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Dan1

New member
Joined
Nov 8, 2015
Messages
3
Reason
PALS
Country
Uni
State
CA
City
Forest Ranch
Hello everyone,
I began having weakness in my hands about 3 years ago; noticed first when I had difficulty sliding the slide on my 45 semiautomatic Smith and Wesson. Cramping began about 2 years ago. Fasiculations began in April 2014. Weakness and muscle wasting in hands got worse and by January 2015 I saw a local neurologist who did an EMG, MRIs, etc. He said possible ALS. It wasn't unexpected since I had all the symptoms for so many months. I am a family physician and I have cared for PALS over the years. I work 4 days a week; hope to work till June to complete 50 years on the job since med school graduation.
Next I was referred to UCSF where Dr Lomen-Hoerth, ALS specialist, agreed and started riluzole. Due to the long drive to San Francisco I decided to transfer my care to Sacramento Multi-disciplinary clinic where Dr Oskarson repeated the EMG and nerve conduction tests. He says probable ALS. So far my involvement is all lower motor neuron. I have lost strength in hands, arms and shoulders. I stopped doing surgery when my hands became weak a year or two ago. I can still type but have to hunt and peck where i used to do full keyboard. So far I don't need bipap but will be re-evaluated in January. My legs are strong; a friend and I did an 8 mile overnight hike in Caribou wilderness on Labor Day.
As i mentioned in my first post going on a gluten-free diet has essentially stopped my cramps.
We have a great monthly support group in Chico,CA, sponsored by the Greater Sac ALSA.
Sorry to join you on this journey but I appreciate the support you give to each other.
My patients are supportive when I tell them what is happening.
If there is a bright spot in my story it is that I didn't get this horrible disease when my 4 children were young. i am nearly 77 and appreciate each day when i awaken and can still get up on my own. My wife is supportive. We take life a day at a time.
Dan
 
Sorry to welcome you here, Dan.

It'll be interesting to have another medical professional around. Would it be safe to assume you're plugged into the various 'things' being researched?
 
So sorry to extend our welcome to you Dan.

I sincerely hope you can work through until June and reach that milestone!
 
Welcome, Dan. Thanks for the details. Looking forward to hearing you share with others. --Mike
 
Welcome Dan. Sure you'll have lots to contribute with your background. Interestingly, my husband was told at 72 that it couldn't be ALS, cause he was too old!
You have a great attitude-one day at a time! Sure you will find support and information here that even many doctors aren't aware of. Donna
 
Welcome Dan. You will receive a lot of support here and I am sure you will also be able to give support. Best of wishes and I hope you can continue what you love doing for a long time.
 
Welcome Dan. As you mentioned there is a lot of support here. Your attitude is wonderful and I join Tillie in hoping you make it working for a full 50 years. I'm really sorry you joined this group. It's important you don't over tire yourself with those long hikes as it's hard to come back from them.
Additionally, I'm glad you have all that support.

Sherry
 
Welcome Dan. Sorry to see you here. I hope you find as much comfort and information here as I've found. This is a great community.
The gluten free diet has generated a few discussions on the forum. Glad you've gained some relief from symptoms with it.
 
Dan, sorry to have to welcome you here, but I'm glad you found us. It sounds like you have a wonderful attitude, and it will make this journey much easier (at least in the early stages--I can't speak for later yet). I hope you are able to continue practicing until June! My husband recently tested negative for Celiac Disease, but I'm working to reduce (and hopefully cut) the glueten in both of our diets. Two days off and I had a muffin, and my stomach is not happy with me. There's a sign! My step brother, also a physician, swears by a gluten free diet for most people, as even those not allergic can be sensitive to the stuff.

Again, welcome to our club. Please invite your wife to check in with the CALS here--we have some wonderful PALS and CALS.
Becky
 
A sad, but warm welcome to this forum, Dan. You are in good company here.
 
Welcome Dan. So sorry about your diagnosed but I know your input will be valuable to all of us. My husband was diagnosed in September and he is 64. We are also grateful that the kids are grown and on their own. God bless you!
Michelle
 
welcome to the family dan! glad you found us and look forward to getting to know ya. yea my kids are all grown and my grandkids are half way but that don't make this nightmare any less troublesome. one day at a time. chally
 
Many thanks to all of you for your warm welcome to the group.
I find that I need more rest and am going to bed earlier than I used to.
Buttoning my shirts has become more difficult even with the button "hook" I made of wire in my shop. My wife helps me sometimes. I put on my shirt that has snaps and that was easier so last week I went to a farm supply and got some shirts with snaps. But the snaps were too hard to do so I returned them and got out some old sweaters. That worked better; no buttons! So I bought some sweaters to wear to work.
A few months ago i began having trouble clipping my nails due to loss of control and strength so I screwed the clipper to a small walnut board. That works for now. Today I saw a battery powered fingernail grinder on tv. Has anyone tried that?
Dan
 
> Has anyone tried that?

I saw that and wondered same.

I use the toenail clippers; they're easier to hold and the longer 'handle' gives better leverage.
 
Dan, you might try velcro on the shirts. Have the buttons sewn on top of the button hole and then have velcro dots sewn behind that and where the button used to sit. It's a bit of work, but you could still wear your button shirts that way.

There are companys that sell shirts with velcro, but I'll bet they are not as nice as the ones in your closet. My husband has gone to stretchy athletic pants and polos, or I'd have adapted his shirts.


I love your creativity with the clippers!

Becky
 
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