DO I NEED A WHEELCHAIR????? I CAN'T STAND ANOTHER MOMENT LIVING THE WAY I AM

[cwht04]

Thank you everyone for all the information that I found on this thread, very informative!

[Jim-T]

Carry Things in Wheelchair

There are disadvantages as it has no tray so carrying things is a problem but we'll figure something out.

Hi indulge,
My wheelchair supplier suggested I buy one of those "lap desks." Basicly it is a bean bag with a hard surface attached to it. Haven't tried it yet as I am still waiting for my chair, but it seems like a good solution. The tray that I could order with my chair just looked like it would be inconvenient and in the way.
Best regards,
Jim

[cchamberlain]

Lap Trays

Speaking of lap trays, here is a company that makes them specifically for wheelchair and Rollator users:http://www.mygripsolutions.com/ You can even get things to help you carry drinks on those lap trays without spilling them. I have some of these products in my Demonstration Center and they really work!

Christina

[HereIam]

I'm still here!

Hi all and thank you all so much for sticking with this thread. I see while I've been off seeing specialists you all have been bringing me more suggestions! Thank you so very much

One new topic presented that I wanted to address is the carrying of things whilst in a wheelchair. I am a quilter and general seamstress. I have made a lot of custom carry bags for many walkers and wheelchairs over the years, all for no charge, of course! I'll have to post some in the Creative Center and hope that I will again be well enough to make some for people in need here.

My status is still WALKING WITH PAIN. My right foot turns in a bit further every day I think. I go into tone a bit easier it seems. And, there's not enough oral Baclofen in the world to make a difference. Huh! The wheels of everything move slowly. My neuro has me going to see a Spasticity Specialist located in Braintree, MA. It's not soon enough for me, but is soon, on April 4.

I did a really fun (not) 3 weeks with a Physical therapist who specializes in neuro diseases. First we did stretching of every body part for 3 weeks. Some of it felt good. A lot of it was torture.

Then we moved onto strengthening. Day One: stretch me out and have me do 5 super easy minutes on the exercise bike, with no resistance. I had no trouble with this... Until the next day, when I awoke in the morning to legs frozen in place, knees bent. Oh my goodness the pain!! It took me three days to walk "Normally" again. A friend who is an RN and massage therapist came over when my husband called her in a panic. She had me take Valium and massaged my legs back to moveable. That was the end of PT and was when the neuro got me the appointment with the spasticity doctors. Why we didn't do this 8 months ago is a mystery, but I'll take what ever I can get at this point.

So, those AFO's are still in the closet, I'm still walking and hurting myself madly every day by doing so. I will not cut back making myself walk until I see the Spasticity doctor.

Apparently the new wave of treatment for what I've got is Botox. Can they do my face too? People still utter that horrid phrase "You Look Great!" so I guess I don't need Botox on my face. The neuro says Baclofen pumps are going "out of style" in certain cases, and I may be one of them. The specialist will decide. The neuro thinks that if they can Botox my legs and ankles in key areas, they will get those AFO's on me and I will be able to walk well with a walker, using a wheelchair for longer journeys. And if the Botox works, then they renew it every 3 months and it'll keep the spasticity at bay.

Today I showered and dressed in clean PJ's and am sitting staring at the walls and TV and my knitting for the day, as I was up often during the night with my right foot curled up in tone. In spite of 40 mg of Baclofen. That large dose has left me feeling dead. And, my foot is screaming. But, I did decide to feel clean and dead, so that is something good. To have days like today where one still is motivated to get cleaned up and move about doing easy things like laundry and making a bed, is a good sign in my world. I took Dilaudid for the pain and a massage of my leg and foot from my dear friend, and I shall be napping soon.

Stay tuned, I'll report back in on April 5!!

Blessings to you all, I hope today is a good one for you.

[HereIam]

I had to stop by to close the loop on my end of this story.

I saw my neuro a couple of weeks ago and he's feeling I've had a lot of progression over the last year and announced "Aubagio and monthly solumedrol infusions." And I said sure.

Then the day finally came yesterday, when I would see the spasticity doctors!!! Finally!!! And, I don't have spasticity, I have nerve pain, plain old nerve pain. And it's big when I walk. I cannot tell you how embarrassed I was that my neuro had me take up time at this spasticity clinic. The patients there for treatments are so contorted and stiffened with spasticity it breaks my heart. Now, how a top doc and his Fellow at the MS Partners Center Boston could not tell the difference between nerve pain and spasticity is a mystery to me.

And, since Aubagio can cause Nerve Pain, I will not be taking that. DONE. I walk with pain and with Neurontin, but at least I walk.