact info.