Austin
08-01-2001, 06:30 PM
Nice to meet you all. I have read all your very knowledgable and informative posted messages. I appreciate your attention to other boards and posting new observations here. Your insights and opinions are very helpful.
My mother, 74, has been diagnosed with PD for 2 years.
I am having her see a MDS in two weeks as you all suggest. She is on Sinemet 3x/day. She has the unfortunate symptoms of loss of energy, imbalance, freezing and it takes alot of effort to do any task.
She has tried Slegeline, Mirapex and Requip for a few days each but got nasuea. I understand these may take weeks to be effective. Will check with MDS.
I am positive with her but the lack of progress against the symptoms gives one a feeling of hopelessness. I am trying to get her through this period until a better treatment is here which I feel will be soon.
I heard of a man got a beneficial treatment for himself. It involved three one-hour sessions in a hyperbaric oxygen chamber to increase oxygen and circulation in his body. He then got lamb stem cells injections in Mexico and he feels much better than before. Apparently, animal cells after about four days are not species specific and thus are interchangable. The lamb cells can grow in a person as if they were his own to restore the damaged cells from PD.
Have any of you all heard of this? Also, How does someone participate the Amgen clinical trials? Are only a select few allowed?
Always, the best to you all, Austin
My mother, 74, has been diagnosed with PD for 2 years.
I am having her see a MDS in two weeks as you all suggest. She is on Sinemet 3x/day. She has the unfortunate symptoms of loss of energy, imbalance, freezing and it takes alot of effort to do any task.
She has tried Slegeline, Mirapex and Requip for a few days each but got nasuea. I understand these may take weeks to be effective. Will check with MDS.
I am positive with her but the lack of progress against the symptoms gives one a feeling of hopelessness. I am trying to get her through this period until a better treatment is here which I feel will be soon.
I heard of a man got a beneficial treatment for himself. It involved three one-hour sessions in a hyperbaric oxygen chamber to increase oxygen and circulation in his body. He then got lamb stem cells injections in Mexico and he feels much better than before. Apparently, animal cells after about four days are not species specific and thus are interchangable. The lamb cells can grow in a person as if they were his own to restore the damaged cells from PD.
Have any of you all heard of this? Also, How does someone participate the Amgen clinical trials? Are only a select few allowed?
Always, the best to you all, Austin
Sponsor
Bernie812
08-02-2001, 09:47 PM
Austin,
You're doing the right thing by going to an MDS. If your mother hasn't seen one yet, it's time. PD can be very diferent from person to person. Most PWP's will have to go through some experimenting before finding the right combination of meds. Even after you find the right combination of meds you still may have to play with the dosages to find the best relief. It takes a real trained eye with experience to guide you through this. This is why the MDS is so important. Very often an adjustment in meds or changing to another can make a world of difference. The combination of sinemet & mirapex really smoothed things out for me, but I'm much younger (45) and in an early stage. Sometimes having a little snack with a med that makes one nauseous helps. Nausea can also pass after a few days. Talk it over with the MDS.
REMEMBER to write your questions down before you go. AND take notes when you're there.
My advice........steer clear of the experimental treatments you mentioned in your post. They are not acceptable PD therapies. Your mother's going through enough. BESIDES....you don't want to expose your mother to some serious side affect from an untested treatment. She needs expert care. Give the MDS a chance. This includes anything to do with stem cells. It's all still in the experimental stage.
The Amgen study you mentioned just completed phase 2.
The results were less than great. It's very questionable if the study will even continue. The National Institute of Health (NIH) has a website. Search thru Google you'll find it. They post all the latest clinical trials. Your MDS can fill you in on this, too.
Good Luck Bernie812
You're doing the right thing by going to an MDS. If your mother hasn't seen one yet, it's time. PD can be very diferent from person to person. Most PWP's will have to go through some experimenting before finding the right combination of meds. Even after you find the right combination of meds you still may have to play with the dosages to find the best relief. It takes a real trained eye with experience to guide you through this. This is why the MDS is so important. Very often an adjustment in meds or changing to another can make a world of difference. The combination of sinemet & mirapex really smoothed things out for me, but I'm much younger (45) and in an early stage. Sometimes having a little snack with a med that makes one nauseous helps. Nausea can also pass after a few days. Talk it over with the MDS.
REMEMBER to write your questions down before you go. AND take notes when you're there.
My advice........steer clear of the experimental treatments you mentioned in your post. They are not acceptable PD therapies. Your mother's going through enough. BESIDES....you don't want to expose your mother to some serious side affect from an untested treatment. She needs expert care. Give the MDS a chance. This includes anything to do with stem cells. It's all still in the experimental stage.
The Amgen study you mentioned just completed phase 2.
The results were less than great. It's very questionable if the study will even continue. The National Institute of Health (NIH) has a website. Search thru Google you'll find it. They post all the latest clinical trials. Your MDS can fill you in on this, too.
Good Luck Bernie812
Carrotcake
08-02-2001, 10:34 PM
I concur with Bernie. My Mum is 77 and has had the same symptoms that you describe. It is very likely that the MDS will increase her dose of Sinemet slightly and/or switch to Sinemet CR. Agonists such as Mirapex, Requip, need to be titrated very slowly and monitored carefully so that the nausea and subsequent vomiting does not lead to dehydration especially for an elderly patient.
When you see the MDS, also ask about using Amantadine (also known as Symmetrel) especially if your Mum is having dyskinesia. It may help her like it did with my Mum.
Hope this helps. Please come back and let us know how the visit with the MDS goes. Good Luck!
When you see the MDS, also ask about using Amantadine (also known as Symmetrel) especially if your Mum is having dyskinesia. It may help her like it did with my Mum.
Hope this helps. Please come back and let us know how the visit with the MDS goes. Good Luck!
Googy
08-02-2001, 11:17 PM
Welcome Austin,
The info you got is the best!!.Your mother is very lucky to have such a caring daughter and I know will do well with current meds.Always stay away from the unknown.
Love,
Googy
The info you got is the best!!.Your mother is very lucky to have such a caring daughter and I know will do well with current meds.Always stay away from the unknown.
Love,
Googy
Bruce
08-03-2001, 06:21 AM
Austin, my main studies in college involved a strong emphasis on immunology. and unless the patient received anti rejection drugs,which would neutralize the immune system, injecting lamb cells into a human, wall cause an immune response and the cells are certain to be rejected and would not survive in the body very long.
Bruce
Bruce