does my progression seem fast to you?

[landofsmiles]

It does to me and I feel like I could be only weeks away from being paralysed.

My first symptom was almost one year ago when I started to drag one of my feet when walking and my walking became more difficult. I was diagnosed with A. L. S. at the end of September. It frightens me how quickly the progression has been. For about two months now I have been in a wheelchair full time so cannot walk. Both my arms are now very thin and have very little muscle left. My arms are getting weaker and weaker. I can still move my right hand a bit. My left-handed getting more weaker by the day and I cannot feed myself now. I cannot answer the mobile phone because I only have the strength to hold it to my ear for just a few seconds.

I am beginning to have breathing difficulties. My voice is weaker and my breathing laboured and I cough a lot.

I am lucky that I live somewhere which is relatively cheap for me so I have got 2 ladies in to live with me and take care of me and it is working OK so far.

One thing that has helped me a lot I have found is massage. I have at least one hour a day thai massage. Fortunately one of my live in carers is trained.

I take Tramadol at night for pain. Mainly it is in my lower back. I also take paracetamol which I have been told works well with the Tramadol. I find I am most comfortable sleeping on my side with my legs bent. Also I take alprozolam (xanax ) to help me get to sleep. Also I take sirdalud which is a muscle relaxant. Those are the only drugs I take now. I did take rilutek for two months but didn't bother renewing as I couldn't justify the cost.

 

[fba75]

Progression always seems too fast for us. At some point, we think we are doing well for quite some time but at other point, everything seems to fall apart very quickly.

Breathing and feeding problems are to be looked at carefully. Do you have regular nocturnal oxymetry tests? Easy, not expensive and useful to detect sleep apnea. Also, beware not to lose weight, this was at this point things got really ugly really quickly for my wife.

I wonder about thai massage, I do not know those massages very well but I thought they are quite strong. If this is the case, I m not sure it is appropriate for ALS patient. The purpose of kynesitherapy in ALS treatment is to keep mobilising the limbs and relaxation. I was told deep muscle massages may do more harm than good. If you feel it is working well for you, your caregiver is probably doing it right for you, but you should ask your physician about it.

 

[trfogey]

The best way I know to compare progression rates is to use the FRS recording tool at the Patients Like Me website. The graphs over there seem pretty accurate.

And, to answer your main question, I'd have to agree with your self-assessment. Your progression does seem to be fast, and I'm very sorry that things are moving so quickly for you. I wish there was something that I could advise you to do that would slow things down, but I don't know of anything.

Good luck.

 

[LauraA]

Hello,
I am so sorry about your diagnosis and your progression. You sound almost exactly like my father, he was diagnosed in October of 2010. Last May, of 2010, he could get up on his roof and make repairs to his home. Now he is bedridden in my home and cannot move his left side at all. I wish he had access to your messages, they sound wonderful. This is a horrible disease, but try to enjoy the small joys in life, like I tell my father---do something you enjoy to do. I encourage him to watch his old 1940's musicals and he gets a laugh out of watching them.
My dad takes a muscle relaxer to help him at night. Please know that this is such a wonderful website and you ARE NOT alone.
Please take care and God bless.

 

[Miss]

You quick progression sounds like my husbands.

 

[SueG]

fba75, Thai massage is not deep tissue massage (I understand your concern with that). In my experience it involves a lot of stretching and gentle muscle movement, paying attention to the body's meridians, and the practitioner should be tuned in to you anyway. My niece has been learning it, and gave me a WONDERFUL Thai massage when she was home over the holidays. I recommend it -- though I think it's not that widely available here in the states yet (or at least not in rural areas!).