Its good to hear from you. Sorry about the decline. I've been there, done that. My pain control is now a disaster. I ended up on a pain pump and it was perfect. However, since I had a lap band to lose weight knowing it would be harder and harder to lug 315# around (I'm 6'5"). Down to 240#, there was some loose skin where the pump was implanted and it twisted around so much it wrapped the catheter so tight that it stopped delivering the fentanyl. I went into full withdrawal, which is far worst than any discomfort from pain. Another one was implanted, all was well for about one year when the catheter (which in attached to ones interthecal spine ( the space between the dura(?) and the spine itself). Once again, withdrawal. I spent about four months while my doctors were trying to figure out whether it was the pump or the catheter. Finally they tried to attach another catheter and I ended up in the hospital with an infection in my spine, not a real bad one, but none of them are good. They finally concluded that, as the vertebrae in my lower back are all compromised by the major surgeries I have had, they couldn't safely install another catheter due to all the scar tissue. I went on a fentanyl patch. Throughout my battle with pain, I can't be trusted with opiates, my addict brain, keeps telling be to get rid of all the pain You can't really do that. Anyway, I'm now detoxing slowly off fentanyl. I hurt like the Dickens but my docs say there are other remedies. I now live in Carlsbad, CA, just down the coast from you. I tire so easily that going to Costco is an entire days worth of energy and two more to recover. Luckily, my wife of 47 years takes up the slack.
Enough of my troubles. I am happy, not depressed, financially ok, and still think I have led a Forrest Gump sort of life. We see our grandsons nearly every day. We lived in Bakersfield all of our lives, except for college and law school. We both had great careers but stupidly sent or son to UCSD and our daughter to SDSU. Neither even liked to visit us in Bakersfield so we bit the bullet (housing prices are roughly 3X those in Bakersfield) and moved here.
Let's keep up some contact. Its nice not to have to explain why you hurt, are fatigued, weak, can't sleep, and are colder than anyone else. Frank
Sorry for the delay; my husband had a medical emergency (he is fine) and of course everything had to get delayed. In Calif. you go to a medical marijuana referral service and get a referral for marijuana. The medical doctor's by law are not really able to advise you about the proper strain for you and your condition. After you get the referral you go to a reputable dispensary that tests the product for pesticides and mold. This is important. You need clean marijuana to get the medicinal effect. One can smoke, vaporize or eat cannabis. I prefer eating because the effect, while taking an hour to realize lasts several hours. Ghee can be made from bud and depending on your condition a tsp every 3 hours will take most pain away and give energy. This "butter" is made by cooking for 8 hours at a temp of under 157 degrees. Many books are on amazon on how to cook butter. A CBD rich cannabis has about 15% Cannabidiol (CBD) and 4-5% THC, therefore there is no high, in fact there is no effect at first accept pain relief. I do well with the Indica strain, which effects the body for relaxation and pain relief but you would need to experiment. one can also take a relaxing Indica call Grand Daddy Purple an hour before bed to relax all the muscles that have tightened during the day. After about 3 months I started to have more energy and was coming off of all other pain medications and high blood pressure medicine under my doctor's care. At 6 months I was I lost 30 pounds and I was feeling like a normal 67 year old. At first my doctor was adamantly against marijuana. After 6 months and he saw how I moved and felt he wanted to know more about the medical benifits. Many studies are emerging that explain how marijuana repairs the nervous system and the neurotransmitters. (too long to explain on this site). I suggest that you to to http://www.safeaccessnow.org/ an internet site that advocates medical use of marijuana and has a library of studies and explanations. There are also medical doctors that specialize in helping the patient but they are mostly research doctors and you won't know what you are getting. Marijuana is not for everyone because it takes research, courage and taking responsibility for your medical condition. I made other changes after 6 months to reduce inflammation in my diet. No dairy, low salt and no gluten, which in the states is in everything. After 18 months I added some vegetarian vitamin b complex (2x a week), a pure omega 3 1000 mg everyday. I made sure that my thryoid medication was gluten free as well. This change further reduced my pain and augmented my healing. All this may seem overwhelming to a person really feeling the effects of polio but by using the marijuana I felt good enough to take the next step and then the next. I still have days (rare) where I am tired but it is because I enjoyed life the day before from morning till night. I recover quickly with a little rest instead of constant rest. My energy level is not perfect but it is so much better that I get unsolicited comments about how good I look, which tells me I really looked haggard before. Hope this helps you on your path. Ricki
Hello: Right up front I will say I am not a doctor and only speak from my research and experience as a PPS sufferer.
