ALS , motor neuron disease

Hello there . I just wanted to tell anyone who understands how I feel that 2 weeks ago I was diagnosed with ALS , motor neuron disease . Not knowing anything about this before I have it meant a big frightening shock for me and my family . I haven't dared to open the folder I was given past its first page . The neurologist has started me on the tablet Riluzole . I have been getting weaker and had fallen a couple of times , and choked on food . At new year 2009 however I started with worsening swallowing and added speech problems .

[M752]

I do not have ALS, but I wanted to say that I truly sorry that you have to go through this.  I believe the Lord will provide you with strength.  

[Dr Vinod]

No cure has yet been found. However, the Food and Drug Administration (FDA) has approved the first ************** for the disease: Riluzole (Rilutek). Riluzole is believed to reduce damage to motor neurons by decreasing the release of glutamate via activation of glutamate transporters.

Other treatments for ALS are designed to relieve symptoms and improve the quality of life for patients. This supportive care is best provided by multidisciplinary teams of health care professionals such as physicians; pharmacists; physical, occupational, and speech therapists; nutritionists; social workers; and home care and hospice nurses. Working with patients and caregivers, these teams can design an individualized plan of medical and physical therapy and provide special equipment aimed at keeping patients as mobile and comfortable as possible.



Continue your treatment near the neurologist and take care!

[pippylongstocking]

Thank you so much for your caring words xxx

[pippylongstocking]

Hello , and thank you so much for your reply , I now have my care team looking after my future and I see my neurologist this month again . As my swallowing is getting worse I fully expect he will again mention the advantages of having a PEG inserted soon . I'm rather scared at this , it seems as though it spells another stage nearer the end .
I can only take the expert advice given to me and go with that advice , I know they have dealt with this disease before , whereas I'm pretty much finding more out but how it is to have it each day , and each week something else disappears , this week it was my ability to kiss my liitle great-neice on her cheek , and I can no longer move fluid round my mouth to rinse my teeth . I have found I can still find ways round things though and remain adamant that ths won't get me down , I'm still facing each day head on .xx

[ggreg]

Dear Pippy Longstocking,
Gosh, I hear you, what a difficult diagnosis to hear, and worse yet, so unexpected in a life going along so normally.  I know, I fell apart in my 50s, and I just could not believe that all the stuff I had planned to do, hopes and dreams, were taken away.  

I don't know if it would help, but I imagine there are some ALS websites that have forums that sufferers participate in, and that might give you some purpose to go there from time to time, and talk to those folks.  But could be that might become tiresome, to focus so much on your condition, so now might be the time to finally learn how to play music or paint, or any hobby thing that you've put off in the past, that you might still physically be able to do.  

For example, most computer Windows machines come with a "Paint Program," look for it in the list of all the programs you got, and give it a shot.  It has given me a lot of peace to goof with that thing.  Also, maybe some of the younger people in your family can tell you stuff to try out, not only on your computer, but just kid's stuff... they are experts on how to have fun.  You could also find some book clubs online that list many preferred reads in different categories... I like nonfiction and biographies, takes me out of my earthly realm to a whole another world, right in the comfort of my home.

I do hear that folks who are in bad health do very well with a new pet.  Maybe you already have some, but if not, a new kitty or small puppy will give you a snuggle and some companionship, they love endlessly... your other family members can offer to take over the regular duties of feeding and such, and you can just enjoy the company of a furry friend.

And not to give you false hope, but many people live with ALS a relatively long time, which I suppose you already have read about.  About your swallowing situation and falling and just the whole ball of wax, I hope your physicians will consider giving you a drug that will help you "feel better," something that will boost your mood, so you can experience this decline in more comfort.
GG

[pippylongstocking]

Hello gregg , thank you for your lovely kind reply . Saw my neuro yesterday and started on Pyridostigmine too now , and VitC . To have a spiro arranged too . Also had bloods taken . So now on those as well as Riluzole , I should soon be running a marathon ...lol
You talked about finding a new hobby or a new interest . Not really that active any more I must say , and having been very active before there's not much left to interest me within my physical capabilities . When I was diagnosed in March I already had a 7 year old labrador and a new 6 month old Jack Russell puppy . I'm finding the puppy too hard work at times , they need so much attention . My neurologist has asked me to get rid of the dogs to someone else to care for them but where I can still visit them ,  but I honestly couldn't , they're part of the family . xxxxx

[ggreg]

Hey Pippy,
Score one for the pups!  Hooray, keep 'em around, I agree with you.  Get a tube of tennis balls, throw them (or push them off the bed) for the Jack Russell.  Hmmm, you ain't gotta be physical to have a hobby, so be open to fun that ain't physically demanding.  I got laid up, too, and was temporarily addicted to Soduku puzzles, drove me nuts!  And I still crash out a few sketches and paint program drawings.  But I know, it's all so BORing, don't know what folks did before TV.  Thanks for the reply!
GG  ooooo