Just J
Distinguished member
- Joined
- Oct 30, 2007
- Messages
- 300
- Reason
- DX UMND/PLS
- Diagnosis
- 01/2010
- Country
- US
- State
- MD
- City
- Havre de Grace
The rate of my husband's progression for past 5 yrs has always been steady. Meaning tomorrow is always worse than today, there's never been any remitting but has always been slow and steady. However, since early summer things are moving much more rapidly. I am getting more scared and the unknown (what's next) makes it even scarier. He has no formal diagnosed but leaning to PLS.
In Aug 2008 Mike began using a cane, last month he got a walker (the kind with wheels and a little seat for resting). So 14 months from cane to walker seemed a bit quick to me.
In Sep 2009 he could force himself to walk (say from rear parking lot to front of office building to second floor doctor's office...with only use of cane). Just 2 months later he is no longer able to make that walk, not even with the walker, must use a wheelchair now.
We had to leave the house last Saturday and he had not been out since about 3 wks before that, we have 2 steps to get into house. I had to physically lift each of his legs so he could go up/down the steps. (I guess its time we had a ramp built)
Getting out of the house now has become a real challenge. Also, he needs a haircut and asked me if I could find someone to come to our home to do this b/c it so hard for him to be up and about. I bought him an electric razor to take care of shaving but what about when he needs more personal care (like clipping toenails or bathing).
It is just me taking care of him...and I have to work 5 days a week. Its all so overwhelming. I fix breakfast for him before I leave in a.m. and make sure he has something prepared for lunch that he can just grab out of frige and eat. I know I should be asking for help but I don't know who to ask, what if any organizations are out there? I don't really feel we are at that point but maybe you need to ask before you get to that point?
Also, go to regular neuro every 6 months. Sept visit had another emg done but was clean. We are going back to Johns Hopkins neuro next month. (we went to hopkins in Sept 08 just for another opinion).
Mike has always been very healthy and active, takes a holistic approach to healthcare, uses a lot of vitamins/herbal supplements. I often wonder if he would be worse had he not already been doing these things.
Anyway, sorry for long post. It's 3:35am here on the East Coast and I couldn't sleep for thinking of all of this.
In Aug 2008 Mike began using a cane, last month he got a walker (the kind with wheels and a little seat for resting). So 14 months from cane to walker seemed a bit quick to me.
In Sep 2009 he could force himself to walk (say from rear parking lot to front of office building to second floor doctor's office...with only use of cane). Just 2 months later he is no longer able to make that walk, not even with the walker, must use a wheelchair now.
We had to leave the house last Saturday and he had not been out since about 3 wks before that, we have 2 steps to get into house. I had to physically lift each of his legs so he could go up/down the steps. (I guess its time we had a ramp built)
Getting out of the house now has become a real challenge. Also, he needs a haircut and asked me if I could find someone to come to our home to do this b/c it so hard for him to be up and about. I bought him an electric razor to take care of shaving but what about when he needs more personal care (like clipping toenails or bathing).
It is just me taking care of him...and I have to work 5 days a week. Its all so overwhelming. I fix breakfast for him before I leave in a.m. and make sure he has something prepared for lunch that he can just grab out of frige and eat. I know I should be asking for help but I don't know who to ask, what if any organizations are out there? I don't really feel we are at that point but maybe you need to ask before you get to that point?
Also, go to regular neuro every 6 months. Sept visit had another emg done but was clean. We are going back to Johns Hopkins neuro next month. (we went to hopkins in Sept 08 just for another opinion).
Mike has always been very healthy and active, takes a holistic approach to healthcare, uses a lot of vitamins/herbal supplements. I often wonder if he would be worse had he not already been doing these things.
Anyway, sorry for long post. It's 3:35am here on the East Coast and I couldn't sleep for thinking of all of this.