Cannabis (marijuana) is a herbal plant that has been used for over 5000 years for healing and euphoria. It contains 66 known Phytocannabinoids and 7 studied terpenoids. It also contains flavonoid and phytosterol components. until recently it was not clear how cannabis worked in the brain or through the body for healing. Now we know that our brain has several known cannabinoid receptors. The virus of polio effects these receptors and the neuro pathways of our brain. These receptors are connected to our immune system and as we age our immune system that has continually fought the polio virus starts to collapse. The collapse starts the breakdown of our system and we begin to experience PPS symptoms, which feels like a recurrence of polio. Cannabidiol (CBD) is one of the 66 phytocannabinoids that have been studied. Another is ^-9 tetrahydrocannabinol (THC), this is the cannabinoid that makes a person high and the most controversial aspect of the cannabis plant. A CBD rich cannabis plant has been produced. THC and the other 66 cannabinoids are still present but the THC is so low that it does not produce any high. The cannabis plant attaches to our cannabinoid receptors and works on our endocannabinoid system. This not only eliminates pain and many other PPS symptoms but it starts to heal the body including the nervous system. Traditional pain medications work on another part of the brain to dull, deaden pain. The body is still deteriorating and then requires more pain meds. More symptoms appear and more drugs are prescribed. I was up to 25 prescribed drugs with no real relief. I was in a wheelchair and constant pain. Hope this helps; see my profile for more information. The switch from traditional medicine to cannabis is not easy; it takes dedication, research, change of lifestyle, and responsibility for your health. Many countries have made the plant illegal or have limited its use to certain conditions. The plant has been reduced to pill form in many countries and only contains THC, which is still being studied. Cannabis is not for everyone and must be approached with respect and care.
Cheryl. When I lived in California, I first went to a Neurologist who was at Loma Linda U. He is no longer in practice. When I moved to the Bay area I found Dr. Michael Bierlly, (I'm not sure he spells his name that way, or even sure that he is still in practice) who practiced in Palo Alto. He was a Physiatrist, and one of the first ones to have this specialty, I think. I have been giving out this web site to help people find a PMR (Physical Medicine and Rehabilitation or Physiatrist) Dr. in their area. Fortunately there are many Physiatrists now. The site will explain what kind of Dr. a Physiatrist is and you can click on your state and it will give a list, by town, of Board Certified Physiatrists in that town. Hope this helps. https://www.e-aapmr.org/imis/imisonline/findphys/find.cfm
When children who had polio get pregnant they can't pass on to the unborn child 100% what the child needs. But whether thats all types of polio I don't know. I had bulbar and acute paralytic, so really only take note of data that applies to me, unless someone else has asked before I do the research. Tessa has quite a bit of information about it on the WA polio site.
Tessa's husband had polio; not sure when he died. Tessa is affected by a grandfathers polio, my children have been effected, and at least one grandchild. The polio virus can't pass on to our children, but polio killed many things in us, so we can't pass on what we normally should to our kids. The WA web site has a section for children of polios. Not all children are effected.
Hello Cheryl, You asked if PPS is always progressive; I'm not positive, but think that if we don't over use our bodies we can slow it's progress to almost nothing. I do my best, but don't live in a house where I can use my wheelchair everywhere, so I do over use. I'm hoping that my application for for a wheelchair friendly flat provides me with the ability to stop the rapid deteriation that is happening now.
You should contact the editor, Rick Van Der Linden at: email@example.com and ask him to put you on his email list for future newsletters. He has been so helpful and I know he would be happy to include you.