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AKmom

Senior member
Joined
Jun 2, 2010
Messages
608
Reason
DX UMND/PLS
Diagnosis
11/2009
Country
US
State
Alaska
City
Wasilla
After a pretty good run of plateau, I seem to have some excessive progression. I had gone to California back on the 10th of Jan. to take care of my ailing father, who passed away on the 17th. It was like I was on adrenaline the whole time. He was not wanting any doctors involved or hospitals or hospice. I had to talk him into letting me come and 'hang out' with him.

After he passed, there was an additional week and a half of taking care of his possessions before coming home. That was on Tuesday last week. I managed to barely get up the stairs a couple times then woke up on Thursday that same week, not being able to do the stairs at all.

My legs are shaking when I walk and at times I catch myself using furniture or walls. I have been using my pwc out of the house and am sitting most of the day in my recliner or bed. I am having a hard time getting my pants on and start breathing hard from exertion when walking or doing things that require use of my legs.

So I guess I am going to have to accept these latest developments. I am sure that I overdid taking care of dad and the stress of it all might have pushed me over the edge of the plateau. My spaticity has gotten out of control too. So I am going to up my meds again. I had cut back last summer when I knew we were loosing our medical insurance. As luck would have it, we pay less now then when we had insurance because of a discount card we have for perscriptions that we were not allowed to use with the insurance.

Good news is that my mother wants to gift to me a stairlift for our stairs and I will be able to continue to work part time in my office upstairs. I am looking at the Bruno line of either the Elan SRE 3000 or the Elite SRE-2010. I did happen to find a supplier in Anchorage, and they should come out for free to measure and give me a quote. Its going to be expensive though.

I was denied both SSA and SSI. They said I didn't have enough points for SSA and that because of my father in laws death and my husband owns half a house with his brother, we do not qualify. At this point I do not care. The government is nothing but a pain in the tuckass and God is going to have to continue to take care of my needs. I just do not need to add anymore stress.

Hopefully hubby will get a good paying job soon that has benefits.

Ok, so that is how it is. I know you all can understand where I am coming from. No one else understands as well as you all. Thanks for listening!
 
Joyce,firstly i am so sorry to hear of the loss of your father,my condolances to you and your family.
I personally think you have done way too much and that is the cause of your decline not progression.
We get into a comfort zone with day to day life,as soon as we do more than usual we pay for it.
With progression things get worse and harder despite us sticking to our comfort zone.
For instance my leg spasms have been real bad this past week and have not had much sleep but i have not done anything more than i usually do........just going through a bad spell.
You need to rest,it may take some weeks but hopefully you will be back to where you were.
Stress can definatly make symptoms worse also so please try to get plenty of r+r.
Keeping you in my thoughts dear friend.
 
I agree with Olly, I just had a 2 week stretch of stress with my mom having open heart surgery. I spent a week at the hospital and stayed in a hotel, There was LOTS of walking and a bed of bricks and before you know it I was a mess with muscle cramps tremors and extreme exhaustion. I have been home a week and am slowly getting better. I hope you get some serious rest and feel better soon.

I am so sorry for your loss. Hugs and strength to you and your family.
 
So sorry about your father. It seems many of us are having a hard winter this year. I too had a rapid seeming progression - but also knew I had gone thru a ton of activity and stress for several weeks. I crossed my fingers, hunkered down, and rested and am feeling and doing better. I hope if you rest.you'll feel better as well. It's an awful feeling when it occurs that fast! Glad to hear about your stairlift, that will be great for you to have.
 
am sure u will come through this, akkers...its the way it is init...best to you, johnny
 
Sorry to hear about your father. I have Bulbar PLS. Progression was slow. My legs started being affected after 5 years. I went from a cane to a walker to a scooter and then PWC over the course of 18 months. I had dual rails installed on the stairs and it helped for 6 months or so but eventually I could not get down safely. Going up was easier.

I have stairs that turn so I needed two straight stairlifts. I needed to transfer in the middle. With my progression I was not sure how long it would work. I also looked at one that turned but it was expensive and I was still not sure how long it would work. I looked at selling the house and buying a condo but at the time houses were not selling. I eventually got a Bruno platform lift. It carries 700# so I can use my PWC in the lift. It was just a little more than a curved stairlift.

