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jdever9

Member
Joined
Mar 25, 2012
Messages
24
Reason
PALS
Diagnosis
12/2011
Country
US
State
IL
City
Springfield
Question:

I know that everyone is different, but I need some help understanding whats happening - I lost use of most of my right shoulder - - can't raise it up or lift any weight, can't hit mouth with food, but right hand works - wrist is sore and I do the exercises and fingers seem to work with little stiffnes - recently ( in march) my left shoulder has stiffened up - my reach and lifting skills are declining - left wrist and hand ok so far - I am at a crossroads here - i am trying to figure out what plans I should be working on - Oh my legs seem fine - just fatigue SO does anyone else have a similar progression - I'm not sure what I should concentrate on, and as the MCA clinic neurologist said- everyone is different see you in three months I'm not sure what will be left in three months - I can read the books - but in actuality I guess i need some I wonder it I will be just sitting here with out much upper abilities at all I'm not crying but I am getting really afraid that I need to be doing something positive thanks janelle
 
Is the MCA (MDA?) clinic that you go to an ALS clinic? If so, they should have occupational and physical therapists that can help you with these kinds of problems, since they are fairly common for PALS. Also, if you would give your location information in your profile, other folks here on the board might be able to point you to local resources.

Your choice: help or anonymity? City and state would be nice; state will help get the ball rolling.
 
Its the MDA clinic I'm in Springfield, IL and we have a clinic right here at SIU School of Medicine. I had all this info in my bio and several times i tried to get into conversations, but no response so thought perhaps this is closed group and thought i should just leave. So after I tried yesterday with no responses, i erased my data. Yes I have been to local clinic twice, the first time they went over the tests the neurologist had ordered and introduced the team - quick run thru - They ordered additional o2 tests and I went back the next month - was put o2 at night and the clinic neurolgist said see you in three months.

Today has been particularly bad, My husband who has CMT disease appears to be headed for his 3rd FemPop, I ran an errand and almost didnt make it home, driving is getting harder and harder. Don still insists that I don't have ALS, I'm getting very tired, even with pills can't sleep for more that a couple hours. So yes please I need some friends and obviously some help. But I'm not sure what I need
Ok thats my story and I'm sticking to it thanks Nell
 
My husband's started in his right shoulder. He started noticing symptoms of having upper extremity weakness with spasms a couple of years before being diagnosed in March 2008. He goes to physical therapy 2x a week for stretching, which helps a lot.

With your husband dealing with an illness too, I hope you have family or friends nearby to help.

Good luck!
 
So sorry you're having such a rough time, Nell. I gave up driving last July (R foot drop) when my daughter moved home to help out. I was fortunate to have a neighbor let me tag along for grocery shopping and some errands before KK arrived. Sleeping through the night seems to be a thing of the past for me too, though mine seems to be just needing to get up to pee every 3-4 hours. I hate getting up in the morning and still feeling tired. Fatigue has been an issue since early on in the diagnostic process. Has the O2 helped at all? I'm not on BiPap yet as FVC scores are still pretty good. Many have said that the BiPap use at night helps them feel more rested in the morning.

There's just so much to take in once you receive an ALS DX 3 months between visits must have you feeling a bit abandoned. I was fortunate to get into a Clinical Trial right after DX so go monthly to clinic for Trial follow-up and can get any questions answered pretty much as they come up. Do you have e-mail addresses for all of the specialists from Clinic? Our Clinic team has been pretty responsive whenever I've needed to contact them and if you have an issue that can't wait 3 months they can try to fit you in earlier.

I'm sorry to hear that your husband is not on board with your DX. PALS need all the support they can get. Do you have any family members close by that can help out? Good neighbors or a Church family? Sounds like you're going to need some help with cooking and cleaning soon. My R shoulder and arm and hand are getting weaker and I now really appreciate help with dressing and hair care. I gave up cooking awhile ago.

I hope you're using the Archives to get some ideas. I always find a wealth of info there on common topics. Please message me anytime.
 
Yes I have been trying to use the archive - also search I have one sister here and she just got married and other than that no family - Because of his disease and leg braces- Don is not a people person and hates doing things with others. It is hard enough to get him to go out to pick up his own Rx's, much less go any where or with any one - This is my fault, I have taken care of him for the last 15 years and spoiled him becuase of his disease many surgeries, additionally NASCAR is now on - so it is either races, westerns, randolph scott or the military channel! I have no idea what you mean by a clinical trial followup - unfortuantely the mda dr is nice, but I can't understand half of what he says we have neighbors, but he does not get along with them (he is 73 and in a lot of discomfort most of the time) or get him to church - He gets upset when I am not home to fix food, for company. And like I said, I allowed the situation to become the norm and at 73, it is rather difficult to change him OR ME. I will keep reading other posts and thank you for the suggestions Nell
 
Nell,

Please always remember, we are your friends and we are just one click away. And if you don't feel like talking publicly, feel free to pm anyone of us. We also have a section marked other, about half way down the page. We have several sections there. These include: Christian readings, songs, psalms, happiness and prayers. Tea, whine, rants and raves. And some of us meet at the Pub for drinks and music. These are places to go to forget about our lives for awhile (gee, there's a song in there).

You got double whammied for husband to have Charcot- Marie also. He may not want to believe that you have it as you said, you're the caregiver to him for 15 years. Eventually, he will come around and I pray it will be sooner than later.

Remember 1 click,
 
HI Nell

You need some help. Contact the ALSA. They will have a list of doctors that specialize in ALS--rather than the broad spectrum of the MDA. There are occupational therapists and PT that might be of some assistance.

Most here have presented with distal weakness first--that seems to move up. In that, you're a bit luckier than some in that you can use your hands for now.

But--to take care of hubby--you have to take care of you. I'm assuming you have Medicare (if not--get it immediately). There are assistive devices that can make things easier when you have limited use of your arms--grabbers and the like for now.

If your husband is in denial--he's just going to have to get over it. You need help. The ALSA will be able to point you in the right direction. I'd imagine you've very frustrated--I certainly would be.

I can't seem to get posts with a link approved, or I'd put in some places to read.
 
You sound much the same as me, used to be right handed too, now it is hopeless, they told me to keep bending my fingers and wrist like exercising every joint with my left hand
 
Hi Christopher Robin, and ALL I do the same hand execises with the hands. Last night I think I cooked a whole dinner for the last time - meatloaf, scalloped pot, gr beans and by the time I was done, I was too tired to eat - I had spread it out, doing one thing, resting, then the next. But its time start working on alternatives.. And we are both lucky that we are both retired. So we are relieved of that stress. And I can still stay home on my own.
So all you folk are right, and I am very thankful for what still have and need to focus on that.

I am doing a week long food and actitivy log for my Chgo appt on the 19th - I can't believe how much nothing I do. AHHH. So I called several friend who hate their check books and offered to balance their accounts in trade for a meal or 1/2 day help decluttering my (I was an acct - no taxes though)

Its small start I can only handle two accts right now, but you do what you can do right so thanks guys I don't think I would have come up with this without your encouragement. So if you want your accts straightened, come to springfield, IL and I'll show you the Lincoln sites.

Nell
 
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