Mike Purcell
Forum Replies Created
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You’ve got it right. The roll in shower is a key for a truly accessible room. I haven’t traveled in some time but did 2000 through 2010… The roll in shower is key because that is followed by other features that benefit a person in a chair. For instance desks. The one thing I had the most trouble with was beds… When I could no longer manage things by myself I started using a get you get–up–lift (with help from my wife). The issue is being able to get the legs of the lift under the bed. Most hotel beds are on solid platforms which cause problems getting the legs of the left under the bed. There is not a solution at a standard hotel which I found. You can find typical beds (with legs) at many Air B&B rooms. For someone who has never used Air B&B – it’s more like an apartment room than a hotel room. (Which come with other issues) I found that they are quite reasonable providing accessibility details about the rooms. Hope this helps anyone traveling.
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I do not mean to sound flip. Here’s what I know and some of what I think. MS is not easy. I was told initially by my neurologist – the good news is MS won’t kill you. – The bad news is MS won’t kill you. Now, I’m not sure if he thought he was being funny… But, I certainly did not find his comments funny.
25+ years – initially diagnosed in 2001. PPMS. It has been a long grind. I’m still here. Not ready to or willing to give in/give up.
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Here’s my take… I too have been using cannabis related stuff for 50+ years. (Currently 65) I too get it quite easily & legally. I have used CBD, edibles & smoking. I find it helps me best when I smoke it… Just a puff for two with my coffee in the morning. It helps me with spasticity. Fortunately, I don’t experience a lot of pain… My stuff just doesn’t work.
It helps with the stiffness/spasticity. I find that when I smoke it I can control the effect better. Hope this helps. Let me know if you have specific questions. Good luck!
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I read your post before. This time I needed to reply. I enjoy an oil can (Fosters) most every day. I don’t believe I would give it up at this point.
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Regarding Ocrevus… Did you see?… I recently saw study results on Ocrevus specific to PPMS and that it was proven not to do much of anything (DMT) related. It didn’t seem to do much in the way of slowing progression.
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I can say without hesitation that in 25 years the only improvement/remittance that I’ve experience is because of exercise. For me it was a Catch-22. As it got harder… I did less and less until I couldn’t do it anymore.
20+ years ago I spoke with the person who also has MS, who told me that he exercised every day. He did because a person he knew with MS said without a doubt it help them
Specifically, working out with heavy – heavy weight. Low reps with extremely heavy weight versus high reps and lighter weight. I suspect it helps your nerves ability to conduct the electrical pulses.
Also, based on an experience I had – and input from Doctor – I used a vibration device called a PowerPlate. Vibration technology was developed – as the doctor explained to me – by the Russians for exercise in space by their astronauts. Without going into too much detail here – if interested you should look into it. My experience was that after using a PowerPlate in his office I experienced some benefit. Benefit to the point I purchased a PowerPlate.
Another Catch-22 for me… I can only use it with someone helping me. Net/net – I didn’t use it enough until I couldn’t use at all.
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So, if I understand correctly… This is a SubQ injection. How many? Can you do them yourself? Twice a year?
I was doing the Ocrevus infusions but stopped early 2020 mainly because of Covid. My experience (only) with Ocrevus was:
1) I was waiting for an AHA moment… hoping for… Which never happened. I experienced no improvement. (PPMS – 25+ years). With all of the uncertainty that Covid brought I stopped. I understand that I was not to see/expect a noticeable improvement.
2) Maybe a possible side of fact which I did experience was the shingles.
3) I don’t suspect 1 had anything to do with the other but over the last 5 to 10 years I’ve lost much of the ability use my hands and fingers.
I would consider Ocrevus injections after discussing same with my neurologist. Anyone else doing the injections?
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Nothing medical
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The state offers public transportation you can register for. The vehicles are able to transport wheelchairs or power chairs. The issue is scheduling/timeliness – meaning they’ll get you to an appointment on time but may need to pick you up extremely early… So, if you have an 8 AM appointment you may be picked up at 6 AM. The same is true for your ride home. The appointment maybe over by 10 AM but you won’t be picked up until. Also, since it’s public transportation riders are grouped. It may take you all day for a one hour appointment.
There was a company – Mobilityworks – that rents, leases and sells vehicles. (Vans) I did all of the above and finally purchased a used van. The vehicles are modified to facilitate people in wheelchair. They can also be configured so the person in the chair can drive . I don’t drive. There are different devices for driving and tiedown. Hope this helps some.
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Ben: I can’t comment on this specific use but I can comment . A past physical therapist took it upon yourself to purchase a battery driven machine used to stimulate muscles. I used it on both my legs and my arms. I used it for good 6 months and then lost interest. So I can’t comment on uses beyond…
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I went to your blog. I subscribed or whatever it’s called and look forward to your future posts. Congrats!
Me too PPMS. It’s been a long slog… Initially diagnosed in 2000. I’ve tried most every treatment and then some. I have been stung by close to 3000 honeybees… Acupuncture, NAET, tapping, physical therapy, etc.
Keep musing along…
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I encourage you to do it if you’re up to it.
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You shouldn’t. I kind of did. (PP MS) I was diagnosed in 2000 and for the most part continued trying to be as normal as possible for as long as possible.
I was told by another MS person that I should work out with heavy – heavy weights and I didn’t. I should have. I also turned to mobility aids only as a last resort. Being stubborn only hurt me.
I have been on this MS journey for 25+ years. It’s not easy as I’m sure you know. Don’t take for granted anything and work hard to stay mobile. Good luck
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Ann,
To me, it really wouldn’t matter. Here I am. MS for 25+ years. I don’t know of anyone I’m related to with MS. I wanted to reply to be a good MS Society – message board participant. I hope you’re well.
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Ben – I must be doing something wrong. I still don’t think I received it.
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I learned a lot about accessible vans. It took me some time to get on but you have options. You can rent one if you like to get used to it. The place by me it’s called MOBILITYWORKS. They rent, lease, sell and service vans. It’s not for everyone but it’s an option.
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Please send it to me again
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Anything I can do to help
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I’m not too high on DMT’s. There something fundamentally incorrect to me about slowing down your immune system. Personally I am waiting for remylination and stem cell therapies.
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Thank you for your response. I so appreciated it. I’m dependent on voice control capabilities. My neurologist will support anything I need (I believe).
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Tell about the online options you are aware of.
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So far I think Penn State World Campus (something like that) is their online stuff. What do you use for voice control?
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I did Ocrevus. About 6 infusions. The 1st 2 infusions are half doses.
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Ben:
I think we are both similar. (EDSS, time with MS, caregivers – etc.) I would like to be able to communicate directly outside the view of this board. If you’re agreeable to that how best we do that?