Look at getting a used one. I found one in Anchorage.
 
Joyce, you've been through a horrible ordeal! Take time to rest and recuperate. I think you'll find some relief when you do. What you went through with your father would be enough to debilitate a healthy person.
 
Thank you all for your support and comments. I am resting the best I am able. Life still goes on though. Today we had to pull the shower chair that was given to me a couple years go, out of the garage and clean it up so I could use it. That was an ordeal in itself. Then I had to go to a meeting with a teacher advisor for my daughter. Its snowing out so I couldn't use my pwc. Ended up using both arm crutches but still had a hard time getting from point A to point B. Thought at one point my hubby would have to carry me! He had to physically lift me to get me into the suburban. Not sure how many more times he will be able to do that without hurting himself!

I can only pray your right Caroline, about things improving with rest. So far, I have been sitting on my tuckass for the past week pretty much all day every day, and I only feel weaker then the day before. But time is always the main factor in these things, and it seems I have plenty of that for now. So we shall see.
 
Not sure how helpful your ALS Society is, but I was able to get a transport wheelchair on loan. It has the 4 small wheels and someone must push me, but it's not too heavy and folds up and fits in the back seat or trunk of a car. All winter we've carried it in the trunk as if we get somewhere and it snows my walking isn't good enough to chance it in the snow. So, we just pull out the transport chair and wheel me to the car or wherever. As I can still stand and walk into a building and get in the car, it's worked well. Keep resting! :)
 
the local (well, in anchorage) MDA/ALS people basically told me they do not support anyone with PLS. That is summing it up. However, I might inquire at two local businesses here (in Wasilla) that loan things out to people in need for disability needs. Thanks for the idea!
 
Joyce - So sorry to hear of your father's passing. I agree with those that have said you have overdone your physical capabilities; however, sometimes this cannot be avoided, and I admire you for the help you were able to give your father. I hope, with a couple more weeks of rest, you will see improvement.
 
Stress will do that to you Dear One. You are in my thoughts and prayers Joyce.
 
Some docs will diagnose PLS under the overarching ALS caption. This gives you an automatic disability approval with the social security folks....no drama; they can be very helpful.

Get some all day rests in. At least some of it will come back.

- Jerry
 
Update: On Thursday my bp spiked for absolutely no reason. It went higher than I ever had seen before. I also had a tight chest for two days but thought that was a combo of indigestion and spasticity. But because my bp was getting higher as the day went on and I was at rest, we thought it best to go to the urgent care just to make sure I wasn't having a coronary. Long story short, this doc convinced us that he thought I had a blood clot in my lungs and could die at any moment. So he passed us off to Providence hospital in Anchorage. After an hour drive and EMG, xray and blood work, they say yes your bp is high, probably from stress! The only stress I was under didn't happen till the id i ot doc said I could drop dead at any minute!

I have come to the conclusion that my father might have had the correct assumptions about doctors. At least in my case, they like to just jerk around with you and see how much money they can get squeezed from you! The hospital did nothing that the urgent care doc could not have done. Matter of fact, I ask the urgent care doc if he could see a clot in an xray and he said "no you need a catscan". The cost would have been half the cost.

So nothing was done other than a toradol shot for the migraine I had developed on the way to the ER and a fenergryn shot for the indigestion. So I do thank God it wasn't serious but could have done without all the dramatics. If there is a next time, I will ignore it all and take my chances. Life is short enough without all these docs practicing medicine on me.

BTW my bp is back to normal all on its own.
 
Joyce,that was such a terrible ordeal and must have been so scarey.
I am sure you have mentioned that you have had a stroke before so you need to be careful.
Sounds like you need to get properly checked out,hypertention like that (suddenly shooting up then going to normal(a certain type i can not remember)) can be serious.
Do you have a home bp device? if not get one and moniter yourself once a day at the same time,write it down........doing this you can then show your gp who can deal with it or arrange further tests if needed.
Please please do not ignore it........promise?
You need some serious rest for at least some weeks,do nothing other than you need to or keep circulation going.
Do things that relax you,have some you time.
I think you have pushed yourself to the point of exhaustion,that take a long time to get over i know.
Will keep you in my thoughts and will be checking in on you .......dont make me worried.......bp check and rest.
 
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