slow moving

[faithandlove]

I was diagnosed last month after several years of being made to feel that it was stress and a pinched nerve behind my knee. Now I cannot walk on my own, have problems zipping up jeans and buttoning them (I don't wear them anymore), twitching, and falling. Each month I seem to get worse, but I guess that is expected.

One Neurologist asked me if I wanted him to diagnosed me with a terrible disease such as MS or Parkinson's. I informed him that I just wanted to know what was wrong with me. Finally I was sent to UCSF Medical Center and I had several MRI's, blood tests, EMG's and a very through exam. I will be going back next month for breathing tests.

I am getting my affairs in order. I am, also, very lucky to have a wonderful family who will help me.

I do have many questions, but I will ask them as I go a long.

I'm so happy to have found this site.

 

[Nuts]

Ask away. I can't imagine the frustration of the long wait for a diagnosis (it was unexpected for us), but that wonderful family is going to be very important. Have you checked out the stickies on planning and equipment?

Beckh

 

[Nikki J]

Sorry you have to join us. Look forward to getting to know you. As to questions, ask when you are ready! And be proactive in taking steps to avoid falls. Demand whatever mobility aids are necessary.

 

[faithandlove]

I recently purchased a wheelchair because it is too difficult to walk longer distances with my walker. I use the walker at home. Recently I did not lift my foot high enough (have drop foot in both legs) and fell. I cannot get up once I fall and my husband is disabled with drop foot and a bad back. After crawling around various areas and not being able to get up, I finally went to our bathroom and got myself up using the handicap bars on the toilet and with a little of my husband's help. Because of this, my husband went to a Med clinic and rented a lift for me.

I'm sure I will receive more information from UCSF in June. Right now I was only diagnosed and I need information as to what care I can get and what equipment I need.

I own a 2 story house that I love very much. I do not have a bedroom or full bath downstairs and, when I could no longer climb the stairs, we purchased a stair lift. I do not know how much longer I will be able to get myself on the stair lift. Will my legs just stop working all together some day? If so, should I add a bedroom and handicap bathroom downstairs? Should I sell the house and move in with my son and daughter-in-law? They want me to and stated they will take care of me. Remodeling will need to be done there too.

I'm not afraid of dying. I'm terrified of being a burden. I've always been independent, not much of a complainer, and was considered Super Mom by my family.

Life is completely different now and change must be accepted as graceful as possible.

 

[faithandlove]

Thank you. I will check in this.

 

[soonerwife]

So sorry to hear about you dx. Is there a local MDA chapter? I have heard they can loan you equipment until you can get yours.

Only you can answer what is best for your family. I would say a one story would be much better for your family.

 

[faithandlove]

I just checked the stickies and a lot of questions were answered there. I'll check into a local MDA chapter. Thank you everyone for your kind responses.

 

[KimT]

Please don't be terrified with being a burden. Your user name tells me something about you. Just remember it is a blessing for those who will care for you.

Please feel free to start threads and ask all the questions you need. That's why we're here.

 

[faithandlove]

Again, I am glad I found this site, and will continue to ask the many questions I have.

It is 3 am right now and I woke up coughing and have thick phlegm. I don't know if this is an ALS symptom. I've had this going on for a long time. I get up and fix myself a cup of coffee and watch a movie because I don 't want to wake my husband. This time I'm seeking answers on this site.

Deb

 

[soonerwife]

Some PALS have problems with thick phlegm. I think Alka selzer helped with that? I'm sure someone that knows for sure will chime in soon.

 

[Ells]

Hi Deb & sorry to find u here,

Remedies for thinning thick mucus inc pineapple juice, meds (e.g. Carbocisteine. There are others) using a Nebulizer, increasing intake of water and cutting down on dairy. Using a suction machine is then easier.

Get AFOs for your foot drop asap, for safety. Use Search Function to read about them.

Ells.

 

[Margesmn]

Welcome Deb. I am fairly new to this site also. It has been so wonderful. There is a wealth of knowledge and support here which has already made my journey easier.

 

[faithandlove]

Thank you Ells! I got an AFO for my right foot awhile back, and just got a prescription from the UCSF Neurologist for my right foot. I have an appointment to get fitted for it in a couple of weeks.

 

[tripete]

Taking Alka Seltzer everyday has removed my phlegm issues. It does not help immediately but is a cumulative effect. If you take it today it will be better tomorrow.

 

[sleepy]

Hi Deb

I agree that the loss of independence and the dread of being a burden is harder than the thought of death.

If I work it out, I'll let you know!