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My husband has recently been diagnosed with primary lateral sclerosis. Is there anyone else who has or is caring for someone with this disease?
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primary lateral sclerosis
- By 280696
- Posted June 14, 2007 at 12:13 pm · 7 replies
- In Tips for caregivers
- Shared with the public
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- By Valerie4
- Posted June 15, 2007 at 8:26 pm
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I have PLS. there is also a website : SPF - Spastic Paraplegia Foundation That can help. I have found the support group helpful too at http://groups.yahoo.com.
How is your husband doing? Hope this helps.
- By 280696
- Posted June 16, 2007 at 10:48 am
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My husband is still in denial. He was diagnoised in March of this year. He has always done everything for himself and now he is dependant on others. He is working with PT & OT which is helping some.
How long have you had PLS, if you don't mind my asking? Would you mind if I keep in touch with you?
I have contacted both of the organizations you mentioned. For some reason, which I am trying to figure out I get e mails form SPF which are bits & pieces of discussions.
- By MsGray
- Posted November 2, 2008 at 3:28 am
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I am a 53-year-old female diagnosed with this condition a little over a year ago. I have difficulty walking. I started out with a cane and am now using a walker to ambulate. I am working with an Acupuncturist, having lost faith in a medical community that insists that there is nothing that can be done. Through acupuncture I have regained my balance, but still cannot walk unassisted. I would like to locate a research/ clinical trials type of program and receive updated information regarding treatment from the neurological community. I am able to drive, and am employed full time. I am just unsure as to how long I will be able to continue. I have vowed to get better and not give up. If you have any medical information to share regarding this condition, or just want to discuss your concerns or victories please feel free to contact me at any time.
Cheryl
- By MsGray
- Posted November 2, 2008 at 3:37 am
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Valerie,
May I ask how long you long have you have had PLS? It has been a little over a year for me and I feel helpless. My legs are primarily affected - I do not have any symptoms in my arms, yet, though I am told to expect that. Thank you for the references, I have recently determined that I need to connect with others fighting the same battle. There is so much unknown, but perhaps sharing resources and information will be encouraging.
Cheryl
- By Valerie4
- Posted November 2, 2008 at 5:19 pm
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Cheryl,
I have been dx about 2 years now but symptoms for 8 almost 9. I use a walker full time, I'm still strong just balance and my left side i somwhat weaker. My speech is I'm impaired.
http://www.patientslikeme.com, and
PLS-FRIENDS@yahoogroups.com
is also a good resource for other people with PLS., Where do you live? I live in CA go to UCLA for Neuro.
I have faith in God not in man altho I do believe God uses doctors and others in the health industry. We have to be wise and seek out what is good for our bodies, as you have said. It helps if you have a Neuro that will listen to your ideas if you don't get a new one :)
hope this helps,
Valerie
- By Valerie4
- Posted November 2, 2008 at 5:22 pm
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Hi, check out these helpful sights.
http://www.patientslikeme.com,
PLS-FRIENDS@yahoogroups.com
- By KMcK
- Posted November 9, 2009 at 1:58 pm
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Hi Everyone
My father was diagnosed with PLS some years ago and things are getting worse. He's inbetween using a walker and wheelchair. What seems to be harder to deal with is the anxiety and extreme panic attacks he suffers. The attacks get so bad he becomes paralyzed until the episode passes. Does this happen to anyone else with PLS? And if so what has been done to help? Medication does not seem to be working for my father.
Thank you.
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